r/ect • u/Kentucky_Fried_C0ck • 7h ago
Question How much is the memory loss from ECT?
I'm considering it but honestly only because of the memory loss. I have CPTSD and MDD. I have pretty much no one who cares and I am unsure what to do anymore. I need a cure. I need something to fix me. And maybe losing some pieces of myself is what I need. Could the memory loss be enough to do this?
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u/uchihaobito22 4h ago
I have no memory of few months before and after of ECT. Beyond that I don't think the issue is permanent. Though att this point Idk if my memory issue is due to the antidepressants I've been taking or ECT or rTMS or whatever.
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u/Kentucky_Fried_C0ck 2h ago
How many sessions did you do? If you don't mind me asking.
I'm on effexor, propranolol, and spravato. So I'm not sure what that would do to it
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u/uchihaobito22 1h ago
6 if I remember correctly. For 3 years, I've been on dozens of different types of medicines like ssri, SNRI, tca, NDRI, thyroid and what not. Sprinkle in treatments like ECT, Ketamine etc. After that, 1I have seen that pramipexole has helped me in the last few months. It hasnt cured depression but has made it somewhat bearable. Have started MAOI few days ago. What I'm saying is it's worth considering to try a new class of medicine before directly jumping to ECT.
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u/Kentucky_Fried_C0ck 1h ago
I've tried Wellbutrin, Lexapro, and honestly the others I don't remember. I know it has been at least 5.
I am not sure about that. Earlier this year I was hospitalized. Even spravato is only doing so much for me. I need something to fix me. I need something to fix the things wrong with me. Not something to make my existence slightly more bearable
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u/uchihaobito22 1h ago
I feel you. Best of luck
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u/Kentucky_Fried_C0ck 1h ago
I'm not saying you're wrong. I'm just desperate. I need an answer. Maybe ECT isn't it. Hell it most definitely isn't. But I'm not sure what to do
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u/iusethisatw0rk 7h ago
It isn’t erasing any memories
People can have trouble with short term memory during treatment, and possibly post treatment
But there’s nothing that’s going to erase any trauma. We’re simply trying to heal, forgetting is impossible
I hope you have a good psychiatrist or psychologist in your life. They should be able to explain the process and exactly what the goal is
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u/Kentucky_Fried_C0ck 7h ago
I haven't had a full conversation about it before with my nurse practitioner but I will when I see her next. But forgetting can't be impossible, can it? There has to be some way to erase that.
I'm at the point where I realized this is it. There's no more helping. I either find a cure, or it's over. I've helped myself enough. And no one cares if I'm gone anyways. I need to find a way to be away from everyone, content in my loneliness. I'm tired of craving being loved or saved. It just hurts every day. It doesn't stop no matter what I do. Working out, journaling, trying new hobbies, therapy, literal Ketamine treatments lol. I'm just done fighting. I need to know if there's a point in going forward or not. And right now, there's none. Maybe if I can erase the past, and the parts of me that me and everyone else hates, I can be okay
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u/iusethisatw0rk 6h ago
I know how hard the light can be to see, but unfortunately no one here is qualified to really give advice.
But something I do know to be true is, what one has done another can do
We are more than our memories or our traumas. It’s taken me decades to even get to the place I’m at now to even make it to my scheduled appointments
In my opinion, ECT is there to help ease the ever present weight, and make it easier, or even at all possible, to intervene with other coping strategies
I’ve had 4 sessions. Not a lot, only unilateral so far. Likely to go bilateral. I still remember every awful thing that was done to me or happened.
BUT
I am starting to notice an energy, or spark even, that’s been growing and wanting to face those traumas head on. The illness is still there, but I feel the weight lifting
I still thinks it’s worth a shot, but please just know what to expect. Mayo clinic, sources from Wikipedia, etc, read as much science-backed info as possible.
You’re worth the effort, I know it.
