About ect.org

To help support ect.org financially, please shop via the bookstore, in association with Amazon. Thank you.

Changes

If you’ve been to ect.org before, you may have noticed big changes to the site. I’ve switched over to a CMS system (WordPress) to help me manage the site more efficiently.

There were so many old files – news stories, studies, and so on – that were important to keep online, but they were all hand coded in straight HTML. The new system uses a MySQL database, so I had to find a way to import every item. Rather than spend many months trying to do it by hand, I came up with a series of scripts (Unix, Visual Basic if you’re interested) to automate the process for me. It still involved a lot of work, but it was a fraction of what it would have been had I tried to do it manually.

However, the process involved taking HTML code, stripping it down to straight ANSI text, formatting it into the proper syntax for the database, and finally, importing. So there are bound to be some characters that were incorrectly converted, strange typos, and other minor errors. As I see them, I’ll fix them. But in the meantime, you may run into an odd question mark that should have been quote marks, or something like that. If you’re so inclined, you may let me know of a typo or other errata by clicking on the contact page (located on the left sidebar under “About ect.org” and also at the bottom of each page in the footer section). Send me a note, but please be specific. I need an exact URL and some kind of description of the problem. General emails that say “Hey I saw a typo” are unhelpful.

That said, I hope the new system will be more efficient, and easier to maintain. The site has grown quite large and keeping up with it on a timely basis can be a daunting task. I’m pleased to announce that my dear friend and colleague, Linda Andre, will be an editor and regular contributor at ect.org as well. If you’d like to know more about Linda, please see the CTIP pages, link located under Affiliated Sites links on the left menu.

Also please note that the “added” dates on all of the older articles will be July 2006, because that’s when they were ported to the new system. However, the original article dates are normally listed within the body of the articles for your reference.

History of ect.org

I began ect.org in 1995, and it’s gone through many evolutions. Despite cosmetic changes, my goals have remained constant: to provide as much information as possible about electroconvulsive therapy for anyone who wants it, and to provide a sense of community and support for those who have had ECT, good or bad. It really is that simple.To learn more about me, my own involvement with ECT, and a more detailed history, please see the original “Why I created this website” page.

Who is behind the curtain?

My name is Juli Lawrence and I started ect.org over a decade ago. You can read more about why I started it by clicking the link in the previous paragraph. There are no corporations or other organizations behind me. I receive no funding to run the site, and run it out of my own pocket. I do accept donations to help defray the costs, and I sell Amazon books as well.

In the past, I’ve tried other affiliate programs and some Cafe Press items, but Amazon seems to be the most successful. It’s not huge, but every little bit helps offset my costs. So if you’d like to help out monetarily but don’t have spare money to donate, you can make sure that when you purchase books and other items at Amazon, go through this website so ect.org gets a small commission. I also briefly tried Google ads, and that was a disaster. First, I never made a cent, but more importantly, the ads were ridiculous. They either promoted pharmaceuticals in ways I considered sneaky and somewhat deceptive, or products completely unrelated to the site. I also don’t like the idea of cluttering up the site with a bunch of ads, so I quickly dropped that.

This site has always been – and will always remain – devoted to sharing information and providing support, not making money.

In the interest of full disclosure, I offer the following:

1. I have lifelong ties to the pharmaceutical industry. Members of my immediate family are either retired from the industry, or currently work in the industry, for one of the major corporations. They are “company men.” My childhood was spent under the umbrella of this corporation and I grew up surrounded by everything related to this company. To this day, I have giveaway products around my house, and on my desk: mugs, calculators, sticky notes, pens, backpacks and so on. I have personally profited – and continue to profit – directly and indirectly, from the profits of the pharmaceutical industry.

That said, I’ve never worked for the company and do not currently own any stock in the industry. My close family members do, but that’s their business, not mine. I’ve been privy to “inside” information that I wish I did not know, but it’s nothing that isn’t already available in books that expose industry practices. (The book I consider the best expose on the pharmaceutical industry is “Bitter Pills” by Stephen Fried, available at Amazon. It remains on my personal list of top ten favorite books.)

So, my “ties” to the pharmaceutical industry are by proxy, by way of family members who have spent their careers with the company. While I *personally* have been on the receiving end of the benefits of the most profitable (legal) industry in the world (according to Fried), I remain critical of industry practices and do not receive any funding from them.

This is why I am quite sympathetic to the criticism against President George W. Bush regarding his “ties” to the pharmaceutical industry. From what I’ve been able to gather from the information made available by fellow activists, his ties result from his father, the first President Bush, formerly being a board member with Eli Lily.

If he’s guilty by association, then I am equally as guilty. If you hold a person accountable for the career choices of family members, then yes, President George W. Bush and I share the same crime: we have ties to the pharmaceutical industry.

GUILTY!

Sorry, but that’s lame and I’m the kind of person who calls a spade a spade. Based on the information available to me, the attempt to smear the current president as a pharmaceutical industry hack is weak. There are plenty of things one can criticize about the president. His ties to pharmaceuticals are not one of them.

2. I have received monies from both state and federal governments, some while in my capacity as owner/operator of ect.org. The state funding came long ago, pre-ect.org, when I worked for an agency that provided medical and social services for adolescents in Illinois. Illinois tax dollars paid my salary. I also taught for two years at a state university, with my salary coming from federal and state money. (This was also pre-ect.org.)

Since the founding of ect.org, I have received expense money and small honorariums from the federal government, SAMSHA to be more specific. (Under Health and Human Services and CMHS.) I have given lectures and presented papers at federal agency conferences, speaking for myself and ect.org. The funding for my travel expenses and honorarium came from the federal budget, and therefore, tax dollars.

I also served on the committee that researched and produced the CMHS statement on electroconvulsive therapy. Again, my trips to Washington, DC were paid for by the US Government, as was my honorarium.

Additionally, I served three years on a federal advisory committee (we made policy recommendations), also within SAMSHA/CMHS and my expenses/honorarium were funded by federal dollars. My term has since expired.

That sums up my “funding.” None of the funding has been for the benefit or operational costs of ect.org.

However, I am currently in partnership with a friend and we are exploring opportunities – governmental and private – for research funding. If you hear of grants that might be appropriate, please let me know via email.


This page last modified on October 25, 2006 @ 12:03 pm

Comments (92)

youssef mzaouiselkblogMay 30th, 2010 at 8:29 pm

metropolis .no one sam :) as you . rattling!!, Good to see more people writing about this subject.

Ann MillerOctober 19th, 2010 at 10:56 am

I am so thankful to have found this site at a time when I so desperately needing support and help. I need all of the information that I can get. I just wish that I would have found your site and similar sites before I made the decision to have ECT!!!! Thank you so much!!!
All of the comments seem so long ago, I am hoping that people are still seeing this site.

FionaOctober 21st, 2010 at 7:22 am

I am reluctant to write but at the same time I hope this site finds new comments and contributions, as Ann has requested. I myself had ECT approximatly 5 or 6 years ago.. I will visit this site again. My memory is horrendous, and I am now 46 yrs old.

timothyDecember 2nd, 2010 at 6:50 pm

me and my wife have recently purchased St. Albans hospital in Radford , Va.. It is about one hundred years old. We are going to remodle it and make a research center out of it. When i was 14 i had 20 ects there.Part of the project will be to put the ect room back in the condition it would have been 40 years ago and bringthose who have had ect in with a psycologist to work on over coming the memory of ect. If you would like to get involved let me know and we will talk. thanks , tim

timothyDecember 2nd, 2010 at 6:55 pm

I have a project i would like to talk to you about. i think i erased my last comment.We have purchased an old psychiatric hospital are are going to turn it into a research center. part of what we are doing is to help people who have had ect to over come the negative effects and bad dreams of thier experience. i had ect at this hospital when i was 14 (1973) if this sounds like something you might would like to be involved with let me know. thanks

MargaretDecember 19th, 2010 at 9:16 pm

The FDA allowing public comment on docket No. FDA-210-N-0585. FDA meeting to determine the safety classification of ECT machines. Meeting to be held January 27-28, 2011. FDA website to post public comment: http://www.fda.gov/AdvisorCommittees/Calendar/ucm234979.htm

CrystalDecember 27th, 2010 at 12:29 am

Hi,
I’m a 29 year old female from Lancaster, New York. I had hit rock bottom with bipolar disorder about 4 years ago and my doctors told me ECT was my last hope. I was too depressed to make a clear decision in that state and well I thought “things couldn’t have possibly gotten worse”(boy was I wrong) one person made an attempt to talk me out of it but I’m intelligent and stubborn so that wasn’t happening. It literally messed up my life. The doctors told me some sort term memory loss would be expected but otherwise I would be feeling better. If that wasn’t a blatant lie. Not only do I still have constant short term memory loss. Huge chunks of the past our missing. I live off my cell phone planner and alarms to take my pills, eat something, take more pills, feed the cat take more pills, and to get to appointments on time. On top of that my house is littered with fluorescent post-its (my one true friend in life lol) just to remember something simple. Now maybe if the ECT would have worked even a little I maybe say its justified but I doubt it. ECT did nothing for me but get me angry enough to yell at my doctor “Stop zombifying me, stop stealing my memories, and stop making me nothing but a shell of a person” and then checked myself out of the hospital. I deal with horrible memory problems everyday. Other people that haven’t went though some type of severe memory problem don’t understand. I Graduated from an Ivy League College with a BS in Accounting and in the All College Honors Program. Now I’m lucky I can string a few words together, can barely spell…always confusing homonyms and when I try to talk there will be a specific word I’m looking for that I know I know and yet I can never find it. I have to pull out a calculator for simple math. Its sad. I’m still severely unstable in concerns of my bipolar disorder I’m on meds that well take a little off the edge or I’d be trying to fly off building or attempting suicide again. Well in any case I swore I would start a website about the down points of ECT because every time you search you either get the new “company line” of how wonderful it is or get pages from the dark ages. Well in my current state I haven’t been able to be at the computer for a long time (other condition) and well I can’t find the inspiration to write. A close friend of mine called me in a panic the other night. He was asking me if I would ever recommend ECT to anyone. Of course I said no and got up on my soap box. Well his girlfriend has pretty much decided to do it. I told him to tell her what I said or call me anytime 24/7 so that we can just talk seeing as I been through it. 5 minutes later my phone rang. I did my best to talk her out of her but she’s intelligent and stubborn as me and well I heard the same damn words coming out of her mouth that came out of mine 4 years ago. Its hard to debate when your talking to someone very similar to yourself. So I checked in with her tonight and she has decided to go through with it. I believe in early January. I’m preparing a list of things that I wish I would have done before ECT, and while at the hospital, and when I got home. Any suggestions would be helpful. Just trying to help a woman in a situation that I found myself in before (kinda if only I knew that back then) Also did anyone have any side effects besides being zombified, short term memory loss, & long term memory loss? I had seriously more severe migraines. I’m prone to migraines but these were the worst I think I ever had. I can’t remember of any other side effects I had seeing as its been 4-5 years ago and the memory problems it cause. Any help to help her would be nice even if its something simple like write down your passwords to things and keep them in a safe place. Thank you for listening. I hope I wrote this in the right spot if not I’m sorry please let me know where I should be writing.
With hope,
Crystal

FionaDecember 27th, 2010 at 4:37 pm

Hi Crystal, as you I have major memory issues. The one thing I do remember during treatment is sleeping all the time, my family tells me it was about 20 hours a day. When I woke all I would did is eat drink and stare at the television. I hope this helps when you speak to your friend. Good luck
Fiona

CrystalJanuary 2nd, 2011 at 2:53 am

I got two emails saying there were two new posts and yet I click the link to see them and they are not there. Does it take a while for new posts to show up (delay) or am I completely missing something?

JuliJanuary 2nd, 2011 at 3:24 am

Crystal, some spam got through the filters, and I deleted them.

