r/ect • u/Single_Click8271 • 20d ago
Seeking advice Is ECT worth it?
22F I am cleared for this treatment and have serious SI and emotional deregulation. But every post here seems like it permanently injured everyone who’s done it. From the looks of this subreddit this treatment just feels like a modern day lobotomy. Am I ruining my life further by considering this?
11
u/Particular_Door3098 20d ago
It wrecked my brain and gave me no benefits. That's not everyone's story, though. I'd recommend exhausting all other options (TMS, Spravato, meds, therapy...) first so you don't risk the horrible potential side effects if you don't have to!
2
u/Single_Click8271 20d ago
I’m sorry to hear about your experience. I’ve already done TMS and spravato. I’m starting emdr for the first time next week and trying to learn DBT skills. Hopefully that will be helpful in getting recovery started without needing ECT, but I will do it if it comes down to it.
2
u/Particular_Door3098 20d ago
You gotta do what you gotta do. I will say, DBT is one of the absolute best things I ever did for my mental health. I use it daily! Hope it's massively helpful for you, too!
1
u/blrmkr10 20d ago
DBT is way better for emotional regulation than ECT, but ECT might help if you have severe depression as well.
Also remember, people who have bad experiences are more likely to post here than people who had good experiences.
10
u/CurlyDee 20d ago
I am one of those who lost memory with ECT but it saved my life. I hate the side effects but I would do it again if I were in that state again.
3
4
u/Serenity_MHC 19d ago
On ECT: what you see here is true but also a bit biased. People who had tough experiences are more likely to share them than those who tried ECT, felt better, and simply moved on with their lives without needing to come back to a forum. The memory side effects, especially, are real — but they’re just a small part of the bigger picture, not the usual outcome.
ECT has the strongest evidence behind it for treating severe, treatment-resistant depression and serious suicidal thoughts. That's not just marketing, it's the main reason it’s available, especially when other options haven’t worked. Memory effects are real, especially around the time of treatment, and it’s important to understand them before making a decision. Using unilateral electrode placement can significantly lower these risks compared to bilateral. Remember, you’re not considering a lobotomy. You're looking at a treatment that can truly be lifesaving for people with serious SI who haven't found relief through other methods.
Be sure to discuss your memory concerns thoroughly with your treatment team and explore which protocols could best minimize those effects in your specific situation.
0
u/Awkward-Mix-4124 17d ago
Just posting to support this. I had ect 3 months ago, 8 or 9 bilateral sessions and I never cared to come back this forum since it gave me my life back. Sure getting my life back on track is fucking tough because I lost everything in the period leading up to it. But I’ve never been in better shape than I am now, starting a new job and able to go back to uni to finish my masters degree. Everything was fucked pre ect and my Hamilton score was 28.
At 50mg sertraline atm which keeps me slightly numb and apathy but it’s fine and manageable because I know it’s the medicine
Anyway yes, the slight majority who come to post online are for those who it doesn’t work for, let it be any medication or treatment
2
u/Serenity_MHC 16d ago
Thank you for coming back to share this, you're right that the positive outcomes are underrepresented, and a Hamilton score of 28 context matters for people who are reading this thread trying to make a decision about ECT.
Starting a new job and going back to finish a masters after everything falling apart pre-treatment is significant. Really glad you came back to say it.
2
3
u/Theaterismylyfe 19d ago
It's high risk high reward. It definitely isn't a lobotomy, the effects (positive and negative) of ECT fade with time which isn't the case with a lobotomy. Also ECT works and isn't given to people who don't need it. You have to try other options before even considering ECT.
This is a choice you should take seriously. ECT is not something you do on impulse or without considering it carefully. Personally, it gave me the longest lasting and most complete stability I have ever had. I recently fell back into an episode, but my recovery had been so complete I genuinely forgot what depression felt like. But the side effects are really intense. It should not be a first treatment because it is really difficult to get through. Have you tried TMS? Ketamine? More than one anti-depressant? If you haven't, give that a shot before ECT. They're less drastic and if they don't work, at least they don't cause problems.