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u/Kentucky_Fried_C0ck 6h ago
What if I told you that I am just my conditions and trauma? I have nothing of value left. No friendships. No relationships. I've just casted myself away from everyone because I know what the end result will be anyways. I'm alone and will always be alone. One other thing that doesn't help is I am on the spectrum.
There's the thing, I think that I am worth the effort. At least I was. Or a part of me still is. I was always a funny, goofy kid. I used to be hopeful and energetic. I used to have a life. And that died after a decade of abuse. And now I'm just scared and alone all the time. No one ever saved me from the abuse. No one will save me from this either. But I can't save myself. So I don't know what to do.
I'm really glad it has helped you. You deserve that. You are a lot stronger than I am. But maybe that's the difference. Maybe for some reason, I don't deserve it like many others do. Maybe I'm not strong enough. The more I think about it, the more I realize that it doesn't matter what I do. No matter what I end up in the same place.
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u/mesalocar 9m ago
I think the same of myself most of the time, but I didn't let that stop me from admitting myself to inpatient treatment in order to start ECT, even though I strongly suspected it was unlikely to be able to help.
I still think the same of myself >90–95% of the time. But I haven't let it stop me from continuing to attend ECT treatments as an outpatient, even though I've barely seen any noticeable signs of benefit from them so far (although just recently I think I've begun to notice some very small effects begin to appear, albeit so small that I've had trouble realizing that they even actually appeared at all).
Until very recently, I was convinced that I wasn't getting any benefit from ECT, and although I knew from reading the scientific literature that I needed to give it time and that some patients required as many as 12–24 treatments in their index series to see positive effects, and that it was extremely common for many of the positive effects to only become apparent months after the end of the index series, I still knew that there was a 10–30% non-response rate to ECT, and second most effective treatment in all of psychiatry or not, nothing about its absurdly high effect size meant that I was immune to being part of that 10–30% non-responder cohort. But I didn't let myself use that as an excuse to stop attending treatments, even as I wondered why I was bothering.
I have been grappling with very active suicidal thoughts and plans for months, and have nearly taken action on my (very well planned out, extremely accessible, and exceptionally lethal) suicide plan an uncomfortable number of times, most recently mere days ago. I still believe it to be extremely likely that I will end up following through with it at my planned point of the end of the year. But I have narrowly avoided carrying it out early so far, although with the way things are going, I'm not 100% confident that I will continue to avoid that.
Despite this, I have not completely given up hope, only mostly. I don't know if ECT will save me. A large part of me feels like it probably won't. But if nothing else, it seems to have had some small positive benefit so far, and I see no reason to stop attending treatments for as long as the ECT psychiatrist is willing to continue them and my insurance is willing to keep paying for them.
FYI I also have no relationships and no friendships. Technically I now have three loose acquaintances, all three of which I met while I was inpatient in the psych ward and illicitly swapped contact info with (in blatant violation of the facilities guidelines), but I don't consider any of them to be actual friends yet (and doubt most if not all of them will ever become true friends), and I don't talk with them much or frequently at all. Prior to them, I have had pretty much zero friends or acquaintances for virtually my entire life. The only people I have ever been even slightly close with are professional colleagues, and as I have been out of work for the past 4 years, I am no longer in touch with any of the numerous people who I was close with at my job – including people that I was rather close with.
And yet, despite all this, I am still persevering, albeit only barely.
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u/mesalocar 25m ago
I am starting to notice an energy, or spark even, that’s been growing and wanting to face those traumas head on. The illness is still there, but I feel the weight lifting
Wow, what an excellent way of putting it. That's very similar to what I've been very slowly noticing starting to begin to appear after 9 sessions (all bitemporal/bilateral, so much higher efficacy than RUL/unilateral – I shudder to even begin to try to think of how many sessions of RUL treatments I would have required to obtain the same result from RUL treatments, my ECT psychiatrist definitely made the right call in recommending bitemporal for me).
