Linda Andre’s New Book, “Doctors of Deception: What They Don’t Want You to Know About Shock Treatment,” Just Out From Rutgers University Press!

If you buy and read only one book on ECT, this should be the one. Andre is not only a survivor of ECT, but has spent the past 25 years listening to, and documenting the experiences of, other survivors. With her exhaustive knowledge of what passes for scientific research on the subject, and an insider’s knowledge of the politics behind that “science” as well as the pronouncements of supposedly trustworthy authorities like the FDA, no one is more qualified to demolish the claims of the shock industry. Andre does so with thoroughness, style, and even wit. Everything she says is documented, but never before has all this information been gathered in one volume.

The book vividly brings to life the multifarious personalities who have battled over ECT–what it is, what it does, what should be done about it. As she says, no fiction writer could have dreamed up such characters. Her description of the decades-long battle between ECT survivors and organized psychiatry over whether shock should be investigated for safety is particularly riveting. That story is published here for the first time. Andre explores why and how the media is biased towards shock (with painful examples from her own experience); explains why forced shock is more prevalent today than before laws which were supposed to ensure choice; tells you exactly why the ECT research you pay for with your tax dollars can’t be trusted; and takes apart every plank of what she calls the industry public relations script to show that every one is a lie.

If you ever wondered how the shock industry has gotten away with damaging brains for profit for over seventy years—and how it continues to do so successfully and with supreme arrogance—this book is the answer to that question.

From the publisher:

DOCTORS OF DECEPTION: What They Don’t Want You to Know about Shock Treatment (Cloth $26.95, 978-0-81354441-0, February 2009) by Linda Andre is the first history of electroconvulsive therapy (ECT), or shock treatment, to consider the controversial procedure in a social, legal, financial, medical, and moral context. Through the investigation of court records, medical research, FDA archives, and other primary sources, Andre shows that claims of safety and efficacy made by doctors who promote and profit from ECT are not supported by science or evidence. She reveals how the shock industry and organized psychiatry abused public trust and waged a masterful, multi-decade public relations campaign to improve ECT’s image, deceiving the media, the government, and the public about its risks while exploiting negative stereotypes of mental patients to silence survivors.

DOCTORS OF DECEPTION documents the struggles of these former patients and their allies who have worked for over thirty years to inform others about the dangers of ECT, and includes vivid firsthand accounts of its permanent adverse effects on memory and cognition. Meticulously researched, DOCTORS OF DECEPTION builds a solid case that ECT can never be justified scientifically, medically, or morally.

You can buy the book at the Rutgers University Press website,

http://rutgerspress.rutgers.edu/acatalog/Doctors_of_Deception.html

You can buy it and write reviews on amazon.com and bn.com, and ask your local bookstore to carry it.

Comments (179)

Nadia BehrFebruary 14th, 2010 at 2:05 pm

Linda Andre’s book is brilliant. She is the first person to step forward and share her own personal experience. Many people suffer the long term effects from ECT and suffer in silence because of the stigma attached.

As someone who has experience working on class action suits I am aware it only takes two people to start one.

I am an advocate of psychiatry and feel it is in the best interest of physicians to educate themselves on the facts now surfacing about ECT.

Linda Andre’s book is successful in bringing attention to a subject that many physicians turn deny.
Now that Linda Andre uncovered the long term effects associated with ECT hidden in court records, medical documentation and FDA archives physicians can no longer turn their backs on this subject. “Ignorantia juris non excusat” or “Ignorantia legis neminem excusat” (Latin for “ignorance of the law does not excuse” one. Simply put; physicians are now in a position where they can be held liable.

Thank you Linda for bringing this subject to light.

Nadia
nadiagw88@gmail.com

PaulApril 2nd, 2010 at 10:28 am

I just had eleven ECT treatments for bi polar. It was used to treat my compulsive nature with gambling and my depression. It seems to have worked as I don’t feel depressed. I am having trouble with short term and long term memory right now. I really do feel better. My longest seizure was only 34 seconds but they said the Dr was happy with the results. If anyone can give me more insight and feedback it would be welcomed. Today is Friday and my last treatment was this past Monday at St Joseph Mercy Hospital in Ann Arbor Michigan. I was in the day program at Arbor Wood at St Joes. It was done by Dr A. Ramirez

Roger StockhamApril 5th, 2010 at 4:10 pm

It’s been about six weeks since I finished a month in a VA hospital where I had eleven treatments. They sent me home on a lot of psych meds and for the next three weeks I felt worse than I ever did before my suicide attempt that promted the hospitalization. Then I began weaning myself off the meds and started feeling better, slowly. I’m finally what I call all the way back to a better state of normal than in many years. My memory is better than before, and the weirdest thing is that I’d been sexually disfunctional for the previous ten years – but now I’m fine, and I’m 62. It kicked my ass, but now seems worth the grief.

JohnApril 8th, 2010 at 9:18 pm

Hi , I am a long term survivor of this ” therapy ” . It shattered my life . It was used to erase memory in my case as well as adolsecent behaviour modification . This was done in the mid sixties . Since this horrific period in my life I have tried to contact as many survivors as I could of this doctor that harmed my life in his chase of money . It has been hit and miss over the years but in talking to many people I have not found one that said this man helped them or their families . Not one . Maybe in the right hands this can have value . In the wrong hands it is ugly . I have seen it first hand . I have no doubts the things I have seen go on today in some places . You dont hear about those stories on 60 minutes . All you hear about is how wonderful it is

Teresa RobertsApril 16th, 2010 at 1:48 am

I was given electric shock treatments without my consent or knowledge in 1980.I actually went to the emergency ward with severe stomach pain.The Doctor put me in the psyche ward.I was 22 , the Doctor told my mother that I was suffering from depression and thet electric shock treatment might help.My mother signed the papers and she admits that what she did was illegal.My life has not been the same scince.There is a lot that I don’t remember.I also have isolated myself over the years.I was diagnosed as bipolar,I feel that even though this happened 30 years ago that I have the right to sue.I really don’t know what to do.I know that my life would have been totally different if I didn’t have this treatment. Any suggestions?

Nadia BehrApril 16th, 2010 at 2:51 am

If you have MRI’s or Pet scans of your brain before the treatments and go to a neurologist educated in this area he will compare slides of your brain now with old scans to determine if the deterioration in the hippocampus stopped. If your memory remains a problem and he notices deterioration in this area your neurologist will consider putting you on a medication that will hinder the progression of deterioration to the area effected. Linda Andre’s book does not discusses the problems that arise from ECT but does not provide solutions, cite physicians who can help in this area.

Does anyone know of any sites or books that may provide information that will enable survivors of treatment to move forward with neurological care, and what steps to take to be proactive in preventing further deterioration?

This would be helpful to everyone and provide more hope to the survivors.

JohnApril 19th, 2010 at 1:54 pm

In response to Teresa . You cant sue the garbage that did this to you . They are protected by the statute of limitations . As far as I know the only thing I know that is not subject to this statute in america is murder . Other than that give it seven years and there is not a thing you can do .

SharonApril 21st, 2010 at 5:21 pm

I had ECT in late Febuary early March. I am still experinces severe disruption of memory. Almost all of the last year is lost. I can only figure out what happened in 2009 by reading my own emails from that time period. I am very disheartend. I feel alone and with no one to talk to about the memory loss as my physician sort of blows it off. It did not work at all for the depression and I actually got worse becasue I had to stop my lamictal. Then I had to titrate myself back up on lamicatal to a therapuetic dose. So not only was it a failure it has left me with a severly damaged memory. How am I supposed to go back to work like this.

SharonApril 27th, 2010 at 9:02 am

I am ashamed to admit that I’ve had ECT. I am trying to get a question answered but to no avail. I had 3 Bilateral ECT sessions and was on 300mg of Lamictal while they were inducing the seizures. This makes no sense to me. I am more depressed since the procedure and feel I had cognitive difficulties (memory/vocabulary). Why didn’t they take me off Lamictal (was on prior for at least 4 years) to the ECT treatments? Thanks anyone?

Judy SugitaApril 30th, 2010 at 1:19 am

Sharon, I’m currently on maintenance ECT. I too am on 300 mg of Lamictal daily. Because Lamictal can interfere with the seizure caused by ECT, thereby lessening its effectiveness, my doctor told me not to take it the day before treatment. I also have been told not to take another drug, Topamax, the day prior to ECT for the same reason.

NathanMay 2nd, 2010 at 8:51 pm

My Wife had ect just over 2yrs ago now, she had 12 hits in total and not much has changed her moods have settled abit but the fatigue and memory loss is the most worring part.She sleeps avg 18 hrs/ day and forgets what she is doing and gets distracted very easily. After the ECT she went back to Mental Health and they just washed there hands of her saying nothing else we can do. When i brought up about memory loss they said not from ECT. They others who had ECT with her had the same response from doctors. I can understand all your frustration and i fell for your partners, they need to give more info before the treatment and more support afterwards. We are in Queensland Australia and there is no support from the doctors who do the treament. Hang in there every one.
thanks

LeahMay 3rd, 2010 at 3:34 am

I had ECT for 2 years, it started at once a week and then went to 3. I have no memory of my life at all. I lost all my work skills also. I know I would not have survived without it. It has been a year since my last treatment, and I am no longer depressed. It is hard not to have any memories of my life but it did save me.

I just wish I had someone to talk to about it, there is no support like Nathan said.

Stay strong xx

Teresa RobertsMay 3rd, 2010 at 1:46 pm

To Leah,

I am sorry that you are going through all of this alone.Have you ever thought of starting a support group? you might mention this to your Doctor and he could somehow help.
Although my life changed, I still managed to reach my life time goals and I wrote a book
called Walking on Eggshells, I was so ashamed of what happened to me I used the pen name Erin Quinn.In the book I discuss how I was given electric shock treatments without my consent or knowledge.If anyone wants a copy of this book they can google Walking on Eggshells By Erin Quinn and order it.I think it is a real eye opener about what happens in
hospitals.

J's kidMay 7th, 2010 at 7:22 am

My mother checked into the hospital severely depressed and delusional. The docs tried every med possible, but nothing worked. After a month of this, we finally convinced her to try ECT. It was the only thing that actually worked, that pulled her out of her incredibly deep hole so that the mess and talk therapy could begin to work. I don’t know where we’d be w/o ECT.

RobertMay 25th, 2010 at 1:07 pm

wow. what a diverse set of experiences with this tx. After a lifetime of mostly untreated depression coupled with chronic and acute back pain, at 53 I’m really burned out on low quality of life. The meds I have tried haven’t done much and most made me worse. I’m seriously considering ect and it obviously is a serious matter. Losing life/work skills and memory is a huge risk. I am deeply moved by the testimony of those who have had this forced on them and been damaged with dismissal at the end! Also hopeful at the responses which indicate improvement. At least I have a conscious choice about it.

ResearcherJune 11th, 2010 at 3:28 am

Regarding ECT with depression, consider this;

* Neuropsych studies demonstrate that patients with depression exhibit reduced functioning within an array of cognitive domains, including attention, executive cognition, episodic memory, explicit verbal and visual memory, visuospatial learning, reduced response to positive/ joyful information and more
* Studies using SPECT, PET and functional MRI technology have reported reduced neurophysiological activity in brain regions known to support cognitive functioning in people with depression, in line with the cognitive reductions. E.g. studies of performance on challenging cognitive tasks and of the ”basic resting state” have documented a reduced blood flow in the anterior cingulate and dorsolateral prefrontal cortex in depression (two brain regions central to “executive” cognitive functions”
* ECT further reduces cognitive functioning in recipients
* ECT further deranges activity in executive cognitive networks of the dorsolateral prefrontal korteks, anterior cingulate and more
* The degree of behavioral changes following ECT correlates strongly with the degree of cognitive derangement and with the degree of neuropsychological derangement

It appears to me that ECT leads to a “functional lobotomy”, suggesting it cannot be a treatment for anything. Instead one might expect the exact opposite type of intervention to aid in depression, that aims at restoring cognitive and neuropsychological functioning.

DavidJune 17th, 2010 at 10:00 am

My doctors are trying to push me into this “ect’ after years of depression. My depression and mostly anxiety have only been mild for most of my life and just more severe the last 6 months. I have not tried that many drugs. Any help or direction would be appreciated, PLEASE!
Thank You.

ChrisJune 18th, 2010 at 4:30 am

I have had only 5 treatments so far… my sixth is scheduled this a.m. I am scared to death trying to figure out what to do. I feel like I am constantly on the edge with no way out. I pray for the right decision…

Dipen HariaJune 20th, 2010 at 8:08 am

My wife is hospitalised & the doctor has asked for the ECT treatment??? Reading on with the comments i am scarred should i go for it no not. Please help?????

KarenJune 22nd, 2010 at 11:17 pm

I have had a bipolar epidode since April and the usual medications have not worked very well. My Doctor is pushing me to have ect and has sent me for a second opinion which I have no doubt will suggest the same. Over the years while hospitalised I have watched people go off for ect, come back wrecked and confused, get discharged and then 4-6 weeks later come back as depressed as they were before, for more ect. What a life! Iwill NEVER have ect and have made my daughter my power of attorney over medical decisions and she would never consent to it. I have heard from patients that have had ect that they can’t remeber their child’s wedding or graduation from uni etc. etc. and these events are after ect. My doctor tells me I may have some TEMPORARY loss of memory of the month pre and post ect and I just don’t believe her. I’ve seen enough to draw my own conclusions.

Mark SchmidtJune 26th, 2010 at 5:00 pm

I aamagedm considering a lawsuit due to the negative affects of ect. does anyone know how to proceed? Any lawyers specializing, class action suits etc.

I have been horibly d

LeahJune 26th, 2010 at 9:12 pm

There is so much negative comments regarding ect. I just want people who are trying to decide If It is for them there are good outcomes. Yes there are side effects and they can differ person to person. I had a very large amount of ect for a extensive period. I lost my entire memory, however I no longer feel the extreme physical and emotional torment of depression and anxiety. I have been able to laugh, smile and enjoy things. I am no longer worrying the people I love. I am very thankful for the treatment. All other alternatives were tried and tried again with no positive results. I took the risk and thank god everyday for the freedom ect gave me. When deciding if ect is for you please know it can really help. Memory loss and other side effects are not as common as forums display. Do your research, talk to your proffesionals and do what is best for you……. I did.

JackieJuly 6th, 2010 at 10:15 pm

I have a cousin who I am helping care for. She has been depressed for the past 6 years and severely depressed for the past 3 years. She has been on every kind of depression medicine you can name and all have proven to be ineffective. She was recently hospitalized and the docs have mentioned ECT as a last resort. I am researching and reading up on this procedure before I make a final decision. It seems as though there are mixed results about the therapy. Any advice would be well appreciated!

Thanks

DawnJuly 9th, 2010 at 11:50 am

Hi, My physician and psychologist believe I should have ECT therapy because for the last two years I have been dealing with PTSD and Major Depression. I have been on a variety of anti-depressants and anti-anxiety medications for two years now and have been told I am resistant to the medications. I have had this problem with other medications in the past so it doesn’t surprise me. A large majority of the posts that I have read are from treatments 20-30 years ago. I have the understanding that the procedure has changed a lot over the years. I have an appointment to speak with a specialist about the procedure and am looking for feedback from people who have had this procedure done more recently and for Major Depression. I don’t want to lose my entire memory and I can not live without cognative abilities. I do have a family to support and bills to pay and without these abilities I would not be able to do my job. Anyone with positive responses would be appreciated.
Thank you.

MichelleJuly 20th, 2010 at 2:23 pm

I’m currently having ECT at my own request for the worsening of my depression. I have had it many times in the past, and have recommended it. It is not a decision to take lightly, but it can be a life-saver for some people. I have what is called treatment-resistant depression, and Zoloft is the only medication that has ever worked for me, or anyone in my family. I take 200 mg a day. I also take a couple dozen other meds because I am allergic to the Zoloft. I sought and received a Vagal Nerve Stimulator, which has helped a lot. The reason I’m back in ECT now is we thought maybe I could finally stop the Zoloft. That backfired. Oh well. I’m glad it’s available, but definitely, go into any decision about it carefully informed and know there is always a risk. A friend of mine had it and lost her entire memory, as well as her sign language skills and became completely unable to work as a sign language interpreter for several years. She finally regained most of her memory, but it was a terrible experience. One thing that was a factor was that she hadn’t told her doctor everything that was going on, and she had an underlying mental disorder that made ECT a bad choice, which the doctor didn’t know about. So information is power, know the risk and consider them carefully.

TammyJuly 21st, 2010 at 2:32 am

I had ECT 12 yrs ago after several antidepressants not working. At the time I was suicidal and cried all the time. My Dr. Told me I may have a little memory loss from around the time of the tx but it should all come back. I agreed and had 14 txs. My depression improved, I became numb to it at the time. My memory…I have lost a lot of my childrens childhoods. My head still feels foggy and my memory now is suffering. I have a hard time staying focused. Things have to be repeated several times for it to stick with me. I have relapsed into depression and have been hospitalized at least 3 times since. I am fearful of totally losing my cognitive abilities as I get older.

Jill CrookallJuly 21st, 2010 at 6:01 pm

I,ve had treatment resistant depression for 20 plus years. Now i,m researching ECT. I,ve gotten the rosy pictures and buffered statistics from the hospitals and other proponents. The statements i value more are from the patients and their caretakers, and those seem to be overwhelmingly negative. I don’t seem to be able to find any sites that show me how to talk to anyone in person, support groups, etc. I would appreciate direction to ANY site that has positive responses just so i can see if there really ARE any substantial pleasing results out there.

RetiefAugust 26th, 2010 at 3:57 am

If you are considering ECT, don’t rely on what you read at this website since the website owner is offering medical advice without any qualifications whatsoever. Cutting and pasting selected articles and encouraging anecdotal comments which may or may not even be from people with actual ECT experiences is not the sort of action a loving or responsible individual would take.

The owner of this website, Juli Lawrence, has certainly contributed to a number of deaths by suicide, including that of my sister who referenced this site in her suicide note. I will tell you with all certainty, that ECT is an alternative to suicide and that this sort of fear-mongering works against making a rational choice, especially if you are on the ragged edge when you read these postings. I, personally, respect the right of an individual to decide to end his or her own life when the pain is unbearable and there is no hope. However, ECT works for some people, and it might have worked for my sister. Many suicidal individuals will visit a site like this one. Persuading a suicidal person that ECT offers no hope is like handing him or her a loaded gun. Juli Lawrence ought to consider that.

ResearcherAugust 26th, 2010 at 10:26 am

Wow. That is what one might consider an attempt on an authority expression from Rethief.

Please sir or madam, do consider reciting evidence, within an appropriate discipline understanding, we are talking about those with mental health problems and the best evidence based treament. Within this, ECT has provided a total failure, whether the victim is diagnosed with depression, suicidality, depressive psychosis, schizophrenia or others. There is no evidence in the scientific literature that ECT works. On the contrary, it is clear that ECT weakens cognitive functioning, seen very clearly in memory, but also in attention, ability to perceive and comprehent the scenario etc. When you look at the brain, it is clear why this is so, the intervention weakens basic neurophysiological functions supporting cognition, go read.

If a person suffers strongly in life, feels it as hopeless, and things about suicide, there are many options available to getting your brain fried by electricity. Big chance is that suicidal means wanting to escape from life, there is too much pain, maybe a cry for help, but maybe the hope for help has ended. A good relation to another person in this situation often helps, someone who can be there, trusted, who understands and provides safety. This is part of the basis of psychological or social medical approaches to all mental suffering my friend, a huge literature base would put you on track.

On the specific note of feeling like ending life; I think everyone feels better in one feels in control of ones life, feeling that this control is respected might be experienced as positive – in particular if it happens within a relation with a person one trusts. Maybe someone who wants to die would have a hope for a secure base in terms of a person or group of those, who could give the breathing room and support to allow one to stabilize, realize and integrate, and get strength to look for new ways to cope with reality.

KatrinaAugust 26th, 2010 at 10:33 am

I don’t believe for a moment that someone referenced this website in a suicide note. This guy is a fraud – he’s posted on other websites saying similar nonsense.

Judy S.August 27th, 2010 at 2:45 am

In two weeks I’ll be going in for my 82nd maintenance ECT treatment. Obviously I wouldn’t continue with my treatments if they weren’t working for me. Yes, I have had memory loss. I look on the light side though: I used to get bored when re-runs of TV programs came on, but now they’re all new to me. Ha-ha.

Judy

ResearcherAugust 27th, 2010 at 12:37 pm

I love your humour

TrishAugust 30th, 2010 at 12:10 pm

Patricia
I recently completed a treatment regime of 12 rounds of ECT after a suicide attempt. I have been on almost every kind of antidepressant medication w/cymbalta being the most recent. Now after the ECT i have severe memory loss, left side numbness (upper and lower being effected). They have added more medication than i have ever been on (abilify, remeron, cymbalta, trazadone, + 2 more i cant recall the names). Has anyone else experienced the left sided tingling and numbness? I need to find out if this is a side effect so i can plan how to treat it instead of stumbling around the internet trying to find the truth. The ECT was given to me supposedly with my consent but since my memory is gone i dont know if that is true or not. My next appointment isnt until 9/10 with my therapist so i am on my own until then. It amazes me how Psychiatry is permitted to police itself. If this were a medical condition i would not have to suffer alone for weeks on end.

KateSeptember 16th, 2010 at 3:36 am

I would like to comment about the notion that the decision to have ect or not can be based on rational considerations and/or research. My husband has suffered from bi-polar II for at least 20 years. His family has a history of depression although not as severe as his. For the past 2 years his depression worsened resulting finally in leaving his job (a decision based wrongly on assuming that the job was the problem and was making him unhappy). Within a week he was hospitalised with suicidal thoughts and a complete and disfunctional hopelessness. He remained in hospital for 3 months – was under constant psychiatric, psychological, medical and social care – changed medications constantly – all to no avail. Ect was something we considered carefully and with an absolute understanding that we viewed it as the ONLY chance available to thwart possible suicide. We have been happily married for 24 years, have kids – all love and support one another – and my husband and I have always been upfront and fully supportive of anything we needed to do to be as well and as happy as possible.

With all of this – we still considered that in order to avoid a possible suicide (which both my husband and I were concerned might happen) – we had to give ect a go. After a number of treatments (around 6) the memory loss was acute (although it seemed more limited to events/conversations covering the recent/current period). It has been 5 weeks since the last treatment and my husband is very concerned (as am I) that his cognitive ability, humour and creativity has been greatly impacted. He is a ‘shell’ to a large extend – it still on large amounts of medication – has the shakes in one hand – and has little or no initiative. He has always been a man of the mind and both his work and his leisure have been an engagement of the mind. We don’t quite know what to do now and the treating psychiatrist (who is based in a specialist private hospital in Melbourne, Aust.) will not accept that the ect has any affect whatsoever on creativity or intellectual ability.

While I feel for and understand every point of view i have seen on this site, I can only say that we could not have done it any other way and felt confident that we could prevent a suicide – we BOTH viewed this as a devastating and unacceptable option for our very close and loving unit.

So we continue to search for help and expert assistance along with stories from others who can assist us in working through out particular circumstances

Not sure where we will end up – my husband doesn’t work – but we have each other, our family and some hope. more than we had 6 months ago

ResearcherSeptember 16th, 2010 at 12:38 pm

Dear Trish and Kate,

You indicate the existence of much suffering. Why would one want to kill oneself, is it so that life feels not managable, is there a deep missing of something, someone, is there a pain that leaves one in the thought of just wanting to escape?

I am sure ECT allows for some escape, maybe one is less troubled by bothering memories, and less inclined to habitual non-working actions. But in the long run, how does this sedation possibly work? Well you note hope, there isnt any in that ECT tunel is there.

If you consider hope, what does it cointain for you, or for the partner whos been given functionally damaging interventions by orthodox psychiatry? Would a safe place be amongst your visions of hope, what about a safe relation, a harbour? I mean, if you or him can specify what you would need and go for that, maybe you have an option.

I am no clinician but a researcher, so take it like that

Martha MoetOctober 2nd, 2010 at 6:18 pm

My Dad in the late fifties and older brother in about 1972 did great ETC. But from what I have reading today people have had so many treatments and close together. Both only had about 9 treatments and spread over months. Also did not take any meds. afterwards. Returned to their jobs and were successful. There was memory lost. But over a period of years most memories began to return.

Teresa RobertsOctober 12th, 2010 at 7:36 am

I had ect treatments back in 1980 (I don’t even know how many I have had) In the past few years I have noticed that I get a knocking sound in my head while I am lying down.
The sound is very realistic and one day I even went downstairs and opened the door.
I am just wondering if anyone has experianced this.

Ann MillerOctober 16th, 2010 at 9:19 pm

3 1/2 weeks ago I finished 6 ECT treatments. It was the biggest mistake that I have ever made. I now have horrible pains in my head, especially near my temples and the top of my head. My memory sucks! I can’t drive and I can’t go any where by myself. I can’t go back to work because I can’t perform my duties at this point. I had a total mental breakdown while at work after my 5th treatment and don’t remember anything. I actually went and had another treatment the next day! Don’t remember that either(I was told). I find it very strange that I actually had a nervous breakdown while having a series of ECT treatments. I can’t figure out why my doctor even did a treatment while I was so emotionally and mentally sick. I was NOT this way before the treatments.
I ended up in a mental hospital 3 days after my last treatment. I am home now after 8 days and feel like crap! I feel like I am now “damaged goods”. I can’t even remember to take my medicine, even when it is sitting right in front of me. When a new day comes I forget the day before it. I can’t remember where my best friend lives. I forgot everyone that I work with except 2 people. I can’t remember my vacation just a couple of months ago. I could say so much more, but my thought process is getting mixed up.
To sum it all up, I can’t change what has happened to me so I am trying to figure out how to live with it. I am miserable and in pain. People say just be patient. Well, let them live what I am living and then see what they say then!!! I am very thankful to have found this site, thank you. I hope this all makes sense to someone.

Mary HansonOctober 27th, 2010 at 3:23 am

I have had 6 ECT tx back in 1994, after 3 suicide attempts. These treatments were given to me in the span of only one week. Almost 17 years later, I still have short-term memory loss and now suffer from a seizure disorder I never had prior to these treatments.

Is it possible that ECT can actually cause seizures later in life years later? If I was in my “right mind” while still being under the statute of limitations time-period, I would have sued my doctor for malpractice. It was a nightmare for me. My doctor did not make sure I was properly anesthetized prior to my final ECT, and I was still awake and aware throughout the entire process. The problem was that the med they gave me to relax the muscles prevented me from letting the doctor know I was awake. But I still heard, felt and saw everything that was being done to me.

It took many years later before my major depression lessened, but I am finally feeling much better. I am now on no meds for depression, but now I have to take dilantin and topamax for seizures, and there is nothing I can do for the memory loss. I am also very forgetful of so many things I should remember in daily living (like I have a hard time with names, where I put things, what I was just doing a minute before, why I was calling someone on the phone, etc.).

ShockedNovember 29th, 2010 at 12:12 am

I received 17 treatments of ECT. I had 12 treatments initially, and five maintenance treatments since the initial round. I had cognitive problems before the ECT and I suspect the possibility of my prior “medications” having a causative role. Memory and cognitive deficits are symptoms of depression to begin with, so who knows? Anyway, during the first two weeks of ECT I started to feel hypomanic. That quickly subsided and I felt no better than before. I didn’t notice any retrograde amnesia at all, and I feel I might have had some slight anterograde amnesia, but it is hard to tell as I was having problems before. I basically received no benefit from it, but I do not feel it harmed me or ruined my mind, as my mind was pretty much ruined already. I will say that it did alleviate the discontinuation syndrome that had plagued me three months prior, when I decided to stop all medication and finished weaning off of them. I don’t see how putting 80 volts across your frontal lobe isn’t bad for you, but if it had helped at all I would have gladly done it to escape the hell of treatment resistant depression. However, since I felt and feel no better, I guess I kind of regret it, not to mention that even with insurance, it ain’t cheap. I’ve heard some people have had remarkable recoveries from it, so I wouldn’t rule out the possibility that it might help if all else has failed. But be sure to research the clinic where it is performed, the machine they use and the doctor performing it. My understanding is that unilateral is much more benign in terms of memory loss but less effective. My first ten treatments were unilateral, and 11 and 12 were bilateral. The rest were unilateral. I didn’t experience any more significant cognitive problems from bilateral, but I didn’t receive any more benefit either. Of utmost importance, however, is the wave form used. Never agree to sinusoidal stimulus. Brief-pulse (square wave) is what you want if you go down that road. Sine wave voltage turns your brain into mush and will definitely cause issues. It is my understanding that they no longer use sinusoidal machines as the negative effects are well documented and pronounced. Still, I would check what kind of stimulus is utilized. Basically, do your research if you choose to try this method of treatment. I assume that if you are considering ECT, you have been suffering for a long time and nothing else has worked, but it is a drastic measure so it is wise to be as informed as possible, and we all know that the medical community isn’t always the best when it comes to informed consent.

ingridNovember 29th, 2010 at 6:18 pm

I had ECT (7 treatments) done in June/July 1009 after being hospitalized for depression/suicide none of which could be eleviated with medications….I am now suffering from chronic migraines and tinnitus and am over stimulated by noise light, driving is almost impossible. My brain feels fried, I have difficulty sleeping. Has anyone had anything like this happen? I feel like I am loosing my mind…..the doctors keep wanting me to try different meds and nothing is working to chill me out so to speak…..