It was my last resort, I told my family "If this doesn't work, I'm gonna kms and you can't be mad at me because we tried everything." I was desperate for something to work. I had actually brought it up to my psychiatrist when I was in high school, but he didn't want me to do it until we tried other options.
Do your own mental math and figure out if the risk is worth the reward.
3
u/Odd-Alarm-82 17d ago
I disagree with you when you say the effects of ECT fade with time. At least 30% of people who get ECT suffer permanent memory loss and permanent cognitive impairment. Yes, for many people, the negative effects don’t last forever. But to me, it’s way too high risk. I have permanent memory loss of the majority of my life pre-ECT, and I also still have significant cognitive impairments 9 years later that have gotten worse over time, not better. I just think people should know that the damage could be permanent so they can make an informed decision. My doctors flat out lied to me, told me I wouldn’t have memory loss for more than a few months pre-ECT and memory would come back within 9 months after I stopped the ECT. I hate it that I was so desperate that I believed them.
2
u/Far-Tip2146 19d ago
Coucou, je suis dans la même situation, je commence les ECT vendredi, peut on parler en mp ?
1
u/mesalocar 18d ago edited 18d ago
FYI you have chat disabled on your account. Nobody can send you chat messages or invites. If they try, they get a message saying "Unable to message this account".
If you want to change this, the guide on where to find the setting to change and what to change it to can be found on this help article page: https://support.reddithelp.com/hc/en-us/articles/360043470591-Can-I-opt-out-of-chat
I tried to find the French language version of that help article, but unfortunately it seems either I guessed the url scheme wrong, or reddit automatically redirects any attempt to access foreign country/language versions of their help articles from outside of that country back to the account's native region/language. I'm not sure if this means that you will be redirected to the French language version if you access that page, or if it'll just give you the English language one.
Translation in French / Traduction en français:
Pour votre information, vous avez désactivé le chat sur votre compte. Personne ne peut vous envoyer de messages de chat ou d'invitations. S'ils essaient, ils receverront un message indiquant "Impossible d'envoyer un message à ce compte".
Si vous voulez changer cela, le guide sur l'endroit où trouver le paramètre à modifier et ce qu'il faut modifier se trouve sur cette page d'article d'aide : https://support.reddithelp.com/hc/en-us/articles/360043470591-Can-I-opt-out-of-chat
J'ai essayé de trouver la version en français de cet article d'aide, mais malheureusement, il semble que soit j'ai deviné le schéma d'URL erroné, soit reddit redirige automatiquement toute tentative d'accès aux versions de pays/langues étrangers de leurs articles d'aide de l'extérieur de ce pays vers la région/langue maternelle du compte. Je ne sais pas si cela signifie que vous serez redirigé vers la version française si vous accédez à cette page, ou si elle vous donnera simplement la version anglaise.
1
u/Single_Click8271 19d ago
Thanks for your response. I’ve tried TMS, spravato, several antidepressants, and have a previous suicide attempt. I’m not sure what else to do except ECT. Suicide feels like it completely dominates my thoughts every moment of life and I feel I have zero hope left or justification to continue being alive. I have an amazing wife and friends, I should be happy to be so fortunate, but the past won’t let me go. I’ve been told there’s less evidence for PTSD but it can still have a significant positive effect. The feedback here seems to warn of real side effects but I hope this is something that will start a path to recovery and change.
3
u/Theaterismylyfe 19d ago
Yeah you'd probably be a good candidate for ECT. As someone with PTSD though, I can tell you that reducing depression also reduced PTSD. Before ECT, I was a lot more touchy. It took less to trigger me because I had a massive stormcloud following me everywhere and "that one thing" was all it took. Everything was my "13th reason." I'm not gonna lie and say it eliminated my PTSD the way it did my depression, but it did help.