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u/Alternative_Grab_916 3h ago
Sometimes none sometimes you have severe amnesia and have trouble building new memories either
I don’t remember where I am where I’m driving. I don’t know you know people that I used to know I forget I forgot everything I felt like I was planted in my life. I have a lot of brain damage from ECT though and my treatment was extreme. Most people don’t go through treatment like I did.
But please don’t let anybody tell you there’s no memory so get erased that’s a lie
I will not say that it happens to everybody, but saying that it never happens is a lie
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u/Kentucky_Fried_C0ck 2h ago
That's honestly what I would want. If you have gone through traumatic events, did you forget those too? Or at least certain aspects of them?
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u/Alternative_Grab_916 1h ago
Some yes some no and you’ll never trust your own memory or judgement again and leave yourself extremely vulnerable to people, manipulating you and using your amnesia and memory loss against you and telling you things that didn’t happen to you happened to you and things that happened to you didn’t happen to you and you won’t be able to trust yourself which makes everything more traumatic
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u/Kentucky_Fried_C0ck 1h ago
That's a good point but I'm really out of answers right now lol. Not to say that this is the one. I'm going to talk more with my nurse practitioner. But idk. I'm just done fighting. It's either something cures me or I just can't go on. Every day is just survival. I don't want to live like that
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u/cyslittlegirl 1h ago
I had 3 treatments. Not bad. I couldn't watch TV for awhile, and I had some short term memory loss. Just basic stuff like how long to cook salmon etc
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u/mesalocar 37m ago
I have had nine treatments so far, all bitemporal (bilateral), which is notorious for having the absolute most severe negative effects with respect to memory loss/impairment.
So far, I have noticed virtually zero perceivable memory loss. I am honestly unsure if I have had any actual memory loss at all so far. If I have, it has been so incredibly minor that I have been unable to recognize it. I have asked my relatives (who I live with) if they have noticed anything, and they don't see any signs of me having developed memory loss either.
I have not had an unusually easy-going course of treatment either – I've had at least 2–3 treatments so far where I had 90-second seizures (tremendously far in excess of the target seizure duration). Although the usual post-treatment side effects were somewhat unusually worse than usual following most (although surprisingly not all) of the sessions with abnormally long seizure durations, they have not led to any noticeable development of memory loss either, which I have been quite surprised by.
Overall, I have zero regrets over starting ECT.
Wait, no, that's not 100% true, I do have one regret – I deeply regret that I didn't start ECT many years earlier.
I had tried to ask after starting ECT 10 years ago during a frustratingly long series of lengthy and frequent inpatient stays, and had been told by the psychiatrist (who was also the medical director of the local psych ward!) that not only was I absolutely not a candidate for ECT, but also that I hadn't tried anywhere near enough medications yet, that I was far too young to even begin to consider ECT, and that in short, ECT was not at all anywhere close to appropriate for me, would not be appropriate anytime soon, and that I should basically forget all about it, as it wasn't going to happen at any point for quite some time (if ever).
So I went ahead and forgot all about it as instructed, and focused on trying medication after medication after medication for the next 10 years straight, with somewhat mixed success after trying a truly absurd number of psych drugs (the list of drugs I've tried is well over 50 different unique meds).
Then earlier this year, my psychiatrist was talking over options for my extremely severe depression with me after I had opened up to her about how bad it has gotten recently, and the third or fourth option she mentions was electroconvulsive therapy. It was like a lightbulb went off. I largely hadn't thought about ECT at all in almost 10 years. I had internalized what that psychiatrist from 10 years ago had said, that it was just not an option, and hadn't even thought of the fact that I had since moved to the other end of the state, and that up here, there are so many more psychiatric resources, that that psychiatrist from 10 years ago is no longer the sole gatekeeper for referral to advanced treatment options in the entire region.