MikeDecember 8th, 2010 at 3:04 am

I am the father of a 34 yr old daughter that had a series of 12 “treatments” 6yrs ago in Gothenburgh of Sweden. She suffer from permanent severe memory loss. For example she does not recognize some of her old friends and she have problems concidering what kind of relations she had with others. “Did I like this person”? etc….She can no longer play the piano which she used to love before. The most severe effect however is her change in personallity. Before she was a very emphatic person and very socially conscious person. Now she is much more “cold” and she can say just about anything without understanding the consequenses hurting people. I would welcome anywone giving suggestion on litterature (or internet sites) on this subject!

Ann MillerDecember 9th, 2010 at 8:33 am

I had 6 treatments in September 2010 and I will never be the same again!!! My PTSD and traumatic childhood memories are much worse now. My memory is also very fuzzy.
I would suggest anyone that may be thinking about having treatments do a lot of research on it and also make sure your doctor has experience and the proper training.
My heart goes out to all of the people like me that have had horrible outcomes from the treatments.

Ann MillerDecember 9th, 2010 at 8:50 am

Mike,
I have had similar symptoms like your daughters. When I see someone I have to stop and think who they are and how do I know them. My memory comes and goes. I feel like it has also changed parts of my personality. I have always been very kind hearted and caring, but now I always have to stop and think before I react to people. I have done a lot of research on the internet and joined a couple of PTSD support groups on facebook. Other than that it has been very hard to find much support. Go to your web browser and type in ECT and you should be able to find quite a bit of information on it. I hope I have been able to help you in some way. My thoughts are with both you and your daughter.
I hope that you can find some support for both you and her. Don’t give up!!!

Ingrid,
I have had migraines ever since my treatments also. I have found some help from a doctor
that is a psychiatrist who deals specifically with migraines and any kind of nerve pain.
Try doing a search for your area on your web browser for “psychiatrist who deal with pain”.
Hopefully you will be able to find one where ever you live. I am still dealing with the light sensitivity as you are. My doctor has told me it is from nerve stimulation caused by the seizures. I think as more people are having ECT treatments done there is becoming more research and help for people like us who suffer from adverse reactions. Take good care of yourself and don’t give up! I will be thinking of you.

IzzyDecember 21st, 2010 at 8:13 pm

I had my first major depressive episode when I was 13, but attributed it to an awkward adolescence. I ‘self-medicated’ for 20 years and switched to herbs to jumpstart my brain.

The anxiety & depression finally got so bad that I couldn’t work anymore, so I saw a shrink who put me on effexor. It alleviated the symptoms somewhat, but I felt dead to the world, anesthetized mentally, physically & emotionally. I’ve gone off my meds & switched to 5-HTP & SJW periodically, but I’m mentally & emotionally unstable. Therapy has been 5 years of futility.

I’ve come to that point in my life that I’ve decided ECT is the final solution. Either I will end up a vegetable with a stupid grin on my face or I will emerge free from this black hole of death to live a normal life. The success rates of the latest ETC range from 60 – 80%, however they define success. The only other alternative for me is death.

ect victimJanuary 18th, 2011 at 6:43 pm

There are no statistics on people being able to work after receiving ect. How can they make a living after losing their character, memory and cognitive abilities? This also maximizes the amount of sufferring turning them into nothing and makes them more vulnerable to the harshness of life. We need to think of solutions. Could a person ever recover from ect and gain the strength to fight for his life? Its is a very mysterious thing. After trying to prove ect is the worst thing that could ever happen to a person, what happens next? Will solutions be found? Will ect victims ever recover and be the same as they were before again or are they gone forever? Where is neurology from all of this?i think all ect victims should really consider their future because they r still living but really expired. Something should be done and its not suicide. A more positive approach is better because ecery problem has a solution even if we r still not aware or all the solutions.

JulesJanuary 26th, 2011 at 7:44 pm

I am wondering about the use of ECT for purposeful memory loss. Like 4 years or so. If i loose more thats OK. Is this possible?

JuliJanuary 27th, 2011 at 12:50 am

Jules, no reputable doctor would do that. If you find a doctor who says okay, then you’ve got a total quack on your hands and should run.

ECT is not precise, and there is no way to dial in what years you want erased. That’s science fiction. It’s just a crap shoot, and you might end up with ten other years erased, but the four years you wanted gone are still there.

So the answer is no.

AnnJanuary 28th, 2011 at 8:03 am

JULES, my doctors told me that I was suppose to forget about years of childhood trauma if I had ECT treatments………..that was a bunch of bulls%@t!!!!!!! I went ahead with the treatments because I was so desperate that I believed what anyone told me……a HUGE mistake!!!
Now that I did it I am suffering the side affects every day of my life.
After doing some research and reading things on sites like ect.org I realize that what the doctors told me was a lie and I have no idea why doctors can get away with what they are doing to people. I believe that there ought to be a law outlawing ECT treatments!
It is inhumane!!!!!!!!!!!!!!!!!!!
How can anyone or anything make us forget parts of our life??? Like Juli said there is no way to dial in on what years you want to erase! ECT treatments made my PTSD memories worse than they ever were before. It made them seem much more real and brought back some memories that I had forgotten. I also have everyday memory loss, migraines, weakness, tingling, hypersensitivity to light & noise and have had to resign my position at work because
I cannot concentrate.
There obviously is something wrong with ECT or some states would not have made it illegal.
I think that it is a money maker and I believe that the doctors who are performing these treatments must not have a conscience. You’re in, your out and they make a ton of money!
Then they are on to the next victim!!!
PLEASE do as much research as you can and get multiple opinions!!!!!! If you decide to have treatments it is not something that you can change afterward.
This is just my views and opinions, but I just wanted to give you some incite and things to think about.
Be well my friend, I will be thinking about you. Ann

ThugboyTJFebruary 3rd, 2011 at 12:10 am

I have a variety of psychological disorders, a couple a bit out of the norma spectrum, lets just say they talk about them in text books, but…few documented cases have been seen, and very very very few clinicians have experience treating them. Anyway, ECT was brought up by my shrink a few months ago, then today by my therapist during a, lets say *horrible* session (not his fault, just how my life is), I am bipolar, with severe depression, and now suffering from mixed state manic phases, which is honestly killing me. I am contemplating once again getting off the ride most folks call *life*, I came to this site to research ECT, since it may be my last choice available. Yes, I have drug resistant depression, and now the bipolar has gone wild. Frankly, some of these posts horrify me. I hope to those posting you are truly representing honest experiences..this has definitely been a mixed bag of information. I would hate to be one who actually commits suicide and references this site as the reason for avoiding ECT, anyhow, to those posting your honest experiences Thank-you.

Thugboy TJ and gang

SimonFebruary 22nd, 2011 at 1:35 am

I am scheduled for my very first ECT session in one week. I have been depressed for the padt 20 years and it has affected my life greatly. I am currently on Lamotrigin, Olanzapine and Effexor XR. I am somewhat concerned about losing my memory. I cannot refuse the treatment as I am military and this would constitute an act of self mutilation ( according to military laws ) because I have been suicidal. I am scared to lose my memories. I read everything on here and it doesn’t look good…

ChristieApril 8th, 2011 at 1:22 am

Simon, I have exprience with ECT and being prescribed meds that seemed to worsen my depression. After they (VA Mental Health Clinic) misdiagnosed me as having bipolar disorder, put me on meds that made me suicidal (I felt like I was going crazy) so I agreed to ECT. I have no memory of ANY of that but after reviewing my medical records, I cannot believe what I consented to! ECT is self mutilation
According to my friends & family, my personality has never been the same. I used to be funny, witty, and able to hold an intelligent conversation with anyone. Memories of my son are either fuzzy or completely gone. I learned about myself from documents and from other people. Some things I was told were untrue so I get frustrated when I can’t remember. The problem is…I can’t remember and it’s been 6 years since ECT!!
If you can’t tell, I’m not pleased with my results!! I went to a therapist who put me on 1 antidepressant and some good old fashioned therapy. I’m still dealing with the side effects (and a brain MRI showed damage) but my depession is under control. You may not have a lot of options in the military but don’t believe i’ts your only option. They cannot force ECT on you. You are entitled to a 2nd opinion (and a proper diagnosis).

NinuccioMay 27th, 2011 at 12:22 pm

Every single head injury is different. Every single one. Anything that touches the brain will bring on different symptomology…now after having said that…The doctor’s world…what you are going to need to understand your new injury…is very unreliable. From the good and ignorant…to the bad and untouched. There are only a distinct few who have the potential to rehabilitate you.
The true treatment for head injury via shocks is “cognitive remediation”. Basically unrecognized. Cognitive remediation is an extremely slow treatment and needs to take advantage of establishing proper recognition established by the neuropsychological testing and cognitive remediation.
Also once the brain is touched it is very difficult for “doctors”?…to understand any other potential cognitive deficits. After having said all that. I had two ministrokes post my injuries. I was taken to Cornell Hospital in Manhattan. The next morning I was put in the street in a wheelchair…with my head spinning and not able to walk.
Bottom line. This is your medical system. Had I not been here telling you this…you would never know…no lawyer is able to touch this behaviour by your top medical establishments…good luck to you all…Ninuccio

ingridMay 31st, 2011 at 9:19 pm

I had 7 treatments of ect in July of ’09…..I seemed to be doing okay then at the end of August beginning of September I began having headaches and tinnitus and severe fatigue. These symptoms have persisted to the point where my headaches are unmanageable, my tinnitus is unbearable and I spend most of my day “sleeping”….I have no life. Has anyone had any of these symptoms???

NinuccioMay 31st, 2011 at 11:35 pm

All symptoms due to ECT. are different…but before your treatments you should have had neuropsychological testing. Before your treatments you should have developed deeper insight into your physical as well as your cognitive status via cognitive remediation…which is simply neuropsych. testing plus treatments which bring out the whole picture. Once you enter ECT. without proper “prior” testing you leave open the door for a possibility of potential of unknown symptoms. Both physical and mental. Psychiatry will readily be able to step in…but psychiatry…(for the brain)…by itself may not be able to train you to fully recognize your cognitive setting. It just not have the techniques necessary that need to be developed by a head injured brain. My suggestion…after being a victim of a bunch of doctors who were never touched, is to be wary to begin with and to enter a place like the Rusk Institute in Manhattan. Or a place that gives the same “cognitive remediation” classes. You will need to recognize your full physical plus cognitive status…I was able to recognize a hemiparesis on my right hand side only years later…when I entered the Rusk. I was able to recognize my full cognitive status which was far more complex than I had imagined…only years later…you simply need the right doctors…Ninuccio

NinuccioJune 1st, 2011 at 4:47 pm

To Simon: I actually do understand the fears that have been passed on to you by many folks. I am one of those folks. I will not go through explanations again…BUT…I was a vibrant young man, 27 years old. I subjected myself to neurosurgeries and then was unwillingly subjected to shocks. I am 58 today. I am a mess today surviving from a multitude of cognitive deficts…(I happen to be very lucky to have received treatment that is not even ever mentioned in this group). Both doctors are in my lawsuit papers that never made it to court. Now I am hooked up with a hospital that was never aware of head injury as they had seen me prior to my Rusk days. The vibrant young man I was before is today afflicted by short term memory loss, long term memory loss, focusing what is said, memory dejavu, time and place disorientation, impaired insight and judgement, distractibiltiy, emotional gaiting and a hemiparesis…and also a bad heart…a possible result of the procedures. Without any more talking…take lots of tests…(preferably you can read of what types of tests you will need to take). This is not to scare you. This is to make you aware. Head injury is a dead end street. You are taking a risk…and there is noone to trust. The doctor who took my life was a doctor in Manhattan of New York City. He was on my lawsuit papers years later made by another top doctor. This, even though “severe” according to lawyers, the doctors were very well shielded and protected. So, this is the mess you need to look at before you subject yourself to this. I actually believe that shocks are sometimes good for their intent…but I also aware of quacks out there…and their shielding techniques are so well developed and protected that you will need to become aware of them, and to take all proper precautions. How do you that. Deal with an independent group like this…and hear people stories. Then if that’s the last path for you…proper facility, proper neuropsychological testing “proper” to the treatments…and be sure you understand those consent forms which will be filled out I am sure with much “ambiguous” material…before you subject yourself to the shocks…subject yourself to some awareness…Ninuccio

DawnJune 12th, 2011 at 3:16 pm

I have had one round of ECT so far. I have 4 more scheduled in the next 2 weeks. I have done lots of research on the topic and have made the decision to go ahead with it well educated. My thinking is that my depression causes more and worse side effects then the treatment itself. Right now I have very poor memory and frequent thoughts of suicide. I feel that in the long run I will be better giving it a try. I have written down the things I need to remember – like I have a daughter and where I live and my phone number. I have also written how much my life sucked before the treatment so I will be able to be on the lookout for positive side effects and not sweat the small stuff. My goal is to come back to this site after more treatments and give an update. I am really hoping that my future treatments will be the same as my first one. I had no side effects and remember everything, even in the seconds before I fell asleep for the treatment and the minutes that followed in the recovery room.

NinuccioJune 13th, 2011 at 11:48 am

Everything seems well…but I just wonder if you have taken the precautions mentioned many times. Neuropsychological testing?…I am the byproduct of neurosurgeries plus shocks. But it was the shocks that erased my memory. Sure I could talk just like you at one time. I however did not write down my girlfriend’s name, my mother, my dad, my family. And even if I had they simply would have been there in my memory…but my memory was impaired. That is why the neuropsychological testing is mandatory. It will make a statement of your cognitive setting before it potentially…(maybe 1 out of 100)(and even that is too high)…may be compromised…Ninuccio

NinuccioJune 13th, 2011 at 12:04 pm

Dr. Lothar Kalinsowsky
1)-Subjecting the patient controversial and potentially damagin electroshock without informed consent. 2)-When the patient’s brain function was already impaired, sujecting the patient to another brain-disabling tratment in the form of electroshock. 3)-When the patient suffered an extreme reactiton to eletroshock…continuing with the treatment. 4)-Failing to inform the patient that malpractice had been committed by the prior doctor.5)-Failing to inform the family that the patient would never recover from the damage inflicted by the prior doctor and the electroshock. 6)-Giving electroshock to an obviously incompetent patient with no legal guardian, and therefore without consent.7)-Inappropriately prescribing electroshock for a patient in whom it was unwarranted.
This happened to me right here in New York City. In Gracie Square Hospital. No one was ever touched…THAT is why you need to do all your research and even if you are willing to subject yourself to shocks…to find the proper doctor…HOWEVER…Dr. Lothar Kalinowsky was one of the top doctors in shocks. So you take it from there…Ninuccio

NinuccioJune 19th, 2011 at 3:20 pm

The legal system is one of our most important assetts of this well “designed” society…well maybe it’s not so well designed…because it allows and “protects” these quacks…Dr. Lothar Kalinowsky, Dr. Stanley Stellar…
From Linda Andre’s book:…”DOCTORS OF DECEPTION: What They Don’t Want You to Know about Shock Treatment (Cloth $26.95, 978-0-81354441-0, February 2009) by Linda Andre is the first history of electroconvulsive therapy (ECT), or shock treatment, to consider the controversial procedure in a social, legal, financial, medical, and moral context. Through the investigation of court records, medical research, FDA archives, and other primary sources, Andre shows that claims of safety and efficacy made by doctors who promote and profit from ECT are not supported by science or evidence. She reveals how the shock industry and organized psychiatry abused public trust and waged a masterful, multi-decade public relations campaign to improve ECT’s image, deceiving the media, the government, and the public about its risks while exploiting negative stereotypes of mental patients to silence survivors…
SHAME ON ALL OF THEM…and shame on our LEGAL SYSTEM which shields these…”lower then human beings…WHAT A SHAME…Ninuccio
What makes it a real shame…is that the very doctors who rehabilitateted me never mention the treatment to anyone else…Ninuccio

mainzAugust 28th, 2011 at 6:49 pm

ECT was brought up by my shrink a few months ago, then today by my therapist during a, lets say *horrible* session (not his fault, just how my life is), I am bipolar, with severe depression, and now suffering fromHava Perdesi
Hava Perdeleri
Hava Perdesi Fiyatlari
mixed state manic phases, which is honestly killing me. I am contemplating once again getting off the ride most folks call *life*, I came to this site to research ECT, since it may be my last choice available. Yes, I have drug resistant depression, and now the bipolar has gone wild

DanaAugust 28th, 2011 at 11:29 pm

Mainz-I can tell you that I was in a very similar mixed state almost exactly two years ago. I chose to do ECTs as I was told this was really the ONLY option that would help me. I underwent 29treatments. For the past two years I have now been recovering from a brain injury/cognitive disorder due to the ects. My quality of life decreased to that of minimal existence. I have lost all of my memories/knowledge to go back to my job as a teacher and am now hoping to get some sort of JOB in the future as I am currently on disability. The ECTS were absolutely no help. It did prevent me from committing suicide as it put me in such a NUMB/apathetic/confused state of mind. I couldn’t hold a thought long enough about suicide to actually go through with it. If you are seriously thinking this is the best way to prevent suicide or just get treatment, I suggest you do ALL the research you can to actually be INFORMED. Don’t just take the docs word for it. I was in such a bad state of mind that even if I would have been totally informed of all the terrible things that could have possibly happened from ECTS I probably still would have went ahead with it. I was desperate for something to help me. I wasn’t totally informed though and now feel as though I was a victim of this treatment. If you do this it is important that you have some idea of what you are getting into. I WOULD NEVER SUGGEST ANYONE to undergo ECT under ANY circumstance after what I have been through. I luckily had a great nurse who referred me to the brain injury clinic after eCTs for rehabilitation so I can now have some sort of voice. Sadly after doing more research you will find that many ECT survivors have no rehabilitation and have lost so many more things than just their memories. Even more troubling is that ECTs could lead you down an even scarier and lonely path than what you are currently on. Apparently it does help but in my opinion and experience it is like playing russian roulette, the only difference is the “negative” consequences of russian roulette are kinder than ECTS.

Devon FowlerAugust 31st, 2011 at 9:17 pm

as to this comment below:

ect victimJanuary 18th, 2011 at 6:43 pm

There are no statistics on people being able to work after receiving ect. How can they make a living after losing their character, memory and cognitive abilities? This also maximizes the amount of sufferring turning them into nothing and makes them more vulnerable to the harshness of life. We need to think of solutions. Could a person ever recover from ect and gain the strength to fight for his life? Its is a very mysterious thing. After trying to prove ect is the worst thing that could ever happen to a person, what happens next? Will solutions be found? Will ect victims ever recover and be the same as they were before again or are they gone forever? Where is neurology from all of this?i think all ect victims should really consider their future because they r still living but really expired. Something should be done and its not suicide. A more positive approach is better because ecery problem has a solution even if we r still not aware or all the solutions.

I agree completely. ECT is barbaric, disgusting that it is allowed in a civilized country, cough joke, and I had mine at Mcleans the “gold standard” supposedly. Guess what? it’s that much harder to fight for yourself, when you can’t speak well, in a semi demented, and at times completely demented state.

Oh you want to kill yourself? I feel bad, but how about physical sensations in your head, that you can’t explain, like numbing, tingling, pain, pressure, mini strokes, loss of oxygen, and sleep deprivation so bad I pass out in my sleep now, as in go unconscious. I’ve been to “the best” neurologists, but they simply say I need to sleep!

Folks in 2011 the world is still a horrible place for psychiatry, and many other things. They don’t know jack shit about the brain, only unique ways to completely permanetntly damage it. I tried to kill myself a week ago, but the body fights to hard and its’ HARD to kill oneself, especially since I had so many things going for me despite hard mental illness.

I have DETERIORATED since my ECT. You can deteriorate fine with just the illness, or the brain damaging antipsychotics, you can get very fucked up without ECT. Now imagine ECT, complete loss of decades, or life memories, clouded, faded, smoothed over memories.

Do you want that? Now I am in a constant state of TORTure, yes mental illness is torture, but this is just that much worse. It’s a sick industry making tons of money, getting rich off of our pain. Might as well be in a POW camp, but at least that ends, this does not.

Finally there should be research into fixing the brain damage of ECT, but if they could do that, then I suspect they could also cure mental illness.

DanaAugust 31st, 2011 at 9:34 pm

Devon-

Well said…thank you for sharing. :)

dana

NinuccioAugust 31st, 2011 at 10:07 pm

Devon Fowler,
I had not been able to get on this site for quite a while now. I am one of those people adversely effected by ECT. I have also taken quite a whipping trying to understand my situation. I was probably only able to do as much as I have done because my mother was alive. She lost her life in 2007 by being given bad medications…I was in much better shape at the time. I was able to get papers released and when sending them to lawyers I can see that not only in head injury these people are able to destroy…but in other parts of the medical system. I understand your situation and the problem I see is not only that head injury…shocks…its ill effects are not recognized but you need to be extremely lucky to end up in proper rehabilitation by another bunch of “losers”. Now why would I call the doctors who rehabilitateted me a bunch of losers. I was in the Rusk Institute in Manhattan, where I received cognitive remediation. I began realizing later on, and it continues today that treatment that I received NOONE is aware of. The information is simply not passed on. Now I have developed, as it was written in a report that never made it to court, a retrograde degeneration. I am struggling to stay alive. Just like you. Some you know never made it.
Maybe the reason why we subjected ourselves to these “torture” treatments is because we had trust in the doctors. We didn’t know that quackery in such a modern society is commonplace. I don’t know if you know the full extent of your injuries, I today don’t know the full extent of mines. There are, and there may have been doctors who have assisted you, but they are mixed up with the doctors who have injured you. I wish you luck in your pursuit. I sincerely hope you have become fully aware as to your deficits. I thought I was getting much better until I passeed out. I was taken in and I was told I had suffered a syncope. I looked up the definition of syncope and I found out is a passing out for which they cannot figure out a cause.
A big mess out there. I think you simply need to have papers on you detailing your injuries. Learn all the compensation possible for your symptoms. I learned the most from the Cognitive Remediation classes in the Rusk Institute…Ninuccio

Devon FowlerAugust 31st, 2011 at 10:59 pm

ok thanks Ninuncio, I used to work for NAMI on the consumer side, so it was very anti med, most of the programs and conferecnes I went to.

Having said that I would go to the state house to meet my politicians in Massholechusetts. I am planning on meeting John Kerry and another big name to ask their policiies on 1) forced electroshock in ma, if that is allowed, and 2) what federal funding ECT still has. I will ask why some eye exams are not covered under public insurance but brain damaging a person is? I will ask what they think when I show them scores of papers, anecdotal accounts of survivors, and lots of truth.

Explain the retrograde degeneration? Could our brains just die? My brain feels weak, as in I can only explain it as it feels like there is so little active brain working, like a dim candle, or a copy of a copy of a copy. I arrived at Mcleans feeling a tightness in my brain, anhyone experience this shit? I felt like I would just die. My sleep is akin to sleep deprivation or was.

Maybe I will just die, just sort of keel over and my brain will just decide it’s had enough abuse. abuse from the psychosis, abuse from the neuroleptics, and abuse from the ECT.

Guess what, I would not feel at alll bad if some of our shock doctors just keeled over…in fact the more the better.

There is so much damage one ECT shock can do. mess up mylenization blood brain barrier toxicity, exitotoxins, heating of the brain, hermetically sealing our veins and blood vessels, shrinking or destroying neruons through hemorages, mini strokes. Fuck

Devon FowlerAugust 31st, 2011 at 11:04 pm

also just destroying the hippocampus responsible for memory, and the prefrontal lobe responsible for impulsiviity.

Anyone here just have stories of dying from this shit? I’m in an ambien hopped up mood, so take me with a grain of salt. Seriously I’m 35 and have delirous dementia like symptoms. totally from the ECT, and my former memroy dysfunctions.

I heard just now from a friend that they have a new operation where they take out a piece of the Cingulate Gyrus, responsible for all kinds of important things, along with obsessive behavior, so I guess lobotomies still are being done.

Why don’t they at least make it interesting you know? Like put prions in our brains so they can be eaten away like a sponge! Then we would really suffer and degenerate.

God bless Jesus, God bless this great country, and long live brain damage!

LeahSeptember 1st, 2011 at 1:40 am

Wow, I think the comments today show you are all in need of more therapy. I had the record amount of ect given to a person in Auatralia and yes I lost my whole 31 years memory of my life and lost many skills. But I never blame the Dr doctors do not make money by prescribing a type of treatment. Doctors do not so this as a first option it is a last resort, when medication, therapy, hospitalization does not work. Ect dis work for me, I have not attempted suicide since. I no longer take mediation. Yes I have bad days and a horrible side affect and some strange things including pain that I just don’t to the conclusion ect gave me. What I do is keep even 3 years later seeing my psychiatrist twice a week for therapy. I still get help and that’s what you all sound like you need. I did not find in barbaric, it has a purpose in the treatment of some very I’ll people which included myself. I do not blame doctors there is proof it works I am walking evidence. I spent 2 years full time Dr after Dr, medication after medication, therapy after therapy and is was not until 6 months of three times a week ect I wanted to live again. I could leave my hospital room without a panic attack and the treatment continued for six months more until finally after 5 years of hell I could re join the world.

I am sorry you are dealing with everything you are but so am I and when I struggle I seek further therapy. I have not had ect since I left 2 years ago, I have worked again. Sadly I had a car accident abd have had spinal surgery and about to jave another one which is a true test to see if ect cured my depression as I am in chronic severe pain all day, cannot work and stuck in bed a lot, yes I have sad days BUT my deep dark depression has stayed away and I know I have ect to thank for this.

I dont think such hard criticism and blaming doctors is the best thing to do on a public website. I am not saying it is the answer for everyone and it is a decision not to be made lightly but you defiantly need to keep in mind in can and does save lives. This time 4 years ago I was in a coma from a suicide attempt and today I am alive because of ect.

I wish you nothing but good health but please take my advise and seek help as you do not sound very well and I am sure something beside ect if you object that will get you there it takes time to find the right combination of treatment to help.

Devon FowlerSeptember 1st, 2011 at 1:58 am

Sorry Leah, I worked in around this industry, I have done a lot of research into ECT, and the profit motives of this industry, You are being VERY naive to think that they truly have our best interest at mind. They do not, otherwise they would not have forced shock where they force people, as in against their will, sometimes hundreds of times, usually we have found at Mindfreedom, one org, that this is due to profit motive, obviously, but also a sadistic, sick, call it what you will, but cruel intended purpose, why? Why are there people that sick as our doctors? I can only guess that the medical profession is more about death, and making money than life. Now I almost sound religious here, but don’t get me wrong, there is a real overtone of, we don’t care if you die, and some even seem to revel in others suffering….maybe they are messed up psychologically themsleves, maybe they learn to start sickly enjoying seeing helpless patients be destroyed, I kid you not, I think there is true malicious malintent here.

Finally Nuncia, you’re also absolutely right! The doctors who may have our better interest in mind are often working under the shock doctors or other oppressive and agenda’d doctors. yes, I truly think when I take my battery of neuropsyche tests, and when I get the right kind of MRI, and if I can afford somehow a functional MrI, or a PET or SPECT scan I will be able to prove brain damage. This may be necessary so folks start taking me seriously, as well as my own records. I mean I just woke up out of the lightest sleep, a problem I contend with every night now. It is as if I’m not a sleep, more awake sleeping, or in between some semi sleeping state. I have heard us ECT people get horrible semi awake, semi asleep states of mind, all the time, and we have night terrors, I can only tell you some of mine make me feel demented, retarded, brain damaged.

I can’t tell you how BRAIN DAMAGED I feel. It’s like when you know you got punched in the stomach cuz you know…well this is the same thing. There were times when my whole head felt soft and like I had a cuncushion.

