Beyond “anecdotal” evidence: Poster Session at NIMH Conference

This was a poster session presented at the annual NIMH Conference by Linda Andre and Juli Lawrence. Note: graphics are clickable for larger views.

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Beyond “anecdotal” evidence:

The contribution of ECT survivors to research on the permanent effects of ECT on memory, memory ability and cognition

Authors:

Linda Andre
Juli Lawrence

2002

Statement of the Problem:

Evidence from ECT survivors has been dismissed as “anecdotal.”

Such evidence exists in many forums: in the popular press, in literature, in public testimony before legislatures, on the internet, in the archives of the Food and Drug Administration—but almost never in the published medical literature. Thus, this evidence has been almost entirely ignored by paid professional ECT researchers.

The discounting of the writings and testimony of ECT survivors has led to a “knowledge gap” in ECT research. The enormous body of knowledge of those with direct knowledge of the nature and extent of ECT’s permanent effects has been discounted by professional researchers. Professionals have attempted to study these effects without input from those directly affected. They have not been successful.

In an attempt to close this knowledge gap, survivor researchers have designed and instrumented our own research projects to investigate the permanent effects of ECT on memory, memory ability, and cognition.

There is a great disparity between the results obtained by professionals and those obtained by survivors.

Method:

We examine the dominant existing professional published research in comparison with four survivor-designed studies and attempt to account for the disparities.

Though we surveyed research from the 1940s to the present, we focus here on NIMH-funded research of the past 25 years. Although some studies from the 1940s and 50s stand as unsurpassed examples of sound research—especially the famous Janis study which has prompted calls for replication to this day—most of the earlier studies are characterized by the same methods, assumptions, and flaws as the later work.

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Survey of the professional literature:

There have been only two major NIMH grants to study memory.
MH24600: Memory as Affected by Disease, Injury, and ECT
Principal Investigator: Larry Squire

This grant was not primarily or exclusively designed to study the effects of ECT; the topic of study is memory loss in general.

• Used a self-designed instrument, the Squire Memory Questionnaire, designed to distinguish the effects of depression on memory and cognition from the effects of ECT. It was not designed to investigate the permanent effects on ECT on memory and cognition by comparing individuals who had ECT with their own baselines or with normal matched controls. Also, the questionnaire measures multiple aspects of cognition, not only memory or memory ability.

• Used low sensitivity instruments to assess memory ability (i.e., word lists remembered over a very short interval; remembering names of TV shows)

• Findings and conclusions often contradictory.

• A study that followed patients for six to nine months found the majority reported impaired memory ability due to ECT. (Squire and Chace, 1975)

• A study that followed patients for three years found that the majority (58%) reported impaired memory ability due to ECT. Patients also reported an average eight month period of amnesia. (Squire and Slater, 1983)

“Certain empirical questions about ECT that seem at first glance rather simple to answer by experiment are still widely debated. Does ECT permanently impair memory?” (1986)

“Information about recent events can be lost for a long time, possibly permanently, after ECT.” (1986)

“One way of understanding how such complaints could occur long after ECT is to suppose that they are based on the experience of amnesia initially associated with ECT.”

“There is no good evidence that new learning ability is still deficient six months after treatment.” (1986 Consensus)

“The possibility cannot be ruled out that more sensitive testing methods will some day reveal a greater degree of permanent memory loss.”

MH35636: Affective and Cognitive Consequences of ECT
Principal investigator: Harold Sackeim, PhD

• First awarded in 1981; renewed through 2010; funded approximately $300,000 per year for a total of more than six million dollars

• Principal investigator’s longterm financial and career conflict of interest make this work scientifically invalid.

• Beginning around 1982, Sackeim began working for ECT device manufacturer Mecta as a consultant, designing their devices including the SR-1 and SR-2. He also received grant money directly from Mecta. His financial interest in Mecta has never been disclosed to NIMH as required by federal law.

• Instead of studying memory and cognition directly, the work has focused on a comparison of different ECT techniques.
• Most of these studies follow patients no longer than two months. (This research team claims that all patients are followed up at six months and one year, but the results of these followups aren’t published.)

• Amnesia is assessed using a self-designed, unvalidated instrument, the Autobiographical Memory Inventory, designed without input from survivors. Survivor researchers estimate that at least 60% of the items are insensitive to ECT’s stereotypical effects (for example, they measure very old, overlearned information which is almost never forgotten after ECT).