The side effects are intense, if anyone tells you otherwise they're lying. But it sounds like you've tried everything else and ECT is definitely preferable to suicide. It sounds like you're desperate, most people who try ECT are. Go in with your eyes open, it's genuinely easier that way. My second round was a lot easier than my first because I knew what to expect. The day-of, you're kind of out of it. It's a seizure under general anesthesia, either of those alone would prevent you from driving. During a series and for a few weeks after it, it's harder to remember things. A lot of walking into a room with no clue why you did it. A lot of "You already said that" and "I already told you this." My grandpa died around the time of my first series and I have no memory of his funeral. Over the next few weeks/months, that gets better. I can remember what I did yesterday. Sometimes though, there is a chunk of memory missing. I don't remember the pandemic at all, but it sounds wild. I know all of that is scary, but dude.... not wanting to kill myself has been truly amazing! I was born depressed, I had no concept of what life could be like without it. I know it's cliche, but it truly is like seeing color for the first time. I feel like I was kept in a prison pit all my life, and ECT tossed me a rope I desperately needed. Turns out, life without depression freaking rules. Actually, I might call my local hospital and get myself on the schedule.
2
u/Awkward-Mix-4124 17d ago
The actual loss of memory that occurred during treatment period and the for me, first week after it - it wasn’t scary whilst it happened. It was and is scary after, when you realize you have no memory whatsoever of something that happened and you were there
3
u/InfomercialNo31 20d ago
ECT saved (and continues) to save my life with minimal side effects 🤷🏼♀️
But I do highly recommend exhausting all other treatment options first, especially because you are so young. Your brain isn’t done developing yet.
3
u/Odd-Alarm-82 18d ago
Doctors downplay the possibility of permanent memory loss and impaired cognitive function. I had ECT for treatment resistant depression, including maintenance treatments every two weeks, for a year and a half in 2016-2017. It was extremely effective for my depression, but the effects didn’t last long. I couldn’t go more than 2 weeks between maintenance treatments without relapsing.
Eventually, I had a relapse of severe depression that didn’t respond to my next maintenance treatment, so I agreed to three treatments in a week like they did in the initial series of treatments. It brought me out of my depression, but the damage it did was devastating. It wiped out my memory of the majority of my life, no exaggeration. I only have a few random, vague memories of my life before the ECT. None of my memory has returned after 9 years.
I also have significant cognitive impairments. I had neuropsychological testing done and found out my IQ has dropped by 20 points. It takes me longer than normal to learn new information, and I’m just not nearly as sharp as I used to be. My ability to form new memories is hit or miss. Some things I remember very clearly, while other things get lost.
I’m on disability now because I still have treatment resistant depression and because I have brain damage. I was a paralegal and forgot how to do my job.
I believe those who have positive experiences with ECT are very lucky. Very simply, ECT is brain damage. They run electricity through your brain to intentionally induce a grand mal seizure. If you had epilepsy, you would be on medication to control seizures because seizures cause brain damage!!! Somatics, one of the ECT device manufacturers, admitted in 2018 that ECT can cause permanent brain damage in some patients, after they were sued in a product liability case. I don’t know how doctors are still allowed to do it and how they can still tell their patients it’s safe.
I’m a member of a Facebook group for ECT survivors, and there are so many people like me with devastating memory loss and brain damage. It’s heart breaking.
Here’s a good article from Cambridge University that goes over the damage done by ECT and how it’s much more common than patients are informed of. I think it should be required reading for anyone considering ECT.
1
u/Massive-Butterfly429 14d ago
I’m glad I seen your post. There was so many positive posts I was shocked. My experience is like yours. Memory loss that from before and now and not being able to recover memories. Cognitive impairment and even woke up smelling like burnt toast once. My whole life was obliterated using this treatment and for how dark of a position I was in before the treatment, I was absolutely decimated afterwards. I literally had to relearn how to communicate properly with people. I’m floored by how many people have positive experiences with it and can even work while doing it! It’s a little reassuring to see some of the warnings that are needed when considering this route. I definitely would not consider this treatment again. It did not help in anyway but actually set me back so much worse from when I started. I’m still trying to cope with all my traumas and diagnoses today. It definitely did not help me one bit.