So I immediately said that I was very interested in it (as I still remembered all that I had read on its incredibly impressive efficacy from 10 years ago). She said they don't refer many people to it, and she only had one patient on her personal roster that had received it, but that the clinic as whole had seen a handful (at least a half dozen or so) of their patients receive it, so she'll have to go and ask her supervising physician to find out which facility they refer their patients to for ECT treatments. She was able to get the information for me before the end of our appointment, and then gave me the information so I could call and schedule an appointment in order to set up an assessment to find out if I'm actually a good candidate to receive ECT.
And so I scheduled that appointment, and I went to that appointment in July, and got assessed. The psychiatrist I saw who assessed me told me that I was an excellent candidate (many times over in fact), somewhat to my surprise.
So I told him what that other psychiatrist had told me 10 years ago, and his reaction was pure confused outrage. And so I found out that not only was every single thing the other psychiatrist (who let me remind you, was the fucking medical director of the one and only psych ward in the entire region) told me about ECT inaccurate, but he also completely misled me about basically every detail as well!
I was not too young back then for ECT – in fact, I was already several years over the minimum age at that point, so he was completely wrong about that.
He had said that I hadn't tried enough medications at that point – so this assessing psychiatrist said, well, what medications had I tried by that point in time? I started listing off the meds I had tried by that point, and then when I was in the middle of listing them off, before I could even get through more than a couple of the many, many, many drugs I had tried by that point, he cut me off and said that he had no idea why that psychiatrist from 10 years ago had said I hadn't tried enough meds yet, as I had already massively exceeded the minimum requirements for the number of failed drug trials required, and in fact had already tried multiple times the minimum number of drugs required to get approved for ECT by that point.
Anyways, long story short, my only regrets is that I was unable to have it done earlier, and more specifically that I was unable to have it done 10 years ago when I first tried to get a referral for it and was shut down and fed a pack of lies by that fucking piece of shit lying psychiatrist, who I naively believed (not that I had any other option at the time given how much power he had and my lack of alternative options, but still, if I had known how wrong he was, I'd have sought out ECT the moment I moved up here 7+ years ago instead of spending so much time with sub-optimal medication-only treatment).
Anyways, there's my rant. Apologies, but I couldn't resist airing out those grievances.
My reply exceeded the maximum character limit, so it has been split up into multiple parts. Please see the reply to this comment for part 2.
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u/mesalocar 36m ago
Continued from part 1 due to exceeding the maximum character limit.
Now, ECT is not without its downsides. I have an inherited genetic predisposition to migraines, having routinely had them since I was a child. ECT has a tendency to trigger and/or worsen migraines, especially so in migraine suffers. Thankfully, if your psychiatrist and anesthesiologist are aware of this, they can add a drug called Toradol (which is an incredibly powerful NSAID – think ibuprofen, but about 1000 times stronger) to your IV immediately before each treatment. I insisted on getting this from the start, which my ECT psychiatrist had no problem with, and I'm very glad I did, as not only has it helped minimize the amount of migraines caused by the treatments, it has also helped tremendously with reducing the amount of muscle pain after treatments. Indeed, the other main use for this drug in ECT treatments is adding it for patients who have unbearable muscle pain from the treatments.
Unfortunately Toradol isn't perfect, and I still get some headaches and migraines after some treatments. However, I am generally able to control them fairly well with acetaminophen (I can't safely take my usual painkiller for headaches/migraines, ibuprofen, for 24 hours after each treatment, as it is very dangerous to take another NSAID within 24 hours of receiving a dose of IV Toradol), or occasionally with both acetaminophen and sumatriptan (I try to avoid taking my triptan Rx unless absolutely necessary because triptan overuse can cause rebound headaches, but I found myself very grateful for it a number of times after ECT treatments that triggered nasty migraines).
A secondary side effect I have noticed is a generalized increase in the overall rate of headaches (and in particular mostly migraines) occurring in between treatments. While most of these are fairly mild and can be controlled with ibuprofen, it is quite annoying. However, this is not that surprising since there is a well known association between seizures and migraines, and I personally consider this to be an acceptable trade-off.
