[dicejam]

suddenly got the urge to find a place to post about what i'm going through because it's getting really bad and people don't really seem to understand. i'm glad i did that, because i see a lot of people here asking about ECT. my advice is to absolutely not do it.

the ironic thing is, ECT saved my life. not in the way you would think though. right around the time i started ECT, i acquired the necessary supplies to end my life. i was giving ECT a go as a last resort, but didn't really plan on giving it time to work or anything. my mind was pretty much made up that i was soon going to take my life, and i absolutely believe that i would have done it.

a couple of days following one of my first treatments, however, i had some kind of break from reality and was put in the psych ward for about a week. i was completely insane -- i had ridiculous theories regarding the answers to the universe, i felt like i was living days over and over again like in groundhog day, my entire worldview was just confusing and weird. the doctors said they had never seen ect cause something like this before, which is amazing to me. during this period, i was in enough of a fog that i admitted to my mom over the phone that i had supplies that i planned on using to kill myself and where they were. so that squashed the suicide plan. point for ECT, in the most roundabout of ways.

that was in october. i completed treatment around the end of january. my depression was pretty much the same. as far as side effects go, the long-term memory thing was hitting me pretty hard. i remembered NOTHING from the time period while i was being treated, other than a few images of myself in the psych ward and the treatment facility. i forget a ton of things that happened in the past 5 years or so. for instance, i'm a huge sports fan that could once tell you exact dates of random occurrences and the ultimate result of every season for teams i root for. after ECT, i remembered absolutely nothing that happened with any of the sports teams i root for in the last 5 years or so. i watched all the highlights, and it was like watching the games for the first time. that part was actually kind of fun, heh.

there were other interesting memory problems. for instance, i didn't know that martin luther king was dead. on martin luther king day. not only did i forget that the victim of the 2nd most famous assasination in history was dead, i was so cognitively impaired that i couldn't put two and two together and realize a man being memorialized by a federal holiday was not alive. scary. this is an ongoing problem -- no idea whether a celebrity/political figure/etc is alive or dead, even if they died before i was born.

i used to be a great writer. now, it's impossible to focus and i sometimes spend minutes trying to construct a sentence. it's a huge struggle to find words/phrasing that get my point across, and i often have to rewrite a sentence several times to get it to make sense. then i finally finish a sentence and am happy with it... and i go back and read it 20 seconds later, and it looks like it was written at a 4th grade level. the loss of writing ability is terrible... but it's also frightening that i could be in the mindset that a snippet of text i write looks good, then looks bad a minute later. it's like my brain resets and i become a different person in a matter of seconds. related to this -- i have become very indecisive and completely change my mind on things rapidly, back and forth.

used to be great with numbers, probabilities, etc. now i literally struggle to add and subtract two-digit numbers.

the short-term memory thing is a huge problem, and it seems to be getting worse. i can be on a computer, think of something i want to look up, and by the time my hands hit the keyboard i forget what the hell i went to type in. sometimes it hits me a few minutes later, sometimes it's just gone forever. if i go into a room to get or do something, there's a greater than 50% chance that i will forget to grab whatever i went in there for.

time is just completely distorted and weird. something that happened yesterday feels like it happened a few weeks ago to me, and something that happened 4 months ago also feels like it happened a few weeks ago. does this make any sense? of course not! it's almost like everything gets blanked out and reset every few seconds, and immediately gets discarded into one giant muddled past with no sense of when or what happened.

aside from all of these problems that i guess could be overcome, my state of mind is just seriously messed up. reality just doesn't feel real to me. i feel like i'm experiencing a reality that hugely differs from everyone else's, and in a way i'm right. earthly existence seems trivial to me and i just... don't care. don't care about money. don't care about sex. don't care about life. it's all just become a big joke to me. that resulted in me quitting my job (i was on leave for the ECT treatments. i most likely would have been unable to successfully do my job because of all the aforementioned side effects... but i didn't even try). i have no desire to find work, and no expectation that i'll ever be able to work again. just no motivation.

--

in closing, i don't think ECT treatments are inhumane or evil or anything. but i do think the industry has to become better informed on the realities of side effects and do a better job of expressing them to potential patients. my thinking was "memory problems? who cares, i'm desperate so i'll give it a shot." i imagine a lot of people who go through with the treatment are thinking along these lines. the thing is, you're not capable of comprehending what exactly "memory loss" means until you've experienced this. when you're basically having short-term memory lapses every second, you turn into an idiot that can't possibly get anything accomplished. when you can't remember the names or faces of people you meet, and you constantly embarass yourself by repeating yourself in conversations, socializing seems like a tall order and you stop doing it. blah blah blah, there are countless examples. i just know that if i had the choice of going back in time and stopping myself from getting ECT, i would. eventhough it saved my life. that's saying a lot.