What bothers me the most is how STUPID so many of us are, in that, when we do get damaged we say, shit, oh well, sucks to be us. NO we should be FIGHTING with our congressman, and health practitioners to get this horrible inhuman, life destroying non=scientific, brain destroying practice BANNED.

I am going to call my states senators and congressman. I have had luck in the past.

“I’m mad as hell and I’m not gonna take it anymore.”

Devon FowlerSeptember 1st, 2011 at 2:09 am

I am a member at Mindfreedom, and I suggest you all join. They are a consumer based group of people who have an agenda with the mental health system. The leader is David Oaks, or the guy in most charge for most things over there.

This isn’t light stuff! These our are brains, and our lives we are talking about here people! I get sick to see some infomercial with some stupid corporate shirt selling some dumb useless product with such power, and interest, well that is what we she be doing for ourselves!

I agree we should be getting rehab services just like TBI people do. We should be investigating into other alternatives, if any, to heal from electric shock brain damage. I know stem cells is a promising field for helping to heal brain damage, but all I researched I found mostly more quacks, trying to ponzi scheme you.

I guarantee, as I used to be very into medical advances for difficult diseases, that there will be ways in our lifetime to better our cognitive impairment, for that’s what it actually is. I know cognitive remediation, or enhancement is the most basic, kind of just keep trying philosophy which works to a very modest point.

At some point there will be some nutraceutical drug, or even brain tissue repair via stem cells, or some other innovative technique that could benefit us in our lifetimes.

Please email me at dfowler351976, so we can pool our thoughts together. Maybe we can start lobbying congress to restrict federal or state money towards shocking people? What if we could ban forced shock outright? And maybe, just maybe, we can get this barbaric practice much less utilized even banned as one group of health care workers is doing in Ontario.

LeahSeptember 1st, 2011 at 2:25 am

I actually find your assuption that I have not completed as much research as you offensive. I along with many Dr friends (not in a related field) and very genuine journalist have spent years researching this subject.

Perhaps the US in different to Auatralia but money is not at all a modivation for doctors prescribing ect. I am far from stupid on this subject. As the only person who has suffered a entire life memory loss on record in Australia and having the most amount given in this country I have a collected many facts that go against what you say.

I am not wanting to provoke a online debate on the subject but like everything in life there are two sides. Sadly yours is despairing and does make me feel very sad for you. But to be such a extremist on such a delicate subject can lead a person who may read what your saying to make the wrong decision and leave the person feeling absoutly helpless. I think sadly you and others have perhaps had uneducated doctors and professionals managing your illness. I myself think
the time it took to find the right doctor who exhausted all avenues until ect was the only answer
was what made all the difference. I personally feel I owe my life to my Dr who continues to see
me. I hope one day you find a Dr just like her. She has real feeling, she shows sincere
sympathy and empathy who is also open to all types of treatment including alternative, supplements, exercise she never ever professes to know everything and she listens to all options no matter how different they may be to traditional teachings.

Please also refrain from calling me niave

DanaSeptember 1st, 2011 at 5:13 am

Leah, I have to agree with Devon on many of the above items. ECT and psychiatric care is highly motivated by money and insurance companies. It is not just coincidence that the most common group of those recieving treatments are of the older generation that also have MA to cover ECT.

I also am curious how truley “helpful” ECTs were for you with “entire memory loss”. To me there is no difference from giving someone a tbi as ECTS…sure some people can recover from tbi and move on with their lives but in the most part it is incredibly devastating.

ECTs can make a person feel very helpless, especially when the docs tell you this is your last hope. Then you undergo the treatment and suffer from the incredibly damaging side effects and within that time you kind of wake up and realize there were other options. ECT IS NOT YOUR LAST HOPE…there are OTHER options.

As for educated doctors, I really have a chuckle from that. I had treatment at one of the “best” world wide medical centers called the good ol’ mayo clinic. They are known for knowing what they are doing! People come from all over the united states/world to get treatment there.

To Devon, I actually was diagnosed with a brain injury/cognitive disorder DUE to ECTS and because I have EXCELLENT insurance I underwent rehabilitation at the brain center(for tbi patients) for over two years. I would NOT be doing as well as I am today without that rehabilitation and honestly don’t know if I could have mentally gone on without that support. ECT has made me feel like such a victim.

I am so angry and honestly I am also just willing to do whatever I can to let others know how barbaric this treatment is. I would never wish what I had gone through on anyone else…like I have said before…this type of treatment is like playing “russian roulette therapy” wheras the actual game of russian roulette may have more positive side effects than ECT if you lose. It is a gamble and it is a gamble with the most important organ in your body. IF I would have been told this same information before I had ects done I think I would be able to take more “RESPONSIBILITY” for the side effects that I have had to endure. However, I was NOT informed and again that puts me into a situation where I feel like I have fallen victim to this psychiatric system.

After doing research, especially on sites like mindfreedom, it is great to see we ARE NOT ALONE. DEVON, I am really inspired by your energy. I am extremely interested in organizing something to try and change(ultimately ban) ECTS. I will be getting in contact with you this week.

Also, I am currently working with a lawyer discussing possible legal action with my case. It was pretty “shocking” to have a lawyer actually get fired up about my case and even be willing to consider taking on the BIG OL’ MAYO CLINIC.

And I will end on this note:

ERNEST HEMINGWAY underwent 20 gruelling rounds of electroconvulsive therapy (ECT) to cure him of his depression. Having lost many of his memories as a result, he said, “It was a brilliant cure but we lost the patient,” and took a shotgun to his head not long afterwards.

Catherine PepperSeptember 1st, 2011 at 5:59 am

I have ECT on a Tuesday and work night shift as a registered nurse on the Wednesday.

LeahSeptember 1st, 2011 at 6:29 am

Well this will be the last time I bother to check anything written on this forum. I find it very sad that people cannot be happy that ect actually helped me, and yes I can cope with the unfortunate side effect. As for chuckling at my comment regarding educated Doctors you missed the point, obviously every Dr is educated I was making a point that some Doctors are educated way beyond the required amount. I mean Docotrs who educate themselves in all areas, other scientific or alwrnative treatments.

Using words to describe me like “naive” calling my treatment “barbaric” “chuckling” at my thoughts and feelings are very rude and offensive. Perhaps you need to be careful as a person who may be depressed could take that to heart and feel bullied.

It’s forums like this that stop positive outcomes.

Catherine, I wish you all the best with your ect and do know statistics and my personal experience are on your favor. Also I have a very high respect for nursers you work so hard and show such dedication. The world takes your profession for granted.
So thank you on behalf of all the patients you have ever taken care of.

NinuccioSeptember 1st, 2011 at 6:53 am

Taking away all the bad of ECT. All the good of ECT…Any person who has received ECT. needs to have it approached properly. The proper neuropsych. testing. The proper docotrs. The proper post shock assessment…well what I say is only what I say…How do you find the right doctors?…well let me tell you what this doctor did…RIGHT HERE IN THE MIDDLE OF NEW YORK CITY. Let me tell you what Dr. Peter Breggin said…here is some dose of reality:
REALITY: Here in Manhattan of New York City…unbeknownst to any potential witnesses…Dr. Lothar Kalinowsky did this. 1)-Subjecting the patient to controversial and potentially dangerours electroshock without informed consent.
2)-When the patient’s brain was already impaired subjecting the patient to another brain disabling tretment in the form of electroshock.
3)-When the patient suffered an extreme reaction to the electroshock, continuing with the treatment. (I was told by my mom that I had begged her to get me out of there…she didn’t…she had trust in the doctor).
4)-Failling to inform the patient and the family that malpractice had been committed by Dr. Stanley Stellar.
5)-Failing to inform the patient and the family that the patient would never recover from the brain damage inflicted by the psychosurgery and compounded by the shocks. Never giving any post assistance.
6)-Giving electroshock to an obviously incompetent patient with no legal guardian, and therefore without consent.
7)-Inappropriately prescribing electroshock in a patient in whom it was unwarranted.
Gracie Square Hospital-Failing to properly supervise electroshock and the reason for its administration.
Dr. Lothar Kalinowsky…I am sure a very renowned and famous doctor here in New York City was able to do this. A commoner like me. Lie on the papers…and simply wash his hands.
I did receive rehabilitation in the Rusk Institute in Manhattan…12 years later…only because my mom was alive.
You know…INSIGHT AND JUDGEMENT are symptoms that appeared on my head injury chart. This is what everyone has to deal wiht when making decisions.
I suggest my information can be used to gather insight, so that you can make a better judgement…HOWEVER…being that “top” doctors were involved in my demise…then you simply have to wonder.
For the people seeking ECT. learn all you can. Learn of the precautions that need to be taken should you be subjected to it. Learn that you would need testing prior…(neuropsychological)and that testing will need to be done later.
If you get mangled…like I have…then learn that now you would need some neurological and neuropsychological procedures…until you understand the full extent of you injuries. Then you simply go on with your life and advocate for others not end up in the “pitfalls” in the medical system. They are very well shielded…ESPECIALLY in situations where you volunteer your life…by ECT…Ninuccio

DevonSeptember 1st, 2011 at 12:48 pm

Leah, I don’t want you to think that you are naive. you are not. It is just quite obvious from all the studies, these were really unbiased, in my opinion, and all the people I’ve talked to that complain about devastation in their memories, and social functioning, and all the people that feel they were victimized, even tortured, that ECT is just that, at least for so many people.

It is my firm belief that some people have less problems with the after effects of ECT, but so many others live with the destruction that ECT has caused. I’m writing this and barely remember what I just wrote. I have to keep checking.

You nor anyone, can convince me that a treatment that has been shown through high high numbers from 30% to 80% dis-satisfaction, numbers that say vast majority report permanent memory loss, all the former ECT patients that will admit secretly to the right people how damaged they feel, that this is at all a safe and efficacious treatment.

I have found that the severely depressed, or manic, or psychotic, of which I was one, are DESPERATE for anything that will make them less in pain. What people like Dr. Peter Breggin, world famous for his battle against ECT, have shown is that ECT takes a depressed, even suicidal patient, and makes them more prone to those things much much more, there has been at least one study to show that.

What else can I say? You can go to Mindfreedom and look at their ECT section, obviously they have an agenda anti-ECT but the facts speak for themselves. There are blogs done by people who claim their lives have been ruined from this procedure.

Why would I intentionally WANT to hurt someone’s feelings? That is not my goal. The goal is to stop coerced, and forced ECT, and I would like to see the procedure banned outright. I read more than a few stories of patients begging, begging for this procedure, only to regret it every second of the day afterwards. I have also read too many numbers of patients who were forced, even tricked into getting ECT. On girl signed up for just a psyche study, and ended up with 10 ECT’s as a result, and now feels so deeply traumatized

This entire period since Feb for me has been especially horrific, I have struggled just to sleep, have felt convulsive type feelings in my head, feel totally in a brain fog, and are you telling me that that kind of pain/torture is worth it? If just 1 out of 100 had my reaction, I would hope people would see this as very risky, but I have read most people have some kind of severe memory impairment, social impairment, and what about all the people who can no longer work, due to loss in IQ points? What about the people that struggle just to remember if they turned the stove off?

What about all the people who can’t drive, or only in their neighborhoods like me?

The problem is that people get desperate, and this industry just feeds into our desperation by telling us there is something out there that will cure us of this pain! It’s like how televangilists sell religion to make money, and people buy into that, giving untold of money for what is essentially a money making greed scheme.

This is not to say you don’t have every right to feel that ECT has helped you, and it’s painful to think a procedure that we willingly did, could have hurt us, and I believe you that you are one of the good outcome ECT cases. But we have every “god given right’ to share our horror stories.

Look I’m 35 and have wasted 4 years due to ECT, and I have every reason to believe in my case it may not even get better. When you reach states where you are in torturous pain, unable to sleep, with bizarre and probably dangerous physical sensations in your head, and your own doctors, who we need to trust, tell us nothing, then we have to rise up and tell our stories.

NinuccioSeptember 1st, 2011 at 2:32 pm

Devon, I have bickered with many folks many, many a time…but main interest is telling of the procedures that rehabilitated me. Rehabilitation is avery funny word in this sense. To rehabilitate a person with head injuries due to shocks you would need for him to become fully aware of his injury. That is exactly what the Rusk Institute does. If you have never heard…(and many fold here have not) of cognitive remediation then you may not have reached the peak of your rehabilitation. You would need to get there…to become satisfied that you understand the extent of your injuries. The reason why I say…the extent of your injuries…is that when you deal with cognitive retraining, you will be trained to recognize you “new” taught pattern. By recgonizing, you will be trained how to compensate for it. Don’t bother so much to quibble with people who have been assisted. Worry about your own rear end. As far as sleep, many times I have passed an article which was instrumental for me and speaks about sleep after head injury. It is impaired…rightfully so as your REM sleep is impaired post head injury. I wish I could do the same now…but if you look on my site you will find it. I was 27 when I was injured…by doctor’s hands. Nothing was done. They got away with it. However ECT. does cause head injuries…but the main thing you need to understand there is treatment which is specific to head injury…VERY, VERY SIMPLE…it will reestablish you to recognize you cognitive difficulties thus allowing you to compensate for them. Go for that…

SharonSeptember 1st, 2011 at 4:19 pm

I am one year post 9 ect treatments (I stopped them becasue I was feeling worse and had memory loss) I have had a documented loss of 30 IQ points originally my cummlative IQ was 137 now it is 107. SInce I am a physician this is having tremendous effect on my ability to work. THe working memory part of my IQ is 93. Genius is over 130 normla is 100 retarded is 80. I am devastated but neurologists say it is just becasue I am depressed. THe pre ECT IQ test was done while profoundly deppresed in the hospital. THe last IQ tests were done while mildly depressed and working. No one listen to us. They blow us off becasue of the stigma of mental illness. SO the ECT made my worse and stolded my cognitive abilities. I am about to go off on total disability a carrer decimated at age 53.

DevonSeptember 1st, 2011 at 6:50 pm

Sharon, that is what happened to me. Folks there was a big meeting at FDA headquarters as to whether to reclassify ECT machines from the most restricted, as in post a real danger category III, which it is now, to II, the same category a wheel chair is in.

Many of the people I have been communicating with, at psyche rights conferences testified at that meeting on Jan 7 2011. For no, we won! It is still a class III, as in a potential danger.

I knew some of those guys, Dr. Daniel Fisher I talked with several times at pro consumer, pro human rights types of conferences, and Dorothy Dundale who I spoke with over the phone. Many spoke in disfavor, while people like Kitty Dukakis spoke obviously in favor.

There is a war waging here, for our sanity, intellectual freedom, and peace of mind, and I won’t be happy until ECT is either banned outright, because the memory loss seems to be ubiquitous for all of us, and no one should have to undergo a procedure that causes that kind of pain.

They are always working on alerntative less invasive therapies, like TMS using magnets, but of course, that probably doesn’t do much, but it sounds much much safer.

DevonSeptember 1st, 2011 at 6:55 pm

sorry I think I repeated a topic that was already brought up.

DanaSeptember 1st, 2011 at 7:06 pm

seriously Devonp–thank you for being so articulate in this matter…Although I have gone through two years of rehabilitation I still cannot alliterate how frusterating things have been like you do. Thank you for that!!! Seriously if you have done one thing, I totally know what you are saying. If you repeat a topic or two, well geez, what can you do about ECTS??? Seriously, it is bad news with the whole repeating business….I keeep a journal that I write in all day every day and then read it over and over to get caught up on current conversations….it is how I do it…..NOT how I sHouLd do it….yet I compromise and strategize to come up with ways to relate with the world….seriously all of my “tools” come from my rehabilitation from after I was shocked 29 times…..It has beeeen a strugggggle…that is for sure………………

DevonSeptember 1st, 2011 at 7:22 pm

Dana if it makes you feel better, I have symptoms so horrific, basically my brain feels on fire now. It feels like, well it hurts, neruo’s said no biggie just psychiatric, which is why I want to see a brain damage specialist or brain injury doc.

Like you I’m using all of my tools. In my case I may continue to deteriorate, I was born hypoxic, maybe anoxic, without oxygen or limited, brain injury right there, then it led to a pyschotic disorder which further compromised my intellect, much like your average ECT person, then after 9 ECT’s, I think my brain has had it, and I have or may soon have the tardive dementia that dr. Peter Breggin talks about so much in his papers.

I’m going to fight this to the finish, see the job through, to quote one of my fave movie characters from Good the Bad and the Ugly.

I have to take Ambien just to stop the mindless, hollowed out “weak” brain syndrome that I have no idea if it is something that is unique to me. I’m smart enough to know that when you start feeling, cranial compression, loss of oxygen, and feelings of tingling, even bruising in the brain, that sounds a lot like brain damage. Oh and did I mention fluctuating states of consciousness? There were weeks when I was in slow motion, everything was slooow, and I did not know where I was.

then I went to Mcleans, again for sleep, now I’m a bit bit better.

I don’t intend to live a long life, and if I do I will be thankful. I used to be all about living a long healthy, life, now I want to just have justice served.

NinuccioSeptember 2nd, 2011 at 9:06 am

Devon-Cognitive remediation…(as it was given in the Rusk)…will detail your cognitive difficulties. It will not only allow for you to bring them out…but to write them down…recognize…but most important COMPENSATE for them. It will work on recognition and compensation together. It will be very slow, taking months, to years at times.
I don’t believe you can do too much about your sleep but ambien. I also take ambien. The injury offset your sleeping pattern.
Dana-I live my life on notes. Every injury is different, but the notes need to be properly written…(thus cognitive remediation classes)…and easily reachable. Computer program…John

DevonSeptember 2nd, 2011 at 9:43 am

Ninuccio, that sounds really quite accurate, you make so much sense. I talked to a Dr. Duckworth who recommended cognitive remediation.

I’m doing better today! For the first time in a year, I can think, reason, and have a lightness of mood about me, let’s prey to the almighty that this stays.

Ninuccio, I have soo much respect for you sir!

NinuccioSeptember 2nd, 2011 at 12:40 pm

Listen Devon, I don’t know about your moods, of being able to think, reason. I do know that you would need to maximize your “awareness potential. I live my life through a computer. I live by a calendar program. I know what to take notes of, what is not necessary. When I go out I take an index card telling me where I need to go…and what to do. This was taught me in the Rusk Institute. Since you have not taken the cognitive remediation classes I will make you aware…(that when you get to them)…you will learn all of the symptoms that cause confusion in your mind. The reason is simple…trying to repair other damage…the shocks caused damages. They call these “side effects”. You simply need to understand your side effects. Yet it is should have been an obligation of the folks who shocked you to make you aware as to the full extent of your “new” cognitive status. THAT needs to be done. It was kind of scary for me because I was maybe aware of a few symptoms…I ended up having 8 of them on my poster. Not only having them on the poster…but fully recognizing how each one effected me…These symptoms once recognized are not going away…but at least you will be able to handle them. First you need to find them. Be aware there is little understanding of ECT. (head injuries). Cognitive remediation is a very good tool…especially for those who are seeking awareness…I wish you the best in your quest…John

JohnSeptember 2nd, 2011 at 6:38 pm

Cartherine Pepper, RN. Please read my post dated November 21st, 20010. Please keep us informed as to how you are doing. I am a little concerned that you were working the next day. Remember, not everyone has a bad experience with ect and for many pt’s it has a dramatic positive effect. I had my first ect treatment September of 2009. I had my last treatment the end of March 2011. I am a cardiology nurse, working for a very demanding Dr. ( who I have a great deal of respect for ) in a very busy clinic. I returned to work in March. It has not been easy at all. My memory has definitely been an issue, however the lack of support and the attitude I received from my co workers has been the largest barrier to my progress. I had to inform my co workers that I had ect because it was obvious that something had happened/ changed. You would think that health care professionals would demonstrate understanding and be supportive…I cannot believe how niave I was. However, with all that said I do not regret having ect, I hope to God I won’t have to go through it again, but I am glad that I did go through with it. FYI, I received a total of 52 treatments.

JohnSeptember 2nd, 2011 at 7:20 pm

Leah,
Please keep posting. This site needs some objectivity. It is way off balance. If you truly believe that ect helped, you owe it to yourself, ect and others to share your experience. I am not saying that ect is a benign treatment by any means, for me there has been a price to pay. However it can save lives.
Dana, thank you so much for posting the quotation “It was a brilliant cure but we lost the patient”. I can relate to that so well, it has been a brilliant cure. And I am totally lost. Who am I now? where did that negative, self absorbed, miserable and depressed person ( the one that I knew so well) disappear too. Now I have an almost overwhelming task ahead of me. At the age of 46 how do I rebuild myself, how do I do everything that I need to do – every day – to ensure that I become the John that “I” want to be. Its a hell of allot of work, there are advancements and set backs. It is going to take allot of hard work and probably a long time, but taken one day at a time I will get there.

JohnSeptember 2nd, 2011 at 7:51 pm

Devon, you stated “I worked in around this industry”
I am just curious, are you a psychiatrist that administered ect, a clinical psychiatrist/psychologist, a psychiatric nurse or anesthesiologist that assisted with ect? Perhaps you were a rep. For Somatics promoting sales of the thymatron ect machine.
It’s hard to determine from your post. However, if you worked in the industry you must have a wealth of factual information. Please don’t keep us in the dark, share your information with us.

JohnSeptember 2nd, 2011 at 9:13 pm

Well, I must be on a role today. I just visited the home page. There’s a post “top three questions regarding ect”.

1) where can I find a facility that administers ect?
Response: I think it is unlikely you will find a clinic or hospital that administers ect without a
doctors recommendation.
I am confused. If the doctors providing ect are doing it for financial gain, why on earth would
they turn someone away. After reading the posts, I was under the impression that people
were being forced to have this treatment done. You know, hold them down and rape their
mind and destroy their lives.
2) Doctors response to questions regarding the negative information on the web.
Answer: paternalism. Sorry, I don’t think a paternalistic psychiatrist produces a patient
dependent on paternalism. This is 2011. The days where patients did what their doctors told
them without questioning his decision are long gone.
3) If ect is so effective, why are you searching the web. Surely you would accept it and move
on?
I can only speak from my experience. For me the ect has been effective. That’s not to say
I have not had memory problems, I do and some times it is distressing. The people I work
with don’t understand ect and there is allot of stigma associated with it that is hard to deal
with. I often feel very alone, as it is hard to find other people who have experienced ect,
They don’t understand how challenging the recovery can be – that’s why I looked to the web.
That doesn’t mean that it has not been successful for my depression, but I will admit it has
it’s side effects. I was hoping to find a place that would provide me with positive support.

And I wouldn’t get to excited about the Food And Drug Administrations dessission to keep ect machines classified as class three devices. Ect has been arround since 1938. I activists have not stopped it by now they never will. Not until a better alternative comes along.

Well I guess I have said enough for now :)

NinuccioSeptember 2nd, 2011 at 9:35 pm

I am glad of people who have been assisted by ECT. I don’t remember my ECT. Some have not. Some have been injured behond return. I had remembered nothing about my life at all. I was a walking zombie. Wife divorced…friends gone…lucky to stay alive only because my mother was there. I even found a college degree with my name on it, where on my papers prior to ECT. I had become a high school dropout. My mom died from wrong medications being given her. A lawsuit was not possible. I on the other hand…at some time in my life, was taken to Gracie Square Hospital..(out of my memory). I “was told” ECT. was begun on me without consent. When I complained to my mom and ex-wife the doctor decided not to stop it…It was then I had become a zombie. “THEY DID ALL THE DECIDING”…Here is one of the admission papers for cognitive remediaiton from the Rusk Institute…12 years later…
“Cognitive strenghts include basic attention and concentration skils, common-sense verbal reasoning skills, and problem-solving when structured with feedback. Visual memory performance was in the average range. Verbal memory is severely impaired, with is consistent with research findings on neuropsychological performances following electroconvulsive therapy”…
I am sure ECT. assists some people…but its quite apparent it destroyed me. It is also quite apparent the doctor lied his rear end off on all my paper…(showing the power of the doctor’s world). Even the ones that had me admitted to SSDI…(showing the power over the government).
Listen…get your neuropsychological testing properly done…then go on from there. Yeah, ECT. most be beneficial for some people…but I am pretty sure there are many more folks like me out there…and also the quacks are out there.Very well shielded and protected. Dr. Lothar Kalinowsky was one of them. Openly lied…no problem getting away with it…Ninuccio

DevonSeptember 2nd, 2011 at 10:26 pm

I’m raging angry. Listen, ECT is brain damage, it is frying the brain…does that not make some sense?

It destroys memory, personality, insight, overall “global intellect”. It destroys lives and I’m one of them.

No John I volunteered with NAMI local consumer chapter. I have so much anger, I am taking it out on my dad now because he is an electrical engineer who allowed such a thing.

Listen, we all have to try to heal as best we can obviously, but we CANNOT let these fuckers get away with this.

John it is a paternalistic industry, so much so that it forces, and coerces so many of us to believe in their bullshit.

I have RAGE, as in violent anger, at an industry that doesn’t allow a human being to even have anger, because “it is mental illness.”

If a dictator in another country can get away with destroying lives, I guess a multibillion dollar industry can do the same. BUT, THIS IS NOT SUPPOSED TO HAPPEN!

John we live in 2011, and for whatever reason, the treatments not only haven’t changed, or the change is the exact same package of treatments, heh, just wrapped in pretty bows to make us believe we are being treated well.

There is one clinic where the ECT doctor gives his clients a teddy bear and talks to them like retarded children. Well guess what, now I myself feel retarded.

My life is over, I want the doctors that did this to me to have the same treatment…ok, I have become an animal. I don’t know what to do…my illness messed me up, as in psychotic break that messed up my memory, and ECT finished me off.

I am so angry now, I can’t make anyone feel hopeful.