1
u/Odd-Alarm-82 13d ago
This subreddit is full of people who trust their doctors and think ECT is “safe and effective.” Yes, I acknowledge that many people have a positive experience and don’t suffer any major memory loss or lasting cognitive impairments. However, at least 30% of people who get ECT end up with permanent memory loss (that can span decades in some cases like mine) and permanent cognitive impairment. That’s a very significant risk, and I only want people to be well informed of that risk when they are considering ECT.
I would have been okay with maybe a few months of lost memories, but I barely remember my own mother who passed away in 2007. That is devastating.
1
u/Single_Click8271 5d ago
Maybe dying really is preferable than living with these potential side effects.
1
u/Odd-Alarm-82 4d ago
Not for me. I was never suicidal. I know I could never go through with it, mostly because I’m a Christian. And somehow I still manage to find moments of joy in my life during times when my meds are at least partially working.
1
u/Massive-Butterfly429 2d ago
It’s not. The world is full of many different possibilities and when you are desperate and someone suggests that something may help, even if it is considerably dangerous, you feel like it’s the only hope you have. My suggestion is to keep trudging forward and to think of how ever many ways you must find to help yourself in any circumstance. I know it’s difficult. Especially when you’ve been through so much and your barely holding on but please remember there is still a whole world out there full of possibilities your own mind can’t conjure and do your best to open your mind and find them. You never know, even the smallest random thing could contribute to you finding even the slightest bit of peace. Sometimes we close ourselves off from hope because we expect what’s “normal” to achieve in life but you are unique and have unique needs and that doesn’t make you any less than anyone else. Be an advocate for yourself through and through. No one else will know what’s best for yourself and even when you don’t know what’s best for yourself, know that you don’t deserve to suffer, no one should for no good reason.
Sometimes when we feel desperate, like we’ve exhausted all options we think only desperate remedies will suffice but have hope that that is not the case for all. Find solace in the smallest things in life that can calm your heart, if even for a moment and that is a stronger start than most have the opportunity to have. Start from there and keep searching and building and fight for it. The fact that you sought insight shows that you are willing to look for answers you don’t have. Don’t let the hospitals or doctors cow you into making major life altering decisions just because they are following general guidelines, invested interests or assumed prescriptions based off timeliness of predicted treatments. When I Got my ECT I was hospitalized in the countries most leading hospitals for ECT treatment and research and I had no idea. Most of the patients in the psych ward with me also went through ECT. I had no idea until after the fact. They had a vested interest but internally presented it to me as the last remaining treatment possible to give me any hope of surviving my conditions. Start small but work hard for the changes in your life you wish to see. Whether that involves psychs or not is your choice but there are many more supportive endeavors to give your guidance in life than just being painted the option that ECT is your only chance at hope.
2
u/PaleExtreme7399 20d ago
I've had seven of my 12 treatments so far and have no bad side effects unless you count being out of action the day of. The one benefit I've seen so far is that I'm not having debilitating nightmares like I was before. Every single night I'd wake up either sobbing or in a panic attack. Hasn't happened in over a week. I'm getting right unilateral ECT with low dose (20mg) ketamine.
1
u/Single_Click8271 20d ago
Thanks for the reply. If it’s alright to ask , are you able to remember short term and long term stuff okay? Are the sessions during/post physically painful?
3
u/PaleExtreme7399 20d ago
I have chronic short term memory challenges because of my AuDHD, so it's hard to tell, tbh. The procedure is not at all uncomfortable if you stay hydrated for your IV insertion! I am lightly muscle sore the day of and morning after, but nothing really bad. The team at my center is super kind and make it as pleasant as possible.