CrystalJanuary 2nd, 2011 at 3:35 am

oh ok Thank you Juli

Ann MillerJanuary 11th, 2011 at 12:46 pm

I am so happy to see that you have updated your site.
I will continue to check daily for any new comments or support. It has been 3 months since my ECT treatments and I still feel like crap!!! More than that though I feel like a different person and I don’t like that……

CRYSTAL…your experience sounds very much like mine. Maybe we can share more if you want to??? Let me know. Hang in there…and I know what you mean about being a zombie, me too.

Thank you so much Juli!!! We need you and your information.

CrystalJanuary 11th, 2011 at 7:08 pm

Well as a general update my friend is currently going through the ECT process. I’m terrified for her and am currently checking in on her by phone because she lives in a different state. I’ve told her everything I could before hand to try to prepare her for this. She wouldn’t talk to me three days before her first treatment because she thought I might scare her out of it. So some info. I wanted to tell her I didn’t get to tell her. I do talk to her about playing little memory games and journaling and then the next day reading it to see what she remembers. She seems very cooperative. I’m trying to keep her mind working and not let it just sit zombified. Its hard considering we are new friends and also the fact that we communicate over the phone or text messages. I’m working hard to help her out and in doing so I’m finding possibilities to help myself. I’ve currently looked into some cognitive rehab and just recently got a list of neuropsychologists in my area. I intend to bring it to my psychologist and speak with him about it.

Ann Miller: I would be happy to discuss ECT and your and my experiences. I’m not entirely surprised that you still feel that way. It took me quite a long time to come out of that. I have some tips and tricks that helped me. If you want to contact me privately my email is c13sweetie@aol.com just put CRYSTAL or ECT in the subject line so I don’t delete as spam. I hope I’m allowed to give my email on this site if not I’m sorry. If you continue to want to talk through this posting then tell me your story and whats going on.
Blessings to all,
Crystal

AnnJanuary 18th, 2011 at 8:44 am

Crystal,
Thank you so much for your email, I will contact you.
I hope that your friend will be okay. After you go through ECT yourself it must be very scary to see a friend go through it. I wish that I would have had someone like you after my treatments. You must be a wonderful friend to help like you are! :)

Look for my email.
Thank you so much…ann

CrystalJanuary 18th, 2011 at 11:52 am

Ann,
I shall await your email. Thank you for the hope for my friend. We’ll take as much hope and positive thinking as we can. And you are right it is scary seeing a friend going through ECT after you already been there and done that and it not turn out real well.

I hope though, this is even way too positive for me, but I hope that through sites like this we can connect with others, those that are considering ECT, have went through ECT, and well even help educate one’s friends and families of what one goes through. I think there should be more of us out here talking. Not only does it help spread information that might help someone but just by telling our story we are helping ourselves to heal. I know it took 4-5 years and a friend in need for me to come out of my ECT closet. I’m a sucker for helping other people but in doing so I always find myself helping myself along the way. I figure if your reading this throw out your story. Your maybe not alone and maybe someone has something to say that could help. Or maybe you could even be the one helping. A lot of the people you meet in every day life have no understanding of what certain people go though and well I feel that often makes us feel so alienated and alone. I think its good to know that we are not always alone. And I thank ect.org for giving us such a forum to speak.
Sending hope and the power to change one’s own life to all out there
-Crystal
PS-I’m not always this positive…I almost made myself gag lol

richieFebruary 17th, 2011 at 9:53 am

with all the info out there i still find it hard to make a desision on weather to let my wife get it. her psy said she should and so did the state doctor. she has med resistant depression and cant even leave the house.

CrystalFebruary 17th, 2011 at 5:23 pm

Richie: I have had ECT in the past if you haven’t read the prior posts you can do so to see part of my story. However I have talked to a few people that have had ECT and also people that were making the decision and well I helped them through the process, so I don’t only have my opinion but I have some other people’s. Mental illness is difficult and that is an understatement. I personally would say that if the person isn’t highly suicidal and or severely harming themselves that ECT should not even be considered. Even if its a highly suicidal case I don’t know if I think its right to recommend it. I think one should try a number of other things before they listen to a doctor say well ECT is your last hope. Once you go through ECT you can’t go back. Its not like medication where you have a bad side effect and you can dump the pills down the toilet. It can cause permanent cognitive problems similar to brain injury. I know how it is to say well ok lets try it, things can’t possibly get worse but believe me they can. I found that out the hard way. ECT is a difficult decision to make. I respect people’s decision on the matter. I do however if I know a person is going to go through it if they are willing I like to prep them for what is going to happen and give them some tools to help them make it through it with less problems than what I had. If you have any questions or would like to talk to me just put up post.
With hope,
Crystal

ErinFebruary 18th, 2011 at 1:04 am

Crystal, Thank you so much for sharing your experience with so much openness and honesty. I’ve had depression my whole life; three years ago I found myself constantly hospitalized in which I was told that I was basically hopeless–and that I was the perfect candidate for ECT. Dealing with being bi-polar and hating to be on meds as well as being the constant gunea pig for the phychiatrists, I was so defeated that I’d have done ANYTHING! All I’ve heard from those who’ve had ECT were positive stories but then I began to wonder — do those with negative experiences have a voice – probably not. I wanted to do it and ultimately decided to give the meds and therapy approach one more year…so far I’ve had improvements but I’ve kept the notion that if things got bad enough it would be a toss up between suicide and ECT. I wanted to share that with you because all that you posted here gives me hope, and also the courage to push forward. Thank you.

richieFebruary 18th, 2011 at 7:45 am

this is sort of a blow to me. all ive heard is that its my wifes last hope. this is th first place ive heard so much negitive stuff. i know it is not a light decision but id also hate to come home to a dead wife some day. she has been on every med.

MaryFebruary 18th, 2011 at 8:07 am

Hi Richie–

I have battled with depression my whole life, especially the last 15 years. I have raised three children while doing everything I could to save myself. I’ve been on lots of meds, and hospitalized several times. When things got bad again this past fall, my doctor and I decided to try a course of ECT. I started in November, three treatments a week, now down to one a week. They are definitely helping. My memory has some problems, but nothing like what has been reported here. I am quite functional. And frankly, some memory loss seems a small price to pay for any improvement to my depression. The treatments energize me, pull me out of the bed and help me get things done. Eventually it wears off though. I am hopeful that I can go longer between treatments, eventually doing just a maintenance treatment every month or two or three. I want ed you to know that there are some of us out there who are doing ECT and are not being destroyed by it. I wish I could say it is a miracle cure. I can say it has been a good thing for me–some minor memory loss and a much needed boost.

SusannaFebruary 18th, 2011 at 10:12 am

Richie, you don’t hear negative stuff at other sites, because they don’t allow it. This is the only place that lets you totally speak your mind. Notice that both positive and negative experiences are allowed, not just one.

Most sites are run by people who either accept advertising and don’t want to upset their money cart, or they’re owned by the companies…secretly.

Like Mary says, it wears off, usually after about 6 weeks. Everyone knows this. Did they tell you this? They usually don’t, because a lot of people wouldn’t bother if they knew.

Cocaine used to be the go-to drug, and Freud himself used it. It wears off too, but you feel awfully good while it works.

CrystalFebruary 18th, 2011 at 12:48 pm

Richie: I know its a difficult decision to make if I can help in any way let me know.

Mary: I’m glad that ECT has been helping you and will keep my fingers crossed that you will be able to go longer between treatments.

Susanna: I think your correct in the doctors not telling the patient that its not a real fix its a short term band aide. I think in some cases yes a quick fix for the short term might be necessary if the person is really that much of a danger to themselves. I still however think that after ECT a patient still tends to have to go back on a medication and therapy regimen and will still have to deal with the illness they have.

With hope,
Crystal

richieFebruary 18th, 2011 at 5:28 pm

my wife thinks if she gets the ect that she wont have to take the 9 meds that she is on. they have to be switched and raised over the years. although she is now on disability the expece of the drugs makes her feel guilty. I dont mind going bakkrupt for the women I love, it still brings alot of tension into the marrage . I refuse to give up and appreaciate all your comments to me. your right about her doctor.after 15 years of visitd I think he is running out of ideas.

JessieFebruary 18th, 2011 at 5:57 pm

I didn’t qualify for disability until after the ECT. The guy at Social Security made a snide comment that he thought people go for the ECT just to qualify, because it seems to be what tips them over. I didn’t really help me, I was out of my mind for a few weeks and didn’t feel depressed (so they say) because I was so bonked. Then when that woar off, I was back to depression only worse.

And there was never any mention of going off the meds. They said I’d have to take those forever, ECT or no ECT. Like others said, a lot of this was never explained to me or my family. My family is pissed because they feel like they were totally lied to about it. The pdoc just wanted to keep giving me more ECT forever and I was completely non fuctional. I don’t call that a cure.

I posted here before about how great the ECT was. ROFL. I was out of my head with ECT drunkeness I guess. Can’t find that post to delete it, but I found where I wrote it on notepad.

I’m still depressed. Nothing has changed except now I can’t work anymore. I can’t even drive because I cant remember my way home. I’m a damn mess and don’t know what to do. I wish I had a husband who cared as much as you do richie, but the way I am now, I’ll never have a life. I live at home with my parents and I’m 29. Nobody wants a girlfriend who can’t even drive.

CrystalFebruary 19th, 2011 at 12:43 am

Richie: You might want to inform her that ECT COULD make her more dependent on you considering it often come with marked memory loss and that might make her feel more guilty. Also you said doctor of 15 years you might need a a new set of eyes. My psychologist suggested a specialist in the area. I don’t know where you are from but the specialist is Dr. Steven Dubovsky, MD of Buffalo, NY. You can Google him if you want and maybe their office can suggest someone in your area that can give you an more expert set of eyes. He was a psychiatrist that only did consults and would spend one hour with you and then send you a report to you and your doctors. I thought one hour what will that accomplish? Surprisingly in one hour he managed to get basically my whole story about me and recommend several courses of action involving different meds some not as commonly used and of course continuing talk therapy. He was more of a researcher and I think that why he only consults because if actually gives him time to look at alternative therapies rather then just keep prescribing the newest drug on the market which they don’t know enough info about. I’ve been deemed by many doctors a “complicated case” and so sometimes they tell me I got to roll in the heavy artillery. It did cost me $350 dollar for that visit because he didn’t accept insurance but they did submit the bill to my insurance anyway and months later I got reimbursed everything but a $20 copay. Even if I wasn’t reimbursed I would say it was worth it. Because of his conclusions I found a drug regimen that keeps me half stable. I myself am kind of in waiting pattern right now with adding new medication there is nothing on the market that helps beyond what I’m on and I’ve told my doc straight out “your out of ideas and don’t know what to do with me” he basically admits it and well I just keep pushing myself to work harder at talk therapy until I get somewhere or there are new medication breakthroughs. Also 9 meds seems to be a bit excessive you got to be careful that they are not crashing into one another. I’ve basically through my life have had to become an expert at researching medications because I find doctors don’t often have the time to read the fine print. If you would like some sites that are good to look up meds and interaction just let me know.