Ninuccio, The only thing I think can fix this kind of injury would be actual stem cell implants of neurons, some people in other countries claim they can do this, its probably either b.s. or very dangerous…

NinuccioSeptember 3rd, 2011 at 1:07 am

Devon…I see your terrible anger. I was extremely angry to when my wife was deciding to leave me and yet I had no access to assistance. I was stuck in the psychiaric arena. It was frustrating…BUT…not to repeat all that. Through my mom, finding the propoer treatments, and going forward with the proper treatments allowed for me to recgonize my injuries. I was able to tell the people close to me my situation realizing that they would not recognize. But I was able to do that. The neurospcyhological testing…and the followup of cognitive remediation, established me to me. I was able to recognize I was injured. I was able to recgonize…(very slowly)…its full extent. With the Rusk’s classes, while recognizing the injuries, I also was tested and given to now recognize my full potential.
Now that you realized the needs that you have (cognitive remediation) seek that out. As your brain potential improves you will also receive testing. Also you need to work intelligentatly to see where the money is going to come from to pay for the service. I don’t know where you are from but if you could make it to the Rusk Institute in Manhattan…that would be good. Now you simply need to proceed for rehabilitaiton. There is an agency here in New York City called VESID. Vocational Educational Services for Individuals with Disaibilities. They wiii undertake your situation and you could mention to the the Rusk. When they put you in the Rusk then the VESID Counselor and the Rusk will discuss your situtation periodically and decide how much time you may need there.
I have seen many types of injuries in my cognitive classes in the Rusk. I have made friends whom I still call and chat with sometimes. Your life has changed but you merely will be involved in another one. Neuropsych and cognitive remediation…Ninuccio

JohnSeptember 3rd, 2011 at 8:59 am

“BRAIN DAMAGE” IS THE WHOLE POINT!!!
I am not a doctor or research scientist, but I had been in a major sate of depression since I was about 25. I truly believe that people who suffer from depression have a pathophysiological disorder. There are two concepts regarding the brain and its thought process that make perfect sense to me. The first is the animal model of learned helplessness and the second is neurogenic plasticity. I believe that the two are intertwined and ironically play a huge part in exacerbating depression whilst at the same time being essential to getting out of a depressive state.
When we are depressed we tend to develop a negative thought process. When that happens neurogenic plasticity kicks in and new synaptic connections are formed or I guess you could say the brain becomes re-wired. As the the thought process continues the synaptic connections become stronger and the brain becomes “hard wired” for depression. There is no longer a need for a “reason” to be depressed, the brain is in a depressed state, those negative pathways no longer need to be triggered into action. They just fire away and depolarize on their own. Overdrive suppression prevents the firing of the neurons that are involved with positive thoughts and feelings and it becomes a self propelled state, gradually spiraling down to hell. This is not a choice, no one would choose to put themselves in such a state of physical and emotional pain.
I did not realize that depression caused physical pain until several months into the course of ect. I got up on a Saturday morning, made a cup of tea and sat with my Ipad and began to check my email (this had become my usual waking up routine). all of a sudden I was aware that I was experiencing a very real, yet indescribable physical pain. I remember getting up and pacing my living room thinking what the hell is wrong with me? Then it occurred to me, oh my God this is depression and then I thought, no, this is not going to happen. I have suffered enough and I cannot handle feeling this way anymore. I tried every trick I had learned in all those years of therapy. Nothing helped. finally, at the end of the day, tired and frustrated from fighting an invisible battle – I said to myself, John you have depression. This is not something that you can force to go away, but please stop fueling it! It persisted for four days and then abated. It continues to return periodically, but so far has always passed within days. Before the ect I woke up in one state every day, depression. There was never any reprieve. Don’t get me wrong, life is not a bunch of roses. I am still a person who has a depressive disorder. Ect has not cured me of that. But now I have days when I wake up and think, wow I don’t feel so bad today. Then there are other days when I wake up and think f–k this s–t. May not sound like progress to some, but to me it is a miracle.
So what is the connection between learned helplessness, neurogenic plasticity, ect and “brain damage”. If you place an electrode on each temple and pass 150 volts through the brain it would be my guess that you depolarize every single brain cell, causing a mass release of every neurotransmitter known to man. This causes a temporary elevation in mood. More importantly it destroys, or at the very least, disrupts synaptic connections. it’s a very crude process and is not selective. Unfortunately, The good connections are wiped out with the bad. However, fry the brain enough…haha! and you begin to destroy enough of the synaptic connections that form the negative pathways and the brain becomes less “hard wired” for depression and then gaps begin to form in the firing of the “negative pathways”. During these gaps there is no overdrive suppression, a neuron forming pathways involved in positive processing gets to depolarize and hopefully the vicious cycle comes to an end.
Like I said above I am not a doctor or research scientist. I have yet to find any scientific papers that explain how ect works (yes I know, a strong indication that ect has not been thoroughly studied and clinical trials are laking). What I have written are just concepts that I have read, and through obsessive compulsive thinking, I have chosen some “pieces” and in combination with what I have personally experienced, I have put those pieces together in a way that makes sense to ME.
I don’t doubt that ect causes “brain damage”, I don’t think it would work if it didn’t. I don’t care what anyone says, ect causes memory loss. I struggle with it every day. When I said I could relate to the quotation “it was a brilliant cure, but we lost the patient” I meant it. I think it sums up my experience very well. Obviously I am not taking it literally. I am sure that some people develop serious memory loss and a few may never recover. I do not believe it is the norm. I am an RN and I work in cardiology. I get to see how the American Heart Association, The American College Of Cardiology, The American Society Of Hypertension and the American Diabetes Association work to come up with treatment plans to prevent heart disease and national guidelines that determine how patients are to be treated once they develop heart disease. And I watch the doctors I work with implement these plans, guidelines and recommendations when taking care of and evaluating patients. I know of procedures that used to be common everyday practice, fall by the wayside because they were not very effective. Yes doctors like to be reimbursed for what they do, it is a job after all. I will admit, there are times when have seen a procedure performed and wondered if reimbursement wasn’t the motivating factor. There are also times I have seen a doctor refuse to do a particular procedure and perform a different procedure for which they will receive less reimbursement because they did not feel the first procedure was justified. I cannot imagine that The American Psychiatric Association or psychiatrists would be any different.
The nurses who work in ect clinics get to see the patients before starting ect, during ect and after ect. If anyone knows whats going on in an ect clinic it would be the nurses. If ect was anywhere near as destructive as it is made out to be on this forum and was not effective and caused more harm than good, there would be no need for any activist groups, nurses would have put an end to it long ago. Granted in the old videos on You Tube you see nurses assisting with the procedure, before the days of anesthesia and muscle relaxants. Sure looks gruesome. Imagine what it must have looked like to see a man have his leg amputated before the days of anesthesia. I had the option of having my leg sawn off or having ect, I think I would go with the ect….at least I would not remember it…LoL(oops, is humor allowed on this site).
One last thing, I place “brain damage” in parenthesis because if you believe in neurogenic plasticity, then you can see how it is very feasible that the brain can repair itself. Either the damaged ones will eventually come back on line, or preferably a plethora of new synaptic connections will form to overcome any deficits.
So there you have it. Dr. John’s theory on depression and how ect can help. Probably a bunch of B.S., but I think there is at least a tiny bit of science to back it up!

LeahSeptember 3rd, 2011 at 9:27 am

Thank you John, I said I would not check this forum
anymore due to all the negative talk. However my friend kept reading and bought your thoughts to my attention. I back you and you defiantly make more sense than anyone. The one factor that you did not go into that upsets me so much is the reasoning some people have used that ect is given to patients to make money! That is crazy. Thank you for showing more positive aspects of ect. I can honestly say without the ect I would have had a successful suicide attempt, instead now I smile again, laugh, have goals. And the severe memory loss ro me was a gait trade for my life back for me and my family.

DevonSeptember 3rd, 2011 at 11:52 am

yea leah destroy so much brain tissue, and synaptic connections that you are left even more helpless, numb.

Leah it is all about money don’t be so naive.

JohnSeptember 3rd, 2011 at 1:26 pm

Thank you Leah. It is a fantastic feeling to communicate with someone who has been through ect. It is not easy for anyone, but to finally meet someone who can “take a step outside of themselves”, make an objective observation, do a reality check, step back inside and think and come up with some positive conclusions!
I did actually touch on the financial issue ( you probably just forgot…LoL :) ). I think there is a possibility, probably very rare, where the procedure may have been performed for profit. Like I said, doctors are reimbursed for what they do and being a doctor is still a job. Doctors are also human and may sometimes make a decision, perhaps subconsciously, that is financially based. Having said that, if ect was that lucrative, every psychiatrist would have an out patient ect clinic and after a patient failed their first antidepressant they would be pushing for ect. I have met allot of psychiatrists over the years. They have all been very conservative with regard to recommending ect.
Also, it is ironic, this great triumphant achievement won by ect activists in January, when the FDA decided to keep ect machines as class three devices. Well, guess what, the threat placed on the “ect industry” is purely financial. As it stands, ect machines have been given a grace period. If by a certain date the manufacture’s cannot provide efficacy and safety information to the FDA then the machines will be banned. The only way the manufacturer’s will be able to provide the information the FDA is looking for is through extensive clinical trials, trials that cost allot of money that the “ect industry” doesn’t have.
I wonder who makes more money. Linda Andre and her new book. Cloth bound by the way, how special is that! Or a psychiatrist who works for a state psychiatric hospital?
And who can take a title like that seriously. I mean come on, Shock Treatment, the drama. That is a very outdated term, back in the early 1900′s there were many things used to induce a “shock” from camphor to insulin. And “Doctors Of Deception” The only reason I would bother to read a book with a title like that would be for amusement!!!
Thanks for posting Leah.

DevonSeptember 3rd, 2011 at 2:00 pm

John, look at 50 plus years of research on pubmed, as in clinical trials, there have been hundreds of ECT studies showing just that irreparable brain damage, dysfunction, global cogntiive loss, and even increased suicidality after ECT.

I have sympathy for everyone, including myself, who has had this brain destroying procedure.

The problem is there are too few people who will admit this in the industry because of profit motive, and fear of losing their job.

I could show all of you study after study of 80, 90 percent disastisfaction all complaining of permanent devastating memory loss, and personality loss, and loss of career, list goes on.

I am not here to try to rationalize or justify a terribly barbaric “treatment” that has destroyed so many lives.

I knew some of the people testifying against the reclassifcation, there were about 5 people who have endured great pain themselves, or seen their patients in great pain, one psychiatrist, (famous) had one of his patients hang himself after he couldn’t remember his friends names, he was 19.

It would be wrong of me NOT to come out and tell the ugly truth. Of course that doesn’t mean that we should just become traumatized for life, or commit to living like prisoners, we HAVE to move on and empower ourselves, only I think empowerment also comes from speaking out against terrible things done to you.

Finally John, the whole industry is about profit, this is true with physical medicine, and most everything in not just this country, but most of the world.

The nature of mankind/humankind has sadly shown so many have no problem profiting off of others pain, whether knowingly so, or just not wanting to think about it.

LeahSeptember 3rd, 2011 at 11:12 pm

Thanks John

I found humor in your comments regarding money. I am not sure what county everyone is from, but Australia is very different when it comes to money and ect. In the full-time 3 years I was incredibly sick with severe depression and anxiety. I was not offered it until every other avenue was exhausted. My family also told me in that whole three years ect was only given to one other patient. It is a very unheard of procedure here and after asking 5 doctors in my family today there are no reimbursements given to doctors for prescribing or carrying out ect. And of course my family would not lie. My doctors never lied, sadly they did not know (like may doctors do
not know every side effect or repercuctions). They never knew my whole memory would disappear. I see in my main Dr the guilt she feels and I watch her week after week try her best to help me deal with it and it has worked. Like you John I wake up and say great day ot this is crap I hate the world. But from everything I was tOld of the four to five years of turture this disease put me through. From what people told me along with severe suicide attempts I would do nothing but curl up in a ball and cry day and night.

After a huge amount of ect I came round and now (well before my car accident and waiting for my second part of spinal surgery) I am working some of my creative skills in my job came back without much effort and the rest I work on

What always keeps me from feeling sad on bad days is I compare myself to people in third world countries who get no help with any medical conditions. I actually feel very lucky all in all. Sometimes there are some bad things in life we need to learn to deal with.

LeahSeptember 4th, 2011 at 12:45 am

John

If there was a way to interact with you other than this website it would be great! I would love to hear all your knowledge. I wish you nothing but happiness and good health.

DevonSeptember 4th, 2011 at 1:05 am

Leah has some of your memory returned? What is lacking your experiences before eCT? If so how bad is it? I’m not trying to be an ass, I’m sincerely caring that you are doing well, I was very angry last night so ignore that please.

But i’m a bit better right now. Tell me, if you could, do you have any autobiographical memories still? how is your learning and comprehension for things you read? Can you commit that to memory?

I assume if you can work, and you are not depressed than you can say that is somewhat of a success. But what happens when the effects where off, usually in a month or less time? Will you go for maintenance ECT, thus creating further memory issues?

If ect is brain damage, or a series of brain injuries, (which is the big argument here,) it should be noted that brain injuries get worse with the more you get, so people, and there are many, who have had 30, 40, even in some cases 100 ECT’s are brain dead, I talked with some of them. Some are lucky to have some smarts even regardless.

I don’t think it’s game over but you have to work your brain and life is so much harder for me.

I would gladly take a debiliating depression over ECT. First of all ECT isnt’ even shown to be effective over a small window of time, second some, like me, didn’t even feel anything good on ECT.

Finally there are more alternatives now to beating depression, such as realizing exercise, eating well, and there are many many supplements that may assist. I’m not saying this is fool proof, but I valued my intellect, hopefully there is still hope I can get some of it back.

What I worry about is the many compariisons to ECT being like a boxing injury, the more you get often this can turn degenerative with time…I do not have the statistics or even know if people who have had many ECT’s do degenerate, but it would not at all surprise me.

The brain is delicate! Why are we ok with shocking, zapping, frying a soft delicate and most importantly, the only organ that makes us who we are!

CatherineSeptember 4th, 2011 at 1:38 am

I have had approximately 60 ECTs since 2000. I work full time night shift as an RN, train staff, am a competant mother of 3 sons(including 1 very ill with bipolar who I care for), and 2 grandchildren. I also have a university degree and do NOT consider myself brain damaged in any way!

DanaSeptember 4th, 2011 at 1:44 am

Devon—>For being so “damaged” you alliterate my circumstances so colorfully. Thank you!! what I find so interesting is when I believe Leah said that she had exhausted all the other treatments to her depression…this I could understand. For me, this did not happen. I actually took chantix to quit smoking and went into some sort of manic state which I then went to see a regular physician about wheras we then discussed the possibility of me having bipolar and then she prescribed me a pill called wellbutrin….within a month I was FLIYING HIGH HIGH HIGH….and then came the suicide attempt. After a brief time in the ICU I went to the psych unit and at that point I was given an antidepressent and some trazadone and told that ECTS may be the best help for me but to do some research before I made the decision. I HAD NEVER EVER BEEN IN ANY TYPE OF PSYCH TREATMENT before this so I really had no idea what was going on. I decided not to do the ECTs as I thought that was pretty extreme according to my circumstances and went home on some very new psych drugs….I spent the next five months on different psych drugs and eventually became extremely suicidal…at this point the docs told me that ECT was my only option. Now, in hindsight I can see this was a ridiculous thing for the doctors to suggest seeing that I had never been on a single psych drug in my life until I was on my first one(chantix) and it sent me into a manic state…since then they continued to pump me full of different meds(all except the cheap bipolar pill that eventually fixed everything called lithium…but I’ll tell you a little more before we get there)….I had 8 months total of being on meds…that is IT…plus it was the meds that sent me to a manic state in the first place…anyways….after 8 months the docs told me ECTS are YOUR ONLY OPTION… When you are that low….so low that nothing else matters…your world is full of apathy…your only option of ects sounds like your best bet. So I went ahead. I did have a friend(social worker) that was absolutely against this treatment but I did what the only option I had to do. Somehow I went through 29 consecutive shocks…somehow I managed to let my whole memory system get completely derailed…somehow I managed to let some doctor that new me soooo briefly to convince me that frying my brain was the ONLY option. The doctor seriously knew me for less than a week but read a few of my monthly charts from my current psychiatrist. This doctor shocked me 29times and then thankfully my “original” psychiatrist stepped in an demanded it to stop as she saw absolutely no gains from the treatment. Thank goodness for her!! I was sooo ignorant and trusting in the psychiatric system…I was a baby to this field and had absolutely no idea what I was getting into… I(as well as my family) did think it was a bit extreme for the docs to suggest ECT but we trusted their judgement as any patient should be able to have trust in their doctor. I am now totally aware of my past mistakes and would like to do whatever possible to make sure this kind of treatment does not happen to anyone else. Some might say I am a rare case…yet I find this hard to believe when I was treated at one of the best medical facilities in the WORLD…the ol’ MAYO CLINIC…they should not have medical rarities like myself. And the sad thing is I am not….I was fortunate enough to have great medical insurance so I was immediately sent to cognitive rehabilitation after ECTS and have had such beneficial treatment….I have been in contact with those on “MA insurance” and they are not doing as well just a couple of years later. They are still struggling with things like getting lost in town, losing things, missing things, forgetting things, etc…etc…etc… I was lucky enough to learn how to compensate for the brain damage that I endured. The funny thing is months after my brain damaging ECTS I was doing WORSE THAN EVER then finally I was put on Lithium and that was the lifechanger of it all. I had to endure enormous amounts of agony that I did not deserve or require for my “treatment”…Brain damage was NOT MY ONLY OPTION…I can understand where brain damage may seem like the best LasT option but I was not there…I know I am not the only one out there that has gone through similar experiences. I absolutely know there is money behind this….seriously…if they would have sent me home with a perscription of lithium in the first place they would have never gained the hundreds of thousands that they did from giving me ects and then the OTHER hundreds of thousands that they gained from TREATING ME FROM MY ECTS in cognitive rehabilitation. Oh man…it is really just sickening, angering, and sad…..I would NEVER EVER WISH what I have gone through on anyone else and would do anything to let anyone know absolutely what they are getting into when choosing ECTS…

DanaSeptember 4th, 2011 at 1:57 am

Catherine…you know when you leave comments about how well the ects went for you and you do not feel brain damaged at all…well it makes me think to when others say I am being weak for feeling depressed or I just need to be strong and “deal” with things. I am happy that you found a brain damaging treatment(that doesn’t make you feel brain damaged) beneficial for you…but it is like telling a person with depression that if they don’t get some benefit out of excercising 30minutes a day that it must be too bad they don’t understand how great they must feel from it….everyone is different…everyone will feel different from the “same” treatment. To me it is not “shocking” that someone would feel some sort of euphoria from a concussion syndrome as it is well documented in medical journals. This is not a TREATMENT or CURE for depression though. I could seriously smack you over the head and you would probably feel the same way after you do from ECTS…yes that might sound silly but what seriously sounds sillier…..shocking you with hundreds of volts of electricity or hitting you in the head???? It is all really just extremely absurd and I am really sad that we have all been a victim of this whether we realize it or not.

DanaSeptember 4th, 2011 at 2:00 am

Oh and yes..thank you DEVON….why in the world would we allow someone else to shock to only organ in the body who makes us who we are?!? What a good question…

leahSeptember 4th, 2011 at 3:40 am

Dana, please do not think anyone is meaning harm to you by their comments especially Catherine. We are just trying to show there are two sides to the story. In some cases ect has worked and saved lives. Some like me with huge side effects and some like Catherine with minimal.

I felt bullied on this forum by people calling me naive, chuckling at my words and feeling. Catherine and I and a few others are very allowed to say we believe in ect and respect others have their own view.

Dana, there was no way Catherine was having a go or belittling anyone. In fact like me she was just showing it is not all bad for everyone.

I am sorry you are having a very hard time and I truly hope you get the help and support you require.

steveSeptember 4th, 2011 at 5:35 am

i am catherines husband of 28 years, and am truly fortunate not to be inflicted with bipolar and its life long daily rollercoaster ride. When Catherine one of her early ect’s (quite a few years ago now) it was at a public hospital where she was kept for about 3 weeks, the first few sessions were fine and of no consequence, the next few she felt as though she was getting better, by the 8th they told me to pick her up and there was a problem, I never found out what the problem really was but she had lost her memory and her personality. It took around 3 months for her to become normal. A few years following she had good sessions and bad sessions. none as bad as that one.
Since going on this recent treatment with her specialist ,whom i’ve met and feel comfortable with his methods, she has been happy ( and not just putting it on for me ). She thrives at work embracing on going education and has been an excellent example in my opinion how ect can when shaped for an individual, be of great benefit, not for everybody with similar complaints and never to be taken lightly, but when your desperate, and the drug merry go round just isn’t enough on its own, then an informed decision can be made. Just like all operations / procedures, there is a risk, and for my wife, i am glad it has turned out the way it has so far.

NinuccioSeptember 4th, 2011 at 7:55 am

This is just a matter of awareness. DEFINETELY there are risks when the brain is touched…(for whatever reason). A good, competent team of doctors is mandatory. Neuropsychological testing needs to be given prior to these brain altering procedures. Consent forms will need to be signed. The outcome is not well known. Then the same testing needs to be administered post ECT. If it was properly done before…it should detail some favorable changes. That is why lots of attention needs to be given to that testing. Let me present you quickly with a situation where they simply screwed up, and then they simply had to cover up. They did that without problem. I had already received neurosurgeries and the doctor covering up said I was 100% physicallly and mentally. Wrong…but who was there to contest them. The other doctor. Dr. Lothar Kalinowsky…(well established member in the shock world)…simply, and without much concern, upon me being taken to Gracie Square Hospital, decided…without consent…to pound me with shocks. Told my mother and my exwife. The only think I needed was time. All of these lies written by these doctors to the open, you simply need for them to be written down by another doctor willing to go against them. HOW MANY DOCTORS DO YOU SEE GOING AGAINST OTHERS? Then now you would need rehabilitation! Psychiatry is a great tool…but it fails miserably in head injury.
So without talking about these losers, you will now, if you are lucky, will be able to meet another bunch of losers. The ones who can rehabilitate you to understand the full extent of the damages that were caused during the head injuries. Here again neuropsychological testing…plus…an addendum of COGNITIVE REMEDIATION. THAT will simply take those symptoms diagnosed, allow you to work on them, and drag out from them the rest of symptoms which now are part of you taught pattern. That is critical…because if a person is able to understand he/she has a short term memory loss…and not able to understand the other symptoms closely related it, and sometimes part of it…then he is not fully aware of his cognitive status. There should be other symptoms never forseen that will need to be acknowledged. Even though a doctor, whom I had never met, and just spoke on the phone one time. (He aware had all the paperwork my mother and I laboriously had gotten together).
He finally brought out a new report…a TRUE report. But my main rehabilitatoion was done in the Rusk Institute, here in Manhattan, within approximately 3 years.
I went from an intractable anxiety…to…long term memory loss, short term memory loss, focusing what is said, memory dejavu, time and place disorientation,impaired insight and judgement, distractibility,emotional gaiting and a physical hemiparesis on my right hand side.
At least I know…Ninuccio.
THis is not written as a complain…but an awareness…as you are dealing with head injury…where most doctors don’t even know what it is…and the ONES who rehabilitated me had to work together many times, and concisely…(my life was on the line), trying to properly diagnose and TEACH…(ALLOW ME TO LEARN)…my new symptomology.
This is an awareness for the rest of anyone who is interested…fooling with the brain?…

JohnSeptember 4th, 2011 at 3:17 pm

Devon,
You addressed this question to Leah, but if you don’t mind I would like to share my experience. (I am sure you are supprized)
Firstly I would like to emphasize my empathy for everyone who has found ect to be a negative experience. I can relate, I do have memory loss, not disabling, but extremely frustrating. I have made some sarcastic comments, which in retrospect were inappropriate. I apologize, but as Leah mentioned, some people find the side effects a fair trade off. Like you mentioned, the other night you where angry. I have been angry too. I am glad I had the ect, but at the same time have frustrating side effects that make my life challenging. There are few people who understand ect, in fact most think it was a treatment of the past. There only knowledge of the procedure is from “One Flew Over The Cookoo’s Nest”. When I turn to people for help I feel judged. I was looking for a site that could offer support. I would hate too see ect banned, I feel it would be a huge loss, and because of that I doubt it will be.
I would like to address two comments you made.
number one: in order to administer ect you have to be a psychiatrist, if ect where banned they are note out of a job. I doubt their annual income would Change dramatically either.
Number two: I do not think that that combining the results of clinical trials over the last 50 years would be clinically relevant. True, the basic principal remains the same, but the way ect is administered and the selection of patients has changed dramatically.
Unfortunately I will have to stop there, I will go into my memory loss, work experience later.
John.

DevonSeptember 4th, 2011 at 7:36 pm

John you can read people like Dr. Peter Breggin, who used to administer the treatment explain in interviews on youtube, that the voltage is like 3 times higher to overcome the muscle relaxants and anesthesia.

He explains ECT causes pin point hemorges in autoposy. Obviously I can’t prove everything the man says is right, but I have read some disgusting recent studies showing not only people anecdotaly saying how much the treatment hurt them, but you can read recent as well as decades past studies explaining how it damages the brain.

instead of depressing you or anyone further, just remember, modified ECT has been the same since the 60′s, yes some sine waves treatments are a thing of the past, but I’m pretty sure the voltage has been the same, and even gone up, since we saw Nicholson writing in Cukoos nest.

I think we as former patients have to swallow our pride, and admit the truth to how bad our memories have become, or any other common adverse symptoms which so many of us seem to be stuck with.

This is not saying give up, but, ECT has FORCED so many of us to…I think we owe it to ourselves, and all of us who have been, frankly, betrayed by the industry, and left with permanent problems, to speak up! Tell the American Psyche Association, tell NAMI, tell our politicians that we are outraged, even if it helped you.

What I’m saying is, even if you think it has some positives, we are all worth it as equal human beings to stand up for our rights, and our lives when we have been also left with deep problems, scars, call it what you want.

Finally, I pray you are doing well John, but so many of us are not. Obviously for those of us who feel damaged in anyway, we deserve safer treatments. I’m sorry but shocking the brain is obviously not the way to “a healthy mind, or soul.”

leahSeptember 4th, 2011 at 9:40 pm

Devon

I lost my complete memory i am 33 now I got sick at 26 finally left hospital and was well at the age of 31 i have the memories from 31 and half up until now. I lost all recognition of people, all experiences in life, everything. My job was high up in television that required a huge amount of skills and creativity. I thought for so long I lost my skills but in a real sense I have not I pick up my tools and some how my muscle memory remembers a fair amount. My job involved two different skills one i was in the middle of studying while working sadly that one I had not done long enough and i lost that skill, but I am not too worried it brings me no joy and was pushed upon by my employer.

I am not saying I never have hard days in my life having no memory, yes it’s embarrassing when people approach me i have known for years but have no idea who they are, but about six months ago I posted what happened to me on facebook so I do not have to pretend any more and I have also let people know someone who who looks like they had it all a great job, plenty of money, famous boyfriend can get sick.

As I have become curious and starting asking questions the things that happened to me that lead me to becoming ill, I am so glad I have no memory of. They are far more horrific than ect.

I am slowly for some reason remembering names but cannot tell you anything about the person, on a rare occasion I can put a name to a face. I also find some music familiar. I guess it’s stories, experiences and general stories I cannot remember a thing about.

I have hard time like i said some days but, i look at this as a whole new chance at life i have broaden my outlook on so many things. I know now i am doing things I would have never have tried before. I also learnt who my friends were. I learnt not one friend stuck around the whole 5 years even my best friends. So that was a lesson I am very glad I learnt .

I think Australia and the US may be very different in how ect is managed. I am very sure my doctors are full of compassion and I have had access to all my records and ect was the only option. To the person who mentioned all the other things that could be tried, I did we tried everything including all therapies exercise, nutrition, supplements, medications, I can go on and on, It took seven hospitals 5 doctors until we found the right place to be. My main Dr is amasing if i could be anyone in the world it would be her. She still to this day has nothing but my best interest at heart.

I just really don’t want someone to give up like I did with three of four suicide attempts leaving me in a coma one for 6 months and not be so lucky to wake up and be given the option of ect. It took a hell of a lot, more than what doctors wanted to give, but treatment after treatment my family and doctors saw a change.

I am more than happy to say i left hospital taking 22 tablets a day, anti depressants, anti psychotics, mood stabilisers the list go on and on. Today I take nothing. Since leaving hospital I am sure you can imagine the challengers i have had, learning the horrific things that happened to me prior to being sick, not going back to my so called glamorous life, 5 years lost income i can go on and on. And then my car accident leaving me to be able to do very little. Four major spine surgeries down two more to go and still the depression has not returned and I know its the ect it has stopped that part of my brain allowing me to get so ill.

I never say ect is the answer for everyone, and I do feel so deeply sad for those who regret it, or had it forced upon them. I am just saying for some it can be the answer and in no way in Australia is it prescribed for revenue, this I 100% know. It is not barbaric, its nothing like the movies, and there are more people walking around better of for their ect treatment than not. I look at life as positive as I can now, people in third world countries suffer so much and have no help. That makes me feel so lucky and I keep that in my head every hard day.

I wish everyone well on this forum and am in no way putting down people who are not coping.

DevonSeptember 5th, 2011 at 1:33 pm

Leah I feel your pain..your story is not that far from mine, to be honest. I was desperate like so many, and ECT was sold so well to me, and my family.

The difference between you and me, perhaps, but I don’t want to sound harsh, is that my entire life revolved around my intellect, not saying you don’t care about that just as much, but I see too many people, young and old, who are convinced that anything is better than feeling depressed…this is not true.

For instance if you have a horrible neurodegenerative or wasting disease, you would think nothing could be worse, right? I saw a youtube video where someone with ALS, along with many others with terminal illness believed an overseas sham doctor would cure their condition with stem cells.

Most should realize we are only at the infancy with stem cell therapies because of the hold up on studying the stem cell lines.

These people already in worse pain, than probably any of us, not being able to talk barely, move, in a wheelchair knowing they will die, ended up in worse pain from the fradulent sham therapies.

So, I think ECT is very similar. I honestly believe that the pain and suffering I have endured from not remembering things, to not being able to do simple things, is far far worse than my worst depression, because even doubled over in a fetal position on my couch, I at least knew I would eventually beat it, or I could write on my computer etc.

Now, I have no doubt that someone with mental illness who is not getting better, and is basically in torturous pain, like I had been for years, surely cannot be left like that, and they desparately need help, or some treatment.

But ECT has shown no efficacy after the duration, or shortly after of the treatments. So people fall back into their cycles of depression etc. only to now have to deal with crippling personality, memory, and functionality problems, that many have to deal with for life…maybe all of us?

So the first step for survivors of a treatment so dangerous is to admit that you, me, everyone has been harmed, and that it was wrong, unethical, and stupid on our doctors parts to recommend we do this.

The anger I feel knowing that I was NOT told the truth, about what I could, or would face with all my post ECT problems, far outweighs any belief that a temporary “high” which I did not even get, from blunt force shock, woudl ever be worth it.

We knew the Dukakis’s, I’m happy Kitty is ok with her memory loss, and apparently she is doing far better than me.