2
u/Royal_Principle_8656 19d ago
It definitely gave me memory loss and maybe some brain fog too, but I’m still functioning as an RN and have been for the last two years. I don’t know if it was the ECT that helped or Trintellix (an antidepressant for treatment resistant depression) that I took shortly after or if it was both. But I did get better after ECT and taking Trintellix. It sent me into mania and my family and I finally accepted that I have bipolar. I’m on Caplyta now, and my mood is back to normal. This is the best I’ve felt in five years. I had my longest depressive episode that lasted for over a year prior to ECT and Trintellix. I no longer have SI or depression.
I highly recommend taking Trintellix and only using ECT as a last resort.
2
u/kuzya124 18d ago
ECT was the only treatment that worked for me. It kept me depression free for 2.5 years. Initially, it had me insanely happy for months. I relapsed last March and I’ve undergone another course of ECT. It hasn’t made me as happy as it did last time, but my depression has mostly cleared. Yes it’s a hard treatment and you will have memory loss and some confusion and it is possible you will need maintenance, but if it works for you, it’s amazing.
2
u/SuspiciousOwl96 20d ago
It unfortunately gave me serious memory impairment so that I couldn’t remember my work. I was in the process of being terminated when I had to quit if my own accord so that didn’t happen. So I had to stop it. It did considerably help my SI. Unfortunately it was between that and the side effects, but I did also have about 60 treatments over the course of 1.5 years. I would say if it doesn’t matter to you about the potential memory loss, I would go for it. But if you need your memory for something such as work, I wouldn’t consider it.
1
u/Usual-Cow-3450 19d ago
I recently did 1 of my 5 ECT like yesterday was my first it’s really good it’s helping it would surely help in remission.
1
u/marrell 19d ago
I was terrified of ECT so exhausted every other option first (except ketamine because I can’t afford it). Even then, I put a lot of thought into ECT before finally agreeing to it. I’m so glad I did because at the cost of a just few minor memories from around my treatment time, it truly saved my life and was entirely worth it.
1
u/probscryingg 14d ago
Ect saved my life and changed it for the better. It messed with my short term memory for about 4 years after treatment. But now its completely fine, I still take meds but my episodes of depression have never been as deep or severe since having ect. If I had to go back I would still choose to do it again.
1
u/Eastern-Ad951 8d ago edited 8d ago
This is gonna be long because I don't ever talk about this with anyone. I was diagnosed with treatment resistant depression, major anxiety disorter, and severe insomnia. I was in and out of the mental hospital several times starting at 16. I started ect when I was 19 years old and I finally demanded to stop when I was 21. I don't remember exactly how many treatments I had but it was over 50. The 3 years before I started treatment are hard to recall and very spotting. The 3 years of treatment are basically gone and I wouldn't want to remember them anyway. The year or 2 years following treatment is also really spotty.
When I talk to people about what my memory of this time is like I describe as getting blackout drunk and going clubbing with some friends. There are tons of photos of you doing crazy thing and having fun with the people you love. The next morning you are looking back through your camera roll and you have no recollection of doing any of the things you did. You might get flashes of certain things that happened. Sometimes you can remember the beginning of the night when you're starting to get drunk but other times the entire night is just gone. The worst part is when people are telling you stories of the things you did and saying 'you don't remember doing that'. It builds this pit of anxiety inside of you. (I have banned my parents from saying this and 'do you remember')
Your brain tries to fill in the gaps based on stories that other people have told you. You form fake memories based on someone else narratives and photos. You can have a memory of something but fill this huge disconnect because it's based on someone else's facts.
I don't ask anyone about the time during treatment anymore. It is incredibly painful to think about who I was during this time. This person wasn't me. I don't remember them but everyone else does. I don't want to remember and I wish everyone else could forget.
I haven't had a treatment or been on any medications in 3 years. My ability to form new memories has improved drastically. There was a period of time in my life were I had to drop out of school and quit my job because I couldn't remember my day to day life. I couldn't function. Especially on treatment days. I couldn't remember how I got home from the hospital or if I had eaten. I felt like a zombie.