• Cognition is assessed by gross instruments such as the MMSE. Memory ability is assessed by simple tests such as paired words. (This research team claims that more extensive neuropsychological testing—some of which would be relevant to ECT’s effects—is done on all patients before and after ECT, but the results of these tests have not been published.)

• Much of the grant has been spent selectively reviewing existing research rather than doing experiments. For example, rather than directly design an experiment to test whether ECT causes brain damage, the grantees chose to write a review of some of the existing experiments.

CONCLUSIONS:

After more than 20 years and more than ten million dollars spent on one grant alone, basic research on the permanent effects of ECT on memory, memory ability, and cognition is lacking. By the principal investigator’s own admission, there is no data and there are no answers to the most basic questions about ECT’s effects on memory.

“Prospective patients, family members, and the public often want to know the frequency with which patients report substantial memory impairment following ECT. While we believe that such reports are infrequent, there is little objective evidence to support this judgment or even to broadly estimate base rates.” editorial

“There is no evidence that ECT results in impairments of executive functions (e.g. the capacity to shift mental sets), abstract reasoning, creativity, semantic memory, implicit memory, or skill acquisition and retention.” APA

“No study has documented anterograde amnestic effects of ECT more than a few weeks following the ECT course.” APA

“A very rare number of patients may experience marked retrograde amnesia as a result of ECT. There is no firm estimate on this incidence, but my estimate would be on the order of 1 in 500 patients.” (statement—May)

“All of the available information, from scores of studies, indicates that this deficit (anterograde memory loss) disappears within days to a few weeks following the end of ECT.”(statement—May)

“I’ve never seen a case where there has been permanent effect of ECT on anterograde amnesia. And I invite anyone in the country who believes ECT’s had a deleterious effect on their cognition to come in for evaluation.” (May testimony)

Survey of the survivor literature:

Because of the enormous gaps in ECT research, survivors have undertaken research projects on their own to reflect the variety of experiences. The results of these studies widely challenge the results of the professional literature.

The following is a representative, but not exhaustive, listing of survivor-designed and implemented research.

Committee for Truth in Psychiatry ECT Survey, 1990

52 survivors who reported that they had experienced permanent amnesia and reported that they had not been warned about the adverse effects of ECT were asked about the nature of these effects, using a questionnaire adapted from a standard form used to assess brain injury. They were asked about thirteen common symptoms of brain injury, and asked whether they experienced each in the acute period (the first year after ECT) and in the long term.

All respondents indicated suffering from at least some of these symptoms since ECT, both short-term and long-term. Half of the respondents checked nearly all items in both time periods:

  • general loss of memory ability;
  • forgetfulness or absentmindedness
  • language impairment (not being able to think of a word, or forgetting what one intended to say)
  • difficulty in reading comprehension
  • not “getting the point” of jokes, stories, movies, etc.
  • forgetting new information abnormally rapidly
  • impaired sense of direction
  • difficulty concentrating
  • difficulty with spatial relations
  • loss of manual skill
  • other loss of familiar skills

The average number of years since ECT was 23. The average age at ECT was 24.

They were then asked about the degree to which they had been able to compensate for these deficits, and whether they found them disabling.

Only one-fourth of the respondents felt they had been able to compensate. They further reported that it had taken them anywhere from 8 to 43 years to reach the point where they were able to compensate for their deficits..

Two-thirds were unemployed, reporting that they had been employed prior to ECT and unemployed as a result of it.

90% said they still needed help in coping with enduring cognitive deficits.

“I think that the residual effects from ECT certainly slowed my ability to do the thinking, concentration, and memory necessary to do my school work…and thus added years to my achieving graduation from college.”

“There was no acknowledgment of any damage so no help was offered.”

“Neuropsychological evaluation showed low IQ, cognitive difficulties”

“I’m OK with multiple choice tests but can’t remember enough to do essays.”

“Retired on Disability, though an associate professor with lifetime tenure. Was doing PhD in Physics.”

“Before ECT I knew my way around town as well as I knew my way around my own house. Now my sense of direction is horrible. I’m always getting lost.”

“43 years to get back to almost as good as before.”

“I am a great deal brighter than average—so professionals do not believe I suffer any losses from ECT. I was not tested before ECT, only after!”

