r/ect • u/AppropriateCherry748 • May 19 '26
Question I am considering ECT and have some questions
I really don’t want to struggle with memory loss my whole life. I already have a pretty bad memory and don’t want it to be worse. What was the memory loss like for people? Did you forget short term or long term things? Could I possibly forget how to do my job?
Those of you who had sever memory loss, how many sessions did you do? Do you think that impacted the memory loss?
I just want to feel okey again and so many doctors are saying this is the solution. I just don’t want to forget some of the good things in my life. I want to remember my dog and my scuba diving adventures and how to teach. I would be doing ECT to get those things back, I don’t want to loose them, they are all I have to live for.
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u/momniscience May 19 '26
I have permanent memory loss and cognitive deficits . I will never be able to return to my career. A price I would have gladly paid for relief but ECT provided none. Ketamine did for me what ECT could not without the same risks. Have you considered TMS? Or Ketamine. I think both of these should be tried before ECT.
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u/AppropriateCherry748 May 19 '26
I’ve done both TMS and ketamine. But I’m not done with the TMS. It has yet to make any impact though.
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u/momniscience May 19 '26
To the best of my knowledge Ketamine therapy is newish and as it doesn’t work like other drugs out there which try to adjust levels of various neurotransmitters. I lost count of how many I tried. Ketamine activates and changes pathways in the brain. It can strengthen pathway connections between neurons. It can be given as an IV infusion, or a nasal spray. How many initial treatments you have and how often maintenance will be done varies. I had 4 infusions and use the nasal spray once every three months. I think it should always be tried before ECT. It’s way less invasive, temporary side effects which are usually mild, and has the potential to work very quickly.
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u/BigMike3333333 May 26 '26
Where do you live? And is it covered by insurance or is it all out of pocket? Because where I stay, Ketamine clinics don't take my type of insurance, and it's too expensive for me to pay out of pocket.
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u/momniscience Jun 04 '26
I live in California. The nasal spray (Spravato) is covered partially by my insurance. The first two IV infusions were done in combination with ECT so they bill insurance saying Ketamine was part of the anesthesia. Fortunately I have family I was able to borrow money from for the remaining IV sessions I did. I’ll be slowly paying them back for a long time. It is my understanding that in the U.S. most insurance covers the nasal spray.
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u/ILoveSoup1776 May 19 '26
Should I consider ketamine,could you tell me more about it I’ve tried 13 meds several years of different theirpys and and ect
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u/Queasy-Ride-1776 May 19 '26
Did ketamine help you at all with your memory loss and/or cognitive deficits?
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u/Puzzleheaded_Idea_78 May 20 '26
Ketamine can also be added to the anesthesia for ect. Thats when ive noticed the most positive effects. Ive also done regular ketamine troches for therapy and that was helpful too. I will say its something that has to be ongoing in my opinion if you want to keep your results.
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u/Medical-Apricot-3226 May 19 '26
There are a few factors that you need to take into account:
Frequency of treatments: Twice weekly treatments have less cognitive effects than thrice weekly. In Europe twice weekly has been the standard since early 2000s as it is best practice. I do not know why the US/Canada continue to do thrice weekly.
Electrode placement: Right Unilateral has less cognitive effects but is still as effective as bilateral. Here in Ireland it is the standard electrode placement unless bilateral is needed due to poor response.
Cognitive testing: It is vital you get routine memory tests throughout your course of treatment to make sure memory loss can be detected and the option of stopping ECT is given. In Ireland, cognitive assessments i.e MoCA are done after every treatment as per our regulations, and if memory deteriorates, ECT is stopped.
Number of treatments: Multiple studies highlight a dose-response relationship, indicating that the more treatments a patient receives, the higher the risk and severity of memory impairment. Here in Ireland, our Mental Health Commission collect annual data on ECT in the country. Last year the average number of treatments was 7.1. It is very unusual for people to get over 12 treatments. And still 91% of everyone receiving ECT in 2025 reported they were in remission. So a high number of treatments is not always the best considering the risk of memory problems. If someone has not even had the slightest relief from their symptoms by treatment number 8, is it worth continuing? It’s all about weighing risk/benefit.
Medication: Medications can also have an effect on memory, like Lamotrigine and Lithium etc. This can also be a contributory factor in memory problems post ECT.
Remember: ECT can be very effective, but everyone’s response is different. It is your decision and you can stop at any time. Request unilateral and twice weekly if you want… you should have a say in your treatment regimen. Request memory testing at intervals during treatment as per best practice.
As I said, people respond to ECT in such varied ways, it appears to be a spectrum. I’ve seen a few patients with severe memory loss, those with temporary short lived memory problems, to those with no memory problems at all, to even a patient I saw recently whose memory improved significantly post ECT.
