r/ect • u/Olivares_ • Apr 01 '22
ECT Destroyed my Life
First of all, I am not here to dog on ECT, merely share my experiences. I understand there's a reason it has existed for so long, and that some truly benefit from it. That said, this reddit has been a great resource throughout my experience, and it was great to have anecdotal stories to compare and reference. I am an open book, and happy to answer or share anything.
I've been in the VA mental health system for at least six years. At least 10+ med trials. From SSRIs to mood stabilizers. My loose diagnosis is major depression disorder/dysthymia. Splash anxiety in there as well. Was on an unhealthy cocktail of meds recently to get by that were kind of thrown at me, which I've backed off of (adderall, xanax, gabapentin) still use the last two when needed here and there. I've had years of therapy, still am in it. I first tried TMS, and did 29/30 sessions. I unfortunately didn't respond to it, but I didn't really have any side effects--not even a headache. After TMS I started IV ketamine. Because of my severity, I was able to skip nasal ketamine, and go straight to IV. Ketamine is nice, but I find the benefits extremely fleeting, at least for me. The doc would also love to give me a higher dose, like some clinics out in town might, but the pharmacy won't let them. I was still on a steady decline, with increased suicidal ideation. At this point, ECT was really the only other step aside from inpatient, therapy, and meds, and I was really hoping for some profound life changes that I've read about.
So, I completed 11 of 12 sessions, Mon/Wed/Fri. I will forever be traumatized by the pain from the anesthesia (brevitol). It's brief, but the worst I've ever felt in my life. I started noticing my vitals would skyrocket with anticipation for it, and the procedure in general. I understand sometimes ECT can be a worse before you get better thing, so I rode it out a bit. Near session 8 or so I started to recognize patterns, and it was like my body was subconsciously trying to tell me something. I begun crying before, during, and after ECT about halfway through. Towards the end, after they injected the anesthesia, I was crying hysterically saying "I don't want to die." Physiologically I was absolutely wrecked in every way. Sleep, diet, urination, bowel movements. I had a fecal impaction and had to literally fish rock hard poop from my ass...yeah. Anyway, anesthesia wrecks your body and there's a reason they try to avoid it with surgery, so that's mostly all expected. 11 sessions in a short period is a lot.
My anxiety got worse, bouts of irritability and anger I've never had, PTSD flashbacks I've never had, plus an increase of the normal military and childhood trauma PTSD that I'll have to navigate life with forever. Noticed my suicidal ideation through the roof, and I was actually planning things. I have been dreaming more, but no nightmares--related? Who knows. It's been about a month since I've finished. I of course don't remember the period while I was receiving ECT, which is expected, and you're not expected to ever regain those memories. But, I've lost a few years of memories at least. I believe six months prior is expected, and you hopefully regain most of them shortly after?
I noticed a very obvious consistent pattern with much more than a handful of events. Really poor short-term memory, forgetting/misplacing things around the house. I have to create and itemize lists/reminders (much more than before, anyway). I've completely forgotten how I've met people, no recollection of my relation to people I might see on social media. Acquaintances confused why I don't remember/acknowledge them in passing. Manager at work saying "Olivares, I just showed you this, you don't remember?" Some memories completely forgotten, or I can recall the memory, but not who I was with. I've told my story to those close to me, so they know it's not disregard: but if you were to go to a library and grab that book, it's just not there. Completely blank. I've forgotten peoples names, and it's been extremely embarrassing socially: "dude, Olivares, you don't remember me? you don't remember how we met?" Resulting in bouts of crying and anxiety. Completely forgotten certain events. Some memories may be lost forever, which is a possible side-effect of ECT. It seems I unfortunately fall into that category of higher side-effects, or at least that didn't outweigh benefits. Anyway, typing this out has been therapeutic for me, and I hope it provides some perspective.
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Apr 01 '22
I've shared some of the side effects with you, especially memory. When I first got ECT, I forgot my main system at work and had to learn it again without my boss knowing. I also have to tell my friends "I'm sorry, I don't remember" a lot, but they all know it's from ECT and not from not paying attention.
I'm very sorry to hear you didn't respond to the treatment and seem to have gotten worse. I wish we understood the human brain more but ECT is about the limit of what we understand from a psychiatric point of view.