NinuccioSeptember 5th, 2011 at 8:36 pm

“The anger I feel knowing that I was NOT told the truth, about what I could, or would face with all my post ECT problems, far outweighs any belief that a temporary “high” which I did not even get, from blunt force shock, woudl ever be worth it…”
When I began my cognitive remediation classes in the Rusk Institute it was because of a support group that my mom used to take me to. I couldn’t even get to the Rusk if I wanted to. (Before the injuries I used to drive Cadillacs in Manhattan for a certain company, now I couldn’t go from here to there wihout forgetting where I was going). I would eventually be admitted to the Rusk and begin receiving cognitive remediaiton…accompanied by a DVE. program and a WPAT. program. DVE Diagnostic Vocational Evaluation…WPAT. Work and Personal Adjustment Training.
One of the main injuries of ECT. is losing “awareness” of oneself…and that most probalby will not be known because I know doctors don’t do too much testing prior to ECT. They don’t even do too much testing post ECT. Why?…to cover their REAR ENDS. You are simply left in a world of confusion. What you need to also learn is that within the medical system there is treatment for “cognitive difficulties”. It is called “cognitive remediaition”. In the late 90′s I went to a meeting of ICD. International Center for the Disabled…and for the first time…EVER…I heard that they were giving cognitive retraining. I was glad because at the time I was receiving “cognitive remediation” at the Rusk Institute. Because of my head injuries..impairing my whole thinking apparatus….(and also because even before I was head injured I rarely cared to get into debates in my college classes at Bronx Community College)…I was able to blurt out…”how long are the classes for?”. The reply was …”for 3 months”. I at the time, had been in the Rusk for 2 years…(and would keep on receiving cognitive remediaiton for another year and would keep treatment for another approximately 3 years. ). What the heck would have three months done for me but confuse me even further. So you see, even those years of the late 90′s “cognitive remediation” was not clearly defined…nor given, except for the Rusk. Cognitive remediation takes as long as it takes. I have seen it being given from 2 years minimun, to 5 years maximum. Now we are talking about New York City, where these things are surely taken care of…(?)…supposedly. Well, I hear noone speak of cognitive remediation. I have heard of noone explaining as to how it works. When the brain is injured your thought patterns are disturbed to whatever extent. The cognitive remediation is essential to construct your cognitive status. Constructing your cognitive status would mean bringing it out, understanding it, while understanding how to compensate for those injured brain fibers. It will slowly bring out what it is. There seemed to be a reluctance to learn…and change your whole thought pattern…yet that was what the classes were about. Your strenghts…(memory, judgement, etc.)…and the cognitive deficts, which are most important to understand…because you are living your life under these symptoms…and you don’t even know what they are. It would be very productive to understand what they are, and how they cause difficulties in your life, and most important how to compensate for them. This is the basic “new” you. Once you have your neuropsychological testing done and have those symptoms put on a poster, and begin working on them, you WILL, through the very simple exercises, with the assistance of the cognitive remediation coordinator…(doctor from the Rusk)…and also the group memebers, BEGIN TO ADD NEW SYMPTOMS on your poster. RECOGNIZE them. Know when they are happening…and slowly learning how to compensate for them when they happen. Your whole life will be changing…as the brain “dysfunction” is coming out, and the compensation strategies applied…to patch it up…and make if not fully functionally…at least aware of its deficits…Ninuccio

JohnSeptember 15th, 2011 at 9:40 am

Well, I have had a very busy schedule the past few weeks and have not been able to check in. Anyway, I hope that everyone is hanging in there. I have had some positive experiences, first is not really new. But I still have not relapsed into a “major depressive episode”. I still have days when I feel I could feel better, but what can I expect. I have a depressive disorder, I never expected ECT to be a cure. For the most part I look back on my day and think “wow, this day has not been too bad”. That is a miracle for me. Also My last treatment, the 52nd, was in the last week of March. I do feel that my memory is getting better. Or could it be that I am re-learning. I guess I am lucky, my ability to learn was never severely impaired. On the less positive side….I have been somewhat isolating since I returned to work. I end up staying late at work, sometimes very late. I seem to be a little slower since the ECT. Then when I get home I study to make sure that I have the knowledge to perform my job safely. Anyway, I have tried to change that. I hung out at my best friends house yesterday evening. We decided to grab something to eat. His partner had his car so I drove. I put the key in the ignition, started the engine and placed the shift in reverse. Suddenly my friend grabbed my arm and with a look of panic on his face blurted out, “are you ok to drive”. I just looked at him and said “you have to be f-ing kidding me!!!” He apologized 2 min. latter, but it is just frustrating. People just don’t understand. Unless you have been through the experience it is not possible to comprehend it. I think that may be why so many people have a negative response to psychiatrists after ECT. Like I have said, I am in no way against ECT. But, you can go through med. school and complete your psych. residency, become certified in administering ECT and spend a lifetime plugging patients in. But unless you actually go through it you just don’t know. Their was one other thing, but I forgot what it was…LOL. Probably just as well. Any one interested in an uplifting experience, search for Sherwin Nuland electro, you should find a link to YouTube or TED. If you haven’t seen it it’s worth watching!
How is it going Leah? Everyone take care, John.

SuziDecember 6th, 2011 at 11:45 pm

I am trying to find others that have suffered the effects of ETCs and thought this website would be a great place, but I noticed that there has not been any posting in a long time. Is this still active and people still making postings. Does anyone know of any other blogs or some place else where I can find people that can relate to the experiences that I am going though. Thank you

CatherineDecember 7th, 2011 at 1:01 am

Yes Suzi, its active, I regularly check and sometimes leave comments. For what its worth, Im an ECT success story.

JohnDecember 7th, 2011 at 3:22 am

Hi Catherine, if you have read any of my posts you will see that I consider myself an ECT success story also. Unfortunatly it has come with an expensive price tag. If I remember rightly, you are an RN. I am also. My last treatment was towards the end of March. I soon returned to work due to threats of termination. Looking back, I returned too soon. I started ECT in Sept. 2010 and had a total of 52 treatments, with a minimum of 1 per week and a maximum of 3 per week. I had really bad memory problems when I first went back to work. Someone would approach me and say happily “OMG is that really John, your back. It’s so good to see you, I have missed you so much”. As we went are seperate ways I would be thinking to myself-who the hell was that!
Also my time management skills have been affected, I find it impossible to get anywere on time, work included. Luckily my clinical skills are very much intact.
However, my job performance has been effected. I am just returning to work after my fourth request (by my manager, not me) to take time off. My memory is improving, but smometimes I still feel as though I am not all here. My confidence has been shaken too.
I would like some possitive input as to what would be a realistic time at which I could expect to feel back to normal. I have concernes about loosing my job and perhaps my mind never fully recovering. However, I would like to reiterate that I consider the ECT to have been effective.
Thanks, John.

KathleenDecember 12th, 2011 at 3:13 pm

I am thankful for finding this site, and for all of your candor and strength. At this moment, I am crying because ECT is one of my last options.
Here’s my story, I’ll try to keep it short.
I have lived with major depression, recurrent for 20 odd years. The list of medications that I have tried and found ineffective contributes greatly to my hopelessness and helplessness. Therapist after therapist, doctor after doctor, year after year I have struggled and have reached the end of my rope with my status quo. My quality of life varies from little to none and as some of you may know, just having the knowledge that you are more than a mental illness, if medication interventions are not effective, these thoughts can be quickly trampled. As I have heard others say, I am “sick and tired of being sick and tired”. I have spent 20 years being a chemistry experiment and always held out hope that the NEXT medication would work. The dr. that I see for meds is exasperated with me (my brain, anyway). She has resorted to even changing my diagnosis due to my med. resistance. The last medication she put me on was Prystic, which she pulled out of her filling cabinet. Apparantly, she had recently met with reps who wined, dined or otherwise influenced her. (as I believe happens with the majority of drugs). I am quickly getting to the point that I will have exhausted medications to try if they cannot break thru and provide relief.
So, my options are to seek out all the alternatives. I have researched some natural treatments (which are not tested for effectivness or safety). Some options are not covered by my insurance. I am currently researching TMS (trans-cranial magnetic stimulation), which is not covered by all insurance companies (mine happens to be one of them).
I am not to the point of committing suicide, but the thought does seem to be an odd comfort of sorts. Sounds messed up, even to me.
All I know for sure is that the hole I am in is dark and so very lonely. Dispite all the info. out there, a number of medical “professionals” do not understand my depression. My med. dr will ask me if I am still in therapy and what life events are going on. She just doesn’t get it and it’s costing me alot emotionally, and she still makes money off my visits whether or not she is sucessful. She and some people in my life seem to think that if I just do “this” or just do “that”, I will be better. That’s the same as saying if someone had diabeties (sp?) or any other illness, they have the power to will themselves better. Really, in what fantasy world do they live? I’d like to buy a house there…it sounds great!
Ok, so for now my miserable life continues, day after day after day. I have a niece and nephew who truely the lights of my life. They make me forget for the time being how F*cked up I am. I spend as much time with them as possible and they are what I try to think about.
The mask I wear to hide the true depth of my depression is beginning to crack and I truely do not know what to do to help myself. The side effects of ect are of much concern to me but the memory loss might be a blessing in disguise as long as I can remember my own name and where I live! Somehow I will find a way to hang on, I always do. Thanks for reading…I know it was not short or sweet.
Take care everyone! :)

NinuccioDecember 12th, 2011 at 10:39 pm

I have read your input. I always said that I was not against ECT…and I do believe ECT. is a last resort. Tomorrow…having more energy…as my energy is constantly impaired post my neurosurgeries and ect. followup. You notice I have had neurosurgeries prior to ECT. Yet what is important for you understand from my situation is that the ECT. according to my mother…who passed away few years back from being given the wrong medications…and the doctor was never taken to court. In a way. What I am telling you…through personal insight…through a computer that I was never assisted in getting for rehabilitation…(which I very much needed). Through a program which I found accidentally on my own, and today approximately 30 years later, there seems to be any type of comprehension to the needs of a head injured person. The medical system lives under a vast array of faults. That you need to become aware of as you enter the world of head injury. Should you chance ECT. that you would need to have all the information you can gather from various people on the effects of ECT. I was lucky. My mom was alive, and capalbe of directing me to cognitive remediation in the Rusk Institute in Manhattan. I have also had to photostat one of those papers and keep in my wallet, as every doctor I meet, none of them are even aware of the treatment I received. And I live in the Bronx of New York City. You would have to learn that the medical system itself is comprised of many doctors. Some of them commit terrible injustices…YET…they are very well shielded withing their own malpractice insurance fees. May sound off the wall…but this is all true. If it scares…well let it. It does open up your awareness that ect. DOES cause brain damage. It should open up your awareness that if and when that brain damage occurs, who is going to direct you to proper rehabilitation…(which does exist). Only problem the doctors themselves don’t pass the information on to others. So if you get to the right place, it will only be because of luck. I was lucky my mom was around…before they put her away.
Like, I said, I am tired right now. Don’t forget when you hear someone giving you insight…(awareness through experience)…don’t be critical. Hear it. Store it. Then hear other advice. Store that too…before you make a judgement. I will tell you I received my cognitive classes in the Rusk Institute in Manhattan. Three years later I was passed on to a doctor who used to work in lower Manhattan, where she, unlike a psychiatrist, or a clinical psychologist, had worked in the Rusk…and was aware of the treatment I had received. So I was treated not so much as a patient, but a person who would need her to keep his brain together as he was continuously developing the techniques taught in the Rusk. She knew that…BUt…when I returned to the Rusk, as she had suggested for me to be reassessed through their testing, the doctor there told me I could not return since I owed money. I was passed on to Bellevue Hospital, where I realized the doctor whom I was supposed to see was not there. When I told the doctor I had been in the Rusk for 3 years receiving cognitive remediation…he tells me…”what is that”?…and had me neuropsychologically tested where only 3 of my eight symptoms were diagnosed. I was simply in the wrong place. The wrong direction. The reason why I tell you this is so that you realize, should you become head injured through your ect. you simply may not be capable of handling this type of disrespect that exists in the medical system. I will get on tomorrow and give you some more factual information. EVEN if its negative, you can gather this, and other places where they may give you positive information. That way you will have a far better insight of the potential out there. I want to tell you that the doctor who injured me washed their hands. They lied on all papers finally releases…YET…they were never touched…therefore be wary of all the material necessary before you direct yourself in a very negligent…(to put it mildly) medical system. God forbid you injuries are serious…you wouldn’t have a chance…and just like with me…they would wash their hands as soon as your injuries would be caused…Ninuccio

JohnDecember 13th, 2011 at 2:43 am

Hi Kathleen, thank you for your post. There are several options that you have, even if you decide to have the ECT. 1) you are free to stop the treatment at any time. If you feel it is not helping, or if you feel the memory loss is is worse than the depression, then stop. Another option would be to have unilateral ECT instead of bilateral. Every time I would show up for my ECT appointment, my psychiatrist would ask about my memory loss. Mine was significant and I was offered these options. However, for the first time in over 20 yrs my depression had significantly improved. I insisted that I did not want the treatment plan to change in any way. Because the proceedure is done under anesthesia, I was afraid he might change the electrode placement and I would not be aware. I made him promiss he would not. I rememember that after every procedure, when I had become clear headed enough to ask, I would allways inquire as to the duration of the siezure. Anything less than a min. and I was extreemly dissapointed.
2) If you are undecided hold off and just know that this is a possible option for you. ECT is often effective, especially in cases of treatment resistant depression and the results are usualy noticable in a very short period of time. You don’t have to rush into this.
3) I wish I could provide you with the references, but can’t at the moment. However many, many, many people recieve ECT each year. Visit the ECT web sites and count the number of people who are not satisfied with the results, they seem to be a minority. For alot of patients the memory loss is relativly short, less than 2 months. For others it may last 2 years. Unfortuanatly it is possible it may last for ever. It’s a case of risk Vs benefit. And remember, if you start to feel unsure about the treatment-just stop. The fewer you have the less the memory loss and the greater the likelyhood that it will be temporary.
For me, I had reached the end of the road. I was done with the misery of life. I have seen the same therapist for 7 years and she swears that I am the hardest working and most determined patient she has. Despite that she tells me that for the 3 month period before I decided to go through with the ECT, each time I left her office she thought it would be the last time she would see me alive. She really thought I would kill myself, as did my mother.
I have suffered significant memory loss and have been asked by my empoloyer to go back on dissability 4 times since the last ECT tratment. This is my second week back. Last Friday my boss called me into her office to say that she has noted a huge improvement and that she is very pleased….there is hope. Regardless I will never regret the decision to have ECT.
However, IT IS NOT MY PLACE TO RECOMEND IT EITHER. It’s a personal choice.
For now you can just consider it an option. Learn all you can and don’t rush into it.
I wish you the best. John.

NinuccioDecember 13th, 2011 at 7:11 am

It is now 7AM. Best time. My clearest time of the day. I want you to read the post of Dr. Lothar Kalinowsky…the doctor in New York who took me out of action. He was also the one who had me accepted to SSDI…(Social Security Disability Insurance)…most probably because my mom had asked him to write a letter of my situation. Looking deeper into this. Dr. Kalinowsky, openly, and without fear of retribution lied on the papers. NOW, IF A “TOP” DOCTOR…(and I used that term very loosely), can do that…you can see the STATE of the MEDICAL SYSTEM. He was not only able to injue me…(and in my impaired memory I “may” remember me squirming, trying to stop them form giving me medication to subdue me prior to ECT.) It could be reality or simply one of many memory dejavus I have been stuck with. Sounds frightening…but it is very much real. It was the third time a doctor finally pointed his finger at him. Now, what am I saying? Is ect. not an option. NO. I do believe, when someone reaches a certain plateau of depression, ECT. is a recommended option. THE PROBLEM is this…viewing Dr. Lothar Kallinowsky position in the Medical systerm. World traveller, here with offices in New York City, very much respected by his peers, able to openly lie on medical papers, yet he was never touched nor reprimanded. While I had been shocked beyond return. I never recuped from those shocks. Now this is an extreme reaction. Yet it happened in plain view. I am sure shocks are an important part of assistance from depression. I am also sure, should you end up with the wrong people “the law” may not be able to assist you. With me, when finally lawyers were able to be contacted…by my mother…whom I told you was murdered by bad medications…and they got away with that too…and I don’t recollect the term in the law which shields them from that…the lawyers said. HE IS IRREVERSIBLY INJURED, (even though it would take many years to understand the full extent of my injuries),SEVERE INJUSTICE COMMITTED, but in the medical system,a lawsuit for this is very unusual, it would take a long time, lots of money, and not sure of a positive outcome.
Here again…this is a bit of added insight. Should you decide on ECT. you can’t even research the doctor records properly as they are very well shielded…what I would suggest is to learn all this and act properly. Now you have a brain and before you subject it to electricity, you would have to have many neuropsychological tests done…to asses its status. In other words to assess your injury (depression) prior to your next injury (ECT). To see what your injury is about. HERE…keep an eye open. If you have noticed, many, if not all, ECT. participatns are not given extensive neuropsychological tests prior to their ECT. Some, like myself, was not even aware ECT. was coming. Tests need to be given. Doctors have an open hand at this…basically…I think…because they know you are desperate…and they know should they injure…maybe give too many shocks…or the shocks may be too strong. Maybe given too quickly…or simply inappropriately given…whatever…they can easily bail out simply by knowning all the proper tests were not given prior,or simply by knowing all the proper tests will not be given post. This is their world, the are the puppettiers…(manipulating a puppet show).They will be the ones holding the strings. Could you imagine if it was Dr. Kalinowsky?You would need someone, around you, close to you…(and that is hard because even I had close friends and relatives…UNTIL I was injured, then they put on their blinders)…So, IF you do find someone close to you to overlook the procedures.Do realize neuropsych. is NECECESSARY prior to ECT. Do realize it is mandatory post ECT. Inquire about that. Have you buddy next to you at all times. When you subject yourself to these “people”…(and I use that term very loosely)…you are playing russian roulette. If you do sustain damages be the most prepared for your buddy to speak about it…because you may not be. This may seem like drastic talking…but I will always have a long term memory loss, a short term memory loss, a memory dejavu, impaired insight and judgement, a disorientation in time and day…cannot drive anymore, need to live my life through this computer…(calendar program). THEY did me in. I have been lucky to have survived. I am sure things are not that drastic today, then 30 years ago, BUT no doctor was ever touched!!! So that should tell you something. Don’t forget my advice. Also read the consent forms very carefully…you will notice they will be vague and uninformed, as they usually are before any type of brain procedure…Like I said…in a way I am playing the devil’s advocate…neverthless, while I am still alive…and live in my hell, because of supposedly some great doctors, who didn’t know what the hell they were doing, but knew how to manipulate their papers, I can give the bad side of ECT. But I am realistic enough to know many benefit from ECT….this may be a great cure but if may also be a potentially negative treatment…good luck. Instead of simple words I think I have provided some necessary insight…before you make you JUDGEMENT get all the INSIGHT possible…Ninuccio

KathleenDecember 13th, 2011 at 8:47 am

I met with a psychiatrist at McLean hospital in Massachusetts. He did a peliminary interview and gave me an “information” packet which is only 7 pages. It includes very short explanations which now I wonder if they are accurate. On the subject of memory loss it says “The great majority of patients will have only minor problems with memory, usually in the first 24 hours. These memory problems usually go away when the treatments are finished, but it may take a few months.” They also state that “Most people who have treatments report very few side effects. Most of the side effects are minor and are easily treated.”
I certainly hope that they present more specific and true information well before treatment (weeks ), in an appointment exclusivly for that. I am also curious if I will be given any suggestions for other resources to educate myself so I can truly make and informed consent.
My greatest concern is whether or not they have my best interest at heart. It has been my experience that it is the minority of those in the mental health field who honestly do. My trust is quite jaded and if I cannot get a satisfactory answer to all of my questions (including qualifications of the staff, particurly the psychiatrist) to my satisfation I will strongly consider seeking treatment elsewhere. I plan to compile a list of questions and grill the psychiatrist. I will also make suggestions from a consumers point of view for specific improvements they should consider so those that come after me will know the TRUTH about percentages (sucesses, side effects ect.). I expect to be given resources, positive and negative patient feedback for learning about the treatment. as well as some that have been written by highly regarded professionals. I will read some of the literature presented on this site to aid my decision.
Mental illness is such an ugly part of who I am and I am so very tired of my life revolving around it. Somethings got to give!
In the end, it will be one of the most difficult decisions I have had to make my entire life. I appreciate each of you for your willingness to share your experiences. Peace to all!

JohnDecember 13th, 2011 at 9:32 am

Ninuccio, I am confused. Do you believe all Dr.’s are out to cause damage to their pt’s, or is this exclusivly isolated to psychiatry. You state that your mother was murdered by the medications she was receiving. In what way, similar to Michael Jackson’s case. Or was there a medication error or was it simple neglect. Where the responsible medications psyiciatric, or was another condition being treated.
I guess what I am asking is, do you believe all Dr.’s in all fields of medicine are recless, or is this something that you feel is limited to psychiatry. If so it makes no sence to me. I am an RN and work in the area of cardiology. The Dr.’s and nurses I work with go to great lengths to help our pt’s recover, or at least attempt to provide them with the highest quality of life we can. I find your coments somewhat insulting, I devote a great deal of time to my pt’s, allot of which I don’t get paid for. Why on earth would psychiatry be any different.
If we were back in the 1950′s I could see your point, but even then I believe there was a genuine desire to help the mentally ill. The recourses were just not available.
Kathleen, just to put things in perspective. The American Heart Association has come out with strict guidlines regarding the assesment of pt’s who have had a stroke. By using CT imaging it is possible to determin if a patient has had an embolic stroke, caused by a blood clot bloking an artery and preventing blod flow to a specific part of the brain. Another type of stroke is a hemoragic stroke caused by a ruptured blood vessel. If a pt has an embolic stroke and the American Heart Association guidlines have been folowed, then the patient can be treated with a thrombolytic agent that will disolve the clot, restoring blood flow. Often these pt’s recover in a short period of time and have no neurologic impairement whatsoever. But there is a catch, if you choose to have thrombolytic therapy their is a chance that you my cause a hemorage, oviously now you are up the creak so to speak. This will occure in approximately 5 out of 100 patients.
So let me ask you this, if you had an embolic stroke and you qualified for thrombolytic therapy what would be your choice. To remaine permenantly disabled for the rest of your life or taking the chance that the treatment that could restore you to perfect health may end up making matters far worse. Very few people turn down thrombolytic therapy. This is a good example of risk Vs benefit. And would you think for one min. that the Dr.’s and nurses providing this treatment have some malicious wish that they would cause more harm than good? If your answer is no to that question, then why would a psychiatrist have different motives. Lets look at this logically.
Again I am not recomending that you have ECT and I certanly would not rush into it. Just keep in mind that it is a possible option. If you reach the point that you feal that life is no longer worth living and you have lost all hope…were do you go from there?
John.

KathleenDecember 14th, 2011 at 3:34 pm

John, You make a good analogy. The questions I have about motives is based soley on my experiences within the Mental Health Care industry (as well as health care in general). I’m not going to give examples, but as you read, I question compentency, motive and dedication to wellness. It is not so much doing harm, I believe the majority of health care providers do respect the oath they have taken. Knowing that not everyone cares about consequences, truthfulness and the needs of others may seem very pessimistic, but it is more learning from my past experiences. I do not have the intent to insult those professionals in the health care field, many of whom, like yourself, do truly care about their patients. Kudos to you and them! (Btw, I have brought small gifts, flowers or cards to those like you who seem to go above and beyond “the call of duty”.) Random acts of kindness…it’s important to me because it will temporarily bring out the lightness in my heart.
As far as the benefit/risk, I am thinking very hard about the two sides of the coin. My decision will be based on facts, however I will not ignore feelings of aprehension (sp?), fear and scepticism. I do pay attention to my “gut”.
Did the psychiatrist intend to not education/inform me? I have no idea, but I’ll tell you one thing, he did not mention the risk part of ECT that many have mentioned in the blog. The benefits are of course why people turn to this procedure. If he does not show me both sides of the coin, my red flag goes up.
After more than 20 years of being a mental health consumer, I fully admit to being a little jaded and shall we say, trust challenged.
Thank you for your comments both directed at me as well as others. I not only learn, but being questioned on my statements helps me to re-frame and re-examine. You and others are inevitably going to help me make a truely informed decision. I’m grateful to all!

CatherineDecember 14th, 2011 at 5:19 pm

As I have mentioned before, I am in Australia, and have considerably less memory loss since changing to ultra brief. The old fashioned sine wave ECT is rarely used here any more, although I believe is still common in the US. Unilateral or bifrontal too, of course, bilateral is asking for trouble. Anyone with memory issues should investigate this superior technique, with its few after effects. Electrode placement can also be important too. These things should be discussed with the treating psychiatrist or ECT practitioner. Happy to comment on feedback.

NinuccioDecember 14th, 2011 at 9:46 pm

Well…my last thing in the day is to close out my computer. You see, I need to live with it. My calendar program has had to become my life..for over 20 years now It was also never offered to me by my rehabilitative teams. I do expect differences of opinion…SURE…this is exactly what this site is about. I know I was injured behond return by neurosurgeries and shocks…but reading my posts you should understand the various trails…MOST NEGLIGENT TO HEAD INJURY…which unfortunately still exist today. I know, I was stuck in them, and should I return to doctors out there, I will envelop myself most probably in the same trails which simply do not yield any results for head injury. Head injury, and psychiatry, two horses of a different color. As a matter of fact…that is only one treatment and the force of the need for me to find my life again, my wife…my friends…my family…but basically my mom was there, to allow me to be strong enough to stay alive as I continuously worked on my memory. Yeah, she was murdered by doctors. No question about it. (I will show you tomorrow).My memory was at 10% in the early 80′s. No doctor ever took any blame. Yet many can be blamed, both directly for causing the injuries, or indirecty for not knowing what to do. No, I am not going to quarrel…why should I. I am here just to present the facts involved in my injuries…also with the negligence around..some…and most I have proof of…So those statements will not be made by me. So that you, and others subjecting themselves to doctor’s hands can get some insight into potential damages. Some may be personal opinion. Actually, don’t even know if you recognize this. No matter what opinion you may have after you have read my statements…(mostly made by doctors who diagnosed my situation, others made by lawyers)…then I may have answered the questions directed to me. Wether you care to accept them or not is solely another different story and up to you…but I will pass on “OBJECTIVE” facts. Stated by some doctors (very few), who go against other doctors who cause injuries. I am too tired right now. I am also aware enough only because of proper rehabilitation, to know I would be too tired right now for my brain to work correctly to write anything. I will have to regenerate my strenght and tackle this when I am most wary…usually in the morning hours. Most that I will speak about is from papers from Dr. Peter Breggin…about neurosurgeries, shocks…and me. You will take all the “objective” facts and subjectively diagnose them. I have said quite a few times. I am not against shocks…until I see the proper awareness not passed on…then they become quite dangerous. You are aware, are you not, that doctors who make mistakes,and cause injuries are very rarely taken to court…(as mine wasn’t for causing tremendous damage). And their records never marred. (They can’t be unless taken to court).What would make you think the doctors you are with now do not have any dark secrets in their past which they are easily allowed to shield from with their tremendous amounts of malpractice insurance they pay. Shocks good or bad…Good many times…bad sometimes. Neurosurgries, good sometimes, desructive other times…I will present some proof…and I do realize after the proof…you opnions will most probably be same on this site…but in you “awareness” your brain will have understood…hey, I better see a different pictures of what I think I am looking at…far more informed…therefore far more competent. I was 27 when I was injured…I am 57 now…Ninuccio

JohnDecember 15th, 2011 at 4:33 am

It is not my goal to put anyone on this forum down. I know that ECT causes memory loss, as does my psychiatrist and every psychiatrist I had seen before him. In the last 20 years I have spent many months as an in patient on a psychiatric ward and have come close to making two suicide attempts.
I have been on amitriptyline, imipramine, desipramine, clomipramine, doxepin, nortriptilyne, protriptyline, fluoxetine, paroxetine, setroline, citalopram, trazadone, mertazepine, bupropion, venlafaxine, isocarboxazid, phenelzine, tranylcipromine and selegeline. For augmentation I have been on lithium, buspirone, olanzapine, valproic acid, dextroamphetamine, methylphenidate, alprazolam, diazepam and clonazepam and there are some I do not remember.
Obviously, no one was rushing to strap electrodes on my head, or bill my insurance company for electroconvulsive therapy. Every psychiatrist considered ECT to be the last option-Doctors of Deception? electroconvulsive therapy being all about money? My psychiatrists where hardly exceptions to the rule. Most psychiatrists veiw ECT as a last ditch effort. Surley they have concerns about the side effects of the treatment, or could it be that ECT is so effective, they are affraid of losing all their patients. Some of the arguments made on this forum just don’t stand up to logical thinking.
I woulden’t even begin to discuss the frustrations I have with our healthcare system, I don’t have that much time. Are there doctors and nurses out there that should not be practicing, of course. Just as there are members of any profession who should not be practicing. Does money have any influence on healthcare…can you show me anything that is not influenced by money? Are there times when pt’s die unnecesarilly, allot more than we would like to admit.
However, for the most part healthcare professionals strive to provide the best care they can. I know that this is a hard concept to grasp, but doctors and nurses are human. Did you know that no matter how hard they try, humans make mistakes.
I have been a nurse for 10 years and I can honestly say that I have not made a single medication error that I am aware of, but what about the medication errors that I am not aware of. If I think that out of the thousands of medications I have given, that if I have not made a single mistake I am fooling myself. I’m great, but not that great!
Anyway to change the subject!!! Linda Andre’s book- “Doctors of deception: what they don’t want you to know about shock treatment.” Well here’s a shock for you, there are other books out there too!
Try this one: Shock: The Healing Power of Electroconvulsive Therapy
By Kitty Dukakis & Larry Tye.
Sorry, it’s not cloth bound, as far as I know it is only available in paperback, but it’s less expencive and definitly worth reading if you are considering electroconvulsive therapy.