CrystalFebruary 19th, 2011 at 1:26 am

Jessie: Thank you for telling your story. I greatly sympathize with you because are stories are similar and I am a 29 year year old single female. Things are bad for you I’m not gonna sugar coat it. However even though I hate this statement a lot of what I hear from you is the depression talking. You feel hopeless, helpless, and worthless because you don’t see any road to improvement I get that. I’ve been there. You are however not too far gone because you came here and posted your story. I think that’s part of healing talking with others that have had similar problems and letting our story out. It might help others but I think it helps us inside. The huge memory problems that you are experiencing there is a way to improve some of it. I have noticed the similarities between the problems after ECT and brain injury. They key is cognitive impairment. Now for people with brain injury they have places for cognitive rehab and neuropsychologists to diagnose how much of your memory is shot and how much you can recover. Unfortunately insurance wont pay for such things for people like us they will pay to screw you up but not to help you and I’m told testing alone is extremely expensive. However if you can grab the wheel and start taking control of little things in your life you can play your own cognitive rehab games and things do start getting better. Not to mention use little tips, tricks, and tools so that you feel that you can function in everyday life. I know it sounds stupid but start off journaling even if it starts with you just writing down each day life sucks. Do it enough times it eventually you get sick of witting it and move on to what happened in the day even if it was noting or great then some feeling slip in also it serves to help your memory its good to know what happened yesterday so today turn to yesterdays page and read it. After you got the journaling going start trying to read more. I know this killed me. Start small. Poems short stories, an article in the paper and them work up. Its killed me because I worked up to a book I really wanted to read its about 600 pages. Well i started reading it I had to read each page 6-10 times because I didn’t remember what I read at the beginning of the page. I’ve been working on it and I’m half way through it now and there was actually a group of 30 pages I only had to read once. I know it sounds silly but that was a great accomplishment for me. I find you got to constantly push yourself to use your brain because the more you don’t use it the more it doesn’t work. I know its a slow progress thing and not an overnight cure and the depression doesn’t help motivate you but if you want change you got to fight for it. I know its hard enough fighting to stay alive with depression but you sound like you want a life with people that care about you, maybe a boyfriend and being able to function in society and hell maybe be able to drive again. Hell get yourself back in your head again and maybe all you’ll need is a GPS to find your way back home. God knows I use mine enough to get places I’ve been a hundered times. You can take my advice or throw it in the trash. Either way I want you to know there are always options, always different paths and if you don’t see one you like create your own. If you want to talk I watch the board pretty carefully as you can see all my posts. Either post something or my email addy is in of my few prior posts. Things can get better!
With hope,
Crystal

richieFebruary 19th, 2011 at 8:30 am

so its basicly not true that they take you off your meds after the ect. I think i could deal with the memory loss but from all thr posts ive read i feel more hesitant then i did before
I have written permission to talk to her doctors, now I have more info to grill him about. the first thing hee says when she goes into the office is are you ready for ect.

CrystalFebruary 20th, 2011 at 7:41 pm

Richie: They may take her off some or all her meds before and during the procedure. Especially if she is on anything that is an anticonvulsanlt because it would counteract what they are trying to do which is basically put her under anesthesia so that they can electrically induce a seizure. Which is why afterward your body usually feels real soar an tired. I think they took my friend off her one anticonvulsant for two weeks before the procedure. Which I know it was hard on her being off her meds for that amount of time. Other psych meds if they decide to take her off cold turkey and not ween her off of them you might want to look up yourself online or question your doctor if its a drug that it is safe to be just taken off of or if its necessary to ween her off. Sometimes just completely stop taking certain medication you can go through severe withdrawal and it can be dangerous. (I’ve noticed that some doctors don’t tend to pay attention to this or just don’t care) My own experience I never got the better feeling during the weeks I had received ECT I was just a miserable zombie but I know people that during the time they were having the treatments felt a lot less depressed. However its seems that two to six weeks after with the people I talked to they fell back into to depression and were on put on or asked to be put on meds again. I was immediately put on more meds than what I was on after the treatments.
And Richie as a side note I know you say you can deal with the memory loss but the question really is can she? I know I’m an extreme case but I didn’t lose just some short term memory. I lost short term memory as in the time before the ECT also short term memory as in 5 years after ECT you tell me something now and 15 minutes from now I won’t remember what you told me or else I wrote it down and I lost chunks of my past and not the bad ones. I forgot people that I had 2-3 year relationships with I had to re get to know them. That’s difficult and I know the memory loss after ECT actually increased my depression. I’m not saying don’t have your wife do it I’m saying make sure she knows what can happen and is still willing. As I said before once you do it there is no coming back. It could be change for the better or change for the worse but you can’t afterward change what it did in your head. You can try to rebuild but your still changed as far as I see it. If you need or want more input ya know I’m around here or at my email.
With hope,
Crystal

CrystalFebruary 20th, 2011 at 8:00 pm

P.S. – the doctor aggravates me, well most do but “are you ready for ECT?” the first thing you hit the door. He’s basically trying to force her hand by not discussing where she is and other options along with ECT. I don’t think anyone is ever “ready for ECT” I think people are desperate or feel desperate and doctors push them along the way because they no longer know what to do or because its a big money maker for the medical community. I feel they almost prey on people that are in to bad of a spot to make their own logical decision so that we just give in to it and yet we have to go through it and face the end result…sorry rambling as usual

richieFebruary 21st, 2011 at 7:41 am

basicly its sort of her fault to. she will walk into the office and ask to be taken off all her meds. she has a ligitamate aregument. if shes med resistant why is she on so many meds. he thinks she needs cognitive theropy which no one does here, the other day she wanted to pack up and go and im the one who is now against it. I cant even get her to read about it, another words her doctor feels bad for her. she has been to alot of good people for talk theropy for so many years.

CrystalFebruary 21st, 2011 at 9:22 am

Richie: She is probably not completely med resistant. As I said before though I think 9 meds is a bit excessive. I also think it would be irresponsible to take her off all meds at once. My doctor’s policy with me because I was on so many meds so long is to keep me on the minimal amount of meds that I can function on. Part of the reason she might need cognitive therapy could be because shes to much wrecked in the head with all the meds and their terrible side effects. If she really wants off them tell her to do it the smart way and go one meds at a time weening off and see how she feels without that med. Of course have the doctor come up with a weening schedule. Therefore you know for sure if each med is doing anything. Yet again under doctor supervision not just dumping pills down the toilet going cold turkey like I thought I could in the past. Did he say why he thinks she needs cognitive therapy? Has she had brain injury in the past? Did he explain what it is and what it can do for her? Did he mention seeing a neuropsychologist to go for testing to see how much and to what extent therapy is needed? Also there are cognitive therapy things that one can do at home. Especially when you have someone supporting them. It’s hard work though. Has your wife talked at all to people in similar positions? I’m not talking group therapy at some hospital but someone out in the real world that understands partly what she is going though? does she have someone understanding to talk to apart from you and doctors? You seem like you are highly overly stressed about this and don’t know the right course of action. Don’t forget to take an hour here or an hour there to de-stress a little and take care of yourself for the both of you. Also if your wife would like to talk to someone that partly understands where she is coming from or even if you need to talk…I’m not a doctor or a counselor but I’m a person that has quite the bit of experience with these sort of things. If this would be helpful email me my email is listed in the previous posts a few times and we can arrange to talk.
With hope,
Crystal

richieFebruary 28th, 2011 at 7:32 am

my wife says shes ready to do it even thuogh im still not sure. Im going to set up a meeting with her doctor and discuss further. we cant go like we are fore ever. we could have bought a house on what we spent on meds and doctors. that aside what other options are there. i dont want to come home to a dead wife some day.

CrystalFebruary 28th, 2011 at 8:24 am

Richie: Well I hope you guys make the right decision for you. If she does go through with it I recommend she journals daily starting immediately and going through the entire process she will appreciate it later on when her memory is effected. Just a tip. Also I would suggest that she be closely watched during the treatments and for a good at least 4 weeks after (if there is any access to a car I would take it away). Also I recommend that you keep pushing her mind while its going on so it doesn’t completely zombify her brain (even if its asking simple questions like what did you eat for lunch yesterday or to finish a lyric of a favorite song). You know I’m around if you need advice or just need to talk. I wish you all the best.
With hope,
Crystal

Sherry SuttonMarch 7th, 2011 at 11:34 am

Well where do I begin. I have had, in my lifetime, two series of ECT’s. The total number of treatments is unknown to me. For some reason I believe it to be over 50. The first set of ECT’s were done in 1983.The second series was done around the year 2000.The last series was due to another rash of suicide attempts. I don’t really know what was going on in my life but I do know I no longer have memories of so much of my life. I also have a difficult time creating and keeping memories of my present life.Prior to the first series, I had had a baby in October of 1982. I was experiencing severe depression and had tried to commit suicide too many times to count. I was in and out of hospitals for suicide attempts. I don’t know who suggested the ECT’s or who approved of them. What I do know is that my son was given up for adoption during that time and I tried to get him back but to no avail. I know this next statement will sound paranoid to everyone but here goes, I believe my psychiatrist Dr. Rahmani (not sure if that is the correct spelling) has my son. The circumstances were that he insisted I sign the adoption papers and he ordered the ECT’s for me after undergoing the teatments he stated I would not get better until I signed so I did. I tried to take my life the day I had to physically hand Jeremiah over to someone. My attempt took place in the hospital. The morning of handing him over I was transferred to the unlocked ward I left the hospital without anyones knowledge and bought some illegal drugs. I came back to the hospital, although I don’t know why, and I took 100 black beauty pills. They pumped my stomache, my mother brought my son to the hospital I spent a couple of hours with him and then a man and woman came and took him. My memories past and present are all screwed up. I am currently on social security disability. I have been since I don’t know when. My personality is all screwed up. Although I may appear OK to many people. I am going to graduate with a BA in psychology on June 4, 2011. I realize that that probably makes many believe that I am OK. However, the first 2 years of my education took many years to accomplish. The last 2 years I have been taking nearly all psychology courses that require alot of writing and research reports in order to pass. NO EXAMS have been required that weren’t takehome. Because they were takehome and I had the ability to work on them for several days and sometimes weeks I have been able to complete them and receive A’s. By all appearances I think I appear to be “normal”. Although, I know I am not. My train of thought doesn’t last long. I am terrified of my approaching graduation date and social security now wants to evaluate me to see if I still need the assistance. Even though I have passed the courses (except for three which I am enrolled in and begin on March 14,2011) I am not sure I can join the workforce. I don’t tell people about my history I am ashamed. I don’t associate with anyone outside of class. I hate to get involved in a conversation with anyone because I can’t keep my train of thought. Writing, like this, is helpful because I can look up to see what the hell it is that I am talking about. But, that isn’t how life works. On paper I can go back and correct any mistakes or even, sometimes, pick back up where I left off and correct any mistakes but in a conversation I am easily lost. Not always but enough that I don’t know how I can ever hold done a job that could support me. My entire purpose of getting an education in psychology is to HELP ME. I want to fix me, so far I haven’t figured out how to.

CrystalMarch 7th, 2011 at 1:34 pm

Sherry,
It sounds like you have been through one hell of an ordeal. No one should be put through that. I’m highly impressed that you are getting your BA in psychology. That is absolutely awesome that you are pushing through all the cognitive problems that the amount of ECT you had must have caused. I myself have thought about going back to college for psychology just to learn more about my own problems. However I have decided that going back to school is too much at this time. I also completely understand that people look at you and think that you are just fine and yet in your head sometimes your not even in your own conversation. I find the more I push myself to read and write I see little improvements. you said in your final line “I want to fix me.” I have often felt like this but I was taught long ago that certain words trigger other ideas. Saying that we want to fix ourselves implies that we are broken which is another word I use to describe myself. However when I grasp some perspective I’m not broken…I have/have been changed or altered and the only thing I can do is accept the change and find solutions and work arounds and try to better myself. If we were talking about cars we could say we can fix them or bring them back to there original shape with people you really can’t do that. You obviously are doing a great job at trying to help yourself with the schooling and all. take some time and be proud of that. I know its always still a long road ahead.
With Hope,
Crystal

HopeMarch 8th, 2011 at 5:00 pm

Good evening Crystal, Sherrie and richie…and the others…Fiona, Ann, Erin, Mary, Susanna, Jesie…I am Hope and write on behalf of my 39 yr old daughter Kirsten. She has bi-polar in her paternal side of her family. aher paternal grandmother had a dozen children and she and two sons and a daughter developed this from Gradma Juliette. To date Kenny has committed suicide and Peggy got involved with some people(we don’t know who but understand they are big people in town. Peggy was found in the back of her burned out hatchback car around Thanksgiving 1989 while my daughter Kirsten was in college. Her Dad, Bruce, my ex husband, passed away this past March with a lot of complications with his health..emphasema tho he never smoked(was a mechanic and those were honest auto fumes)…we found out that mental illness was NOT a mental ilness but a chemical illness when Kirsten was 2 1/2 years old and I was pregnant w/our son.