[winter4me]

How long ago/recently did you complete the ECT?
& thank you for sharing this experience. we need to hear more from people who have been through these kind of treatments.

[dicejam]

started bilateral treatments in october, finished in january.

i'm still holding out hope that the effects will prove to be temporary, which is of course what they tell you. with how bad it's been and how much worse it's progressively getting, it's really hard for me to imagine all of this just going away someday.

it's really scary, because this is basically the only condition i know now. everything prior to the conclusion of the treatment is pretty much wiped out. so while in reality my mind had been normal for 27 years and messed up for 9 months, it feels to me like those 9 months are my entire life. it's a hard feeling to explain and i did a horrible job of trying no doubt, but yeah...

[Nobodyandnothing]

dicejam,
You said this better than I ever could. The memory loss-short and long-term is beyond terrible. I don't even remember how many times I have had ect or even what meds I am on. Doc wants me to do ect again. I don't know what to do or what to tell you.
Please take
Nobodyandnothing

[winter4me]

I am so sorry, thank you both for sharing this experience, as awful as it is----

[ThisWayOut]

it's scary stuff... and I was reading today that there are relatively little regulations and guidelines for it (though the article was for canada. I wonder how it is in the us).

[cool09]

Sorry you feel so bad. The short-term memory problems are only supposed to last while you're having it and end a month after last treatment. That's exactly what happened to me. My short-term memory came back exactly 30 days after I had ECT (x16) during entire Summer '92 (as in-patient). I had mine done in Philadelphia at prestigious Institute (Pennsylvania Hospital) by semi-retired PDOC who specialized in ECT. (It was weird. Every day I could not remember how to get to the dining room even though I had been in that hospital before.)

It dropped me to my very lowest point and I went on SSDI after that. (I think I got chronic fatigue in the hospital and my arms and legs felt like lead; trouble shaving, showering..)

I had a nervous breakdown and I think ECT slowed my racing thoughts down about 15%. (After ECT I realized that I had really been racing hard when I first entered the hospital.) A PDOC told me that ECT benefits bipolar patients more than it does unipolar depressed patients. I don't think I could do it again.

[dicejam]

just a random update. my psychiatrist talked to the doctor who administered my ECT, describing the cognitive and memory problems i've been having. the doctor said that he's never seen anything like that before, and that he doesn't believe it's possible that the ECT is causing my symptoms. his position is that ECT only sometimes leads to a brief period of short-term memory loss and surely could not be affecting me 9 months after treatment was ceased.

this, to me, is absolutely absurd. there are hundreds of accounts of people who have experienced detrimental long-term effects from the treatment, and many of their stories are similar to mine. for the doctor i basically trusted my life with to be so grossly misinformed and dismissive about something like that really adds insult to injury. the one person who should understand and/or be able to help me basically saying "you're out of luck, pal!" just makes me feel pretty bad.

memory is getting worse without a doubt... some pretty absurd stuff. if i have something in my left hand and pick something up with my right hand, i often forget the nature of what's in my left hand and spill/drop it if it happens to be something other than a single solid object. i get lost on roads in my own hometown of 27 years and somehow end up driving in circles every time i go somewhere. i'm always afraid i just missed a stop sign or went through a red light, because my memory is so short that i'm not completely sure what just happened. for all i know, i actually am missing stop lights. it's getting to the point that it's probably not safe for me to drive anymore.

another really weird one... if i'm sitting or laying down and have my eyes closed, after a little while all memory of where i am, what time it is, and whether it's light or dark outside goes away for a few seconds. i'll be laying in bed and it's almost like my brain has a 5-second experience in which i can feel myself laying on the couch and see that situation from my perspective. similarly, if my eyes are closed and the tv is on in the background, i will immediately completely forget what show it is, even if it's something i watch all the time. it takes like 10 seconds of hearing various voices talking before i have any ability to recall what i'm watching.

also, just been plagued with a lot of paranoia and weird thoughts about how the universe works lately. i know that i'm not schizophrenic, but i feel like i'm teetering on the edge of what could objectively be called sanity. all i can really do is try to laugh at the absurdity of the whole thing and hope it gets better, i guess.