NinuccioDecember 15th, 2011 at 7:37 am

First and foremost, there are reason why people get on this site. For whatever reason, either good, or bad, controversies will develop, and would expect a good attitude in dealing with these issues. As I have mentioned…(and will not spend much time on reasonings why folks are on this site)…I will give personal insight. I will give personal OBJECTIVE…(Objective means down to papers, realistic reports, face to face). Subject is simply how you care to deal with these issues. I am not for someone to tell me…ohhhhhhh!…sorry…ohhhhhh!…sad. ohhhhh…myabe they were right. I am just here to present some facts. Take them as you wish. But I would pay attention to me…because from what I have realized, I have seen not many…if any…folks having gone to the Rusk Institute in Manhattan that deal with our exact issues…HEAD INJURY…and its strongest rehabilitator…COGNITIVE REMEDIATION.but first…If you are so involved in protecting ECT…than why would you venturee in mentioning places that assist ECT. damages. Let me thank Linda for having written about this…to open awareness of things that I am damn sure are still happening. The medical system has been allowed to do as it wishes, with the expensive yet simple protection of malpractice lawyers, who have simply learned how to maniputlate the great laws of this country…and make their cash. Another bunch of losers.
Anyway…about my mom. My mom was my strongpoint. After my head injuries, with no memory, I stayed allive because of my mom. I was admitted to the Rusk, because of my mom. My mom kept me out from being admitted by Dr. Kalinowsky…a quack…yes…I will publish some objective matter on him…to a hospital in Manhattan…under lies of course. As he had made on my SSDI. (Social Security Disability Insurance) papers. If you wish to engage that material you would have to speak to Dr. Peter Breggin, and not me. I know to have to keep myself out of this. OBJECTIVITY requires no opinion.
I, on my computer, which ironically had not even been supplied to me by the Rusk Institute,but I had realized I would need one…BASICALLY for my memory difficulties.
My mom got sick one day. I went over the house. Her husband was complaining that she simply had to begin eating. She was in terrible condition. She was supposed to see a doctor in a few days. Noone understood her condition at the time. Not even I. My mom had been poisened by medications…(objectively, I was able to get her report). She decided to wait for her next appointement within a few days. I went back home…not really alarmed, as I thought she was suffering some flu symptoms. A few days later I went to the doctor with her. She looked terrible. At the doctors whe was too confused to even talk. Confused?…my mom? They finally decided to keep her there for observation. My mom died a few months later. The medication “allopurinol” had an adverse reaction to her. She ate, vomited, ate some more, vomited, until a few motnhs later her body could not support this. I was there to watch her pass away. Her doctor, the one who had made the medication switch used to go and see from time to time, in the morning hours. My mom was dieing. I hadn’t realized it. Even if “I” myself had been taken out of action many years ago by neurosurgeries and shocks. My mom passed away…according to the death certificate from natural causes. According to the papers I had to fight to retrieve, she had an allergic reaction. So her death certificate says natural causes. Her papers mention the adverse reaction to allopurinol. Now this is jus a very briefl writeup. I have many other papers I will be able to find again. You see, even in the cognitive classes in the Rusk…that TEACH your “new” cognitive awareness, and give some sort of assistance in remediation, they are still not programmmed enough, to be able to give the full assistance necessary….(mine being, at the best possible a computer, with a calendar program).
I have papers from lawyers who would not pick up on my mom’s situation because of her age. Even though they mention a few parts of the law that shield doctors who cause thee deaths.
Prudential Insurance, that my mother had was for accidental death. They say the death certificate does not mention that. According to the hospital she died of natural causes. EVEN THOUGH THE PAPERS speak of a STEVEN JOHNSON’S SYNDROME, as a resulf of “ALLOPURINOL”
I will stop a this…because I want to print out, in these early morning hours a piece I got from CCHR. Citizens Commision on Human Rights.
John…noone is putting anyone down. Here again it is always wise to speak objectively. I do the best by presenting papers…but THE REALITY OF FACTS are what should be understood. Not to make you change your opinion. In OBJECTIVE speaking…there is no opinion…it is just OBJECTIVE information.
By the way, I live, speak, do everything within the paramenters of a short term memory loss, a long term memory loss, focusing what is said, memory dejavu, time and place disorientation,imparied inisght and judgement,distractibiltiy, hemiparesis right hand side…Thesse are not randome symptoms I want to throw out here. It took proper assistance, from the Rusk Institute, the establish my head injuries. It took three years of cognitive remediaiton. It said in the papers recovered post my injuries I had been a high school drop out. I found a Business Administration Associates from Bronx Community College 1 year prior to my injuries…Ninuccio

NinuccioDecember 15th, 2011 at 7:50 am

This is from papers form CCHR. Citizen’s Commission on Human Rights.
To the general publis, psychiatrists repeatedly deny that electric shock causes permanent brain damage. However, when amnesia and brain damage have been secretely, and deliberatly pursues for use in political epsionage, psychiatrists have clearly stated that standard shock treatment does create these effects.
A December 3, 1951, document obtained under the u.S. Freedom on Information Act describes a CIA interview with psychiatris of considerable note, who was working with the CIA,s now infamous mind-control experiments.
Described as an authority on electro, the psychiatrist told the CIA that “the standard electroshock machine…produeced the normal electric-shock treatment (including convulsion) with amensia after a number of treatments…”an individual could gradually be reduced through the use of electroshock treatment, to the vegetable level.
From what I understood from my papers on my injuries, I had resisted Electroshock…from Dr. Lothar Kalinwsky, right here in Manhattan…(NYC). I had also lost my memory, and everything that went with it. Heck…almost my life…my wife, my friends, my memory…EVERYTHING…and still today there is simply no awareness of an amnestic syndrome…as I also see there no awareness of ECT. causing damages…(something like playing russian roulette). I hope people learn from these writings. I am sure shock can be very helpful…but you had better have the right doctor…not someone who can “legally” pull the trigger and destroy your life. My cognitive deficits are with me for life…and they also may get worse…Ninuccio

NinuccioDecember 15th, 2011 at 10:45 am

My subjective opinion is that my mom was legally murdered…here again subjecive is not good…let me present some objective information.
Not this is not about ECT. This is about another legal murder…via allopurionol. A drug used in many instances. A “good” drug…UNTIL…it actually kills.
A DRUGCOMPANY can be responsible for side effects if it did not properly warn the doctor about the potential side effects. Unfortunately the company in this instance did warn the doctors about the potential side effects…(????…thoooooouugghhhhh).Why did the doctor not warn my mother?…why does the death certificate not mention her cause of death? Now how could all this be legal(?).
The next issue would be wether or not a physician would be liable knowing there is very little potential of sideeffects. IT IS NOT MALPRACTICE FOR A PHYSICIAN TO PRESCRIBE A DRUG THAT HAS THE POTENTIAL SIDE EFFECTS THAT OCCURS ONLY IN VERY FEW PEOPLE WHEN THE BENEFITS OF THE DRUG ARE SO IMPORTANT.
My mom just happened to be a casualty…so much of a casualty even if it is known that she died from allopurinol her death certificate mention that she died from NATURAL CAUSES. Prudential Insurance will not pay her accidental death…
The same way they washed their hands on my life years ago….
When you travel through the medical system…YOU HAD BETTER LEARN WHAT IT IS ABOUT…Ninuccio

JohnDecember 16th, 2011 at 5:37 am

Ninuccio, I am truly sorry about the passing of your mother. It is obvious you were very close to her and that she was a strong piller of support in your life. A great loss! Allopurinol is frquently used to prevent gout in pt’s who take diuretics for heart failure. I have worked in the field of cardiology since 2004. I would say that 50% of our pt’s take this drug and I have never heard of any of them being diagnosed with Stevens-Johnson syndrome. It is listed as a rare side effect, but if a patient has this condition it is readily apparent. It causes exfoliating dermatitis, which starts as itching, then a rash and then blistering of the skin. It is not limited to one area, but effects the whole body. You can’t miss it. there have also been rare instances of liver damage causing loss of appatite and nausia and vomiting. If a pt were to present with these symptoms, liver disease would be one of the first suspects. A simple lab test would comfirm the results and any medication that was not essential would be stopped. Allopurinol is not essential. Ironically allopurinol seems to prolong life due to lowering of uric acid. You mention allpopurinol, but did your mother have any diagnosese other than gout, such as heart failure, that could have contributed to her death?
secondly, what does a 1951 paper that documents the effects of ECT on mind control have to do with the ECT being used in 2011 for the treatment of depression. For all we know the CIA may have been trigering 5 siezures per session. Therapeutic ECT for the treatment of depression has nothing to do with ECT used by the CIA for mind controll. And a 1951 document on ECT is, I would say, useless in 2011.
I really am sorry for the loss of your mother, but I would be interested in her age at time of death and any health coditions, besides gout.

JohnDecember 17th, 2011 at 3:39 am

Kathleen, I was reading through the post you had written on December 14th. I did not notice until today that it would appear as though you do not trust the members of your healthcare team. Trusting the healthcare members is an essential component of your treatment. I often have patients who ask questions concerning non cardiac related symptoms. The fist question I always ask is “have you mentioned this to your primary care physician”. I am always shocked at the number of patients who will make comments like “I don’t like my primary care physician” or “he never listens to me” or “I don’t think he cares”. Then I will ask the patient how long he/she has been seeing this physician. Most of our patients are on the older side and may reply “10 years” or longer. When I ask them why they would stick with a doctor they are not happy with, most patients indicate that they did not know that they could choose another Doctor or felt that they will be frowned upon for choosing to see a different Doctor. Many patients just don’t know how to initiate the change. Few patients are aware of how their relationship with their Doctor can directly influence their health.
For patients with mental health issues it is vital that you trust the team members trying to assist you.
Kathleen, you indicate that the psychiatrist who reviewed the ECT procedure did not provide you with all the facts. Is this a psychiatrist to which you were referred or is this the psychiatrist that manages your care ( and just out of curiosity, did your psychiatrist bring up the subject of ECT or did you ). Either way it does not matter, if you need more information, just ask for it. We both have have treatment resistant depression and for a similar amount of time. I know what it is like to start a new antidepressant and “hope that this is the one”. I have been through it over and over and over.
I really have no intention of being critical, but it is not the Doctors fault or the fault of the pharmaceutical industry, if the medication fails to work (it is not your fault either!). I bring this up decission you had mentioned that you were now on Pristique and that she probably made that depression because Pristique was brought up at a luncheon she had gone to. I understand how you feel, but the comment seemed to have some anger and accusation behind it.
I can only speak from my personal experience, but try getting any of our Doctors to go to a breakfast, lunch or diner sponsored by a pharmaceutical company. They just don’t have time. We actually have drug reps that come to the clinic with samples. Sometimes they wait an hour to speak to the Dr for 5 min. Some of our Drs refuse to speak to drug reps. If the medication you are on is not working and a new medication receives FDA approval, why would you not offer it to your patients?
I totaly understand how you feel, but if you are considering ECT, now is not the time to fight and hold resentments. It is time to work together. I don’t know all the experiences that you have had with psychiatry in the past, but letts not try to top it with the ECT…LOL
I do not know wether you would have this option or not, but working in healthcare has its benifits. The ECT clinic is litrally accross the road from were I work. I would go over their on my lunch break and pick their brains. Nurses see the patients before, during and after tratment. Allot of these patients are in patient, so the nurses would get to spend a great deal of time caring for them. In my opinion, if you want some objective feedback, this is where you’ll find it. Ask if there is anyway you could talk to the nurses at your clinic.!

NinuccioDecember 17th, 2011 at 11:09 am

Sure…you should trust doctors. Especially this one…this doctor in shocks…right here in New York City…nice section of the city. Plush offices. A hell of a man…(or some people may say…a hell of a monster).
Dr. Lothar Kalinsowsky
1)-Subjecting the patient controversial and potentially damagin electroshock without informed consent. 2)-When the patient’s brain function was already impaired, sujecting the patient to another brain-disabling tratment in the form of electroshock. 3)-When the patient suffered an extreme reactiton to eletroshock…continuing with the treatment. 4)-Failing to inform the patient that malpractice had been committed by the prior doctor.5)-Failing to inform the family that the patient would never recover from the damage inflicted by the prior doctor and the electroshock. 6)-Giving electroshock to an obviously incompetent patient with no legal guardian, and therefore without consent.7)-Inappropriately prescribing electroshock for a patient in whom it was unwarranted.
All OBJECTIVE informaiton. I didn’t say this. I had to learn this, years after the primary damages were caused, coupled up with many others which are subsequent to these.
Anyone getting involved in the medical systems needs to realize that doctors like this. Dr. Lothar Kalinowsky had learned, or may have been taught, and been able to manipulate its legal parameters, to be able to do what he wanted…and shield his rear end, while still maintaining his position in the medical system.
Here again…this is not my information. It was written by a top doctor, very well known and respected in the medical world.
I am sure that is wanton disregard and disrespect, is well documented in the medical system. There are many more like him around…Ninuccio.
This behaviour is behond making a mistake. This is pure butchering, without any type of regard…and it was allowed here in New York City…need I say more…Ninuccio

NinuccioDecember 17th, 2011 at 11:42 am

A LOOSING PROPOSITION…Very simple…hearing all this about shocks not causing head injuries. We know that’s wrong…fine. Doctors are given these tools and it is up to them to utilize them for their patients sake. Here is where the morals apsect comes in. If the doctor lacks moral concerns, then he knows he is very well shieleded by his administering shocks before all other tests have been given. There is simply no control over that. Most do that. Or maybe not giving propter tests. A lot do that. If the person has no proper testing prior ECT. then chances the prior situation could never come to surface. Only the new situation. Now he is also shielded in this. How can the new situation be fully diagnosed if again again proper tests are not given. Plus on top of all this the severe inconstinces in the medical system itself. It sucks, big time. No real explanations of head injury exists, since there are so many easily attached symptoms in the psychiatric arena. A good place to throw people after injuries are caused, since that’s where they were at before. Another plus on their side…is that one doctor…NEVER…goes against the other. Very, very rare. Out of three reports made for me, two said nothing was done wrong, only one made a huge report mentioning all the potential defictis I would have encountered. Another negative, is that the doctors who give proper neuropsychological testing and cognitive remediation put on their blinders…(out of not caring to be involved in this gross negligence by other memember of the medical system)…and their only disucssion would be of the present situation. I, personally was able to ask the supervisor of my treatments in the Rusk Institute, Dr. Owen Kieran. “Sir, when I went to Bellevue to see you, you weren’t there and I saw another doctor. When I told I was receiving COGNITIVE REMEDIATION, he didn’t recognize it?…what is going on…”…His professional answer to that was…”You are here now, Ninuccio”. Cognitive remediation was the treatment that slowly brought me up to understanding, within approximately 3 years, the full extent of my injuries…with the added awareness that other injuries also will manifest through time.So, this may sound like a mish-mash of information. But it is all true…and worth paying notice to…Ninuccio
If you have had shocks you should have received proper testing before…should have…does not mean you did. You should also have received neuropsycholgical testing…PROPERLY DONE…taking weeks. After this, it would be most appropriate to begin cognitive remediation. One of my major impediments in my “head injured brain”…(aside from long term memory loss, short term memory loss…etc…etc…)…is my DISTRACTIBILITY. I have simply never heard this mentioned in these groups. In all my head injured groups this was a symptom NEVER DIAGNOSED BY NEUROPSYCHOLOGICAL TESTING itself…but soon on EVERYONE’S head injury charts…Ninuccio

NinuccioDecember 17th, 2011 at 6:48 pm

This is in reply to you John…when you asked me…”what does a 1951 paper that documents the effects of ECT on mind control have to do with the ECT being used in 2011 for the treatment of depression. For all we know the CIA may have been trigering 5 siezures per session. Therapeutic ECT for the treatment of depression has nothing to do with ECT used by the CIA for mind controll. And a 1951 document on ECT is, I would say, useless in 2011.
I really am sorry for the loss of your mother, but I would be interested in her age at time of death and any health coditions, besides gout…”
The reason why I printed that out from papers I received from CCHR. (Citizen’s Commission on Human Right)…is that I want to show that ECT. is not immune from causing mind alteration. If you noticed I had also printed out the report from Dr. Peter Breggin about my treatment from Dr. Lothar Kalinowsky…(from a report that never had the possibility of taking these people to court). If you know about Dr. Lothar Kalinowsky, he was also in Italy, where shocks were introduced. Yet, you can see he was intelligent enough to establish offices in Manhattan, and practice his “quackery”. The only reason why he stopped is because he passed away. No, I have no respect for him, the guy almost put me away. He told my mother and my ex-wife that the only thing I needed was time. At that time rehabilitation for head injury was not even present. TODAY…all the doctors whom I have met, noone knows of cognitive remediation…and if they say they do…I simply ask them how it works?…they have no answers…because they have NO TRAINING…and even if they had training, their main preoccupation is keeping their job, and you as their patient. It all goes back to their moral fiber.
Dr. Lothar Kalinowsky was an IMPORTANT doctor. It was his letter to Social Security that allowed me to get on SSDI. Even though looking at his letter…HIS LIES…are very evident, and he was not afraid to put them on paper…(that is how established he was…untouchable). He didn’t lie on my injury…even though he didn’t really even diagnose it. He lied to protect the doctor who had caused me my other symptoms. It is a mess of a medical system…as the doctors in the Rusk, upon having a meeting with me and my mother, were even afraid of jeapordizing their own jobs to fight for me…Ninuccio…
PS. Even my mom, who was murdered by her doctor…Dr. Janice Galfandi…in her death certificate according to them, she died of natural causes. My mother suffered and died of a Steven Johnson’s Syndrome…Ninuccio…the doctors, the hospitals, all protect each other…it is a very sad scene. Maybe, it would be wise that people become aware of it. It actually even takes away from the good effects of ECT….(because ECT. I am sure is helpful for some people). There are simply too many quacks. Dr. Kalinowsky being one of them. Dr. Stanley Stellar being the other…and who knows how many others…Ninuccio

SuziJanuary 23rd, 2012 at 3:07 am

Hello All,
I have had a very interesting time reading through all of your comments. It is a very intense subject and I think that everyone has their own opinion as we all should. I think everyone should read the book “Doctors of Deception” by Linda Andres before receiving ETCs. I am a ETC survivor, as I did survive having them. I am worse for having them as I am one of the few (as they say) that has severe and permanent memory loss. I had 42 treatments and after many of them I told my Doctor of my memory problems. He ignored them or told me they would go away. He lied to me from the beginning. My husband informed me that we were not told of the brain damage and memory loss that does occur, and both do occur in all patients. Some patients are luckier than others and they have memories come back. I like the unlucky ones can not remember past the last 2 1/2 years when I had my ETCs stopped. I do not remember my childhood, my wedding day, the birth and raising of my children. I have lot all knowledge of who I was before I had the ETCs. Whatever I know about my past is what other people have told me. I can no longer work and most of the time carrying out my day is almost impossible. I have suffered from severe major depression from my teen years I have been told, with 2 attempted suicides. I have tried all the medications and therapy on the market. From what I hear ETC was brought up as a last resort. I know my husband would not have let me get this had we known the damage it would have caused my brain. I am not able to drive anymore as I am so easily distracted,. I do not work because of my cognitive skills that were lost. I used to make wonderful crafts and wonderful outfits for my kids. Now I look at the instructions which are mostly video as I can no longer comprehend written instructions or remember what to do in the beginning when I do read them. There is a complete disconnection between my brain and my actions. What I think is not always what I am doing. I can type something look down and it has nothing to do with what I wanted to say. If someone is talking to me and there is any other people talking or just me looking at something comes into the conversation. People (except my family) looks at me like I am crazy since they do not understand what I say at times. My house burned to the ground (electrical not me) right before I ended my ETCs and I lost all my memories and pictures from my past. My heart breaks when my children ask about their childhood and I can not tell them. I have 2 grown kids and 2 teens. Somedays I do not want to get out of bed, I wished I would have died in the ETCs, but I know what it would do to my kids and Grandkids if I was to take my life. That is what keeps me going and the help of my husband also. He has stood beside me and most of the time that is not something that most people would do. I have developed a temper and a bad mouth. Neither of which I had before. It comes and goes and I am so embarrassed by it, actually by all of it. When our house burned down our community was wonderful and offered so much help and were so caring. I was so embarrassed as I did not know these people ) our town has a population of 1300) who I have known forever. My friends at work were so worried about me and I did not remember them. I know some people have said that they are so much better because of the ETCs even if they have lost their memory. My question to them is “how do you know?” I mean I do not know because I can not remember, so how can they or is it something has told them? I would not recommend ETCs to anyone. Looking at the long picture the outcome is not always good. In my story, I can not remember any of my past good or bad, I am not able to work (I was in the business office at the hospital) I am on SS disability when I was making excellent money. The effects of the ETC are gone and the depression is so bad that most days I just cry. I know I am brain damaged as it showed in my Neurology testing and MRI. My MRI looks like someone who has Alzheimer’s. I am 51 and do not know how I got this age as I do not remember being young. It has effected my whole family not just me. I have a new Granddaughter that keeps my smiling. She is the only child I have known since birth (or at least remembered) so when I hold her I try to imagine holding my children. It is a sad life I live now and I try to find the positive, but some days it is just too hard and all I can do it make it through that day. I would not tell anyone what to decide on, but I will strongly suggest that they find out all they can about ETCs before they get it done and really weigh it out. Not all suffer the huge effects, but all suffer brain damage. It is a muti-billion dollar industry and the drug companies, the doctors,the hospitals and the insurance companies do not want to forfeit the money it brings in, no matter what effect it has on humans. It was known since the beginning what harm it does and yet it is still being done? We as mental patients are not heard, and after ETCs are not always believed either.

SuziJanuary 23rd, 2012 at 3:46 am

Oh by the way the Dr. that gave me the ETCs has since passed. Now God can deal with him.

NinuccioJanuary 23rd, 2012 at 6:09 am

Yes, I am not the only one. Everything said is true. On that note, as I alaready have a few times, I will tell you the most positive training I had was the cognititive remediaition classes in the Rusk Institute. I had even published my notes at one time here on this site. They seem to be almost like kindergarten exercises…but they are tremendously effective…NOT TO TAKE YOUR INJURY AWAY. That is there to stay. But to allow you to recognize the various distinctions. It begins with neuropsychological testing. Follows through with cognitive remediation. As you fully recognize your injury depression is not an unusual thing. But being aware as to the full extent of your injury is ESSENTIAL…for you, your husband…and the children around you. From my viewpoint you seem to be at a good level. I wish you luck in your endeavor. If, and only if, you need information on the cognitive classes and how effective they are in making you aware of your full injury, the only thing you have do so is ask…Ninuccio
There are many, many people. some of whom I meet in this site, who have never even been told of neuropsych. testing. And also let me tell you one more thing. The trust that is put in the medical system can be extremely dangerous. That is what did me in. Once you sustain head injury the various psychiatrists out there simply don’t have the full potential to rehabilitate. There is why you need to follow the proper procedures…understand the full extent of your injuries…and then deal with your disfunctional thought pattern and mold it as best as you can to life…Ninuccio

LeahJanuary 24th, 2012 at 5:47 am

I have one thing to say regarding what this site is about ect. Eveyone is quick to make assumptions and only write negative things regarding ect. Which you can only do if you have had it yourself! Only us few can explain our story. But please before you scare the hell out of someone from what can and 100% was for me a cure from the hell, get your real medical facts, statistics, results and then of they weigh in your favor then write your accurate results in a non influential way! Instead all you who have not had it, do hot write what someone should do it is their and their specialist think. I had it and love my doctor for seeing it as a option, IT SAVED MY LIFE abd instead of scaring and slandering it do Your well researched and conclusive results like I did and see the positives NOT just the negatives people post here who know so little about any of it. Once I saw the facts I knew it was a great decision and it did save me. And could save so many more! Stop giving people your opinion base it on reality, personal experience and hard medical facts. I don’t even think half the people that wrote here even know why goes on in the procedure! I would never tell anyone what to do, but based on facts and hearing so many other positive results I chose to go ahead and since then I no longer require being in hospital, medications and have not had a suicide attempt yet. I sat in a hospital bed for three years while they tried everything until finally after a very hard three year a wonderdul doctor chose this treatment for me and before you know it I was home and back to a normal life. Listen to professional not randome people on here with little of the correct facts and speaking of facts, taking advice from a highly educated professional is much smarter than anyone on this site. People stirring up trouble stay off this site. It’s needed for people with correct information. If you are unhappy with your current treatment plan or you don’t click with your proffesional help change to the right person l. It took me three years to find the right one.

SuziJanuary 25th, 2012 at 2:30 am

Hello, Leah, I have read your posts before and I am not sure who you are talking about when you talk about people who do not know their facts and have not had it themselves? I am fully knowledgeable about both. I am glad that your experience was a good one, but it is not good for all people. And you need to keep that in mind also. I agree that there is both sides to the story, but one fact that remains the same on both sides is the fact that EVERYONE who has ETCs has brain damage, some more severe than others, but all have it and that is a FACT.There is not denying it from anyone. Just have a MRI done after you have had ETCs I did and it shows up really well there. I do have a question for you, if you have no memory of the last few years, then how do you know you are better, you would not know how you felt then compared to now. It could only be what people have told you, or you do have your memory. I DO NOT have any memory from the last few years and I do not know if I am better or worse. I do not have a job because I lost most of my short term memory as well, and my cognitive skills are that of a grade school child. I have to ask my children for help with simple problems and words. I have not concept of time. I incorporate things I see into things I am saying. You do not realize how long and hard it is to type this up. I will also say this the Doctor I had ruined may people’s lives by not being honest. I have talked to several recently from my hospital and all have brain damage to some extend.. I saw an older women in the hospital every time I had mine done who was comatose..so why was he still giving them to her.”.ECT is a barbaric “treatment” used in many private and public health systems in Australia to “treat” all sorts of mental illness. Side effects are excruciating and damaging to a persons memory and quality of life.Patients are generally completely misinformed of these side effects but must sign a waiver (that they generally are too sick to understand) so the hospitals will not get sued. Often unnecessary treatments are given to maximize profit, especially within the private health system. Banned in several countries, and severely restricted in many others, The legal provisions for this differ from country to country” he are several quites I got from the research I did after I had it done…too late for me. I was not in any shape I am told to look at all of this before. The Dr. did lie to me and my husband and continued to lie to me when he dismissed the fact that I had sever memory loss. He has one Dr who came in and took his place when he was not in and she was wonderful and she wanted to get me the neurological testing and whatever treatment I needed to help me with my brain damage, but he squashed it when he got back and that is one main reason I stopped getting them. Maybe your country is different, America is all about money…in every aspect. Sorry but so true and anyone believing different is just wanting to think all things and businesses are out for their own best interest. Bull!! I worked in the hospital, I worked on the floor as a nurse and then in the business office. I know what they get paid for doing procedures. The Dr I had was only giving ETCs and not practicing Psych. any more, except for bullshit follow-ups, which he took 5 minutes with me, the rest was by the students (interns) whatever you want to call them. They had more insight into what was going on with me than him. They get paid a lot and I read it was said by someone that they would not lose that much pay by not doing them???? A seriously outrageous thought. Doctors, drug companies, hospitals etc have done many things for profit and not for the sake of the patient. Just like lawyers, governments and many other companies. Unfortunately in America is not always how good you are, but how big and how much you are worth that makes you the top of the line. It can save lives and that is true, but it comes with a high price. People should know that. And the symptoms of depression and suicide do come back within a year for most people. How can you not be depressed when your whole life is taken away from you and you are left to find who you are suppose to be. I am 51 and the last thing anyone would have thought I would be doing was finding who I am… My children want their Mother back. I told them I wish I could but she is dead. I do not have the same taste in foods, in style, in anything. That is from having my whole memory wiped away. I wish I knew who I was and who I want to be now. This would make a great science fiction movie where the Government makes it mandatory for all the have ETCs and then they can remold them to be whatever the want a person to be. Think about it, that is not that far fetched considering how ETCs got started. You have your right to have your opinion, but so do the ones where it did not work and have to suffer. Like said before it may help some, but it has a high price for a person to pay. People need to know this before since it will be too late after. It just depends on what you are willing to trade, and hope it works and you do not get the side effects and still have no permanent results like so many do. If you read research on it now, you will find that the side effects are a lot more common then they have been revealed in the past, and people who it has not worked for are a lot larger group than have been in the past. Once more question you said in a earlier post that you were only one of very few to get it done in your country? Doesn’t that make you wonder why?