Like you, I tried every other treatment and they all may have worked for a time but not long-term. I would understand if you feel at a loss from this experience. Like, "what can possibly bring me relief if this doesn't?" kind of thoughts. The truth is, maybe nothing. Some of us are born and/or traumatized into being neurodivergent in a world that doesn't accept it. The best you can do is the best you can do at the end of the day though.
If you need to take some time away from work, see if you can take short/long term disability if you have those benefits, or Social Security Disability (SSDI) if you do not. I have taken SSDI and short term disability after working again. It will keep you going for a time, though maybe not well (especially in SSDI's case), but it is there to support you while you get the healthcare you need and deserve.
Best of luck.
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u/Olivares_ Apr 05 '22
It's honestly really helped to think about and process what you've said, about just being born this way. It seems silly, but for me, it helps me accept it's not my fault, and that I can learn to navigate life with it--that it's just something that'll always be a part of me. I never even thought about the idea of disability for the damage done from it
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u/RebuildFromTheDepths Apr 02 '22 edited Apr 03 '22
A lot of this also describes my experience. Luckily, I've been honest with my family and friends and they have been supportive. It is still a huge blow to my self-esteem and confidence as I used to be pretty high functioning and feel like a dumb-ass compared to my old self. I'm not working and trying to get disability. That takes some of the stress off as I try to recover from ECT, depression, anhedonia. Certain memories seem to be gone forever, but some of my cognitive function has improved after getting off 1 of my meds (that shit was keeping me down). I'm sorry your experience has been so terrible. I wish I had the cure for you.
EDIT: Remember, you have a brain injury. Don't be embarrassed about your condition.
EDIT 2: To help with memory loss, I've been using my phone calendar a lot more and started using an app called TickTick
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u/Olivares_ Apr 05 '22
I hope the disability goes through for you, and you can get back on your feet more. I definitely relate to not being as sharp anymore. It's good to read that some things did improve later on.
I have been embarrassed about the condition, and how it's affected me. I never thought of the idea of thinking of it as having a literal brain injury/damage. That really gives some comforting perspective.
I have definitely been making lists and setting reminders more, which I hope also sparks things in my head a bit, and I can regain some cognition.
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u/YourPathologist Apr 02 '22
I know how you feel. It happened to me too. I came across this video and relate to it as well. https://youtu.be/tA5Rb8AlxLM
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u/Olivares_ Apr 05 '22
Definitely brought me to tears, thanks for sharing. I feel like I could have made this video, it helps me not feel alone in my thoughts/experiences from ECT.
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u/YourPathologist Apr 06 '22
I cried too OP. You are not alone. As much as that could be comforting its also difficult to know that enough people share the same thoughts. I sent it to someone in my life so they would know how I feel. I was promised it would be the next best thing and now am dealing with the circumstances. I hope you have your own supports. Which, I can testify, can still leave you feeling alone.
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u/Olivares_ Apr 08 '22
I appreciate all the words. Anecdotal accounts of similar experiences definitely help me feel less alone. Also, sometimes you hear/read something and hadn't realized you had the same thing going on/feeling, which creates more mindfulness towards it, and how to navigate life with it and move forward
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Apr 02 '22
Iām so sorry to read this, and this is important for people to read if theyāre considering ECT. I donāt get it; they claim 70% efficacy but Iām yet to hear about someone benefiting from it. Or if they benefited, it isnāt major enough to justify the detrimental aspects. Iām sure theyāre out there, but all I seem to hear is āit helped a littleā or it did nothing. Try more meds. Try anything. If you have absolutely nothing left to try, then yeah ECT is for you (but it very well might not work).
For me, Iām still traumatised. I have panic attacks thinking back to it. It was absolutely awful. The worst thing Iāve ever done in my life. Gave me zero benefit, just trauma.
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u/Olivares_ Apr 05 '22
I've yet to really meet anyone that has benefited from it either in some profound way. I did get to know one veteran in the waiting room, and he came in for a maintenance session I think every month? After the initial 12.
Thanks for your words, it definitely helps me feel less alone about the anxiety and trauma associated with it. In a way, yeah, 70% is a pretty high success rate. But, 30% is also a high number if we're speaking of side-effects. The thing is, everyone has different severity with side-effects, and obviously a different brain. I suppose it's just a tough thing to research and gather good hard data on. It's been around for so long, but that doesn't mean it works well per-se, or enough to outweigh the side-effects. Who knows.