VOICES, 1996

Questionnaires were distributed via online newsgroups and email lists of psychiatric consumer/survivors. 41 respondents participated in the study. 83 percent reported feeling their long-term memory had been affected. This ranged from loss of certain events in their lives, to the inability to remember family members, and in some cases, up to 20 years of memories were erased. Only 17% felt that their long-term memory had not been adversely affected.

“The worst thing that ever happened to me…”
“ECT destroyed my family…”
“Doctor claimed memory problems would vanish in two weeks…”

Of females, 82.6% said long-term memory was affected, and among males, 83.3% reported problems.

“I can’t remember my 20-year Marine Corps career…or daughter’s birth or childhood…”

Short-term memory appears to have been affected slightly less, or the effects were temporary. 63.4% reported problems with short-term memory loss. 12% said they had no problems at all with short-term memory loss. And 22% said that short-term memory loss was either temporary or minor.

“I couldn’t remember people’s names, but it gradually came back…with some prompting…”

Half of all respondents reported that they were given no information about ECT and its effects, other than to be told it was effective. The other half were given information in the way of video tapes, pamphlets, books, and detailed discussions with their physician or nurse. Of those, however, several reported that they wish they had been given more accurate information concerning memory loss and other adverse effects.

“I did have detailed discussions with my doctors before the treatment, but I just couldn’t realize how bad the memory loss was going to be. If I had, I’m not sure I would have taken the treatments…”

ECT Anonymous, 1999

ECT Anonymous, located in the United Kingdom, surveyed 200 ECT survivors. 82 percent of respondents reported a loss of past memories, ranging from slightly (8 percent), moderately (33 percent) and severely (41 percent). 84 percent said they had impaired present memory ability, and 85 percent reported difficulties with concentration after having ECT.

MIND, 2001

In early 2001, the UK mental health charity MIND sent out over 6,000 copies of its detailed questionnaire regarding ECT use. 418 replies were received.

Key findings:

  • Almost three quarters (73%) of the total sample and almost two thirds (60.5%) of those given ECT most recently were not, as far as they remember, given any information about possible side effects.
  • Of those consenting to treatment in the last two years, 48% received, as far as they remember, no information about how the treatment would work and 44.5% no information about possible side effects.
  • 84% of respondents said that they had experienced unwanted side effects as a result of having ECT.
  • 40.5% reported permanent loss of past memories and 36% permanent difficulty in concentrating.
  • Respondents from black and minority ethnic communities were more likely to be detained under the Mental Health Act and to have received ECT without consent. They reported a more negative view of ECT than the overall sample with 50% finding it unhelpful, damaging or severely damaging in the short-term and 72% in the long-term.

“If I had known I had the right to refuse I would have done so. My understanding was that I had no choice in the matter and that they could do it by force.”

“Was told by consultant ‘best thing since sliced bread’, ‘be well in no time’. When went wrong, ‘this was the first time this had happened’.”

“Possible side effects were downplayed and only lightly touched upon.”

“I was given no information at all”

Published case studies

The individual case study is an important and necessary method of collecting evidence, since it allows the nature and extent of amnesia, memory disability, and memory loss to be described in detail impossible to obtain in-group studies. Consistency in individual case studies illustrates that ECT’s permanent effects have not changed over the years.

As Empty As Eve, by Berton Roueche; first published in the New Yorker, September 9, 1974; reprinted in The Medical Detectives, 1981

“There weren’t just gaps in my memory. There were oceans and oceans of blankness. And yet there seemed to be kind of a pattern. My childhood recollections were as strong as ever. The fog of amnesia increased as I came forward in time. The events of the past several years were the blurriest and the blankest. Another area that didn’t seem to be affected was ingrained habits—repetitive acts and procedures. I mean, I hadn’t lost my command of the English language. I still knew the multiplication tables…But worst of all my problems was that I couldn’t seem to retain. I couldn’t hang on to my relearning. Or only a part of it. The rest kept sliding away again.”

Electroconvulsive Therapy and Memory Loss: A Personal Journey, by Anne Donahue; The Journal of ECT, June 2000.

“My long-term memory deficits far exceed anything my doctors anticipated, I was advised about, or that are validated by research. To the contrary, either I am one in a thousand, a complete anomaly, to be able to document memory loss still remaining after 3 years and extending as far back as occurrences eight to nine years ago, or the profession in general, after all these years of treatment with ECT, has still failed to identify and come to terms with the true potential risks.”