NinuccioJanuary 25th, 2012 at 9:33 am

This is a response to Leah…”I have one thing to say regarding what this site is about ect. Eveyone is quick to make assumptions and only write negative things regarding ect.”…
Insight is mandatory in our lives…(Insight-The ability to see and understand clearly the inner nature of things)…Judgement…(a decision).
Now I am not even saying this. I am head injured…I have no authority but my own personal opinion…(which is basically worthless). This here is the opinion of Dr. Peter Breggin MD. (a bit more competent then mine)…in regards to Dr. Lothar Kalinowsky…and the butchering which I was subjected to…by him…
1)-Subjecting the patient to controversial and potentially damaging electroshock without informed consent.
2)-When the patient’s brain funciton was already imparied, subjecting the patient to another brain disabling treatment in the form of electroshock.
3)-When the patient suffered an extreme reaction to electroshock, continuing with the treatment.
4)-Failing to inform the patient and family that malpractice had been committed by Dr. Stellar.
5)-Failing to inform the patient and family that the patient would never recover from the effects of the neurosurgereis and the damaging effects of electroshock.
6)-Giving electroshock to an obviously incompetent patient with no legal guardian and therefore without consent.
7)-Inappropriately perscribing electroshock for a patient to whom it was unwarranted.
This is not the base of my assumption…this is the base of my “reality”. I didn’t write this…but I thank God it was written. I also thank God that my mother was around enough to get me to the proper rehabilitative techniques which are virtually unknown to others with head injuries.
Some people are luckier then others. Fine. Others need the proper avenues for assistance from the umentioned…YET INFLICTED damages…of ECT…Ninuccio
Oh, by the way, the reason why you don’t hear about these things is that these negative reports are simply not published. I AM LETTING YOU KNOW ABOUT IT. Not to necessarily give you some negative opinions…but PUBLISHING the negative opinions given by a doctor. Don’t you think anyone who sustains damages should be directed to proper avenues of rehabilitation?..(Neuropsycholgical testing and cognitive remediation). .Don’t you also think that anyone subjecting themselves to ECT. should know of the potential negative effects?…This is what I have done…this is what I am doing now…Ninuccio…

SuziJanuary 25th, 2012 at 3:36 pm

I agree with you Ninuccio that the negative is not voiced as much as positive a lot of the time. Several reasons for this that I have found; mental patients are not always listened to, a patient will give up trying to tell the Dr. of their side effects because of frustration. Many patients where the Dr. does not acknowledge their side effects simply stop going to the Dr and nothing more is said. These are true statements that I have found by several patients and lawyers I have talked to. It is now coming out that there are a lot more negative effects then were before known about and are now being voiced more. Yes there are two sides to this story and both sides should both be acknowledged and not judged as these should only be voiced by people who have gone through ETCs and both sides are valid and should be heard. For the people looking to this site for help they should hear both sides and decide for themselves, but only after hearing both sides. It is also a site where people who are going through the negative can look to find people who have gone through it and can find comfort with other people who have also gone or are going through the same thing. It was mentioned in a previous comment that only people who have gone or are going through ETCs can possibly know what it is like. It can not be explained to someone who has not experienced it. It is just inconceivable to other people without the experience of it. People on this site should be helping each other no matter which effects or negative or positive experiences that you have received and stop arguing regardless of whether you think it helps people or not. Somethings are just facts and need to be excepted. Ninuccio I would love to hear more about the rehabilitation?..(Neuropsycholgical testing and cognitive remediation). It is something that should be offered to everyone and is not. I just heard today of a new Dr. that helps you deal with the effects of ETC on a person. I do also think people should see both sides both on this site and in the Drs. office before the damage is done. If you only hear negative or positive a person does not get the real picture. Let’s try to help for each other, understanding for each person like us who have to deal for the better or worse from the effects of ETCs, to let people who are considering having ETCs that there are both negative and positive outcomes to both. Yes there may be alot of people who talk about the negative side on here, but to some of us it is our reality and this is a place where we can actually be heard and not dismissed. It is a same to be dismissed on this site also. I know I might have come off sharp before, but some are just facts and some are options both which I feel are needed on this site and not just arguing for the sake of arguing with what others are feeling or going through. I have tried and tried to find a place where people like myself can find people who can offer me solutions, or just to know there are other people who know what I am feeling. It is just too hard to talk to people about what you are going through who have not gone through it, although sympathetic and understanding you can not understand us and there is no description that we can give to someone that can even remotely describe our feelings and lose of self.

NinuccioJanuary 26th, 2012 at 9:14 am

Cognitive remediation is not a one day deal. It is a process that will slowly work on your neuropsychological testing results.!!!!! I was there approximately 3 years. 2 days a week. 3 classes a day.
Ok. first of all…in the Rusk Institute…I was finally admitted for a cognitive remediation program. First and foremost I began with neuropsychological testing. (No treatment yet…just testing). It follows like going up a staircase. You need to take the first step. THIS IS THE FIRST STEP. It needs to be given appropriately…(many places simply don’t do that). There is a combination of many tests, mostly written tests. Here is where the expertise of the Rusk comes in. Their profession is the rehalitation of head injury. THEY KNOW that the tests need to be given a few at a time…(to allow the brain injured patient to recover before tackling the next test). This is already something not done elsewhere. With me it too a few months. THIS IS BUT THE BEGINNING of the procedure. The end of the process can only be after you have entered and then completed your cognitive remediation classes. After the cognitive remediation your symptoms will have increased. Not only increased, but you will see symptoms on the chart that you were never aware they were even symptoms. You, through the cognitive remediation process, will have brought them out…and at the end, actually RECOGNIZED them and develop ways to actually compensate for them. You will learn, through this constant repetition and taught process, how to instill them into your “new” you. Your life, even if I didn’t realize it then, was beginning to change…I will not continue until I am recharged to continue…but it would be wise to put these notice in a file…will continue shortly…(next subject…DVE. WPAT. Worksite cognitive classes)…
THINGS THAT NEED TO BE ACKNOWLEDGED!!!!
Neuropsychological testing before anything else.
Few tests a day witin a total of a few months
Approximately 20 to 25 tests given. Many others doing puzzle and the likes…will be given…
This will not REHABILITATE you. This the very beginning of rehabilitation…Ninuccio

NinuccioJanuary 26th, 2012 at 11:53 am

I have had to model my life on the computer. I live by a calendar program…through years of injury, and memory disfunction, and a physical hemiparesis…(impairing my writing ability). I know when to write on my program. I know what to write. I know how much of it to write. I know when to retrieve it. I must be pretty slick…right?. Actually it takes a while…took me approximately 3 years to perfect my notetaking in my COGNITIVE REMEDIATION classes. That can only be done by understanding the full extent of your injury. And unfortunately understanding your injury is not reading the results of your neuropsychological testing. That would simply be too easy. Let me explain…(or give it a try).If you have a short term memory loss…(diagnosed by your neuropsychological testing), that is troublesome…but what would be more troublesome is not following up with COGNITIVE REMEDIATION. With this followup you will realize the short term memory loss does not stand by itself…(as the neuropsychological tesing shows). It is accompanied by a few other symptoms (which your testing simply is not trained to pick up). You would have to retrieve them, add them to your poster, recognize and learn about how they effect your thinking ability…It is the combination of these symptoms working together, with your short term memory loss, that you would have to master. This, like schoolwork, will entail constnt repetetion. The only way to rehabilitate from a short term memory loss it to be able to recognize it simply by recognizing all of its accompanying symptoms. The whole picture.
That may sound tricky and complex, but thats when cognitive remediation proves its worth…and it is a relatively easy treatment…ONLY ONCE YOU RECOGNIZE IT EXISTS. Unfortunately in the psychiatric arena…No doctors have even ever been trained about cognitive remediaiton…Ninuccio. Will continue tomorrow detailing the extreme simple, yet repetitive assistance of cognitive remediation…with the extreme simplicity of cognitive remediation…Ninuccio

JohnJanuary 28th, 2012 at 11:04 am

It was thought, untill qite recently, that once a person reached a certain age that the brain stopped growing and a person became “fixed in their ways”. I want to say that 18 years old was when a persons brain had finished developing. Untill about 10 years ago, any doctor or scientist would have been laughed at if the tried to imply that the brain was capable of changing after it was developed. This is where the saying “You can’t teach an old dog new tricks” comes from.
But you don’t have to be a doctor or Nobel Prize winner to see that this is not the case. If you were to meet a 50 yo man who had never learn’t to drive, would you believe it to be impossible to teach him this skill. I hope not. But if you stop and think about what driving envolves – it’s allot. First the peson would have to learn and remember the basics on how a car opereates, he would have to learn and remember the “rules of the road”. To be able to drive the car does not just envolve memory or the brain. A feedback system communicating his brain with his motor skills would also need to develope, if you are travalling 65mph on the freeway your hands have to communicate with the brain so that you are able to drive in a staight line or make a turn. Once you have the thought that you want to turn right at the next light, your brain and muscles have to communicate to make sure the steering wheel is moved just the right amount and yor foot has to depress the acceleator just enough to provide the right amount of power to orchestrate the maneuver. If you really stop and think of what your bain has to do when you drive from home to the suppermarket, it’s incredible.
If a 50 yo man who has never driven before can learn how to drive at 50, that is surely enough evidence that the brain does not becomes “fixed” at a certain age. Are brains are plastic and maleable. One of my favorate books is called “The Brain That Changes Itself”, by Norman Doidge, MD. this is not a self help book, ECT is never mentioned and mental illness is hardly covered. The first part of the book goes into the science of memory, the second half is a collection of case studies of people who have experienced brain damage, from many causes, and how they have been able to adapt. It is very inspirational. Once you have brain damage at least two things have to occur to overcome it. Firstly the brain has to develop new pathways and secondly the person has to learn to adapt. This book won’t show you how to do it, but it provides compelling evidence that it can be done!

JohnJanuary 28th, 2012 at 11:16 am

It was thought, untill qite recently, that once a person reached a certain age that the brain stopped growing and a person became “fixed in their ways”. I want to say that 18 years old was when a persons brain had finished developing. Untill about 10 years ago, any doctor or scientist would have been laughed at if the tried to imply that the brain was capable of changing after it was developed. This is where the saying “You can’t teach an old dog new tricks” comes from.
But you don’t have to be a doctor or Nobel Prize winner to see that this is not the case. If you were to meet a 50 yo man who had never learn’t to drive, would you believe it to be impossible to teach him this skill. I hope not. But if you stop and think about what driving envolves – it’s allot. First the peson would have to learn and remember the basics on how a car opereates, he would have to learn and remember the “rules of the road”. To be able to drive the car does not just envolve memory or the brain. A feedback system communicating his brain with his motor skills would also need to develope, if you are travalling 65mph on the freeway your hands have to communicate with the brain so that you are able to drive in a staight line or make a turn. Once you have the thought that you want to turn right at the next light, your brain and muscles have to communicate to make sure the steering wheel is moved just the right amount and yor foot has to depress the acceleator just enough to provide the right amount of power to orchestrate the maneuver. If you really stop and think of what your bain has to do when you drive from home to the suppermarket, it’s incredible.
If a 50 yo man who has never driven before can learn how to drive at 50, that is surely enough evidence that the brain does not become “fixed” at a certain age. Are brains are plastic and maleable. One of my favorate books is called “The Brain That Changes Itself”, by Norman Doidge, MD. this is not a self help book, ECT is never mentioned and mental illness is hardly covered. The first part of the book goes into the science of memory, the second half is a collection of case studies of people who have experienced brain damage, from many causes, and how they have been able to adapt. It is very inspirational. Once you have brain damage at least two things have to occur to overcome it. Firstly the brain has to develop new pathways and secondly the person has to learn to adapt. This book won’t show you how to do it, but it provides compelling evidence that it can be done!

SuziJanuary 28th, 2012 at 4:21 pm

Thank you John this is great information, I am going to have to find this book and read it. I understand what you are saying and it makes prefect sense.

NinuccioJanuary 30th, 2012 at 6:04 am

These are very interesting comments about the brain. I know that one of the most intersting treatments out there is recognition of the full extent of the situation. It all gets back to neuropsychological testing…when properly done. It will diagnose some symptomss…followed up by COGNITIVE REMEDIATION…which will, from the prior diagnosed cognitive difficulties, pry into your brain, not only to slowly bring out the full extent. (full extent-Not only neuropsych. but cognitive remediation) of the injury, but to simply assist the person whose injury is coming into focus. Full compensation can only be realized, while the true head injury is unravelling…Ninuccio

NinuccioJanuary 30th, 2012 at 6:15 am

From John’s comments…”If a 50 yo man who has never driven before can learn how to drive at 50, that is surely enough evidence that the brain does not become “fixed” at a certain age. Are brains are plastic and maleable. One of my favorate books is called “The Brain That Changes Itself”, by Norman Doidge, MD.”
John, you are talking about a man without head injuries…and it does show the nature of the brain. However post ECT. that nature can go out the window. Case in point, if anyone has ever noticed, as I realized when I had some problems with my license years ago…there was a question in regards to if I was ever head injuried. Or something to that regard. I lied. I had to lie not to open up a whole can of worms. Now the point is this…if a person is head injured…chances are…if not gone through the proper treatments, he simply CANNOT be fully aware as to the extent of his injuries. Therefore not aware as to the extent of his brain. It took me approximately 13 to 14 years to become aware of my distractibility…which was monumental in me understanding the full extent of my injuries. Today not too many head injured folks are aware of their distractibility. I wouldn’t want him anyone with head injury behind the wheel of a potential destructive machine…Ninuccio

NinuccioJanuary 30th, 2012 at 6:20 am

I just realized one things I had always meant to do and never got around to doing it. I want to thank you Linda for your fortitude to be able to bring these facts out..sorry for not having been consciuous enough to have thanked you before…THANK YOU LINDA…

Teresa RobertsJanuary 30th, 2012 at 10:32 pm

What can a person do?At one time in my life I had promise.Then at the age of 21 I went to emergency with a bad stomach ache the Doctor on call put me into the psyche ward where the nurses insisted that I take pills or they would inject them into my hip.My own family Doctor ( A man I didn’t know very well because I had never been ill)after a few months of being hospitalized this Dr. told my mother that I was so depressed that only E.C.T. would help me.My mother signed the papers and says that if she hadn’t of done this I would still be in the hospital today.
I am 53 now and am living in poverty.I am on disability and I work part time as a fund raiser.I feel that E.C.T. has ruined my life .For years I was too tired to be motivated, and now I am worried about what life will be like when I can no longer work?This treatment was given without my consent or knowledge. Do I have the right to sue?

NinuccioJanuary 31st, 2012 at 7:06 am

This book was written by Linda Andree…the medical system has many issues. As you can see. It is also very well shielded and protected when it screws up. No one knows how often as it is entangled by many things. Proper assistance, negligence, incompetence. Good doctors, bad doctors, doctors who don’t care. Doctors who don’t have to care. Doctors who only care about their income. No one really knows the extent. Head injury lawsuits are VERY RAREe…and I don’ t know your extent of injury. As you also see on this site, not too many others do either. I would look into your head injury PROPERLY. I don’t know of your potential. I don’t know of your organization. As you are head injured you may have cognitive deficits which will undermine your potential for seeking assistance. My suggestion, without me knowing you, would be to be aware to learn how to take notes and document your activites. Also look at your financial setting…(insurances)…that may pay for you to be involved in neuropsychological testing. Here, begin to watch yourself. There is lots of negligence out there. Make sure your neuropsychological testing is properly done. Many times it is not. Make sure you are shown the results. Many times they are not. After that,if possible, have yourself enrolled in PROERLY ADMINISTERED cognitive remediation classes. From my own personal experiences I have met many head injured folks. All their potential are different. Yet through cognitive remediation you will be made aware as to the full extent of your situation. Then deal with it as best as you can. I just want to provide you with one awareness. I received cognitive remediation, as it should have been given only 11 years later, by the Rusk Institute in Manhattan. Yet, even today, as I mention it, noone is still aware of it. How it works. What it does. So you will be entrailed in a medical systems which is very iffy. I want to point out my own mother was the person who kept me alive post my injuries. She was “legally murdered” a few years back, because of inappropriate medications. They even got away with that. I was told by my lawyers, before I even paid to have a report made, to let it go. So as you see, one thing you will need to do is to begin with your neuropsychological testing…and then see how far you can proceed after that. If at least you may not be able to sue…(very common occurrence)…you may at least be fully aware of the damages sustained and thus live under them properly. I don’t know where you are from, but this happened right here in New York City, with a top doctor in shocks, who was…(thank God he is gone)…very well aware how to maniputlate our greatest asset. “The Law”. So. I wish you luck. Do however go forward with your testing and cognitive remediation if possible…GOOD LUCK…Ninuccio

CatherineFebruary 1st, 2012 at 3:03 am

For the record, I am NOT “head injured”, “brain damaged” or “cognitively impaired”, have had approximately 60 ECTs with the next maintenance one next week. Yes, there is a bit of memory loss and yes I am a lucky one. I am a mother of 3, grandmother of 2, loving wife, fulltime employed RN and have a university degree. I also have a wonderful psychiatrist who I would, and indeed do, trust with my life. I will live with the amnesia rather than the depression any day. Without ECT I would have been dead a long time ago, so my family and friends also say THANK YOU ECT. You keep our loved one alive.

JohnFebruary 1st, 2012 at 7:20 am

Cathrine, I have to say I am envious. Before ECT I was the model emloyee, allways have been. The Dr. I work with is very demanding, yet he wrote me up not long ago for going above and beyond to obtain knowledge and apply it, greatly improving patient care. He also said that I was the best nurse he has ever had.
nfortunatly the staff I work with do not feel the same. I don’t know if it is because I was on dissability for 8 months or wether I have been stigmatized. We have a clinic at two sites. At one site everyone knows I have had ECT. At the other site only two of my closest freinds know. It is amazing how I am still respected, valued and appreciated at one and considered a problem employee at the other.
The ECT did cause problems at first, but my memory is returning to normal. That is I guess my active or short term memory. I still have moments like say walliking into a bookstore and seeing a book on Ronald Reagan. After a few seconds I know who he is, but I don’t remember everything. Fortunately my ability to learn was not greatly effected and for the most part my clinical skills are unscathed.
The worst side effect of ECT is that it has done something to my time management. I find it hard to get anywhere on time. And I am also very disorganised.
Anyway, I received my final written warning at work this week, nothing related to patient care. I am applying for new positions. I am sure it will all work out.
It is so bizzare, I don’t know if I can put it in writing in a way that makes any sence. I suffered a major depressive episode at the age of 25 and never recovered, one suicide attempt with suicidal idiation continuing. I was totally resistant to therapy or medication. It took quite a few jolts, but finaly I began to feel better. I have had 52 total treatments with my last in 03/2011.
The ECT did not cure the depression, but it pulled me out of a deep black hole that nothing else could. I do get days when I feel that depressed, but now it passes. I think one of the greatest things that ECT did, was it gave me the ability to realize when I was depressed and when I was not. Now I look back, it was so painfull. Anyway, my whole point was that despite the dramatic improvement in the depression, this last year has been the hardest I have experienced. Trying to keep my job, get my memory back and really re-build myself; a process that has barely begun.
It makes no sence to say this, the depression was hell, but this year has been also.
I do not regret having ECT at all. I am a totally different person, but there was a huge price to pay. Fortunately I am very confident that I will continue to recover. My thinking is 80% clearer than it was in March.

SuziFebruary 2nd, 2012 at 8:31 am

Catherine I also am envious of you. I wish it would have worked so well for me. John you are doing wonderful with dealing with all you have to on a daily basis. I know what you mean when you look at something and realize what it is later on. This is why I got on this website was to identify what I feel with people who actually know how it is. Not someone who gives you sympathy, but actually KNOWS what is like to be in the place some of us are. I did not get on to argue if ETC is good or bad for people, we all have or opinions and they are each individuals. Thank you Ninuccio for all of your insite into the recovery process. I hope to be able to find something like that here.

NinuccioFebruary 2nd, 2012 at 7:14 pm

I didn’t want to pursue this but I think this piece of insight is important to know. I was lucky enough to have attended the cognitive remediation classes in the Rusk. IT WAS INSTRUMENTAL in the sense that is was the proper treatment for head injuries. All head injuries have different causes…but ECT. is one cause of head injuries. So are neurosurgeries. So are car accidents. But what is important to understand is that proper neuropsychological testing (given in the Rusk) was the same for each member of the group…and so was cognitive remediation. ALSO each member of the groups had a poster made which would detail the neuropsych. testing results. Within months and cognitive remediation those symptoms would have doubled. Even though the members of the groups had different degrees of head injuries…the cognitive remediation classes were the same for all. After approximately a few months, to maybe six months all of the charts had doubled in symptoms. These classes allow symptoms to come out which simply cannot be picked out by the neuropsych. testing. NOT ONLY do they allow these symptoms to come out…but by constant notes as the classes progress, week after week, month after month…they will give you enough new information and structure to allow you to understand to build a “new” awareness of the new you…through the awareness and “practice”…and constant repetition of your new symptoms. Sounds very complicated, but in actuality it is almost like going back to elementary school. But unbeknowst to you, you will realize after a while that you are becoming aware of yourself by being able to look at your thinking mechanism…and its changes…and only because of this being able to work around them. IT WORKS…good luck in your quest. Today, even if you have not received cognitive remediation, if you have not received at least neuropsych. testing something is definetely wrong…Ninuccio.

JohnFebruary 3rd, 2012 at 4:17 am

Suzi, I am so gratefull for your responce. It is allmost impossible to meet with otheres who have had ECT, I think many are ashamed and keep it to themselves. I have been discussing it with my psychiatrist and psychologist and at the weekly mens group I go to. My psychiatrist and therapist acknowledge it and are supportive. However, their knowledge is based on what they know, not on what they have experienced and feel. It is not the same. I try to avoid even mentioning it at group. God bless them, they mean well. However they are clueless. At work, at the site where they know I had ECT, I deal with it by joking. In retrospect this probably has not been helpful, but it was the only way I knew how to deal with it.
Yesterday I worked at the oher site. One of the 2 Nurses (who knows I had ECT) was orienting another nurse. This nurse came up to me and said “John it is so nice to see you. I have missed working with you, we allways have a good time”. This nurse sat four feet away from me all morning and we did have a good time. At lunch, the other nurse came back and, making sure no one else would hear, said “you know who she is right?”. I had no Idea who she was. We had obviously worked together in the past, she knew my whole life story-minus the depression. It is exhausting being in such situations. The other nurse filled me in and over the last 24 hours things have vaguely fallen into place.
When I read your responce I thoght, oh my…someone gets it..lol. Very therapeutic :)
I am gratefull for ECT, but damn it kicked my a..!

johndinsdApril 8th, 2012 at 6:48 pm

Well I was placed on administrative leave 3 weeks ago. I filed an appeal, turned down. I have now filed my second appeal. This time the director of nursing is conducting the investigation. I was surprised, she actually called me in person to request a meeting. She listened to what I had to say and seemed genuinely interested in what I had to say. We talked for over an hour. I left feeling validated as an employee and feel her decision will be based on a thorough investigation. She has also kept me posted as to how the investigation is going. No one has requested to meet with me before. I am remaining realistic though and am looking for another job. One of the requests I made in my appeal was to be reassigned to another department at another site. I could not bare to go back to the job I had. I feel that I am more than capable at performing my job. My annual review stated I had strong clinical skills and critical thinking and my patient care was excellent. I will agree I am slower than before the ECT, but feel this is due to my renewed passion for nursing now that the depression is gone. Healthcare is changing and short cuts are being made, thats fine, but not if it means that patients are receiving sub optimal care. I advocate for my patients and am not afraid to voice my opinion. Having worked with cardiologists for 7 years, who have for lack of a better description, a “God complex” I have learnt to be very tactful in approaching this subject, but this may be part of the problem. Plus I think the other nurses have some animosity against me for the knowledge I have. It is ironic, I was a vet tech for 7 years and most of my knowledge was obtained at this time. The veterinarian I worked with went out of her way to teach me. There are some differences, but most mammals are prone to the same diseases. It is sad, but I feel that we provided the animals with a higher level of compassion and care. Being a veterinarian was a lifetime dream. I have considered staying on disability and attempting to apply to vet school. I feel that my 7 years experience as a vet tech and 10 years experience as a nurse would help me get accepted. But then I feel I would be abusing the system. But it is just a thought. I wish this site was more active and supportive. For the record I still do not regret the decision to have ECT, but empathize with those who feel that it caused more harm than good. There is a quote ” We must be willing to relinquish the life we’ve planned, so as to have the life that is waiting for us.”May seem trite to many on this site, but may benefit some. Hang in there, John.

meloMay 21st, 2013 at 6:45 pm

i suffer a lot from ect. i m from china.will the side effects be cured?will i be healthy again?

SuziJune 3rd, 2013 at 8:20 pm

Melo, no one can give you that information. People react differently to treatments, Almost everyone that I have talked to that have had ETCs do suffer some sort of memory loss some extreme some not as bad.. Most do not regain their memory and some live OK with that fact, but most do not. For me ETCs has made my life a real hell. I no longer work and have lots all the wonderful life memories and probably bad ones also. I can not remember my childhood, my parents, my wedding, my children growing up It has changed my personality. My children say it is like having a step mother they had to learn to know and I had to learn to know them also. I wish the best for you and hope things will work out better for you. The doctors do not tell you the whole truth before you receive the ETCs and most try to say what people are feeling or experiencing after is just not possible. Well they have not had ETCs and the problems have been known from before Hitler. I just have one question for you did you get yours in America or some other country cause I know they are banned in China?