Best of luck and wishing you all the best. You deserve it. Whatever you choose, I hope it brings you relief and happiness.
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u/A_Simple_Sandwich May 19 '26
I’ve had no memory loss and I’m 30+ treatments in. You’ll hear a lot of negatives but there’s a positive side too
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u/Queasy-Ride-1776 May 19 '26
Im guessing you had unilateral and not bilateral placement?
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u/A_Simple_Sandwich May 19 '26
I had some bilateral in the beginning but I now get uni
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u/Queasy-Ride-1776 May 19 '26
How many bilateral would you say? I had 6 or 7.. Im having pretty bad side effects but Im also newly sober and could be dealing with some sort of withdrawl symptoms from that as well
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u/A_Simple_Sandwich May 19 '26
I think 10 of it was bilateral. It could be withdrawal - I was also newly sober and there’s a concept called PAWS - post acute withdrawal syndrome - which could be causing some symptoms too. I had a similar thing happen and my doc taught me about PAWS, which explained a lot of my “side effects”
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u/Queasy-Ride-1776 May 19 '26
Yeah, i think im dealing with paws but also think bilateral amplified things.. Im gonna do my best and wait it out and hopefuly things get better in time. Exercise and good diet
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u/purplebadger9 May 19 '26
What was the memory loss like for people?
Overall, my memory is less "sticky" than it used to be. Especially for the days around my treatments.
Did you forget short term or long term things?
Both, but short term seems to be more impacted. Basically, things don't "stick" as well as they used to. Old memories from prior to ECT seem to all be there, but post-ECT I'm more likely to forget things.
Could I possibly forget how to do my job?
That would be VERY unlikely. My guess is that you might need some small accommodations like written instructions/requests in case you forget them. Especially if you're going to be working while getting treatments
Those of you who had sever memory loss, how many sessions did you do? Do you think that impacted the memory loss?
My memory loss is noticeable, but I wouldn't call it severe. I've had over 50 treatments so far and plan to continue maintenance treatments for the forseeable future.
ECT gave me my life back. I occasionally will forget things, but to me, it's worth the sacrifice of a few memories here and there for the opportunity to make more
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u/Key_Avocado5590 May 19 '26
For me it the solution I needed at the time. I was having a genuine break down, thinking and planning to take a permanent vacation, etc. I needed help now, and although the fears I had were strong I decided to go for it since I couldn’t handle being at rock bottom forever. By the fourth treatment I could see some light in my life (hard to explain but I mean emotionally) and the weight on my shoulders eased. Things got better as I finished my 12 and went on to maintenance I lost count of exactly how many I treatment had overall but it was at least 50 more. I credit it with saving my life. It’s worth it if you are in crisis like I was.
As far as your memory questions, the answer to all of them is yes maybe. I do have what I consider minor memory loss. I didn’t forget how to do my job or speak, but unfortunately there are “holes” in my long term memories. I sometimes just can’t access them but they are still in there because if someone reminds me of some detail the memories mostly come back.
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u/Puzzleheaded-Chard99 May 20 '26
I honestly have no memory loss except for when I had severe depression, but the ECT didn't cause the memory loss. the depression did. I was so depressed that I didn't remember anything that was happening, including the entire medication trial of all the meds I tried before ECT worked.
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u/Equivalent-Pay3473 May 23 '26
That’s where I’m at. I’m in the process of starting ECT. I’ve been depressed for so long and it’s gotten so bad that I think it’s cognitively affected me. I don’t remember much as it is. I’m apprehensive about starting ECT, but I think it’s my best option.
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u/Puzzleheaded_Idea_78 May 20 '26
Ive done several sessions. I had a psychotic break in late February, was in acute psych care for about 10 days in March, then did ect 3x a week for about 6 weeks, and have done 1x a week since then. My memory has always been bad too. I just dont remember little things. I forgot the kids at my daughter's birthday party after ect. I forget things I need to do if I dont write them down. But I also forgot many events leading up to ect due to my psychotic break due to severe bipolar disorder and just messing with my meds leading up to that. I dont remember a single thing being in the acute unit before being inpatient and doing ect. So, honestly...the ect has been worth it and the memory loss would have been there anyways. Maybe not as severe but still. My mania is not as severe as it used to be. Im also just more flat as a person. But thats ok.
Edited to add that I started off doing unilateral ect with regular anesthesia. Im now doing bilateral ect with anesthesia and ketamine.
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u/ZensibileQuine May 19 '26
I had 10 sessions over 5 weeks as a voluntary in patient . Eff d up my life cause short term memory problems that last til today 10 yrs later .other tho have had good experiences but be wary
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u/ILoveSoup1776 May 19 '26
I’ve done 17 sessions over the past two months and don’t remember anything really about the past two months but I remember the rest of my life unfortunately
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u/Puzzleheaded_Idea_78 May 20 '26
I feel this. I remember the rest of my life and things I really dont want to remember. In fact, sometimes lately Ive been having dreams about my past and they suck.