Further evidence for permanent memory and cognitive impairment is found in the neuropsychological evaluations (standardized batteries of tests for brain damage, taking place over two or more days) obtained by individual survivors at their own expense; many of these are collected in the archives of the Food and Drug Administration, Docket #82P-0316.

SUMMARY of survivor findings:

  • Amnesia (retrograde memory loss) occurs in a majority of ECT survivors. Commonly, the loss encompasses years prior to ECT.
  • Memory disability (anterograde memory loss) is common and does not resolve after ECT.
  • When tested long after ECT, survivors experience cognitive deficits.
  • Each survivor has her pre-ECT self as a perfectly matched control subject, eliminating confusion as to etiology of deficits.
  • More research is needed using extensive batteries of neuropsychological tests such as those used to detect brain damage. From the preliminary data gathered by survivors, a characteristic pattern of ECT damage has emerged. While survivors may do well on simple tests such as paired words or the Mini Mental Status Exam, more comprehensive standard neuropsychological batteries reveal deficits in higher mental functions such as flexibility, shifting cognitive set, abstract and analytical thinking, and executive function. Loss of measured general intelligence (IQ) tends to be highly significant—30-40 points.
  • Survivors have absolutely no difficulty distinguishing normal memory failures from those caused by ECT. ECT amnesia and memory disability has little in common with normal memory fallibility, age-related disability, or problems associated with mental illness.

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Discussion

Published medical literature research:

A small and exclusive playing field: a handful of research teams dominate grant funding.

The only available NIMH grant to investigate memory is tarnished by financial and other conflicts of interest; since this grant is renewed indefinitely, there is little opportunity for researchers outside the ECT industry to obtain funding.

Rarely follows patients as long as six months; almost never longer

Most studies look only at the short-term effects (from during ECT to a few days or weeks after)

Sample sizes very small in general (>50)

Self-designed memory instruments designed without input from survivors, largely insensitive to stereotypical ECT amnesia, memory disability, and cognitive disability

Rarely directly study the effects of ECT on memory, memory ability, and cognition. Instead, studies compare persons who had different types of ECT with each other, rather than with their own baselines or normal controls, resulting in an underestimate of memory/cognitive damage.

Often use no or inappropriate controls

Subjects do not reflect true diversity of ECT patient population: all treated at the same hospital, with the same doctor, at the same time, usually with same machine and technique

Because patients interviewed by their own treating doctor and/or institution, and sometimes while still institutionalized, bias is toward underreporting of adverse effects

Ambiguous inquiries about “memory”, without distinguishing between memory, memory ability, and cognitive abilities

Survivor research:

Researchers unpaid; work done at researcher’s own personal financial expense

Self-designed instruments designed by and for survivors to be sensitive to the deficits we commonly experience

Large sample sizes (<50)

Heterogeneous samples more representative of the ECT population as a whole:

Memory, memory ability, and cognition are studied directly, not as a sidebar to research on optimizing technique

Emphasis on describing discrete cognitive deficits rather than lumping them together with amnesia as "memory"

Patients are their own controls

Mostly very long-term follow-ups: patients who had ECT more than one year---and sometimes ten years or more---previously, thus eliminating replacing speculation with evidence as to whether adverse effects ultimately resolve

Because responding ex-patients are self-selecting, those with more severe adverse affects may be overrepresented

Because researchers are strangers and non-professionals, no incentive to underrreport adverse effects

Comments (9)