John L. BarrellaJune 3rd, 2013 at 9:27 pm

I, formerly known as Ninuccio, have done nothing but pass on information about the treatments I received in the Rusk Institute called cognitive remediation. It is very effective for head injury treatments. Any person with a head injury needs to receive this treatment. This is not psychiatry. It’s main focus is to make the person in the groups understand the full extent of his injury. I have explained continuously. I had gotten off the group a while ago but then I realize this treatment was simply not published. In my life post head injury the Rusk was the most appropriate treatment ever. I thought I would get better, and I did…then I suffered a what they call syncope situation, was taken to Cornell Medical Center in Manhattan at approximately 12PM. I was passing out. Was visited then put in a waiting room where at approximately 5AM…immobile, and without being able to move I was rudely told by a security guard to get on the wheelchair. He was rude and forceful. I was surprised. As my head was spinning I made it to the wheelchair where I was taken to the front and few more security guards escorted me to the street in an old wheelchair. They left me on 68th. and York Ave 5AM. I barely made it to my cellphone. Called 911..when I was picked up again brought in the same place where I had been thrown out. As was taken in the nurse…or whatever he was came back from behind the counter there and stopped the ambulance workers. I was thus taken to the psychiatric ward where after two days I was discharged without any ambulance service. Lucky my friend, prior to him leaving me in the hospital before I was thrown out had left me enough money for me to be able to take a cab to my house in the Bronx. A few days later I ended up in Jacobi Hospital with what they called a syncope. Today I am on Medicaid Plus Program. I am assisted at home. I have a car service and an aide to do shopping for me. The terrible memories of this system will haunt me as my situation is retrograding. My terrible memories are the terrible realities of a system that simply not only does not work but it shields itself so well, that people who are head injured get thrown into a medical system…some of it the New York Scene of Cornell Medical Center…supposedly the top of the world. Where people in a medical system, of which even I had pledged…and probably not far from 68t.St. and York Ave…when I came to this country over 40 years ago…me and my mom raised our hands and pledged…
“…one country, indivisible, with liberty and justice for all”. These words are still being recited as people may still be put in the street in front of Cornell Medical Center. Like dogs…After being injured by other places…like dogs…and signing consent forms which are meaningless. The true worth of a society that has gone astray is not what it advertises on TV…But what it actually does, not to people who get cured…but to people like myself who get put in the street.
I am sure I will also be thrown off of this site here…but who cares anymore. My mom died a terrible death by a doctor who made mistakes and gave her the wrong medications. Although her condition was lited as a timely death…its true reality of a botched up wrong medication was never told. Her insurance was never paid because no malpractice was ever announce. You people had better get it together. IT SIMPLY IS NOT TOGETHER…IT WILL PROBABLY NEVE BE…Ninuccio. PS. So the answer to all this is cognitive remedation…and if they do this here,I wonder what happens in the rest of the world…Ninuccio

John L. BarrellaJune 4th, 2013 at 9:28 am

This is addressed to Melo. I am John Barrella. I was also damaged by neurosurgeries and ECT Will ever get better? It depends on how well you are, and that depends on the treatments you received. I want to make you aware is ‘”problematic” in the least in regards to “where” you will get the proper treatments. You can be out there forever and you will be shuffled here and there because psychiatry alone…CANNOT…possibly rehabilitate a head injury. Seeing a doctor who may be aware of head injury is possible but he should know that he would need to pass you on to neuropsychological testing and then finally to cognitive remediation. If you are able to go through this system THEN you can say. I am rehabilitated. If not, and I am damn sure,most have not gone through these steps…then you will carry that question you just asked. The problem here is that the system itself is corrupt. That is why you need to know that you have to follow ths particular procedure to get to the end of your quest. Since these treatments do exist that potential exists. What you will need to have is a proper advocate. In my years of head injury…33 at present…there was only one proper advocate. A litte Italian lady…(my mom). Who before her untimely death due to bad medications…(and they even got away with that)…was the solid rock that got me to the Rusk. Was on my side for yeas post that until I was aware of my injuries. It is not an easy trip. You will have to shuffle through and get the proper assistance…neurophychological testing, cognitive remediation for as long as you need it. I have seen many who required it, yet never been properly directed. I have seen many receive the neuropsychological testing and stop at that. You will need to seek a professional avenue.If you are able to make to the Rusk…that’s it. If not, there are other places that give cognitive remediation, but it needs to be done properly. Good luck in your quest…John L. Barrella

meloJune 4th, 2013 at 6:35 pm

thanks and feel happy for your reply,Suzi. i have got depressive disorder. and both psychotherapy and medication were not worked.then i thied ect.Here in China ect is not banned.doctors told me that ect is so good that even the old who is healthy will take that.in China there are also many ect victims.we complaint about it and try to find some ways to recover but it seems hopeless.what can we do now…

meloJune 4th, 2013 at 7:09 pm

This is addressed to John L. Barrella.a little difficult when reading your words but also thanks for your advises.in fact i am a graduate student and my major is about psychology.i have gotten depressive disorder too.so i am trying to quest for some ways.after ect i have got many side effects but memory loss is not serious for me.But I and other chinese victims(about four persons)have gotten some other side effects 1.stuffy head.like the brain has running out of oxygen so uncomfortable. 2 feeling the outside world is unreal .this likes the side effects of temporal lobe epilepsy.3 some memory problems.Current or current induced epilepsia impair the brain.if the nerve cells are dead they wont revive.but if they are only injured maybe it is going to be OK.if ect only damage the dendrites maybe it is also OK.and may be neurotrophy medicine、hyperbaric oxygen ation and cognitive remediation maybe can also promote this rehabilitation process.
just as you say, Seeing a doctor who may be aware of head injury is possible.ask a neurologist for help may work

John L. BarrellaJune 4th, 2013 at 9:17 pm

Melo, nice hearing from you. I live here in the Bronx of New York City…and I won’t even read the words I had written you because I know, at this time 10PM…I am tired…but I do want to reply to you. I may have some important information to share. You will see my site quite often on zaprap…then I was suspended because of controversies that developed between me and a member I vowed, as I had also done prior to disengage from this site and not continuously give the same which I received through 3 years of cognitive remediation, in the Rusk Institute in Manhattan. THAT is the place that finally made me not only aware as to the “full” extent of my injuries…but also to the incompence in the medical system that had caused me my injuries. My advice has always been given…not against shocks…even though it was the shocks did me in My advocacy has always been to try all means to avoid shocks…because the medical system itself is not so “aware” of head injuries. Now, I am not saying, that shock are necessarily bad. I am just showing people, by publishing a report that was finally made for me many years post head injury. Shocks do cause a variation of injuries…and the biggest would be for you, or anyone after shocks to get the proper assistance. Even though not all my injuries were caused by shocks…MOST of them were. I want to make people aware, not so much, not to take shocks…but if the shocks do cause damages…who is going to be there for you. I WAS LUCKY…my mom was there. Had she not been there I would not have been here on a computer…but would most probably have ended up in a mental hospital…(if I was lucky). If you wish tomorrow I can pass on to you more information, not only on how shocks can injury, but how well shielded doctors are in hiding behind their titles and their high malpractice insurance. I think you should hear direct information from a report that was made for my mother…(a fantastic old lady who was there for her son)…by Dr. Peter Breggin who is renowned for publishing true reports on the after effects of shocks…and how doctors are able to shield…John…aka. Ninuccio…
Listen Melo, with my head injuries, I have been not nicely…(to put I mildly)..effected. The rehabilitation is not even heard of. IT DOES EXIST. AND IT DOES WORK. I will get back on this site tomorrow and give you all insight possible. It will be very easy for me to tell you, because I have been through it…and the main reason why I keep on getting back on this site…is that that I have never heard the proper sequence spoken of. Close…but never fully explained. Any type of hit to the head…shocks, injuries, aneurisms…all have different causes but the assistance is EXACTLY the same…Ninuccio…PS. I will not need to take notes in my calendar program…to get back to you tomorrow night…good night…

John L. BarrellaJune 5th, 2013 at 5:32 am

I will hop here briefly this mornig. Melo every person, wether post shocks, before shock…has a cognitive setting..(cognitivion means…memory,judgemnt,insight,impusivity…etc.). Briefly what the cognitive remediation classes did for me was to 1st. of all take neuropsychological testing. THAT is Paramount. That needs to be done as son as possible. After that, a few symptoms popped up and put on a chart. The cognitive remediation classes…(which I will pass on to you soon)…are extremely simple classes. Every time you participate other unseen symptoms by you will pop out. After an extensive amount of time…maybe 6 month to 1 year…the chart should have the full amount of symptoms on it. You will continue with that chart until, much later, and through exercises, your brain will be able to adapt to those symptoms on the chart. THAT WAS IT FOR. I have spent years passing this information on but t doesn’t seem to have been able to make an impact. You do understand that once the brain injured…all the brain cells that are injured have broken up the connections in thoughts. These very simple exercises allow for that information to be gathered, those broken connections realized, and compensation to be established. I LIVE MY LIFE VIA A COMPUTER CALENDAR PROGRAM. I live my outside life by making a daily index card. I have been doing it since my classes in the early 90s. You simply need to “adapt”…or better yet…first accept your injuries by continuous attendance to the remediation classes. While you are accepting…you will also be developing compensation techiniques. In the Rusk I had two cognitive remediation doctors who undertook that role. It is because of them,and the treatment they administered, that when my mom, who had been my sole advocate for so many years,passed away…that I had been able to get my feet on the ground. Of course do realize all injuries are different. Now I need to be under care of a Visiting Nursing Service for assistance. So, having said all this…you will ask for insight for yourself and your friends. You will get lots of insight. This, so far, is what I have been able to contribute…take care until later…Ninuccio

meloJuly 24th, 2013 at 4:47 am

these days , I m busy.sorry for not relying on you.”brain damaged permently”.anytime i think about these words i feel sad. what can i do.to take cognitive remediation classes? but no classes here in china. tired

meloJuly 24th, 2013 at 5:02 am

maybe should i go to America.first make it clear for whats wrong with my brain after ECT.then get remediation.How much will these cost

JohnJuly 24th, 2013 at 8:34 am

Melo, I am constantly on the computer. I have a program by which I live my life with…BECAUSE of my “particular” head injuries. EVERY SINCLE HEAD INJURY is different. JUST LIKE EVERY PERSON IS DIFFERENT. However the treatment that you require…(NEED)…is GIVEN. But, not even here, and I deal with many doctors, NO ONE…is aware of it. I was the only person who decided to keep a paper in my wallet to show my physical doctors. When finally was able to show them the paper they became interested and actually listened to what I had to tell them. It was short lived because that was not their field. The other BIG PROBLEM…either here, or in China, or in Europe…anywhere…is that doctors go to work to make money. THERE IS NO REASON for them to get involved in something they know nothing about, they had rather keep you there to make their money. On the other hand…there is no reason for the other doctors who know, and give the treatment to tell other patients because to get the treatments…(even here)…would require a sponsorship by medical assistance that would cost thousands of dollars. So you see…they are trapped in their own “moral” care. They lose out quite a bit. Here in the United States, in New York City exists the Rusk Institute. These, jus like the rest of the world, are “business people”. People who make money. They go there to work to make money. They do not “advocate” for their treatments otherwise they would have to go out of their way then they would have to tell the very advocates of the head injured person how to get financial backing for this “very expensive” treatment. If you wish…one of these days I can get on and show you how cognitive remediation works…but I AM AFRAID, as every time I have done that, information VITAL to one’s life…there was always someone to confront me…(confront me on the very papers I had saved from my treatment in the Rusk). It got to the point where the coordinator of the group suspended me for 1 year. Now this site is still open. You, your friends, need COGNITIVE REMEDIATIOIN classes. They DO EXIST and are given professionally here in New York City, in the Rusk Institute. I can vouch for that. DO NOT THINK THAT THIS COUNTRY IS THE BEST FOR EVERYTHING. My only good advocate,my mom, who was born in Italy died from bad medications given here her in New York City. The doctor was well protected by malpractice insurance. So,having said all that…I am sorry this treatment is not given in your country…JUST be very aware that it is not even recognized here in this country. I have to explain continuously to all the new doctors I have seen. I LIVE TODAY with an aide that comes to my house 3 times a week. A nurse once a month. This is because of the injuries I sustained years back…which are still not PROPERLY recognized…so, good luck, be careful…and let me know if you want me to tell you how the cognitive classes work. I am constantly on the computer…there is no other way for me to live my life. My treatments must have cost over 80 thousand dollars years ago…but check this out…my computer was never given me by the place that rehabilitated me. I had to buy on my own. I had to find the right program on my own. THIS IS HEAD INJURY…wish you luck in your quest…John…aka. Ninuccio

meloAugust 2nd, 2013 at 5:41 am

i dont know what is wrong with my head.because my symptoms are different.cognition and merory is not a big problem for me.headache(head stuffy ache) is the one which i am suffering everyday after ECT.nobody know what i can do.which therapy will help.should i need to bear this for the rest of my life.

JohnAugust 2nd, 2013 at 10:23 am

I just opened up my computer. I use everyday because of my memory problems. You say your cognition and memory are not a big problem. Maybe so. I don’t know where you are at…but you would need the full “neurological” and “neuropsychological” battery of testing. Neurological should determine you physical “injury”. Just be aware, that even here…and under doctor’s care(!)(?)…my hemiparesis…(weakness on one side of the body)…was only discovered approximately 12 years later. You are dealing with “head” injuries…which are very hard to detect and you will need “specialized” testing for your “physical” injuries. The testing “does” exist…you just need to get to the right places. Here, in New York City, most doctors are completely clueless to head injury. It is you that need to seek out places that can give you the assistance you need. Had I not been directed to the proper place I would never have received the assistance necessary to make me aware as to the extent of my injuries…and MOST SAY…that since this is a “BRAIN” injury “neurological” assistance is “mandatory”,as well as “neuropsychological”. Even here in New York City…the assistance is here…BUT YOU NEED TO BE GUIDED TO IT. In “general” melo there is a general non care everywhere. Here, China, Europe…and doctors are able to very easily lie on their papers…and EASILY be able to get away with it since other doctors will not care to go against them…THIS IS A GENERAL RULE…so be aware of this. Seek out neurological as well as neuropsychological assistance. Been there. Done that…GOOD LUCK…John…aka. Ninuccio

LeahAugust 3rd, 2013 at 1:14 am

I have said this before. I was extremely and I mean extremely sick with depression for 4 years. I had the best doctors I had every medication, holistic and in hospital for most of this time. I broke the record in my country for the most ect. I had it 3 times a week for a year. I hear people blame everything they have on ect. I had one side effect and that was complete memory loss and to be honest I would NEVER blame my doctors know one understand the treatment well enough and that is a fact. I don’t blame them for a thing. It saved my life. I’m glad I don’t remember the horrific time I endures while being so ill. I don’t want to remember the things that lead up to being so depressed and anxious. I think instead of blaming any problem after ect we should embrace the fact in a lot of cases it saves lives. Has anyone read the statistic in the positive turn around in people’s lives. I suffer from all sorts of problems and with a lot of investigating and a more positive out look I have found the real medical answers. My memory loss is far more sever than anyone hear had stated yet I mange to fine the true blessing in my situation. My family had no choice, the doctors had no choice I basically has no choice and I thank everyone who made this decision for me. If you have exhausted all avenues this can be a very positive and healing process. I think these shock tactics are not based on the actual facts of people who hugely benefited from it. I also feel like many others people do not realise the new research and the not so negative association people have with it. I am a survivor who would thank everyone last person who helped me with this true cure. I think telling people it’s all horrific is a scare tactic and not helping them make a informative decision. If time permitted I would write a book letting people know how it very much saved my life.

meloAugust 10th, 2013 at 10:15 pm

i have taken EEG ,brain electrical activity mapping and MRI,are there some other neurology test?EEG and MRI shows i am ok.but BEAM shows my brain is hypoxia.dont know what happen
doctors knows little about ect side effects,so i look up to the scientific literature.but they all about the cognitve inparement or memory problems.there is only one book in which the symtoms described are like what i get.and use the word complications not side effects.
i want to go on to understand what happen in my brain.but it is hard.nobody knows.no article knows

JohnAugust 12th, 2013 at 11:14 am

The question of insight and judgement relates to these issues. The fact that it hurt me, does not mean it hurts everybody. ECT. is a treatment to assist. HOWEVER…once it injures “doctors” can easily bail out. They did with me. I have given advocacy about “cognitive remediation”…a treatment basically not known by any doctor I have seen outside the Rusk. So if you become injured…It is extremely important for to undertstand damages…but let me not say damages…I will call them “differences” in your new situation. There needs to be a progressive state of rehabilitation. Neurological…(as stated by melo)…but ALSO…and far more important…NEUROPSYCHOLICAL…In cognitive remediation your testing will be put on a poster and then you will enter the extremely simple…(and well devised)…treatment…that will bring out your cognitive setting. It will take time. It will not rearrange your brain in any way. It will allow you to learn of your “full” cognitive setting. It will allow you to train how to work around that. I seem to be the only person who has received this treatment…who actually speaks about with “complete” regard for it. I believe it is mandatory with anyone with head injuries whose cognitive status is compromised. The only thing I am doing…Melo…is to make you aware of it. It may still be given in the Rusk Institute in Manhattan. However, it was never mentioned by the same doctors who gave it to me in some meetings I had been to. So take this for what is worth…and good luck…

meloAugust 18th, 2013 at 3:18 am

thank you, John.brain damages can not be cured?what we can do is to acceopt thatand live with it?
i am always trying to cure my head problems.i want to be healthy again.so regret to accept that damn therapy.my life has been ruined!before the i got ect was only depressive.but now look at me.gotten some adverse effects nobody knows.
i know complaining means nothing.but trying to know the sideeffect,trying to cure the disease also means nothing.no way for me.
my life has been ruined!

JohnAugust 18th, 2013 at 10:07 am

I have not reread my post. I don’t have to. I know that it is very very important to understand the “cognitive status”. I also realized that I HAVE NOT SEEN the proper places and treatments for cognitive remediation not even here in New York City…(except for the Rusk Institute on 34th Street in Manhattan). Most of the people who are head injured are not aware of them…or better yet they may mention some of their psychiatric difficulties as a result of head injury, but they have never received “cognitive remediation”. I have been out of the Rusk and still carry as proof of my injuries an index card…(with a few other papers). I need to check it continuously as to not get derailed from it. That index card reminds me on a daily basis my “cognitive” injury. I have had to show it to the doctors whom I have seen…WHO HAVE NO AWARENESS WHATSOEVER OF THE TREATMENTS.
When you say…”your life has been ruined”. Your live has definitely changed…BUT…be aware that there are many head injured individuals who simply don’t have the potential to understand that their life has changed…and cannot even be seeking what you are seeking. Understanding your injury…(me understanding mine)…will bring you to different levels. Your life has not been ruined…basically…because you are seeking your injuries. It has taken a blow. I DON”T KNOW THE EXTENT of your injuries…AND…unless you get into a cognitive class…(an EFFICIENT) cognitive class. Even though I have been around quite a bit prior to my present condition, I had never come across them. I was at a meeting at ICD…(International Center for the Disabled)…where a speaker mentioned cognitive retraining. When I asked him how long is it is for. I was told it was for 3 months. At the time I had been in he Rusk’s cognitive classes for just over 2 years. I don’t know if it was the same treatment but the least I had seen one of the members in there had been 1 and a half years to 2 years. So by saying all this…what “I” think you definitely need is cognitive remediation. What I think every person in this world needs is cognitive remediation. It simple opens up your awareness to your cognitive function. Even if you have no head injury I am sure your distractibility will come out. Your impulsivity in certain situations will come out. If a person is head injured…usually memory problems will be the first thing that comes out…through appropriate testing…as a matter of fact if your neuropsychological testing was only for 5 hours…your problems will begin right there. It needs to be given for several hours in several days…(allowing the brain to rest)…You need the proper treatment. You don’t cure head injury. You simply become fully aware of it. As I was going through my cognitive classes,and my symptoms popping up, I became very depressed…but my depression was offset by the awareness that now…finally I was becoming fully “aware” as to my cognitive status…so take this for what is worth. Lindra Andre has pointed out all the negligence in head injury by shocks. There are a lot of quacks out there who learn a very profitable trade…shock treatments…but as they perfect it they know if they cause damages it is so easy to get out of taking any kind of blame. One of the doctors who did this to me was very well shielded. BE CAREFUL AS YOU SEEK YOUR ASSISTANCE. IT IS THERE…just as all the quacks are there…easily able to cover…John

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Healthcare ProviderMarch 7th, 2014 at 10:11 am

As a middle-aged woman, I was suffering from medication resistant MDD approximately a year ago with suicidal ideation and was inpatient. We decided to start ECT (unilateral). After approx 6 treatments, I was released due to improvement, and continued treatments on an outpatient basis. I did not have a lot of side effects at first. My depression went up and down, but after returning to work full time in the military as demanded by supervisors, my depression worsened and I became suicidal again and resumed more frequent ECT, this time bilateral with more side effects. The side effects were mostly memory loss surrounding the past year such as people I had met, cognitive map, places I had been, etc. Again, it helped slightly. I was released once again. I was doing CBT and kept doing therapy outpatient. I had tried nearly every medication one can imagine, but mostly stayed with Effexor. After 9 months of ECT and 19 treatments later, I decided to go inpatient on my own accord to a residential women’s program that did DBT therapy, and it was a miracle! I wish I had learned about this therapy earlier! Again, my diagnosis has always been Major Depression with Anxiety, but DBT is amazing and a great process for everyone. Plus, when I got out of that program, I was put on Topamax in addition to the Effexor which helped so much. I wasn’t so weepy, and I have had energy that I haven’t had in the past few years, and have HOPE! I am on my way to a new beginning. I still have some residual memory loss, such as bits and pieces of retrograde memory loss, but I am noticing that it gets better all of the time. I am a professional and am noticing that my long-term memory and working with people is untouched. I guess my opinion on ECT is that it isn’t for everyone. I feel that at the time it did help me in the moment to get out of the suicidal ideation when medications weren’t working. I didn’t know about DBT therapy back then. None of the inpatient facilities practiced that therapy. And, nobody ever tried Topamax with me. At any rate, I can choose to hold on to past feelings such as “What if they would have…” but the fact is that I am in a better place with some residual memory issues that I will continue to work on, but not dwell on. I am HERE with a beautiful family and HOPE. I just take one day at a time. For those of you still debating ECT, I personally would recommend fully discussing with the doc any alternate drug categories that maybe haven’t been explored, and stick to unilateral ECT if you decide to go that route. Again, it isn’t for everyone, but some have found relief. I am sorry for those that have had dishonest or terrible outcomes. These are just my opinions. Best wishes to a happier YOU :)

SherylApril 18th, 2014 at 5:44 pm

Hello Healthcare Provider,

I’m glad you discovered DBT. I found it the most effective treatment my life long NDD. I discovered it 6 months after relapsing from my first ECT treatments, 8 of which were bi-later. I, actually, didn’t discovered the depth of my memory loss until 1 year after my last treatment. I had a few memory problems at the 6 month post check-up. It wasn’t until after this that the extent of my retrograde loss started revealing itself. I hope your memory continue to stay intact. Hopefully, you’re one of the lucky ones.

NinuccioApril 19th, 2014 at 6:46 pm

To Melo:…from article…”Clinicians should be aware of the potential beneficial role of cognitive rehabilitation in the treatment and management of these effects.
Furthermore, no attempts have been made to provide any form of memory rehabilitation or cognitive retraining to patients who experience persistent memory and other cognitive problems in these areas following ECT. Here we argue that cognitive rehabilitation could be offered to such patients as a means of addressing these difficulties in a constructive way.
The importance of assessment
Furthermore, the lack of consistency in the types of measures used to assess patients has made it difficult to clarify the extent and duration of the reported cognitive problems and the impact they may have on the individual’s overall quality of life and sense of self.

Salford Community Health Council, 1998 ; Royal College of Psychiatrists, 2005) patients who report persistent memory loss have not been systematically followed-up or referred for neuropsychological assessment. As a result, their progress or deterioration over time in terms of cognitive performance has not been monitored.

Monitoring patients’ self-reports of adverse side-effects to ECT has also been recommended by the Royal College of Psychiatrists (1995, 2005) and the National Institute for Clinical Excellence (NICE, 2003). Benbow & Crentsil (2004) have shown the importance of measuring such experiences during treatment, as it allowed the ECT staff to take immediate action to try to relieve the problems. For instance, if patients reported persistent confusion or memory difficulties, staff could change from bilateral to unilateral ECT or increase the interval between treatments.

The failure to adequately provide neuropsychological assessments to patients receiving ECT means that the impact of additional, subsequent episodes of depression and/or future courses of ECT on overall cognitive functioning remains unknown (Robertson & Pryor, 2006). Establishing a baseline of functioning before an individual’s first ECT treatment is extremely important in terms of its association with ‘cognitive reserve’. This concept refers to individual differences in factors such as education and occupation, which may be protective against ECT’s adverse effects on memory functioning (Legendre et al, 2003).
Neuropsychological assessment of memory
There are many factors to consider in the neuropsychological assessment of patients receiving ECT. These include the selection or development of appropriate testing materials, the timing of testing sessions (Robertson & Pryor, 2006) and the effects of factors such as mood, metamemory and memory self-efficacy on performance (Mateer et al, 2005; Ponds & Hendriks, 2006). Additional problems, such as limited access to neuropsychology services, financial and time constraints, may have an impact on the number and frequency of assessment sessions that can be undertaken.
Although Robertson & Pryor (2006) recommend that patients who have had ECT should be assessed with the kind of neuropsychological tests that are used for patients with known or suspected brain injury, they acknowledge some of the problems associated with these traditional, standardised tasks. The main challenge appears to be designing tests that are sensitive to the memory and other cognitive demands placed on patients in their everyday lives. This task is made even more difficult by the realisation that patients with memory disability may not be able to give reliable self-reports of their memory functioning (Cronholm & Ottosson, 1963; Robertson & Pryor, 2006). Rose et al (2003) note that neuropsychological assessment of the extent of memory loss in ECT patients has tended to focus on the ability to form new memories (anterograde memory, Box 1), whereas patients have commonly reported the loss of autobiographical memory (retrograde amnesia, Box 1) following ECT (Coleman et al, 1996; Peretri et al, 1996; Donahue, 2000). However, loss of autobiographical memory does not appear to have been adequately investigated (Robertson & Pryor, 2006). Furthermore, alternative versions of tests may be required to reduce practice effects over repeated assessments.
As mentioned above, encouraging patients who are undergoing a course of ECT to give self-reports of any adverse side-effects can be beneficial in terms of allowing staff to take immediate actions to reduce or relieve these effects (Benbow & Crentsil, 2004). However, in many studies the premature assessment of memory and overall cognitive functioning following ECT has led to inaccuracies and underestimations of patients’ impairment (Squire & Slater, 1983; Weiner et al, 1986; Coleman et al, 1996; Peretti et al, 1996; Donahue, 2000; Rogers et al, 2002; Robertson & Pryor, 2006). It may take a number of months for patients to gain a more stable view of permanent changes in their memory and cognition (Weiner et al, 1986; Coleman et al, 1996; Donahue, 2000).
A further problem relates to the ambiguity of meaning in the phrase ’short-term memory loss’. Does it refer to type of memory or duration of loss? Robertson & Pryor (2006) recommend that the phrase ‘temporary memory loss’ should be used when referring to duration. Patients who interpret short-term memory loss in terms of duration may not be inclined to complain about memory difficulties, believing that they are to be expected and will resolve within the ’short term’. This may lead to an underreporting of memory problems among patients who are assessed only a few days or weeks after the completion of ECT and highlights the importance of scheduling follow-up assessments after the 6-month time point (Service User Research Enterprise, 2002; Robertson & Pryor, 2006).
Although reports have claimed that about one-third of people receiving ECT experience persistent memory loss (Service User Research Enterprise, 2002; Rose et al, 2003; Scott, 2005), it is unclear whether patients receive treatment or assistance from psychiatrists or other mental health professionals to deal with this disability. We do know that some patients turn to sources of help outside psychiatry (e.g. self-help groups) for support (Johnstone, 1999). This failure to attempt to rehabilitate patients may reinforce the negative public image of ECT specifically and psychiatry in general.
Cognitive rehabilitation therapy is ‘a systematic, functionally oriented service of therapeutic cognitive activities and an understanding of the person’s behavioural deficits’ (Malia et al, 2004). Its aim is to achieve functional changes by reinforcing or strengthening previously learned patterns of behaviour, or establishing new patterns of cognitive activity or mechanisms to compensate for impaired neurological systems (Bergquist & Malec, 1997). Cognitive rehabilitation therapy has a large evidence base and has been widely researched among patients with acquired brain injury.
Memory rehabilitation
All patients should undergo cognitive assessment before their first ECT session. Subsequent comprehensive neuropsychological assessments should be routinely undertaken if patients report memory and cognitive disability following ECT. Assessments should take into account baseline (pre-treatment) functioning and should use tasks that are sensitive to the nature of the patient’s everyday problems and that take account of the influence of patient’s current memory, sense of memory self-efficacy and mood. Reassessment should be scheduled after a sufficiently long interval (more than 6 months after treatment) so that persistent cognitive and memory deficits can be identified. Furthermore, patients’ self-reports of adverse side-effects, particularly those concerning deterioration in memory and cognition while undergoing a course of ECT, should be properly investigated by staff in the ECT clinic (NICE, 2003; Benbow & Crentsil, 2004).
It should now be clear that documenting neuropsychological deficits is not enough; a specific programme of cognitive rehabilitation should be designed and made available to all patients with persistent cognitive difficulties following ECT, and details about this treatment should be included with the information that patients receive prior to treatment. This programme should incorporate methods of training and strategy learning of known efficacy that aim to generalise skills to all domains of the patient’s life. Clinicians should be aware cognitive rehabilitation appears to be most successful when patient’s physical, psychological, social and vocational well-being are considered together and when the programme is extended to include the family or caregivers (Mateer et al, 2005).
Cognitive rehabilitation following ECT offers a constructive way of treating and managing the most commonly reported side-effect, which is currently left untreated. Over time, this acknowledgement of the presence and impact of cognitive disability in ECT-treated patients, together with the education of patients, families and mental health professionals about ways to deal with these difficulties, would lead to better overall adjustment by patients and the development of a new sense of self.

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