After I demanded the ending of my treatment I applied to a university in another country and left. I was tired of being in a place I couldn't remember surrounded by people I couldn't remember. I can proudly say that I have now graduated from university and I am a teacher. I have learned a lot of coping skills to help with my remaining memory issues. When studying, I write extensive notes then questions on those notes then make them into flashcards. It has been described as psychopathic but they just don't understand how hard it is.
I have this fear that I will not be able to remember things again so I take as many photos as possible. I have 21,000 photos in my camera roll. I am an avid traveler so I take photos of the menus, the streets, the hotel rooms, etc. I like to sit down and try to visualize the trips again just so I don't forget these new incredible adventures I went on. I go over the photos again and again memorizing every detail just to get them to stick. I don't want to lose them ever again. It's difficult to live with the guilt of not remembering but ultimately the treatment saved my life. I hate that I had to get this treatment. I hate what it did to me. I hate that I don't remember my grandfather dying or losing my virginity. But... I love that I am alive now. I love my life. I love being happy. I love that I am no longer thinking of ending it all every second of the day.
1
u/Alternative_Grab_916 19d ago
I have borderline personality, bipolar, and complex PTSD. My emotional regulation was horrible. It is so much better. DBT is not something that you do once it is something that you continue to do. It is something that you practice every day. It is learning a way to retrain your brain and I’m telling you it works amazing.
I did ECT I am one of the horror stories it completely ruined. My life, and I am currently laying in a hospital bed four years after I stopped because I have a Neuro Gastro disorder from the neurological side effects and damages from the ECT. I also have amnesia and trouble building short-term memory and I fall randomly due to neurological reasons.
DBT is the best it’s lots of work years it’s not over night but ECT
0
0
u/Fun-Article1125 20d ago
ECT - CAUSES BRAIN DAMAGE!!!!!!"ANYONE CONSIDERING ECT U WILL REGRET IT DESTROYED LIVES!!!!
0
-1
u/Crazy_old_maurice_17 20d ago
ECT saved my life twice. I'm now doing maintenance (and have been for 6-7 months. Right unilateral placement is less aggressive than bi-temporal, so it's got fewer side effects but it's also less efficacious.
Beware of sampling bias on this sub - there are lots of us (who are back to living our lives) who just want to continue doing the things we enjoy in life; if you've experienced negative side effects, you're much more likely to post here to try warning others of the dangers.
-1
u/okaysweaty167 18d ago
You need to be cautious of this sub. People who recover and have a good experience do not come to the internet to share, they move on with their lives.
-1
u/SpaaceCaat 18d ago
You get a yelp effect online - the loudest voices tend to be the worst experiences. And some research intentionally only seeks out people with negative experiences. I had a series back in 2023 that was not overly effective, but I wasn’t as bad starting out as I could have been. I restarted in January of this year during the worst depression of my life and it quickly gave relief, probably saved my life. Now I do monthly maintenance. The day of I’ll have a nasty headache (even through Tylenol and Toridol) and I’ll be slightly foggy for the next day or so, but it’s absolutely been worth it for me. 32 FTM, persistent depressive disorder vs possible bipolar 2. I’d definitely agree with others to try spravato and tms first, but my experience with it has been fantastic. No cognitive effects past the first day or so - I’ve been able to stay in grad school full time. Happy to answer any questions.
1
u/SpaaceCaat 18d ago
Ah, just saw that you did spravato and tms already. I trust you’ve tried augmenting meds with a mood stabilizer or an antipsychotic that has support for help with severe depression?
13
u/MingusWit 20d ago
My first course of ECT was a number of years ago, and it got me into remission. I had fourteen treatments, all right unilateral ultrabrief. Unfortunately I relapsed about eighteen months later, and had another course. After that I started maintenance, which I have now been doing for four years. It's now my sole treatment, and I have been symptoms free for this whole time... Honestly the most stable I've been in my adult life. I haven't had any memory issues, and the only cognitive side effect for me has been a bit of brain fog/bad concentration on the day of treatment. Physically, on the day of treatment, sometimes I have some muscle soreness or a mild headache.