Limor ZaneNovember 22nd, 2006 at 12:37 pm

Dear God!!! I KNEW I wasn’t crazy or making it up! I swear, I immediately began to notice complete amnesia of the past year and acute amnesia of the months during and following ECT treatments.
Furthermore, I “became a completely different person” shortlly into the treatments and more noticeably, probably due to the facts that I was a LITTLE more aware of things and events surrounding my life a few months after ECT. I realized that the person I was prior to ECT, the person I have been all my life, had died and was nowhere to be found!!!! This “new person” I have become is a COMPLETE stranger to me!!!! I don’t KNOW who I am, now. I don’t know my likes/dislikes, because I don’t know the person I have become! I don’t know what to do in my life. I don’t enjoy the same things I did when I wasn’t suffering from Bi-polar induced depression. In fact, although I am not completely suicidal, just 50% less suicidal, after treatments; giving the treatments a little benefit of the doubt that they were helpful; I feel that overall, in the long-run, the treatments are more devasting, afterall.
Although, prior to treatments, I was so depressed that I didn’t care about anything, it has now been 8 months since the treatmenets; I have found that I am almost in the same place, if not worse, than where I was prior to the treatments. I have little to no emotions. I don’t know or remember what happiness even feels like. I don’t care about anything, least of all myself. I don’t care enough to even have the motivation to do “normal” things like shower daily, brush my teeth, change my clothes, eat, sleep – or sleep too much in order to escape the depression and “nowhere” of what my life has become. I don’t leave my house anymore. I am more anti-social than I ever was before. I can’t get myself to get off my couch and “do” anything. Everything seems like it’s more effort than it is worth because, who cares anyway. What difference would it make in my life anyway? I don’t have a life. I don’t really care if I do or I don’t. I don’t see people, anymore. Even if I could leave the house, I wouldn’t know what to do and even if I KNEW THAT, I still wouldn’t find any point to doing it because I know it won’t bring me any enjoyment – or any emotions, anyways. The only emotion I still seem to feel, are the more negative one. I do feel depressed. I do feel empty. Life seems pointless. I get angry. I get irritated, impatient, anxious, paranoid, and I cry at any given moment for absolutely no reason at all. I HAVE NO ENJOYMENT FROM ANYTHIING I DO!!! I just don’t see a point to even doing it!!
Furthermore, my memory ability has been damaged. I don’t remember very much, even presently. I don’t understand things the way I used to. I don’t retain very much infromation anymore. Reading has become difficult because it ends up making no sense to me after a couple moments due to my comprehension of what I had just read.
I tried going back to work a couple months after the ECT treatmenst, and I couldn’t keep a job longer than 1 1′/2 months. I got fired from 3 different jobs withn a 4 month period of time. Out of two of the three of the jobs, I made NO oney AT ALL from the first two – because they were commission-based and I couldn’t really DO the job very well enough to sell anything. The third job had to lay me off because I had a hard time doing even the simplest tasks efficientally. It took me 3 times longer to do things than it had prior to ECT, if I could do it at all!!! The company had to let me go becuase, although I been working in the field for 15 years, I was completely incapable of actually doing the job at all! All my experience, knowledge, and training were as if I had never learned them anyway! I was a complete novice after 15 years of doing the same thing, and I had been successful at it!!!!
My one greatest talent my whole life was in the subject of “English”. I NEVER even had to think of how to spell ANY word!! I would just KNOW. Today, I can’t remember how to spell the simplest words very well. While I had never had a need to use “spell-checker”, I have to now run it 2-3 times before I actually complete the piece. I have become independant upon a thesaures because I can’t find or remember even the simplest words. I find I can’t explain things to others so that they can understand what I’m saying. I’ve lost a great deal of my ability to communicate with others on even the most basic level. I lose my train of thought so easily that if I even become distracted for a few seconds, I can’t for the life of me remember what I was doing, what I was thinking, or what I was saying. I have to write notes before commencing a task or project in case I become distracted. I have to add to my notes on every point I’m at so that if I become distracted I don’t know where I left off or what I was doing. Sometimes, if I become distracted I don’t even realize that I WAS doing something; so I won’t accomplish a task, duty, project at all.
I’ve lived in my city for 30 years. I knew every single corner in this city, prior to ECT. After the ECT, I had no clue where I was, at all. I was told it was just temporary and it would clear up in a couple of weeks. It’s been 8 months since my ECT treatments and I’m terrified of driving there alone because I can suddenly, in the middle of my trip, become disoriented and completely lose all sense of space and where I am. It’s like, I find myself in another country, rather than, a few blocks away from home. I have no idea in what direction to even go.