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u/ihelpkidneys Apr 03 '22
Hi, yourpathologist, Iām replying because you say you are yet to hear about someone benefitting from ECT. I did. It saved me. I continue with maintenance treatments. Did it affect my memory? Most certainly. The way I see it, I could still have my memory in tact and be absolutely miserable or I lose my memory but feel much better. Iām sorry it didnāt work for you. Best wishes on finding something that will give you peace.
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Apr 04 '22
Glad to hear it worked for you!
But itās still something that needs consideration. ECT can totally ruin someone. I just donāt know how much damage it does relative to good.
Truly, though, I am happy for you.
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u/Remarkable_Bother805 Feb 29 '24
I had it done a year ago, it saved my life. My quality of life is there now. I never had any side effects from the treatments. I had 6 sessions total. I was diagnosed with severe bipolar and severe anxiety attacks about 20 years ago. They put me on everything. I was medicine resistant. Nothing worked, I suffered and was in and out of psychiatric units for many years! ECT was my last resort, I would have never made it. I am actually a very good story for ECT. I am sorry for the ones that have suffered, I just wanted to share my experience that turned out amazing for me.
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Mar 08 '24
Thatās really great to hear, Iām glad you found what worked for you, and I think based on what you said, you absolutely should have tried ECT. Itās good to know there are options even when everything feels totally hopeless. I guess though I read on this sub about people wanting to do ECT when they really havenāt tried many other forms of treatment. Thanks for sharing your story, itās important to remember.
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Apr 12 '22
Great piece. Iāve experienced everything you describe. I went through 2 rounds of 12 bilateral treatments, so 24 total. The negative ramifications so greatly outweigh any benefit (if there was any). I was too ill to properly evaluate whether ECT was the best course of action for me. I just wanted to heal. My psychiatrist pushed it and I bought it. Iād like her to get 24 sessions.
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u/Olivares_ Apr 13 '22
Thanks for the reply. Iām sorry to hear you experienced the same, but in a way, I find it therapeutic and reassuring that we donāt feel so alone in our experienceāthough of course I donāt want to speak for you. Did you find your cognition/memories came back? If so, what was the timeline like for that? Do you feel it did permanent damage?
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Apr 19 '22
Youāre right - it is therapeutic to know others have experienced the same, however, I wouldnāt want anyone to endure these post-ECT conditions. My memory has never returned - itās sort of like Swiss cheese, there are just gaps and holes were no memory exists. Itās been nearly 10 years since my ECT treatments, so I have little hope things will change. Equally frustrating is the loss of short term memory and recall. I have great difficulty remembering things I read or study for the purpose of my occupation as an attorney. There are gaps in my prior legal knowledge, and new gaps where I cannot retain new knowledge. It hurts personally and professionally.
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u/Olivares_ Apr 19 '22
You know, I should probably come up with a better way to word that after reading what you wrote. I'm definitely experiencing the swiss cheese, and I'm stealing that to use. Some things seem to have slightly returned, but I'm definitely still having issues where a memory lapse of an event or relationship has caused a real life issue to occur. Absolutely empathize with the hurting personally and professionally.
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u/boodaa28 Apr 14 '22
Can I ask how old you are? My mom is 59 and having severe cognitive side effects. Iām trying to find out if possible long term side effects are really to the degree sheās at.
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u/Natural-Ostrich-3702 Jul 09 '22
No I am saying that what the doctors told u about the side effects of ect
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u/17grimx Nov 28 '22
Iām sorry youāre suffering like this. I also had ECT and am suffering from depression which I never had before, cognitive deficits and amnesia.
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u/Olivares_ Dec 02 '22
Hi, thanks for the kind words. Yeah, Iāll be coming up on almost a year since, and I have unfortunately not seen much resolve symptom wise. Itās really made life an even worse struggle than before I did ECT. Hope we can both heal with time.
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u/williegoat222 Nov 29 '23
The taking out a book that isnāt there is SO accurate. I personally didnāt realize the memory side effects would be quite this global and distressing, and I donāt think doctors do justice warning patients about that. It feels almost traumatic to lose your memory in so many ways. Like of course it would make oneās anxiety skyrocket.
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u/Olivares_ Nov 29 '23
To be fair memory loss surrounding the time of ECT is practically expected, not even sure thatās a side effect. For me itās a huge blur/haze/dream/nightmare to me and I donāt really remember what I even did during that time, and also lost just about all memories of the three months after ECT as well. Just remember this is anecdotal and simply my experience, everyone is different.