I'm so sorry you are having this horrible experience. I tend to believe what your doctor said though. What you are experiencing almost sounds like a neuro issue unrelated to the ECT. Is there a way to be neuro tested...see a neurologist or have a second opinion with a psychiatrist? This isn't the "normal" cognitive impairment expected with ECT. I hope you have some luck figuring this out.

[itsmeleyreagain]

I think you guys should reject ECT. I've never been on it and never have been proposed to have it (thank God!!!!!!!!!!!!!!!) but I think it's sad in the twenty first century these ideas are still bought and people receive ECT when it doesn't work and it's unhuman. I know you might be desperate and in desperation, you take whatever they tell you because you want so desperately to get better, but that's no excuse for them. If your doctor suggests ECT, think twice, and three times, and more.

Desperation is no way to do things, I bet you. At least not in this field.

Originally Posted by itsmeleyreagain

I think you guys should reject ECT. I've never been on it and never have been proposed to have it (thank God!!!!!!!!!!!!!!!) but I think it's sad in the twenty first century these ideas are still bought and people receive ECT when it doesn't work and it's unhuman. I know you might be desperate and in desperation, you take whatever they tell you because you want so desperately to get better, but that's no excuse for them. If your doctor suggests ECT, think twice, and three times, and more.

Desperation is no way to do things, I bet you. At least not in this field.

Actually it does work quite well for many people, and it is not inhuman at all. This isn't One Flew Over the Cuckoo's Nest. Does it work for everyone, no. And patients need to be educated about the treatment and possibly side effects, but it is an option that has saved my life more than once. A close friend and my husband also had ECT with very good results.

[pachyderm]

Judging by my own reaction (not having had shock treatment; just thinking about it) I think it might be a terrible idea for victims of childhood abuse...

Originally Posted by pachyderm

Judging by my own reaction (not having had shock treatment; just thinking about it) I think it might be a terrible idea for victims of childhood abuse...

Why? I am a victim of childhood abuse and I don't see any correlation with problems.

Yes, I don't understand the correlation either unless you mean the memory loss, which some of us deal with anyway.

[pachyderm]

If as a result of childhood abuse you feel, as I did, that a parent was trying to control you, even your every thought, then ECT can be seen as an attempt to wipe out your mind completely, and replace it with thoughts totally approved of by the parent.

That has always been my reaction. I suspect I am not alone. Evidently not everyone abused feels the same way -- maybe the abusive parent did not try to control even your thoughts, or you did not feel they might succeed.

Example of something my mother would say, and what she wanted: "Obedience in thought and deed." Or was it "obedience in word and deed"? Almost the same thing to me.

And she would enforce her wishes by punishment.

Originally Posted by pachyderm

If as a result of childhood abuse you feel, as I did, that a parent was trying to control you, even your every thought, then ECT can be seen as an attempt to wipe out your mind completely, and replace it with thoughts totally approved of by the parent.

That has always been my reaction. I suspect I am not alone. Evidently not everyone abused feels the same way -- maybe the abusive parent did not try to control even your thoughts, or you did not feel they might succeed.

Example of something my mother would say, and what she wanted: "Obedience in thought and deed."

That is not at all what ECT does.

[pachyderm]

Originally Posted by 1914sierra

That is not at all what ECT does.

That may not be what it did to you.

I remember in one mental ward I was in, an old woman was being given shock treatments, and she was terrified at what was happening to her. She begged not to be given any more. I heard her pleading. The staff paid no attention whatever, and simply continued giving her shocks. I felt totally hopeless because I could see no way of helping her. Her husband obviously had no idea what to do, and was just following what the "authorities" said was best.

Not all mental health treatment is benign.

Originally Posted by pachyderm

That may not be what it did to you.

I remember in one mental ward I was in, an old woman was being given shock treatments, and she was terrified at what was happening to her. She begged not to be given any more. I heard her pleading. The staff paid no attention whatever, and simply continued giving her shocks. I felt totally hopeless because I could see no way of helping her. Her husband obviously had no idea what to do, and was just following what the "authorities" said was best.

Not all mental health treatment is benign.

No one said it was, but you are talking of one experience of what was happening to one person. I have personally been through this twice, my husband once, a good friend of mine once, not to mention the number of patients have had the pleasure of knowing over the years who were also going through ECT. You talk about changing peoples thoughts and purposefully wiping out peoples' memories and replacing them. That is so far from what happens that it is honestly irresponsible to spread that kind of misinformation.