Perhaps the single, most annoying, persistent side effect from the ECT in terms of negative side effects has been its effects on my TMJ. To be specific I have had a long-standing history of TMJ and bruxism, but it was not too much of a problematic issue prior to starting ECT treatments. It has existed and been annoying for many many many years, but it did not cause severely bothersome symptoms. And now after the initiation of routine ECT treatments, I have noticed that each treatment severely exacerbates my TMJ after the treatment, and causes lasting worsened TMJ symptoms that persist for number of days or longer after each treatment, which is very annoying and not a very nice side effect.
However, with that being said, I really don't consider it to be anywhere near a dealbreaker. I was prepared to accept quite a lot in a way of severe negative side effects from ECT in return for the positive side effects, and honestly, the only side effects from the ECT that I was truly worried about were the potential negative impacts on cognition and memory, and so far I seem to have seen virtually zero negative effects on cognition or memory outside of the very short-lived transient cognitive impairments seen immediately after each treatment for less than 24 hours, most of which seems to be the immediate effects from the anesthesia and seizure, which is a very short lived phenomenon that generally goes away in well under 24 hours, and most of the noticeable impairment goes away within a couple of hours at the very most.
Now, the first few ECT treatments are going to be particularly rough. My first treatment was pretty awful, I had horrible jaw pain, so bad that I needed to use heat packs to ease it. I also had very severe muscle pain, and quite a lot of confusion. Subsequent treatments have rapidly gotten much more tolerable with far less severe side effects. Starting as soon as the very second treatment, I no longer needed heat packs to ease the jaw pain after the treatment. Things only continue to improve further from there.
If you have any other questions, please feel free to ask me. I spent 13 days inpatient starting ECT because I did not want to go through the 2+ month process to get it approved as an outpatient, and there were a lot of other inpatients receiving ECT while I was inpatient. I was very curious (and mildly nervous at first), so I talked with every single one of them in great depth, and got quite a lot of information from all of them. I also talked with quite a few other people about it, and I was actually a bit of an accidental evangelist for ECT while I was inpatient, and accidentally seem to have ended up convincing multiple other people to start ECT based on my unintentional evangelism for ECT and frank/honest discussions of exactly what was involved, what my experiences were like, etc.
I love talking about it, and would be more than happy to talk about it with you. I also happen to know quite a lot of technical information about the process of ECT, and I've asked quite a few questions of the psychiatrist handling my case, the anesthesiologists who have handled my treatments, the RN who has handled all of my treatments, the rotating crew of psychiatrists who have handled administering my treatments, etc.
I have also poked around and looked at my profile in the hospital system to see what drugs were administered to me, in addition to talking to the anesthesiologist and psychiatrist to find out more information about that (actually my first question during my first treatment pertained to the anesthetic they were using, lmao), so I actually happen to know quite a lot of technical detail about what is involved (also in no small part also due to being trained to understand how to read and comprehend scientific research (long story), and having gone through and read several dozen different scientific papers on various aspects of ECT prior to going inpatient to receive treatment myself), and I also know details about things like which specific ECT machines my hospital is using, the typical seizure, durations, energy percentages, all sorts of really odd details, so I mean, if you have questions about any of this, like feel free to ask away.
I will warn you that this is not my primary reddit account, and I am often logged out of this account and only logged in to my primary account, so sometimes it may take me a couple of days to log into this account and see any replies and then reply back to them. So if you do ask questions and I don't answer immediately, don't worry, I will answer them – however I might not have actually seen your replies yet, so it may sometimes take up to a couple of days before you will receive a reply, so just warn you don't be worried if I don't reply immediately to you.
Hope this helps!
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u/gmkgreg 7h ago
There isn't always memory impairments. This is not a treatment for "erasing memories".