I won’t go into details..y’all know there’s a million stories on this in the Universe…worst was that Kirsty started exhibitin’ symptons while in college in the 90′s…I had divorced her dad by then but always in the back of my mind I thought she would inherit the family scews

Can’t say I was happy to be correct…so we’ve been workin’ with this medicine for almost 15 yrs now…and Kirsten did well despite goin’ from manic depressive to bi-polar and psycho-mania and now they think she would do well on ECT….

Her meds of Depacokte and Seroquel and clonipin had been doin’ very well for her until May when her Dad passed away…he was a great support to her as is her brother Jason…who moved to a different place in the country w/his family in June….so..she’s lost two of her 3 main supports(me bein’ on of three) and her youngest brother who is thirty is becomin’ a close-by support system now…

Since Thanksgivin’ and Christmas and all the usual depressive holidays they talk of Kirsten was manic and so signed herself in in early Dec in crisis…they kept her a bare week and sent her home w/some other meds…she didn’t last much past New Year and signed herself into the Capitol Hospital in our state w/ a better program…she was there for almost four weeks…she’s been home since the end of January and has been goin’ to church and not wantin’ the meds to push her down to the comatose state/very aptly here described as Zombie…
she had a meltdown on someone’s private property(people she knows) and so the ambulance brought her there this past Sat aft. March 5th, ;11.

Yesterday her social worker and two dr. team had decided that her meds were not as effective any longer and suggest we do ECT and so theres is where I begin my quest for information….I have fibromyalgia and use a tesn unit to increas electrical activity in my muscles but I am guessin’ this is at a much more electical level as my tens unit….

I’m also findin’ people who say that doin’ one side of the brain is better that doin’ both sides…and I’m mostly concerned that they want to start treatments this Friday…
Kirsten is in no shape to make this kind of a decision…she can’t stay awake long enough to look it up if she had a computer there to do it. Som my sons and I are runnin’ this down and I must say I was lucky to find this palace with so many yeas and neas…thanks Juli…

I’m thinkin’ right now that we should postpone ECT until my daughter is a bit more cognazent of her pros and cons…she is after all 39 yrs old and does want to settle down and have a family but, as you all know, feels stigmatized by this whole ilness.

She is SSD and so has time to make a considered opinion. What do you think of this? Any inoput greatly apprieciated….

With Crystal Clarity,
Hope

CrystalMarch 17th, 2011 at 5:34 pm

Dear Hope,
Sorry it took me so long to jump in. I usually watch the discussion board pretty closely hence all my posts. I have to admit that my head isn’t on quite enough so I didn’t quite get all the family details despite reading it 6 times. I did hear mental illness, dealing with loss, and not having quite the support one needs. My personal opinion is to steer away from ECT. Especially if she isn’t cognizant enough to have all the pros and cons to make her own decision on it. Once you do it you can’t go back you are changed. It’s not like a pill which you have a bad reaction you can stop taking and dump the rest down the toilet. I haven’t talked to many people that it has actually really helped. I hear either horror stories like my own or I hear people say “well it helped while I was getting the treatments and two weeks after but then I went back to how I was before but worse because of the memory problems” In any case if she doesn’t have a strong support system that can be constantly around her during and after ECT I think it is making a reckless decision. The doctor’s don’t seem to tell you what you need to know to be prepared for what might happen after they shock your brain with electricity. I’ve been on basically every medication in the book and some that are just hitting the books. I however found that going to a specialist in the area I got pointed to a pretty decent combination of meds and dosages that well keep me partially stable. It took a lot of playing around with the meds though under Doc’s supervision of course. The meds are often walking a fine line between being therapeutic and causing other problems, so you have to be diligent on doing your own research. Another part that keeps me going is talk therapy which I make sure I’m there once every other week. It is a significant part of keeping me alive. ECT did nothing for me but anger me and set me back hugely causing worse mental problems. You also mention the loss of a family member (my sympathies) I lost my mom to cancer at 17years old. The only thing besides learning to grieve/morn and talk about it that will help is time. I don’t know the situation but I would be careful of going the ECT route so soon after someone has lost someone. ECT can cause all kinds of memories to be lost. It’s hard enough losing someone but when you lose chunks of the good memories with them its even more depressing and unbearable. If you want more of my story you can just read all my posts if you still want more info on my experience with ECT or bipolar disorder feel free to email me which you can find my email address in prior posts or just post here again.
With hope,
Crystal

CatherineMarch 30th, 2011 at 7:29 am

Mine is all positive, Ive had about 50 ECTs over the past 10 years for bipolar 1 and I believe I would not be here without them. Done in a private hospital(Australia) by my wonderful psychiatrist Im now about to start maintenance brief pulse bifrontals. I am a 51 year old RN, work full time and have 3 beautiful sons and 4 grandchildren. Also happily married 29 years. I lead a full and rewarding life, ECT CAN be a lifesaver.

richieMarch 30th, 2011 at 8:22 am

I have a sit in appt with my wifes psy dr. first of all , now that medicare put her on generic drugs she seems to me that she is getting worse, the klon is generic, the effex er is generic
as well as the other junk. so friday is my day to give him my input into what I know he is going to say that ect is the only thing left he can think of. my wife basicly does not care because she thinks it will make everyone happy. give me the white light and if it doesnt work she is just going to pack it in. right now we have to file chapter 7 because of all the money we spent on meds and treatment, not a fun time for either of us. what questions would you advise me to ask him. richie

CrystalMarch 30th, 2011 at 6:01 pm

Catherine: I’m so glad that ECT was a lifesaver for you and hope that you continue to lead your full and rewarding life with lots of happiness. :)

Richie: I’m not sure of medicare practices and I could be completely wrong but I believe that if the doctor believes that the generic is not working as well as the original then all he should have to do is write D.A.W.(Dispense As Written) on the script and the pharmacy has to fill it with actual prescription rather than the generic I however don’t know if medicare then will pay for it but you might want to question it.

As far as questions you might want to ask:
You might want to ask if there are any psychiatrists in the area that specialize in “complicated/difficult cases” that he could refer her to for a consult. Just because sometime a new pair of eyes especially a specialist might come up with a different medication combination or using medication that’s not typically used but can be a benefit to a patient.

As far as ECT if your really considering it: You probably want to ask him about all the details of what would exactly would happen:
Would she be taken off her medication? Would she be weened off of her medication or would he just stop it? With certain medications just stopping them can be very dangerous is this the case with any of her meds? How long she would have to be off of the medication before they could start the ECT? Would she be doing the ECT inpatient or outpatient? My personal recommendation is if someone can’t be with her 24/7 during treatment its better to do inpatient. If inpatient would she be hospitalized when/if they take her off certain meds when they start taking her off them or would it be right before the ECT that she was hospitalized? Do they do the testing(example the EKG) and blood work before hospitalization or while she’s there? Is her psychiatrist going to be preforming the ECT or is it a Different doctor? If it is different doctor you might want to ask if you can meet with the other doctor to walk you through how things will go step by step? You also may want to look up the different doctor if there is one online see if there is a good reputation and credentials and find out how many ECT procedures he preformed? You might want to ask rough percentages of how many patients have had complications or long term side effects that and what they were? Ask how many treatments your wife would have to start? I think its usually standard to do 6 treatments over the course of two weeks. I would ask that after the initial suggested treatments how do they decide if she needs more or not, considering she might be what I called zombified. If the initial treatments don’t work do they continue giving treatments and to what point do they stop? If given more treatments how much more risk of side effects like permanent memory loss? I’m not sure of her age but I have read articles that in older patients given ECT there can be damage to the blood brain barrier which can end up being fatal is there any chance of this? After ECT is she going to put right back on medications and if so would they put her on the same medications she was on or would they wait and see what they think she needs after that? I’ve often heard in people that ECT did some good that the effects of the good start to wear off anywhere from 2-6 weeks after treatment has ended if she reaches that point what is done more medication or bring her back for what they call maintenance treatments? People that do come back for these maintenance treatments how often and how many are given? If it turns into the fact that she has to have a numerous amount of treatments how much of a risk are you taking given her health (which I have no info on) going under anesthesia so many times? I’d also ask that if inpatient if she responded to the treatments what they considered well do they release her home right after her last scheduled treatment or is she observed for a while before she is released to go home? If for some reason (which I pray this wouldn’t happen) the treatments don’t seem to work and like in my case it’s affecting her long term memory, short term memory, and cognitive abilities and you two decide to stop them what would the doctor propose considering the loss of part of your memories cognitive abilities can be devastating as it is but how would he help her get through that added on to the depression she ready has?
Ok well I thew bunch of questions out there that just popped into my head some you may want to ask some may just be me. If I think of any more questions that might help I’ll try to post them before Friday. I’m sorry to hear that your incurring such a financial burden due to medical expenses I really understand how difficult it can be. In any case I will keep you two in my thoughts and my prayers.
With hope,
Crystal

CrystalMarch 30th, 2011 at 6:11 pm

Juli,
For some reason I’m no longer getting email notifications when there are new posts here. I went to the manage your subscription link and everything looked like it was set up OK. Did I do something wrong or is everyone just sick of my long posts? :) Is there anything I can do to fix it that I get email notifications when there are new posts?
Thanks in advance,
Crystal

CrystalMarch 30th, 2011 at 6:16 pm

Juli,
Never mind sorry I just realized it was my spam filters I don’t know why they suddenly decided to change them self but its all good sorry for the post just temporarily brain in space.
Thank anyways,
Crystal

richieMarch 30th, 2011 at 8:41 pm

thanx, those were some good questions. I read the letter to my wife. she is sared about the memory loss, especialy since she has bad driving anx. she also wants to aks him if hes just given up after 17 years of drugs and theropy. she qiut seeing her theripist this week
because she does not to get to see her more then once a week. I think thats a good idea myself. for years before she would see someone else two to three times a week. that didnt work either. I guess you can see where alot of bucks went. she feels guilty for that. Ive just gotten so used to taking care of everything, and wonder if she married someone with money she might be in better health. I live in a small cottage in sah harbor long Island and there is enough money out here. but she actuallly doesnt like the summer here. thanx richie

