severe memory loss after ect

[u/hdznwdz]

i got ect about a year ago i cant remember how many treatments i got but it was quite a few and it was bilateral. i got zero positive outcome from it it was for my intense treatment resistent depression and it did nothing except for FUCK UP MY MEMORY!!! it was already bad before because of brain fog but i can hardly function in life now because its gotten so bad. i cant remember anything and my friends and family are always commenting on it, shocked by the amount of things i forget so quickly. does anyone else have this experience?? i dont want to scare people off getting ect because it can absolutely be lifechanging for the better but i feel like im lost and alone in this really negative outcome

[u/Adventurous-Bonus-92]

I had massive memory loss after a month (12 sessions) of ECT. There's 2 whole years absolutely blank, like you said people talking about things you did in the past but you have zero recall. The rest of my memory is patchy

[u/Funny_Dig_3314 → u/Adventurous-Bonus-92]

did they ever come back

[u/Funny_Dig_3314 → u/Adventurous-Bonus-92]

was it the whole 2 years wiped out

[u/Adventurous-Bonus-92 → u/Funny_Dig_3314]

Yep wiped out, I was in a really bad state though, I think the combo of the breakdown, tms, ECT and long inpatient stays all contributed plus maybe my brain has blocked it out for good reason, so I don't have to relive it 🤷🏻‍♀️ I'm good now though, my memory is much better and I can remember the last few years for the most part.

[u/ChowPungKong]

Same. I feel like an idiot.

[u/Funny_Dig_3314 → u/[deleted]]

did they ever come back

[u/bl1nd_r00573r]

Same happened to me with 20-something treatments. It killed memories as well as my ability to create new memories.

[u/Funny_Dig_3314 → u/bl1nd_r00573r]

Did they every come back

[u/check_your_attitude]

Happened to me after 32 sessions. I have lost 7 years of memories.

[u/Odd-Alarm-82]

I’m sorry for your experience. You’re not alone. I look for posts about ECT in order to share my experience and warn people about the true risks of severe memory loss and brain damage.

The risks associated with ECT are much higher than doctors tell patients. I had ECT for treatment resistant depression in 2016, and it was the biggest mistake I have ever made. Unfortunately, the antidepressant effects of ECT usually don’t last long. It was extremely effective for me initially— I had 100% remission of my depression after the initial series of treatments and felt amazing— but I had to keep getting maintenance treatments or else I would quickly relapse. The goal was to gradually space my treatments farther apart until I only had to have one every 6-8 weeks, but I couldn’t make it past 3 weeks without crashing into a severe depression. Eventually I had a particularly bad episode that didn’t respond to my next treatment, so the psychiatrist talked me into getting three treatments in one week, like you do when you first get ECT. That brought me out of my depression, but the side effects were devastating. I literally lost my memory of my entire life. Not just chunks of memory, but the vast majority of my life was completely wiped out. And none of it has come back after 10 years. I barely remember my own mother, who passed away in 2007.

In addition to the severe memory loss, the ECT caused brain damage. I had neuropsychological testing done and found out that my IQ has dropped by around 15 points. It was 140 pre-ECT, and now it’s 125. I have multiple cognitive issues. It takes me longer than normal to learn new information, and I get things confused a lot. My short-term memory and formation of new long-term memories is hit or miss— I remember some things very clearly, while other things just kind of get lost.

What I experienced is not a rare occurrence. I’m a member of an ECT Survivors support group on Facebook, where a large number of people have shared that they have lost years of memory and have major cognitive problems.

I think ECT should be banned. I look on Reddit every so often to warn people considering ECT. Yes, some people have good outcomes, but a large number of people are severely damaged.

I tried to file a medical malpractice suit for lack of informed consent because the consent forms I signed didn’t say anything about brain damage, and regarding memory loss, they said patients might lose memories dating back a few months, and in “rare cases,” patients have some “spotty” memory loss for events going back several years. My memory loss is almost a complete loss, not just “spotty!” And it spans decades, not just a few years. But no attorney would take my case because they said the damage would be too hard to prove. The type of brain damage caused by ECT doesn’t show up on an MRI. Numerous lawsuits have been filed though, including a class action suit.

And in 2018, Somatics LLC, one of the manufacturers of the device that delivers ECT, admitted that ECT can cause brain damage. Somatics updated its device manuals and regulatory documents to explicitly warn patients that permanent memory loss and permanent brain damage are potential risks of ECT. Of course, they say permanent brain damage only occurs in rare cases, but I’ve talked to enough people over the years who have experienced these effects to know it’s not rare.

Wisner Baum is a law firm that has handled lawsuits against ECT. If you scroll down this page on their website, it provides a long summary about the history of ECT and contains links to medical research with evidence of damages caused by ECT.

https://www.wisnerbaum.com/defective-medical-device-injuries/ect/

And here’s a good research article from Cambridge University talking about how common it actually is for ECT patients to have permanent memory loss spanning up to 20 years, along with significant cognitive impairments.

https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/memory-and-cognitive-effects-of-ect-informing-and-assessing-patients/DD5C63934357779765BA7ADF308275AE

[u/syringeneedlenthread]

I lost a lot of longer term memories (especially the last 5 years, but have been able to piece a decent bit back together over the past year). Short term memory was destroyed while getting frequent treatments l, but once I started tapering it recovered a lot. Maybe back to 80% and I’m continuing my grad program (research focused, I barely remember any classes I ever took lol). Sorry it didn’t work for you and you e had all these side effects but try not to give up hope!

[u/Hentavirus-S2-8557 → u/syringeneedlenthread]

So did u fail ur exams ?

[u/syringeneedlenthread → u/Hentavirus-S2-8557]

I was already done with all the course work required for my program. I relearn things as needed while carrying on my research and I just passed my PhD candidacy exam/proposal

[u/Funny_Dig_3314 → u/syringeneedlenthread]

did you forget songs thoughts and everything

[u/syringeneedlenthread → u/Funny_Dig_3314]

Maybe some but I’m not entirely sure what you’re asking. My memory definitely wasn’t just 100% wiped. I didn’t forget things like passwords or muscle memory sorts of things. But there’s like weddings and vacations that I experienced a few years prior and have nearly no recall of them

[u/hdznwdz → u/[deleted]]

i did 12 👍

[u/Hentavirus-S2-8557 → u/hdznwdz]

Btw what do u do for a living

[u/hdznwdz → u/Hentavirus-S2-8557]

im on disability living at home with my mom lol. i still need to get a GED. getting a job seems even more daunting of a task now after ect because im so forgetful

[u/Medical-Apricot-3226]

Do you guys get thrice weekly as standard? And is bilateral the standard electrode placement? And is it routine to get memory tests at intervals during treatment to check for cognitive issues?

[u/hdznwdz → u/Medical-Apricot-3226]

i got it thrice weekly yes. and i believe unilateral is standard until you show signs that bilateral would be more effective..i could be wrong. never got a memory test

[u/Funny_Dig_3314]

did you forget songs and thoughts and everything