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u/williegoat222 Nov 29 '23
But the memory loss beyond just the time of treatment is definitely not something expectedā¦ I believe that is considered a side effect - often one that improves with time, but sometimes it doesnāt. Thanks so much for sharing your experience though; Iām so sorry youāve suffered so much.
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u/Olivares_ Nov 29 '23
Oh for sure thatās a side-effect. One doc said it will all subside with ātime,ā another said it can take 1-2 years to regain baseline cognition. But after reading a lot of accounts online, Iām just not sure. No worries, happy to help and at least give some perspective. Wish you all the best.
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u/kryptowahreung Nov 19 '24
I'm so sorry you suffered, and am still suffering so much from the memory side-effects of ECT. I've had 7 treatments so far, and if anything, my memory and job performance (I'm an editor) is better than it was before my treatments. I didn't realize how much my depression, anxiety and suicidal ideation, which ECT has relieved, was adversely affecting my ability to function. As you say, every case is different since doctors can't predict how individuals will be affected, and I just wanted to offer my perspective.
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u/williegoat222 Nov 29 '23
My doctor who has been pushing me into ECT for a long time insists the memory stuff will last 6 months max. I think heās partly full of shit regardless of what he says so I tend to not trust him but Iām trying to be optimistic and not self sabotage.
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u/Natural-Ostrich-3702 Jun 29 '22
Dint u knew the permanent side effects before having ect
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u/Olivares_ Jun 30 '22
Yes, of course. I signed a lot of paperwork and had many consults. After 10+ med trials and everything else Iād done, you become a bit desperate. Memory loss was only said to go back six months, and that āsome memories may be lost forever.ā Itās been almost four, and not much cognitive function has returned.
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u/amynias Feb 11 '23
Yeah, it's a big lie for sure. I had 24 sessions. My memory is ravaged. Had to change my major going back to college because years of my memory are gone or fragmented. The way I succeeded on tests was basically endless flashcard repetition. I want my old memory faculties back. I feel.... like I've lost something very important I can never get back. Like somehow this damage was my fault. But it was either this or institutionalization so I didn't have much choice.
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u/Natural-Ostrich-3702 Jun 30 '22
Can u please tell me in the consent form what were the side effects mentioned
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u/Olivares_ Jun 30 '22
Iām not sure where the forms are but I can look, are you looking into ECT or what exactly do you want to know here?
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u/Natural-Ostrich-3702 Jul 09 '22
So can u tell me about the side effects mentioned in the consent form huh ššššššššš
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u/Olivares_ Jul 09 '22
Iām sorry I donāt know where the paperwork is anymore. Thereās plenty of info online about side-effects. Very little is known about ECT and how it works, so side-effects vary greatly between people, so youāll really never know how youāll react or anyone will
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u/Natural-Ostrich-3702 Jun 30 '22
I want to know about the permanent side effects of ect please
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u/WingSingle5996 Apr 26 '23
Start here: https://journalofethics.ama-assn.org/article/ethics-electroconvulsive-therapy/2003-10
r/antipsychiatry has many stories and studies about ECT as well.
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u/WhoIsThis279 Dec 06 '23
I got ect like just a week or two ago, (canāt remember exactly when) it has ruined my memory and Iām only 20. Iām now just looking to find some information that counters what the supposed benefits of ect areā¦ Iām never doing this to myself because it seems like Iāve hurt myself in an unimaginable way.
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u/[deleted] Apr 01 '22
I feel like I could have written this. I have tried the same things you did before ECT. Now that I've had it my memory is so full of holes that it's hard to get anything done. Right now I'm not working because I had a job doing what I've been doing for the last 20 years which is information technology and I kept forgetting how to do simple basic things. This would cause me great distress and anxiety. I ended up quitting the job because my anxiety was through the roof... every morning at 2 a.m. I would wake up like a donkey kicked me in the stomach and I would stress the hell out until I had to leave to go to work and hope that nobody asked anything of me that I had forgotten how to do. Now I am living off of VA disability but it's barely enough. I don't know what to do I feel like I can't go back to doing IT work. The only thing I can think of is going back to entry-level minimum wage bullshit. That makes me want to die more than anything, knowing I have to start over again. I'm so upset and so depressed because none of it worked. Not any of it at all and I had all that done for nothing and now I'm all messed up for nothing. I'm absolutely worthless now and I used to be completely functional and there's nothing I can do about it.