CrystalMarch 31st, 2011 at 9:12 am

Richie,
If she does decide to go through with the ECT and she is home right after I’d make sure I take away all the car keys from her reach. I walked into ECT thinking that I could check myself in do my two weeks and then resume normal life. BIG MISTAKE! I own my own home live alone. No one watched me when I was done. It would be afternoon and I’d find myself in a parking lot somewhere not knowing how I got there or even where I was. I would apparently get in the car and just drive. It would scare the hell out of me a couple of times if it wasn’t for the fact that I usually have my GPS in the car I don’t know how I would have got home because I didn’t know where I was. I could never make it from point A to point B without missing a turn at least once and these are streets that I grew up on and drove my entire life. I don’t recommend driving for at least a few weeks after having treatment but that is me and similar to a few other people that I’ve talked to. If she does decide to go through with it if you let me know if you want the help I’ll give you a bunch of pointers for things she should do before, during, and, after it to help keep her head together I actually have a list laying around here somewhere. I helped a good friend’s girlfriend who is actually now a good friend go through ECT back in January hence my first post on this board. I’m personally not pro ECT but I feel that having been through it and seen the bad side I can at least turn it into something positive by trying just to inform other of things I didn’t know when I was basically hugely suicidal and pushed into it by my doctor telling me it was “my last hope” I still feel swindled and lied to so I feel the least I can do is give others my story so if they decide to go through with it they don’t feel like they were lied to and have huge anger issues on top of whatever ECT does or doesn’t for them.
You know after 17 years the doctor may just not know what to do anymore. Hell my current psychiatrist basically admits that he doesn’t know what to do anymore that we have tried everything and so i figured out which meds work for me and he basically listens to my opinion on things and sides with me because I’ve become my own advocate basically. When I’m unsure of what move to make I always ask him if I was a close loved family member what would he tell me to do? And he actually sits back and thinks a bit differently for a minute and answers. I’m at the point where life is really rough and I can only get enough out of medications to keep me from being hospitalized. So I’m in a holding pattern waiting for new medications to come on the market but i refuse to take a new medication until it’s at least been out on the market for a year and I know what side effects people claim to have had. Meanwhile i go to a psychologist every other week. I find that if I”m not truly ready myself to do some real work on myself the minute I enter the door then the session doesn’t accomplish anything. I now find myself the night before I have to go I take several hours out of my night to write in my journal and that helps me focus on what I want to deal with in therapy the next day I actually bring my journal in so if I get stuck it is there as a backup and also it is there if my doc says something useful i can write it down so i won’t forget it because my memory is so bad still from the ECT. Even though I’m all for psychology it has kept me going I feel that finding people that have similar problems as I do and talking to them can often be extremely helpful because the other person actually knows how it feels to be in that position where as docs only read about it in some text book at school. I have a bunch of friends that have been through similar experiences and have bipolar disorder like me and have found them to be invaluable there is no once a week 45 minute session time limit with them its when you need someone to talk to and the length of time you need to talk for and free of cost because it benefits both parties. As for her feeling guilty I think a lot of people do feel that way because we feel like we are a burden and that it is our fault. I think we just need to be constantly reminded that we didn’t choose to wake up and be a mental mess it wasn’t our bad choice it is a medical disorder and we can’t flip a switch to fix it but we can say we fought with everything we have to come back to “normal”. It is not our fault that medicine and science hasn’t come up with a solution that will really make us feel better without the crazy side effects or dangerous consequences as they play guinea pigs with us. And as for you from how you come off as the sweet loving husband concerned for your wife’s well being and wanting better for her and sticking by her side I guarantee she is much better off with you than some rich man that yeah might throw money at the doctors and say fix her but that doesn’t always work and well throwing money at a situation doesn’t always make it better. So I hope that you can stop thinking that way because she has a husband that has love and concern for her I don’t think one can ask much more in a man you guys are lucky to have each other. I understand it makes the financial situation tough ok near impossible but you do what you can do to get by at least that what I try to do.
With hope,
Crystal

Dean M.March 31st, 2011 at 2:06 pm

Thank you for this site. I suffer from mental health issues and, despite the fact that I can navigate through life adequately, I am constantly told that I ‘need help’. Their reactions are actually quite laughable considering that I’m not a danger to myself or others, excepting the fact that I can be forced into treatment if the critics push their argument too far. It scares me to think that I could be forced into ECT without my own consent. Thank you for fighting this fight for all of us that could be effected by it, regardless of whether we realize it or not.

CrystalMarch 31st, 2011 at 3:11 pm

Dean,
I completely agree with you on the thank you for this site comment. I’m grateful I found this site. I’m sorry to hear that you also suffer from mental health issues but I’m glad that you manage to “navigate through life adequately” and aren’t being pushed into ECT now. I wish you luck on your path.
with hope,
Crystal

richieApril 1st, 2011 at 8:50 am

thtnk you for all your posts, today is the day to consult the ect.. crystal, thanx for all the advise. by the way the generic meds she now has to take are banned from medicare.
there are no exceptions for klonopin. benzodiazipine is not allowed which she has been taken for 17 years. some of the others she was given an exemtion for the generic. as most of you know alot of psy meds dont work the same as daw. its almost being forced ect but im going to hit him hard with questions. and ask him for a new set of eyes to see if they agree. sometimes i hate that little voice in my head. but the thought of loseing her to souicide would also rock my world. i feel like im in a loose loose situation, my wife also has a semi photo memory which she is proud of. we havent had much good times in the last couple of years. if we do it the loss of those memorys i dont think she will miss. thanx, im out the door. richie

CrystalApril 1st, 2011 at 3:04 pm

Richie,
I hope you got some questions answered today at the doctors. If you or your wife need to vent, talk, or if I can do any thing else to be of any help just keep posting I’ll be around.
With hope,
Crystal

richieApril 1st, 2011 at 9:29 pm

we decided not to go with the ect. I asked the doctor if he has given up on my wife and weather there is hope. after many questions we decided that we should try some intense cognative theropy. she is not completly med resistant but he would have hoped to see her further along then she is. we changed the meds a bit to make up for what he calls shity gereric sup meds that the law makes him to perscribe because of her ssi. Im sort of happy with the outcome , but is is interesting to read the posts where ect has change there lives for the better. at last that is off my mind for me for a while. im off to bed, thanx richie

FionaApril 2nd, 2011 at 9:02 pm

After following this site for a while now I feel it is time to add another comment. I have stated on prvious posts that I do suffer some pretty major memory issues. This is of course not nice to deal with, but I generally get on with life quite well. I try to make light of it by laughing at the fact that I can watch a movie I have seen before and enjoy it all over again, as the end will still be a surprise. It seems I do not forget anything that is major, birthdays, anniversaries, and other important things. If someone mentions a particular occasion such as a day at the beach we lost a towel (for example) these are the things I often don’t recall. What I feel is more important to say is although I do have a few “issues” I do believe ECT saved my life. A pretty drastic statement but one that my husband and family support. It is important for a site such as this be open to all sides which gladly it is. I am not pushing for any particular agenda for or against ECT, I still don’t know where I truly stand on the issue of this treatment. I am currently on meds that seem to be okay, but I had been well enough to also have long periods totally med free. There are always going to be different opinions, mine of course just a drop in the ocean..

CrystalApril 10th, 2011 at 8:44 pm

Richie,
Thanks for the update. It’s always good to hear back from people you have interacted with. I’m glad you are “sort of happy with the outcome” I wish you and your wife the best.

Fiona,
I’m glad that as you say ECT saved your life. It is always good to hear that someone is doing well. It also gives hope ECT or no ECT to those of us that aren’t currently doing well that things can turn around for the better.

With hope,
Crystal

Aubigne SpratlingMay 30th, 2011 at 5:50 am

This is absolutely terrifying. My heart goes out to everyone that’s had this procedure done; I can’t imagine how you suffer, although I’ve experienced similar symptomology from a good old-fashioned matrilineal complex migraine condition. I can’t imagine someone having to be willing to undergo something that would bring such things about.

That’s why I’ve written about it.

I’m a transgressive fiction author with an upcoming project in which the first novel of the series, (indeed touched upon in the audio drama series to launch this year) focuses heavily on living, struggling, and surviving mental illness – and more than anything, treatment for it. I remember my co-star reading some of that prose not so long ago (to gain a better handle on his character) and being just horrified. I studied psychology with a concentration in forensic and abnormal, so I knew, sadly, what to write. ‘People still DO that?’ he said to me, blanching. I nodded. ‘While everyone’s being told it’s not like ‘Cuckoo’s Nest’ anymore, it seems to be that the symptoms and the side effects remain the same. He said he’d have to research himself; not that he didn’t believe me, he was just having such a difficult time accepting it as true.

It’s particularly horrifying, I feel, when kids are involved, as is done in my series. Kids, obviously, are entirely under the instruction of their parents (or legal guardians) and if they decide upon the treatment – and the child has not, being a minor with no rights yet – guess what? That kind of true horror is enough to send anyone into convulsions – pun intended.

So, you might say, while it’s a bit of an activist works in various areas, (criminal reform, the mental health field in general, a criticism of the rampant powers of the U.S. intelligence circuit, the perceptions of and labelling involved in various psychiatric disorders) the most super-charged at the moment, is the brutality and sheer barbarism of ECT – and not only how it’s offered as an option to adults, but kids are thrown into it by their well-meaning parents who have NO idea how they’ve placed their offspring into the hands of Dr Frankenstein.

I know; I’d think that’d be hyperbolic, but after reading some of these personal accounts on this website – I know it’s not, and it honestly fuels me further.

Alas, it’s been long enough since I graduated college that I don’t have the history of ECT at my ready disposal anymore, and I would especially appreciate and value more than you know, any information about how it was used in the ’80s-’90s – specifically in hospitals in the D.C. metroplex, where it was administred to kids. (I believe now that may no longer be legal, but I haven’t researched it just yet, I’m sorry to say. I need to.)

Okay, that being said – again, I’m horrified by what you’ve all had to endure and I wish you the best on your own roads to recovery.

We really, really, REALLY need to get the word out about how times haven’t changed – we’ve just become more willing to blatantly lie.

It’s the new millennium, for chrissake. That has to stop.

CrystalMay 30th, 2011 at 1:30 pm

Help please. Every time I try to access ect.org its covered with viagara information I was only allowed to get to this page because of the last post showed up in my email and the link got me here. Does anyone know why this is happening or if there is anything I can do to fix it?
With hope,
Crystal

ingridJune 2nd, 2011 at 12:51 pm

I posted a comment a few days ago but now it’s gone!! What happened to it??? I asked if other people have had problems with migraines and tinnitus? I had 7-8 ECT treatments in July’09 and since then have developed headaches and tinnitus which have grown worse over time. I am at a point where I am barely functioning. I spend my time curled up in pain. I have been to a pain specialist and a neurologist who specializes in headaches. Neither one of them will confirm or deny that ECT could have triggered these symptoms. At the time of the ECT I was so depressed that I felt I had no alternatives as I had tried every med and had no success. I thought how much worse could it get!! Now I wish that I had a little more support and therapy from the doctors. I thought I had done alot of research into ECT and felt that I covered the bases. The memory loss – well yes I have short term stuff going on – trying to remember something and then 2 seconds later I draw a blank. Cognitive stuff also is a challenge. Basic math – which I use to be a whiz at – now takes time. Writing – mixing up letters is common. Anybody out there with similar stuff?? And if so how are you coping??
Ingrid