Time and time-management has become sooo difficult to me. It’s like I’ve lost my sense of time/space. I can’t keep track of time. Four hours will have gone by and for me, in “my world”, I think it’s only been 20 minutes or 20 hours!!! I have no clue. I use to pride myself on my punctuality. I was the type of person that was always 15 minutes early to places. After these treatments, I can’t be on time to save my life!! I simply can’t be on time at all, for anything, because I just am not aware of time at all.
My hair is falling out in handfulls daily. I went through every blood test, hormone test, disease test -everything! NOTHING has been found to be wrong. As I was convinced it to be from ECT, myself, I’m even more convinced now that I’ve ruled out every other option. I’ve even had to change my medications several times for fear that it was from that. I only began to lose more hair! The point that convinces me most of all that it was due to the ECT treatments, is due to the fact that my head now has bald spots from the excessive hair loss EXACTLY in the places on my head that electrodes were place during my treatments!
I wasn’t given the correct – or full – information of ECT. I was told what happened and what to expect, but I was only prepared afor a few minor things. The greatest example was the lie they told me about have an absolute maximum of 6 treatments. They said 2 weeks and I would be done. Well, 2 months at three times a week later – I was at treatment #20 – I was still having treatments. At that point my memory and cognition were so bad that I had NO clue where I was, at all. I didn’t even know what my name was!!!!
I had to constantly be reminded what my name was. I had no sense of who I was or anything else about my life. They told me, great, now you’re “reborn”. You can start a fresh new life! HOW??? I don’t know who I am!! I’m a complete stranger to myself and, even worse, I am still as depressed as ever, so I don’t even care about anything! I have no emotion, no motivation, no care! So, I don’t even have the will or care to know who I am! What does it matter, anyway? It won’t change my mood or my emotional state!
I wake up disoriented as to where I am, where I was, and how I had gotten there. I have nightmares and I sweat so profusely that I wake up lying in sheets and clothes drenched in sweat. I wasn’t even hot! I was freezing throughout the night! And, this is if I could even sleep, at all. Many nghts I can’t sleep more than 1 hour and that is fitful, at best. On the other hand, there are many nights that I’m so exhausted that I go to sleep at 7pm and I physically can’t wake up until 2pm the next day! I’ve practically slep a whole day!! Some days I even do sleep more than 24 hours because a couple hours after waking up I am so tired that I becme narcoleptic. It doesn’t matter where I am! I will just lay down and instatnly fall asleep – even at the grocery store!! I fear going places alone because I can suddenly go into a “comatose sleep” at any moment and not wake back up for 18 hours!!!!
There are so many points and examples I could point out that have worsened in my life since the ECT treatments that I could go on and on.
My point in writing this was because I agree that ECT is detrimental to a person’s life and health much more than it is benificial. It’s negative “side effects” far outweigh the benefits it supposedly is said to have!!!
I stumbled upon this article in my search for any evidence – at all – that anyone else had these problems/symptoms/effects. I thought, maybe I was imagining it. Or, maybe I was pining all these things on the ECT treatments but it wasn’t really true or possible! I was not shocked, but certainly surprised, at how many people and how high the percentage rate there was proving that many others were suffering the SAME EXACT effects that I was. Not just a few of the effects; not just a few people…all of it!
I am totally and completely convined, after having read this article and studied the clinical trials provided, that ECT ruined my life! It took me farther back thatn it helped me up. It made me worse than better! Most of all dissapointment and frustration at these treatments, is the fact that I am almost exactly where I started – just stupider!!!
I have lost years and blocks of my life. I don’t remember a thing! I don’t remember being places that I’m told I was. I don’t remember people that I supposedly knew or had met. I have holes in my life that is irreperable! I can’t get those back. If it was going to “come back to me”, as I’ve told; wouldn’ it at least slightly have come back in the last eight months? I have complete amnesia of chunks of my life!! Not just a few moments or events that took place. Worst of all is that I’ve pretty much lost my education. I don’t remember much of the time I was in University or much of what I spent 4 years learning!! It was like I never went! I never got my degree, basically, because I don’t remember what I learned!
I am sad and disappointed, and frustrated. I am angry at the people that insisted I do the ECT treatments for takin g away even more of my life than I EVER got back. I really didn’t get much of my desire for life back at all!