Yes, many patients experience temporary short term memory loss. A small percentage experience longer term memory loss. But replacing thoughts with other thoughts? No, that does not happen.

[pachyderm]

Originally Posted by 1914sierra

No one said it was, but you are talking of one experience of what was happening to one person. I have personally been through this twice, my husband once, a good friend of mine once, not to mention the number of patients have had the pleasure of knowing over the years who were also going through ECT. You talk about changing peoples thoughts and purposefully wiping out peoples' memories and replacing them. That is so far from what happens that it is honestly irresponsible to spread that kind of misinformation.

Yes, many patients experience temporary short term memory loss. A small percentage experience longer term memory loss. But replacing thoughts with other thoughts? No, that does not happen.

I think you underestimate what happens with some forms of treatment. And what I said was that the reason I react to ECT the way I do is that I connect it with what happened to me as a child. I did not say that ECT by itself replaces thoughts. I do think that it could result in that, though, if a person thought that were its intent.

BTW, I can relate another experience of being in a hospital where shock treatments were the norm. Another person who was obviously terrified, and sobbing in the night. Actually, without really examining me, the doctor there "offered" me such treatment. Because of my childhood, I suspected I could not refuse. When I said no, and they did not give me the treatments anyway, I was surprised.

I think it is irresponsible to suggest that there can be no major drawbacks to ECT. I was trying to suggest that it might be a bad option for a certain class of patients.

Originally Posted by pachyderm

I think it is irresponsible to suggest that there can be no major drawbacks to ECT. I was trying to suggest that it might be a bad option for a certain class of patients.

I have seen no one here who has been through ECT say there can be no major drawback to ECT. In fact, we tell people about the possible memory issues and to become as educated as possible about the treatment before making that decision. None of us, as far as I have been aware, have said ECT has not possible side effects. We have not been irresponsible in our statements.

[pachyderm]

Originally Posted by 1914sierra

I have seen no one here who has been through ECT say there can be no major drawback to ECT. In fact, we tell people about the possible memory issues and to become as educated as possible about the treatment before making that decision.

I have seen discussions here of possible memory problems -- but never discussions of the kinds of things I brought up. It may be very uncomfortable to hear stories of such fears as I have had, or of observations of other people's frightened reactions to ECT -- that does not mean they aren't real for some people.

That's the thing. Thought replacement is a fear, but not the reality of the treatment. This website is dedicated to support, education, and hopefully lowering the stigma of mental illness and treatments. To say the ECT does things that it doesn't do at all, to spread misinformation, is not at all helpful to those considering ECT as a treatment.

I am not saying people aren't afraid of ECT, or that they don't have frightened reactions to ECT, but you are making a claim of actual thought replacement -- intentional thought replacement -- on the part of physicians. That IS misinformation.

Electroconvulsive Therapy (ECT): Q&A with Sarah Hollingsworth Lisanby, MD - DukeHealth.org

Here is a pretty objective article about ECT's benefits and risks.

[pachyderm]

Originally Posted by 1914sierra

That's the things. Thought replacement is a fear, but not the reality of the treatment. This website is dedicated to support, education, and hopefully lowering the stigma of mental illness and treatments. To say the ECT does things that it doesn't do at all, to spread misinformation, is not at all helpful to those considering ECT as a treatment.

I am not saying people aren't afraid of ECT, or that they don't have frightened reactions to ECT, but you are making a claim of actual thought replacement -- intentional thought replacement -- on the part of physicians. That IS misinformation.

No, I don't think I suggested that doctors could actually replace thoughts. Though some would like to.

I don't think you can see that such wishes are even possible. My fears, and those of others, may be out of proportion to likely reality, but to dismiss them as totally false will not help.

I'd like to hear if anyone else at all here understands what I am saying and has similar thoughts as I do.

Therapies for mental illness can have results that are catastrophic for patients. They did for me. Was this all "my fault"?

But, I suspect that my story is too frightening for some. They don't want to admit that it is possible.

Never mind. You don't "hear" what I am saying. You've decided I don't acknowledge peoples' fears or the real possible side effects of ECT. Not at all what I've said. You talk of "wishes" and the I am dismissing peoples' feelings, which I have not done. You say I am denying problems for some; I have not done that either. Never mind.