CrystalJune 2nd, 2011 at 6:55 pm

Ingrid,
I think the site has been acting weird. Um I’m quite the frequent poster so if you want parts of my story just read my above posts they start at like the beginning of the board or feel free to email me which well my email addy is in the posts a couple times just put ECT in the subject. First off, I think doctors wont confirm or deny anything when it comes to ECT because they really don’t know enough about it(my opinion). I don’t know if my story helps at all but I was a frequent migraine sufferer to begin with that the only thing that would help them was prescribed narcotics. I was in and out of the emergency rooms because nothing would help my migraines and the pain would get so bad I would just throw up till I was completely dehydrated and even then if there was a bit of stomach acid left it would come up. I keep a phone in the bathroom so I can call my father to peel me off the floor and get me to the hospital. Now I didn’t think ECT would have affected this but after the first treatment. I woke up in excruciating pain, the light, the sound, omg my head it was full blown migraine. I couldn’t take the pain so much I puked in a bucket for over an hour. The only thing offered for the pain was a Tylenol, which I refused why take something that doesn’t work. I asked for my prescribed narcotics for migraines and was denied. I couldn’t even stand up they wheeled me back to my room and dumped me in bed. I thought I’d die that night so much pain. The migraine continued the next day and well frankly I stayed in bed a zombie with tears running down my cheek because I could even handle the sounds of my own crying. It came to the next day that I was to have ECT. I was too out of it to ask the doctor if this could happen again. I was just blindly doing what I was told. Same thing happened but worse. They did however give me an anti-nausea pill, how sweet of them, but this was already after I started throwing up so she mine as well just threw it in the bucket. This time even though it was killing my head I started screaming at them can’t they give me anything worth while it’s not like I’m asking for anything I’m not already prescribed. I made a huge fuss even though doing so was making my head worse. The best they could come up with a few hours after I stopped puking was a Tylenol and a sleeping pill. It half knocked me out but I was in too much pain. Round 3 was basically round 2 repeated. Still having a small migraine the next day. I tried to pull myself together and demanded to see the doctor. I asked him if this was going to happen every time I had a treatment. I got the answer back “we don’t know it could just be coincidence”. I thought yeah coincidence, every time you mess with my head and electricity I get a migraine, yeah that sounds right. So I tried to keep my sarcasm an anger to myself and asked why he couldn’t give me my prescribed meds if I get a migraine again of course by coincidence. He danced around the subject but assured me that there would be higher dose medication by my bedside when I woke up next time. He was talking in circles and I was barely keeping it together so I thought I gained something so I agreed. I was too groggy to ask what medication. So round 4 wake up killer migraine and did have meds for me right away but they were nowhere near strong enough. I however convinced myself dying of pain ok, they gave me meds this must be better. Yeah right, I asked for a sleeping pill curled on my bed silently begging the pain to stop and stayed in the rest of that day and then the next. So they take me up for round 5 . Same thing happened but the pills they gave me didn’t touch the pain. I really couldn’t deal. If there was something to kill myself there I would off the pain was to intense. So I’m trying to calm down and do what I do at home when I get migraines. I usually in my little ritual put an ice back under my neck. I Asked the nurse for an ice pack. So completely denied me. I pleaded for even ice wrapped in a towel. She said no. This was my breaking point. I screamed at her that I better have an appointment with the doctor first thing tomorrow morning or I’m going find a way to make it her job. Apparently that threat worked. I suffered through the night but first thing in the morning the doctor wanted to see me. I stayed calm at first but it was only my anger driving me. I can’t deal with people being treated unfair especially when they are to hurt to stand up for themselves. I calmly explained everything to the doctor even the fact that I was denied ice when I was in that much pain. He cared very little. I asked what was going to be done about this he said nothing your going to finish your treatments. Yeah talk about set me off. “Nothing! You’re cruel, sick, and sadistic to watch someone go through this kind of pain oh wait you don’t even watch you run back to you office. I’m signing myself out your not hurting me anymore. Get the papers so I can sign myself out!” While he was getting the paperwork in order I gave him a lecture on being human, bedside manner, and compassion. If only I had a tape recorder in that room because I was red hot angry but everything came out sane and oh so true. I’m glad I finally got angry it took me away from my depression for a millisecond but standing up for myself may have saved myself because with every treatment I lost more memory, more chunks and people from my life, and more ability to cognitively function. After ECT my migraines have increased not only in frequency but also in intensity. It’s been rough. I’m not recommending anything to anyone I am not a doctor and if you do decide you want to try a more long tern holistic approach. (Always check with doctor first) A neurologist once told me to take a baby Aspirin and COQ10 every morning. I’ve been doing it for over 2 years now, as I feel desperate to try almost anything. I think it has slightly reduced the frequency of the migraines. My current fight has been trying to work on the cognitive, memory, and concentration problems on my own. It’s definitely an up hill battle. Well I how that your pain lessons.
With hope,
Crystal

EricJuly 3rd, 2011 at 11:06 pm

Crystal,
I can identify with your plight, too. Your statement about what the doctor said about your migranes:
“I got the answer back “we don’t know it could just be coincidence”. I thought yeah coincidence, every time you mess with my head and electricity I get a migraine, yeah that sounds right.”
It just goes to show you they are just in it for the money.
I underwent ECT and had four sessions before I started to feal like I was on LSD. I was given ECT on an outpatient plan, even though I lived alone. After those four sessions I ended up in jail in Connecticut. I was from Virginia at the time. It was a nightmare to the extreme. And the doctor and staff never inquired about why I didn’t show up for more sessions! Man I was messed up and obviously they didn’t care.
That was in 2003 and I still have memory problems and still have depression. Thanks a lot!
Oh, and they didn’t tell me you were supposed to stop certain drugs before undergoing ECT. My life was ruined by ECT.
Hang in there,
Eric

CrystalJuly 18th, 2011 at 4:10 am

Eric,
After undergoing the inpatient ECT for 5 treatments. Everyone just let me go home to my home where I live alone and had access to my keys and my car. I decided to go back to work in less than a week from the treatments. After experiencing this being alone after ECT I think it’s extremely dangerous to have ECT outpatient or even being sent home to a place where you live alone. I think one should have to undergo an neuropsychological assessment and a cognitive therapy plan afterward. I got called out of my job to the vp’s office and escorted out of the building. I found myself driving places and getting there and not knowing where I was or even remember driving. I found myself in dangerous situations. And even the simple things I’d put food in the oven and forget about it till the next day it was amazing I didn’t burn down my house. I actually can’t even believe I survived that period. I’m aggravated that they push this as a miracle treatment and really they don’t know enough about it. I also think that if doctors are going to guinea pig this this treatment on people they should be held to a certain level of care, a care system for before during and after the ECT. The insurance companies are willing to pay to fry our brains with the hope of relieving depression or in there eyes having to pay for less psych meds but they wont pay for the recovery process like cognitive therapy. I”m obviously not pro ECT but I think that those that have had ECT should be given help with the problems it caused and that people that are going to have ECT it should be done in a manor t0 minimize the effects on memory and cognitive ability through the creation of a program that supports those who have had ECT getting as close back to they were memory wise and cognitive ability.
Eric I sorry to hear that ECT ruined your life I do know the feeling All can we can do is rebuild
With hope,
Crystal

DanaJuly 31st, 2011 at 10:47 pm

Wow, I am so thankful to have just found this site. I also underwent ECT treatments two years ago and can COMPLETELY relate to all of you who say it has negatively impacted your lives. Since ECTs ended I have been going to cognitive brain rehabilitation because ECTs damaged so much of my ability to function normally. I also have not been able to return to my job as a teacher and am currently on disability. Now just finally coming out of a bit of the brain fog I am doing what I can to try and connect with other ECT survivors. I know my experience was a lonely and scary one. Although it is unfortunate, it is also relieving to know I am not the only one to have suffered from this psychiatric abuse. I plan on checking in now from time to time and hopefully discuss and share more about ECTs.

CrystalAugust 3rd, 2011 at 4:37 pm

Dana
I’m sorry you also had bad experience with ECT. Since I’ve found this site I’m pretty much a regular. I agree it was and still is in its aftermath a lonely and scary experience. If you ever want to chat I’m pretty much always around or my email is listed several times in the above board.
With hope,
Crystal

DanaAugust 3rd, 2011 at 8:57 pm

I just kind of flew through all these comments and wrote down some notes to comment on. I am sorry if things appear to be pretty random and hopefully you can follow some of my train of thought!

I was HIGHLY suicidal so according to the doctors a great candidate for ECT. I was told this was my last hope. Personally, I will never ever believe ECT as a last hope. Although I know it has been beneficial for some others, I would never ever recommend ECT for ANYONE. It is too risky, I would NEVER EVER wish what I experienced onto ANYONE.

I often wonder about all the the money (talking hundreds of thousands of dollars) that was spent on ECT and hospitalization. Now looking back I am sure I could have used that money to try some alternative treatments or at least send myself to a private island with my own guru for awhile….might sound silly but don’t knock it until you’ve tried it…you never know. I guess I believe it is important to try ANYTHING before ECT because as Crystal has mentioned “Once you go through ECT you can’t go back.” So incredibly true.

Erin: You mentioned that those that have gone through negative ECT experiences do not have a voice. I have been searching for over two years now to connect with others that have gone through this scary experience. I believe it took me so long to get here because I was cognitively unable to get here. Now after two years I believe I am finally finding a bit of my voice. I think I am actually a “Lucky” one also. Erin, I see you only posted once…if you do read this I would love to hear how you are currently doing.

Jessie and Crystal I am also 29…with many seemingly similarities. Kind of strange. It sounds like we were at similar points in life and then came the huge ECT disruption/derailment.

One post said ECT is a quick fix. Yeah, in my opinion giving someone a concussion everyother day will postpone/quick fix mental illness. But in most cases the mental illness returns…

DO NOT DRIVE!!! DO NOT DRIVE!!!! I absolutely agree!!! I had and still have some troubles with driving. One day I was on my way home. I parked my car outside my house. I got my key and spent several minutes trying to shove my key into the door and yet it wouldn’t work. I was sooo confused and didn’t know what to do. After several more attempts, I realized I was at the wrong house!!! I had lived at that house 4 years previous to ECTS. I was then left to trying to find my REAL house. I have experienced lots and lots of getting lost in a town that I grew up in. GPS and mapquest are essential.

Crystal: I have been very LUCKY in that I have been in cognitive rehabilitation since the end of the ECTs. It has been two years of rehabilitation and neuropsych testing. It is really unbelievable, but the Mayo Clinic is where I underwent treatment and they diagnosed me with a cognitive disorder due to ects. They actually admitted this and referred me to the brain rehabilitation clinic where people with brain injuries get treated!! My insurance(I have been lucky to have great insurance) has paid for everything. If I wouldn’t have had cognitive rehab I believe I would still be totally struggling, depressed, lost, foggy, etc………. Crystal, you have mentioned MANY techniques that I was taught…..did you figure this all out on your own??? That is impressive to me. :)

Journal everyday, Journal everything, Keep a planner even if it is just for taking meds and eating meals, After getting together with friends or others write everything that happened(conversations) down, Reading is very tough but gets easier the more you practice and you may need to take notes, Post it notes can be a person’s best friend.

Other thinking strategies that I have learned include(may sound elementary, yet can be very helpful to have these written down and in eyesight as a reminder): Make sure you always read and follow directions, If not sure, ask for help, TAKE NOTES, ask for clarification and repeat back, double check, double check, write down verbal directions, SLOW DOWN, Stop and think, Pay attention to details, DON’T ASSUME, Check off completed tasks, For any task-BREAK IT DOWN, and go step-by-step.

I would never recommend ECTS but if you are stubborn like myself and some others on this page, it is extremely important to have a SUPPORT SYSTEM in place. I wouldn’t like to know where I would be today without them. On the days that I had ECTS I would sleep 20 hours a day and then was a zombie of human being the other 4. I couldn’t really take care of myself AT ALL…

One thing I would like to know is how do you inform others about your history of ECTS? Do you tell others? Because you look normal, nobody knows what you have gone through but it can be evident to some people once you get to know them that there is something different with you…for instance I have lots of difficulty talking and “spitting” things out. I spend abnormal amounts of time trying to talk and well it is noticeable. Do you others experience this and get embarassed? Do you feel a sense of shame? If so, what techniques do you use to help you deal with this shame?

I don’t know how far along you are at with your treatment or if it was similar to mine in that I have this 2-3year gap of when I was just purely getting treatment. How do you explain this gap to others and employers???

THANK YOU ALL for letting me share and apologize if some things come off pretty scattered.

CrystalAugust 4th, 2011 at 8:31 pm

Dana
I’m kind of all over the place in response to your comments.

The doctors also told me ECT was my last hope. I agree with you completely that, “I will never ever believe ECT as a last hope. Although I know it has been beneficial for some others, I would
never ever recommend ECT for ANYONE. It is too risky, I would NEVER EVER wish what I experienced onto ANYONE.”