I write to thank you for this study and this article so at least I know I am not crazy or imagining these things. It’s sad that anyone had to go through the same things I endured on the one hand. But it gives me some comfort that I’m not completely alone in this world!

“Nowhere Girl”
Limor Zane
limorzane@gmail.com

KarenFebruary 8th, 2008 at 7:55 pm

I just came upon this site. All the other research I’ve done in the past just says the same thing, that after ECT there would be a short memory loss.
Two years ago I had treatments for severe depression.
Since then, I can’t remember major blocks in my life.
I used to be very organized and detail oriented, now I shuffle papers on my desk at home (i can’t get a job) and don’t know what to do with them, or can’t deal with them.
Is there anything that can be done?????

I too do not know who I am. I have lost my interest in anything that I was interested in before.

Karen

LimorFebruary 9th, 2008 at 3:20 pm

Hi Karen.

I know exactly how you feel. I could say the same things you have just said – verbatim!

I am so disgusted with my life and with who I have become that I am even more depressed than ever!

I feel completely hopeless that my life will ever change.

I feel as though I have returned to childhood, relying on family and others to take care of me because I have lost the one, most important aspect of my life – my independance!

Not only do I not know what to do with my life; I, like you, can’t get, keep, or deal with a job. If I finally get one I can’t keep it. I can’t even handle it. Yet, I still try and apply for jobs all the time, knowing full well it’s pointless.

I had to leave my house, rent it out, and move in with my mother – who is tired of having me living with her. However, for fear that I might hurt myself or have a manic episode, they are afraid to have me out of their supervision.

On the one hand, I am lucky to have people who care. But on the other hand, I am reduced to the state of a child.

I am tired of taking medication. The meds make me feel even more like a zombie. Yet, what can I do? There is no other alternative that I know of…

Anyway, your comment just touched a point in me that made me feel that at least I wasn’t alone in all this.

Sometimes I wonder if I’m just not trying “hard enough” to “get better”, but after reading your comment, I feel a little better with the justification that I am not the only one whose life has been ruined by ECT.

OMGJuly 30th, 2010 at 12:34 am

I think that ECT is a great way to DESTROY PEOPLE’S LIVES!!!! It almost killed my friends father and tore her family apart and he had memory loss and awful side effects that left him almost paralysed. The BIOLOGICAL EFFECTS are ENDLESS!!!!!! I can’t stand it……… I think that it isn’t worth the thousands of dollars to do so, and i can’t believe it is worth the time, it ruins EVERYTHING!!!!!!

Cathy DoeSeptember 1st, 2010 at 1:44 pm

Well, I have to put my two cents in………. I agree with some of what all of you say. I’m still going thru ect treatments. I have a panic attack and hyperventilate each time I get onto the table. They decided after my last one that they will try sedating me as soon as I arrive for the treatment. Do I want to go thru this? Hell no! It sucks! But if I hadn’t, I wouldn’t be here. My depression has been here for years, meds hardly work any more. At one point, I was convinced that I could get my husband to help me plan my “death” so he could get my life insurance. I’ve read some things I’ve written when I was really and truly at my end, and I don’t ever want to go there again. I wont survive it. Yes, I have the memory loss. I get lost going 2 blocks away. But, I also don’t remember what that deep depression felt like, unless I force myself to think about it. I hope they start researching the side effects of the treatments. They need to. But I’m grateful they have helped me past my hole. That’s the only way I can think to describe it. Thank you all for your comments, though. It’s nice to know I’m not alone, or “unusual” in the things that have happened to me since the treatments!

Joyce RuanoSeptember 5th, 2010 at 3:19 am

I to went through a year and a half of ECT, was told the memory problems would just come back in a couple weeks. It’s been over 2 yrs and nothing has come back. I can’t remember vacations,friends,places I lived or just what I was like. My concentration is horrible,can’t read or follow a movie very long. The worse part is without the memories you can’t even start to find things that youst to give pleasure. There isn’t the laughs,tears.fears or excitement. No up’s and downs. Just straight line with no wiggles. My doc showed me a new treatment called TMS(transmagnetic stimulation) that she thinks will help me get my memories back. Non evasive just sit in a chair with a magnet on your head a few times a week.Not FDA approved so it costs a fortune out of pocket.Has anyone tried it?Did it help?

JuliSeptember 5th, 2010 at 2:23 pm

Any doctor who tells you TMS will BRING your memories back needs to be reported to the AMA & APA. It’s used FOR DEPRESSION, not memory recall.

Bob C.March 30th, 2011 at 12:50 pm

My wife went into depression and no Meds would work so they did ECT. We were told that 8-12 would fix the problem, well it didn’t and they ended up doing 18. My wife now sit in a chair and says “my memory” ask her any question she answers yes. Another thing she says “I’m done” It’s been 3.5 years of hell. And people wonder why there are so many murders-suicides.

AyeletApril 16th, 2013 at 3:07 pm

it has been 3 years since i did ect. i dont remember many things from my past. just this week i bought something and i forgot what i needed it for. my husband tell me important things and i forget.
ppl say to me hello and i dont remember who they are.
the saddest thing is that i dont remember my second child’s first years. i see pictures and i want to cry.

my psychiatrist tell me that the memory loss doesnt last more than a year after the ect… go figure.

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