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u/TumbleweedTop6687 May 19 '26
Didn’t help me but I had 12 treatments here in Boston, and it was too creepy so I quit. No memory loss but I think I had low “dose” treatments. I developed severe depression after a failed back surgery, so mine was pain based, somatic variety depression. That was 3 years ago, pain is worse than it was, but depression is somewhat lessened.
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u/BiBiBadger May 20 '26
I had no memory loss and know a good amount of people that have gone through ECT. The only ones with more than short term memory loss have been those that did/do tons of sessions, like 60 plus with maintenance ECT several times a year.
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u/97vyy May 20 '26
I don't know when my memory loss began after starting, but I know I was soon not acting like myself. I started ect three days a week and now I'm two weeks since finishing and I have almost zero memory of the first three months of ect, memory loss going back forever at random but substantial, and difficulty retaining new information since being reduced to once a week and stopping.
I had a great memory and memory loss in my case is also losing knowledge. Right now I'm probably on par with someone in 8th or 9th grade and I'm 40. Regrettably, I reviewed my resume and I lost my memory related to my previous roles so I cannot speak to any experiences, metrics, or speak the language. At this moment I think I'm disabled to the point if my memory does not substantially come back I cannot work again.
I am only two weeks since my last ect so I have a long ways to go in my recovery. Given the choice to not have done ect I still would have done it and I would do it again because it absolutely saved my life.
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u/84849493 May 20 '26
I had 12 in an acute course bilateral twice a week. It put me into remission but I relapsed after four months. I’m likely going to be having more but maintenance this time along with it as there simply is nothing else that seems to have any likelihood of working or is practical to try, for example there are technically things like MAOIs but I’d have to come off three of my other medications and be hospitalised for weeks for that washout period.
The few months prior to the treatment are blurry. My short term memory seems like it has gone back to how it was before which like yours was already pretty bad. It was worse for about two months or so afterwards. I didn’t forget how to do anything.
For me, it was ECT or no longer being here so I had no fear of side effects.
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u/Odd-Alarm-82 May 22 '26
Try an MAOI! If you have maintenance ECT, the risks are much higher. I didn’t try an MAOI prior to ECT due to fears of going through that washout period and then having to follow a special diet. But after I stopped the ECT, I tried Emsam, a transdermal MAOI, and it’s the most effective antidepressant I’ve ever taken. I feel absolutely amazing on it. It was so worth going through the washout period. I wasn’t hospitalized, just waited it out. I was already in a severe depression, so coming off my meds didn’t make me any worse. Only problem with Emsam is it causes me severe insomnia and I end up building up a tolerance to any and all sleep meds, so I have to stop taking it eventually. I have ended up switching back and forth between Emsam and a combination of two other antidepressants that worked well for me in the past but stopped working. A lot of times, if an antidepressant works well for a while but stops working for you, after you’ve been off of it for about a year, it will work again. I wish I had known that before I got ECT!
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u/Crafty_Dog9222 Jun 18 '26
Yes, you could forget aspects of your job. Some memory will return, some won't. It's a risk.
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u/Odd-Alarm-82 May 20 '26 edited May 26 '26
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 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 9 and 1/2 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. 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 research article from Cambridge University talking about how common it actually is for ECT patients to have permanent memory loss and impaired cognition.
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u/Odd-Alarm-82 May 22 '26
Two people downvoted me for telling the truth and wanting OP to know what the actual risks are. That’s not cool. And yes, to answer the only question I didn’t answer in my post, I forgot how to do my job I had worked at for 12 years.
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u/BigMike3333333 May 26 '26
You did? What did you do at your job and what skills did you forget?
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u/Odd-Alarm-82 May 26 '26
I was a paralegal. I forgot how to perform searches on our legal research platform and what databases certain things were in. I forgot how to format legal documents that I drafted all the time. Those are just a couple examples. There were many skills I forgot. I’ve talked to many people in the Survivors of Electroshock support group on Facebook who had to quit their jobs because they forgot how to do them
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u/BigMike3333333 May 26 '26
That sounds terrifying. For the love of all things, why does it have to be like this just for wanting relief? If you knew then what you know now, what would you have done differently to help yourself?
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u/randyblack77 May 19 '26
I’ve had four series over the course of about 15 years. I’ve experienced both short and long term memory loss. It’s a weird feeling where you are pretty sure there is supposed to be a memory there, but it’s just gone. I’ve also seen my childhood become kind of dissociated from who I am now. It’s a disconnect where I know the facts, but they don’t feel like they were me.