Im also agree with all the money spent on meds, psychotherapy, hospitalization, and ECT I think an island and a guru would have been a more sensible choice J

As far as having a voice or talking to others I believe I also just cognitively couldn’t do it but I always have one passion and it is helping others. A good friend called me one night in a panic his girlfriend was going to go through ECT he couldn’t change her mind and he knew what I went through with the ECT. When I realized that He had her call me and I told her things that I wish someone would have told me before I went through it. I knew I wasn’t able to stop her. So my passion to help someone else lead me to break through my own walls of looking into the after effects of ECT. I managed through research and my own experience come up with little silly cognitive games and dos and don’ts and while she was going through it I called her regularly and tested her memory and pushed her a bit she recovered a lot quicker than me but she doesn’t believe ECT did much for her except very temporarily. We are good friends now. In any case in my hunt to help her I have found my voice and have been able to express some of my anger and give some advice to some that were lost. I thank god for this site.

“One post said ECT is a quick fix.” I consider it more of a give up rather than a fix

All I say about driving is GPS saved my life and we are talking in my old familiar suburbanite area.

Dana I’m glad you have been lucky in that you have had cognitive rehab. My doctors found that it was unnecessary and that well frankly the biggest problem is that my insurance wouldn’t pay for it. Pretty much everything I’ve figured out I’ve had to do so on my own. Hell I’ve always been a figure out on my own even the impossible I did however had a friend that served largely as my memory right after the ECT if it wasn’t for her doubt I’d be this far. But thank you
:)

I greatly agree with all the advice you listed and glad you listed it here for others that our going through ECT not to mention us who have been through ECT and just need the reminder.

My memory is significantly impaired especially when I’m stressed out so I do make new people in my life aware of the fact that I have medical memory problems as a generic way of putting it. Anyone getting close in my life I slowly let them in on the basics of what happened with the ECT but leave the gory details out. As far as employers I wouldn’t let them know anything about it due to the fact that my work knew and when I returned I was greatly discriminated against. I think you tell people on a case by case basis and to the degree they need to know.

I use to be a highly eloquent writer/speaker and now I also have problems spitting things out. I’ll be looking for a word and can’t even give people clues as to what word I’m trying to say. The only thing that seems to helps is reading and writing as much as possible oh and I also talk 0n the phone a lot with people that will correct my English or help me with words or just laugh about it with me. I still have horrible problems with certain English/grammar. For the life of me I can’t get out a sentence straight and I’m always mixing up homonyms. I’m no longer embarrassed by it but I do get highly frustrated from time to time. You ask techniques to deal with your shame about not being able to speak straight I guess I always deal with things with humor. I’ve always been able to laugh at myself and at others. I wouldn’t survive without humor I’d be too depressed. So with some friends if I can’t say something or say something funky I say ECT and kinda giggle like ha I get a free pass lol. I don’t know I guess I almost find what comes out of my mouth t too funny to even be ashamed of it just laughed at and passed by but that me and my sense of humor. There are days I get really mad I can’t speak/write like I use to but they pass.

As far as treatment I have a psychologist and psychiatrist and am on meds. As far as cog rehab its all on my own.
Employment: I’m on disability for not only my mental problems but for a back injury I got on the job. As far as explaining gaps I would be as vague as possible. Say you took some time for personal reasons or medical reasons. Saying medical reasons though might provoke questions. I wouldn’t tell the truth but its how much you want to lie be it personal reasons or I took some time to spend with family or travel or find myself or a spiritual journey. My theory is either keep it real simple or get creative.

Well it was nice chatting.
With hope,
Crystal

DanaAugust 4th, 2011 at 9:01 pm

YES!!! YES!!! Yes!!! I DO completely agree with ALL of the ABOVE!!! So much so!! I could spend an ENoRmouS amount of time commenting and adding to the above and actually to hope to discuss more in depth in the future. I am interested in your thoughts about filing a malpractice suit toward the facility that you received the ECTS…I know there is a statute of limits regarding the whole business and I guess I am unsure of where you are/were at with this…I am currently within the time to bring forward a case about the abuse that occured during my treatment(like said above, so often time runs out.). I am currently in contact with CCHR and finding out ways to adovocate alternative treatments in my area. I guess, I am wondering if you EVER considered legal action or some sort or activisim toward ECT??

Thank you so much for your response…it is appreciated more than you know!! :)

CrystalAugust 9th, 2011 at 6:39 pm

Sorry this will be short today I’m so far depressed I can’t take it. To answer your question no I’m not seeking any legal action. I really don’t think I had a case and am pretty sure that time would be up anyways. I’m definitely interested in educating people in the community about what ECT can do and help those who are in the decision process of ECT or even after ECT but I’m clueless about going about it. I would like to take some kind of stand. I have a big heart and want to help others from enduring the things we did.
With hope,
Crystal

CrystalAugust 26th, 2011 at 7:43 pm

Recently a severely verbose, I think I’m better than God type privately emailed me. Yes my own fault for giving out my private email. I tried to read the email objectively trying to get past the crap of him trying to intimidate me through his polite veil of words but sorry buddy I was Ivy League College Graduate so I didn’t fall for that. Just to make sure I wasn’t judging this letter wrong I read it to a friend who agrees he is just trying to shut me up. He said that I’m being a fear monger. He basically said in a not so concise way that I’m scaring off people from ECT that could really benefit from it. I don’t believe this is true considering even if you look at the first post on the board it was to help a friend that had made the choice to go through with ECT. Most of the people I talk to on and off the board already had ECT. So if anyone feels the same way or anyway about my posts please say something to me. I do wish he had posted on the board what he emailed me because in part of his email he spoke of alternative treatments. Personally I wouldn’t try them after looking into them but they might be helpful to others so I will quickly list them TMS (Tran cranial Magnetic Therapy), VNS (Vagus Nerve Stimulation), DBS (Deep Brain Stimulation)
Any input on my frequent posting or being a “fear monger” input welcome.
With Hope,
Crystal

Catherine PepperAugust 26th, 2011 at 9:01 pm

yes, Ive posted before and I’ll say it again, ECT can be a lifesaver, obviously to receptive people. There are not enough pros on this topic, where are all the positive experiences out there? I can put up with some memory loss if I am alive and my family would agree. There must be some satisfied people out there, I have to book mine well ahead because its so popular! ( private psych hospital in australia) . Cathy.

CrystalAugust 30th, 2011 at 1:53 pm

Catherine,
I think I’ve already said it before but it’s worth saying again. I’m glad ECT was a lifesaver for you and I hope that you are able to continue to live a full and happy life. As far s where are all the positive experience posts I have the theory that it helped them and now that they feel better they no longer look at boards like this they are to busy getting past moving on to living again but just a theory. I’m also curious you said you have it done in Australia. I wonder because I’;m not educated on this but if there is differences in the way they do it there verses here(United States) any one have any info on if there are differences and what they are?
With Hope,
Crystal

Catherine PepperAugust 30th, 2011 at 11:46 pm

I have bifrontal ultra brief maintenance every 2 months. Private psych hospital, with insurance costs me nothing, Drs both covered by our national health and hospital by my private insurance. Without insurance I believe it costs around $700 a treatment. Arrive hospital 6am, ECT 7am, theatre recovery for 1 hour then recovery room for 4 hours. Then allowed home. Recliner chairs to recover in, 4 in a room,( 4 patients treated each morning). Morning tea and lunch. Nice tv in room. I have a slight headache, sore jaw and a bit nauseus. Later small degree of memory loss but not bad. Able to work the next day( Im an RN). If I need 3 in a week(if unwell) there is more short term memory loss, sometimes cant find a word or remember reading something. Unilateral is more common in Australia , bilateral rare. Nearly all ultra brief now. High flow oxygen during treatment and by mask in recovery. I started in 2000 in a public hosp, not bad but prefer private. Ive had about 50 since then. Maintenance is indefinite time span. Feel free to ask if there is anything else you would like to know. One satisfied customer.

CrystalAugust 31st, 2011 at 3:48 pm

Catherine, Thank you for posting this because It sounds different from what I experienced. A lot is alike. I was at a private psychiatric facility fully paid for by my health insurance. I did however do inpatient and glad I did because I didn’t know up from down after the treatments. In recovery I was not given oxygen and though I’m prone to severe migraines with nausea and vomiting to dehydration. After every treatment in recovery I woke up to the most blinding sickening migraines in my life. And then they would just wheel me down to my floor and dump me in bed because I was to sick to stand. So to hear recliners, tea, lunch, and TV I’m shocked. I had it 3 times a week but I cut it off after the 5th time. I couldn’t take anymore. I tried to go back to work 3 days after my last treatment(I’m an Accountant). They put up with me for a few days but I was escorted by my boss to the VP and told I need to leave because I was sleeping at my desk. (hmm tell someone to drive home when they apparently can’t keep their eyes open real sensible and this is a company whose mission is to help people with disabilities.) I was told to take more time to recover which I did. I don’t remember how much but when I went back everything was like I was doing it for the first time it was a hard fight I just stayed longer in the day (I was salary), pushed harder and got the work done. However my whole department actually turned against me and complained about a few tiny errors that we all have made in the past it was a fight to keep my job. I did win but it was a hostile work environment after that. I’m glad I no longer work there. Sorry for the tangents. My point is you say you can go back to work the next day. That is unfathomable to me. They didn’t tell me what I was given as far as bifrontral or unilateral but I know it wasn’t ultra brief. At the time I was so depressed I could care less and didn’t have the will to research it after all my psychiatrist was telling me this my last hope and I was too down to question it which is the complete opposite of me. I’ve went to the hospital website to see if it would say what they do but it doesn’t mention any of those terms. So maybe we all should be looking at the difference of how ECT was performed rather than just talking about ECT as a coverall term. I’m glad it is helpful to some people I just wish I knew all the reasons that it helps some and not other besides that everybody has a different chemical and physical makeup even though we are the same species. Now I’m getting to the point of severe rambling so I’ll stop myself. Have a good one everyone.
With hope,
Crystal

Catherine PepperAugust 31st, 2011 at 6:45 pm

I have had ECT as an inpatient at the same hospital and the only difference is to go back to your room after. I have a close rapport with my psychiatrist over 16 years and he totally involves me in the decision of elecrode placement, ultra brief and anticipated length of seizure. He also lets me decide on frequency of treatments and I can ring him and request one whenever I feel I need it and he can organize it immediately. He also fully involves me in all medication decisions. He is also one of the experts in ECT in our country and even trains doctors in my city. I can speak to him by phone any time, even overnight. He is the ONLY Dr I will allow to perform the procedure and he knows this, even returning early next week from a personal commitment in order to “do” me on tuesday. Finally I have close relationships with most of the hospital staff who are like my family and are so supportive. Even my anaethetist is great, always the same one and knows just how much Propofol to give. There is always a phone call from a nurse the next day to see if Im ok. Come and live in Australia! With love and encouragement.

Catherine PepperAugust 31st, 2011 at 6:53 pm

I forgot to mention that as far as my workplace goes, its a need to know basis. Management are aware but have never been a problem, they know that when I have a single sick day, thats what its for. Only my closest friends know and are very supportive, keeping a watch out for if my memory plays up. I choose not to talk about it in general because I feel most people dont understand it and make wrong assumptions. On the whole, never an issue,as I said I am a night RN at the same nursing home 22 years now.

CrystalAugust 31st, 2011 at 9:10 pm

Catherine thank you for all the info. Unfortunately I’m a creature of habit and love living in Western NY, US. I’ll probably will never make it all the way to Australia. Hell I would have to get a passport first I pathetically just use my enhanced license to get into Canada lol. I’m not as lucky/blessed/educated/whatever you want to call it for everything you listed. I’m however truly grateful that my psychiatrist knows me well enough to let me make all my own medication decisions and copies me on blood work and speaks to me as if I were a colleague rather than just a patient walking in blindly with no knowledge. He knows how I try to research everything and how I will no longer be a guinea pig for new medications. I probably should have went into a more medical based field but instead stuck with the family field. As far as telling people about it I told people more freely because well frankly with the depth of long term and short term memory loss I couldn’t cover it up or explain it away. I forgot whole people past and present. They would have to tell me who they were how we met etc etc that was rough trusting a total stranger with my memory but they knew too much about me my life my belongings my stories to really be a stranger…just lost in my mind. And even today to come up with peoples names I know I usually, if they are close, resort to “hun” or if they are more of an acquaintance or someone I worked with I try to avoid saying their name at all. In any case thank you for the love and encouragement I’m currently doing much worse than usual so I can definitely use it. Thanks again.
With hope,
Crystal

DanaAugust 31st, 2011 at 9:31 pm

Hey Crystal,

Crystal-

I recently tried to respond to your Aug. 26th post but it still appears to be “awaiting moderation” so I don’t know if you can see it or not. Anywho, I just want to THANK YOU for posting what you have so far. Despite the sadness of it all, it is actually empowering to know that I have not been the only “victim” out there to ECTS…It’s not all in my mind…I’m not making it up….I’m not being difficult…I really have suffered and dealt with quite alot. Seriously everything you have written down I can wholeheartedly understand and say that I have gone through sooo many of the same things you have. Please keep updating us/myself as I feel I gain alot from it. I am sorry to hear that things are getting harder for you these days. Please take care! -Dana

CrystalSeptember 1st, 2011 at 3:20 am

Dana:
Hi. First off as far as the post goes I believe if you put any email addresses or websites or I’m not sure what else it goes into a waiting period for approval by the host of this website. I’ve had it happen to me before also but the post eventually popped up. I believe she is just trying to keep out hackers/viruses/spam I know the site has been hacked at least once. So I’m grateful to the host for this site and for keeping it going and doing things to protect us like screening posts because I know if my computer crashes its like the end of the world. ******Someone please correct me if I’m wrong!******* you know (“an ECT moment”) but I believe her name is Juli. I really appreciate all the hard work that has been put into this site. I originally wanted to start my own site but I can’t keep up with it in my state that’s why I frequently post here. I’m so sorry what you’ve suffered through no one should suffer through anything like this but I’m happy to hear I made you feel not alone. I usually try to respond to every post if I can be helpful just to let the person know they have been heard because I often feel like I post a lot and then when I see nobody posting with input or stories I start to feel I’m typing to myself. So a post from someone like you with input or your experiences or just “yeah I feel ya!” every great once in a while is nice. And thank you I will do my best to take care of myself and keep posting.

Everyone:
On another note in two weeks time I saw shock therapy in a movie (Changlings) portraying it in the horrible ways of the past and tonight I sit down watch one of the fictional TV series that I like Royal Pains on the USA Network and one of the patients undergoes ECT and they show the basic process and show it kind of in a positive light but ended with showing the person going through with the procedure it had a taste of hope for the character. I was kinda disturbed by this just because of my own problems but I have heard it helps some. I’m still just really angry! (as I can hear my old psychiatrist speak the words to me this is your last hope).

Thank you everyone who has posted directly to me and the emails encouraging me to keep posting and the kind words. (Dana you are so right it so helps to talk with people that have been through it and actually understand)

With hope,
Crystal

DanaSeptember 1st, 2011 at 5:33 am

Hi Crystal,

Thanks again for your response and the info about posting emails on this site. That is what I did! I don’t have tons of time to write but I want to let you know of another page on this site where we have had some “lively” discussion about ECTS recently and don’t know if you are interested in reading or joining in. I just tried posting a link to it, yet again, I am awaiting moderation. So I want to try to guide you there another way.

If you click on ECT INFORMATION under the ECT RESOURCES you will be directed to a page.

The discussion is going on under the title: 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! (This is currently the second post on that page)

If that doesn’t work let me know and I will try my best to guide you there. There are a few other “angry” and active ECT survivors there and like you said there is something reassuring to find others that understand. Please take care and I hope to talk again soon.

CrystalSeptember 1st, 2011 at 10:06 pm

Dana as soon as I possibly can I will try to get to the page thank you for giving me directions and for thinking of me. I am interested in the topic and active talking and still have to put that book on my reading list. I’m currently half way through the book, An Unquiet Mind I can’t remember the author at the minute but it goes though a woman’s struggle with bipolar disorder way back in the past and so far I can relate to so much of it. It was recommend by a friend. Well I’m to drained to keep my eyes open so thank you and hope we talk again soon also.
With hope,
Crystal

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Bielizna SklepDecember 20th, 2011 at 12:49 am

Hey! This is my 1st comment here so I just wanted to give a quick shout out and tell you I really enjoy reading your posts. Can you recommend any other blogs/websites/forums that go over the same subjects? Many thanks!

CrystalDecember 20th, 2011 at 12:27 pm

Bielizna Sklep, Welcome to the board. I don’t really remember many other bogs/websites/or forums that I liked back when I was researching it. I know this board has gone quite quiet. I probably monopolized it to much. Dana on this board recommended to me, a couple posts back, that there were discussions going on this site about a book Doctors of Deception supposedly more active crowd. You might want to check that out. And if you ever wanna chat here on the board or feel free to email me at my personal email which is in quite a few former posts just put ECT in the subject. Well good luck on finding what you are looking for.
With hope,
Crystal

NHGrandmaJanuary 30th, 2012 at 1:00 pm

Hi all
I thought I posted a comment but it appears to be missing. Anyway. I had ECT done in fall of 2009. I have lost 2 years + of memory. It continues to haunt me every day of my life. Cognitively I am at a deficit. I can’t remember much. I have notes all over my cabinets to remind me of even simple things. I always make sure I carry a package of post its with me so I can write things down quickly before I forget.

Here I am 2 years later and I’m still trying to understand what happened in 2009 and 2010. What I’ve been told is that I was in and out of many hospitals because I tryed to commit suicide – I had severe depression and PTSD. I was on a few psych. drugs that apparently were not working. I was cutting my arms up pretty bad. That is why they decided ECT was the answer. I never signed a conscent form. Again, from what I was told, they did ECT 3 times and noticed some memory issues but yet they continued and dd ECT 2 more times. After the 5th time they realized that my memory was significantly impacted so they didn’t do anymore. I am angry….why didn’t they stop after the 3rd when they new damage was taking place. Apparently I went into the hospital again 4 times within the next 3 months for the same thing – ECT didn’t work – it just damaged me. I wanted to sue the doc yet I can’t find a single lawyer that is willing to take the case. Bottom line is these so called Doctor’s can do anything they want (like Dr. Frankenstein) and not be held accountable for their actions. I am still on many meds and they help me – but I still have to go to therapy every week and learn how to control my anxieties, depression etc.

CrystalJanuary 31st, 2012 at 2:11 pm

NHGrandma,
You have my sympathies. Most of my story is in the above comments as I’m a frequent poster. It seems like doctors just have free rein to say shes in too high of risk of suicide so ECT is justified. I think that’s why lawyers won’t take the case because they can’t prove you wouldn’t have committed suicide or further harmed yourself without the ECT.(just assuming here) I find that crap. I’m still extremely angry at the doctors and at the procedure itself. I’m highly angry that it took away so much of my memory, that it didn’t help on the depression front, and well that the doctors lied to me. I also decided with just anger you get no where. I keep trying to rebuild pieces of my memory but it is difficult. You use post-it’s I use a combination of my cell phone, a big white board, legal pads and post-its. Just to remember to take my pills and what time I have alarms set on my cell phone. I have alarms to go to appointments even for silly things like take out the trash. My whiteboard tells me what I need to get accomplished this week. And post-it’s and legal pads cover almost everything else. I did in the past look into my memory loss from ECT being consistent with memory loss in brain injuries. Some of it you will never recover or so I’m told but there is a big percentage that can be recoverable. You have to make sure you keep your mind working or challenged. I stupidly dove in with a 600 page book thinking reading would engage my mind. Well it often discouraged me because I couldn’t make it through a few pages without forgetting what I read and had to start over. I did finish the book though eventually. I am currently reading a book but on days that my memory is acting up or depression is bad I switch to short poems. If I would have thought of it back then I would have started with short poems. I also now in a type of cognitive rehab I make sure I play Brain Games (by Lumosity) an App I subscribed to on my phone and online. I’m not recommending it just saying that it has games that are simple enough to play and I am seeing a slow improvement in speed, memory, attention, flexibility, and problem solving. I think its not so much as what you do. Hell do the crossword, Wonder-word, or a Sudoku just keep the wheels in the mind turning you know kinda the use it or you lose it theory. I was also told by a doctor that it is hard to prove anything when it comes to ECT because normally they don’t do a neuropsychological workup before and/or after ECT therefore you can’t prove how much memory was lost and if it was due to ECT. I know its all very frustrating and well a lot of bull crap. I can see why you would be angry because you never said yes to having it done…it was all in the incapable doctors hands. I was suicidal and talked into it. “It was my only hope…my last hope” I said yes and I’m angry. I still feel swindled (this is not “some short term memory loss”) In any case if you would like to chat more just hit up the board or you can email me. My email is listed several times in the comments. Just put ECT in the subject line.
With Hope,
Crystal

MonJuly 13th, 2013 at 1:23 pm

I had ECT done for a full year- between summer 2011 and summer 2012. My short term memory was fried, but it came back gradually and I am now able to function without writing every single thing down. My long term memory is a different story. There are about 10 years of my life that I just don’t remember anything from. My mom told me that I had gone to Paris and Copenhagen with my two best friends several years ago, and I was shocked- even seeing pictures from this trip, I recall nothing of it. There are so many other major memories that I am missing… I don’t remember any of college, being in my best friend’s wedding, and so much more. My doctor was fairly hopeful that my long-term memory would return, telling me first 3-6 months after ECT, then 6-9 months, then 12 months. … Well, I am at a year out now and just had an appt with my doctor again. He was blunt and told me that, at this stage, it most likely won’t return. What I’ve got now is what I’ll have, period. I think I knew this was coming, but it still rips me to pieces. I am trying to be positive about it and think of all the new memories I will be able to make in the coming future, but still… that doesn’t replace what I’ve lost. And that year of ECT? It kept me alive during that year, but that’s about it. I am still severely depressed, dealing with SI every day, and on a handful of pills morning and night. Am I mad at my doctors? No. We all were planning on doing just 3-4 weeks of ECT. How that turned into a year of ECT I’m not sure. It’s just hard because I was prepared for the possible side effects of 3-4 weeks of ECT, not a full year. Anyway, I just really needed to get all that out. I’m not a screamer but I wish I could scream, just this once, that I want my memory back!

CrystalJuly 18th, 2013 at 8:33 pm

I say go ahead scream at the top of your lungs. I think you are entitled to a good scream. It’s terrible to be missing chunks of the past, I know. I also say don’t give up completely. Some pieces of the past might come back. Well this is just me saying you are heard and there are other people that feel the same way.
With Hope,
Crystal

LoriAugust 25th, 2013 at 6:01 pm

I have had 13 ECT treatments with some short term memory loss that the Harvard Md’s have told me will return. They best be right! Anyway, I was wondering if anyone else has had a horrible taste/smell? All I can think is burning brains? It is driving me even more crazy!

CrystalSeptember 12th, 2013 at 3:42 pm

Lori,
I haven’t had or heard of anyone having a horrible taste/smell. However when I woke up from each treatment I had an excruciating migraine and violently puked from the amount of pain. Sorry I couldn’t be of more help. I hope you are able to figure out what the taste/smell is. It could be a side affect of the anesthesia used. I’m just throwing out a guess to get the thought of burning brains out of your head.
With Hope,
Crystal

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Excellent! I’m going to download, print and carry this with me. Great reedminr. The other thing I would add is to head to the web to check out any new medications. I bookmark what I find for handy future reference.Sue recently posted..

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Darrell McIlwainFebruary 21st, 2016 at 12:08 pm

Does anyone have insomnia ater ect?

CrystalFebruary 21st, 2016 at 7:36 pm

Darrell,
I personally didn’t have insomnia right after ECT. I however developed it in the years following. I have no idea if the two are connected.
With hope,
Crystal

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