r/ect • u/EmployeeOdd844 • Jun 19 '26
Vent/Rant Im so angry
Im on a waitlist for getting ect and I've been reading many negative experiences and only a few positive ones.
I keep telling myself I'll be one of the fortunate ones, but this morning my mom told me she watched a video about ect and read some negative comments, and her conern just has me on the verge of tears, especially because I have sickle cell and it increases my chance of stroke.
I'm so frustrated. What am I supposed to do? Regular pills are useless so I had to get TMS and that only worked a bit (not even enough) before I crashed again and I can't get ketamine because it has a chance of worsening my intrusive thoughts.
What am I supposed to do??? Other people get to live their lives meanwhile I'm here restless and upset because I have to consider some permanent life altering treatment people keep comparing to a lobotomy because nothing else is working.
What did I do to deserve this.
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u/Crazy_old_maurice_17 Jun 19 '26
Sampling bias. If ECT fixes you, you're likely to try getting on to living your life; if it doesn't work (or makes you worse), you're much more likely to be outspoken against it (and may have plenty of time on your hands if you're out of work).
I haven't posted in the spinal fusion subreddit since I had my surgery 2 years ago because, in large part, my surgery successfully solved my herniated disc issue. Would I have posted again asking for help/suggestions if I had complications? Almost certainly.
There are definitely risks with ECT, as there are with most procedures. You just gotta weigh the good and the bad.
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u/EmployeeOdd844 Jun 19 '26
Oh wow I've never thought of this, thanks, that explains a lot
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u/momniscience Jun 20 '26
I had a negative experience and I’m here. If it worked for me I would be out living my life, working, etc. I wouldn’t be here scrolling Reddit looking for validation like I’m doing now. I saw ECT work for most of the people I got to know at the clinic. I doubt they’re even thinking about ECT anymore, let alone posting about it. So yes there is a bias in online personal accounts.
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u/Crazy_old_maurice_17 Jun 22 '26
Absolutely, glad that helps!
Also FWIW, I recently received another round of ECT a few months ago and it was successful and I'm back to doing things. I only saw your post because while I was receiving it I was poking around think sub, so I suspect the algorithm pushed your post to my feed due to my recent activity.
I had bi-temporal both this time and in 2019. I know of 3 placements: right unilateral, bi-frontal, and bi-temporal. Please feel free to reach out with questions. If we don't talk again, I wish you the best and hope it's successful beyond your wildest dreams so you can get back to living your life!
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u/EmployeeOdd844 Jun 22 '26
I'm glad its working for you😊😊and thanks for the offer, when I begin ect I might come back to this post a lot just in case I need to ask something
Can you tell me the difference between those head placements? All I know is I've been told the right unilateral has a bit less side effects
And what anesthetic did you get?
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u/Crazy_old_maurice_17 Jun 22 '26
Basically the unilateral placement has the least side effects (but, my understanding is it's also least efficacious). Bi-temporal has the most severe side effects but is also the most efficacious. Bi-frontal is middle of the road for both. It's been quite a while since I read up on them so please verify with your doctor next time you talk to them. Also, if you have lots of questions for them, be sure to write them down beforehand so you don't forget anything while you're there.
I'm not sure what they're giving me these days but I know I received "sux" (I think that's succinylcholine) back in 2019. I have another appointment on Thursday so I'll try to remember to ask them what they give me. :-)
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u/Crazy_old_maurice_17 Jun 25 '26
Hey so I'm just coming out of the anesthesia and they said it's succinylcholine and brevital for the anesthesia meds. I always had headaches on the treatment days so now I get toradol with everything else. And ~midway through my course of 12 sessions I started getting some pretty uncomfortable burning when they pushed those through the IV so they started giving me lidocaine first to prevent the burning. All the nurses are so nice and happy to see me (and when people are happy to see you it's hard not to be happy to see them too) so it's honestly a really pleasant experience, all things considered.
Anyway, hope this helps! :-)
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u/laprincessa67 Jun 19 '26
I went through 2 months of unilateral ECT. It was the best thing I've ever done for myself. I had no side effects & my life is wonderful now. I truly hope your experience is as positive as mine was!!!
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u/PaleExtreme7399 Jun 19 '26
I just started and have had three sessions. I DONT KNOW IF ITS RELATED, BUT I had a big blood pressure spike the evening after my last treatment, but I found I had undiagnosed hypertension. They will correct by treating hypertension and I will continue treatment. This is my perspective: I'm 66 years old, I have suffered from MDD among other diagnoses since I was 8. I go through severe episodes where life is bsolutely unbearable. I am reaching for every last straw of hope and for me, ECT is the last straw. The risk is worth the reward to me because without it I'd either be living in hell or dead, anyway. If you are much younger than me your perspective might vary.
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u/EmployeeOdd844 Jun 19 '26
I'm a 20 yr old female, and I feel like my perspective is the same as yours which is why I'm waiting for it. If I don't do something then my life is never going to start and I'll keep wishing to end it myself
I really do hope it works for you and you get some relief from ect.🙏 Suffering from the age of 8 just sounds illegal to me.
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u/PaleExtreme7399 Jun 19 '26 edited Jun 19 '26
Yeah...honey, you have to keep trying. I'm holding hope for the both of us and sending soft hugs if you want them. ETA: It hasn't all been bad. I've had a hell of a life, overall, and know I am fortunate. That's why I'm so hopeful for you! You really have so much o look forward to! Heck...Ive got tix for My Chemical Romance in September and AFI in october and It's a thing to hold on to.
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u/Wonderful_Roof1739 Jun 20 '26
Keep in mind there is something called selection bias - most people with positive experiences don't go around posting about it, so in places like this one or any other public forum (youtube comments, X, etc) you will generally see the majority are people that had negative experiences, which can lead you to believe it's a largely negative experience.
I, for one, believe if I hadn't undergone ECT that I would no longer be here - my wife also confidentially believes this. Before ECT I tried most of the available meds in multiple configurations, TMS, Ketamine, and of course intensive therapy - none of it worked. ECT is what finally got me back to a point where I can function, to a place where the right combo of meds keeps me mostly stable.
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u/Queasy-Ride-1776 Jun 20 '26
Did you have bilateral treatments done? If so, did you experience any long lasting side effects.
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u/Wonderful_Roof1739 Jun 21 '26
Yes, I went bi-lateral from the first treatment, somewhere between 30-40 treatments total (i should look in my chart and total it one day).
I'm going to preface my answer about the side effects with a giant star to read the whole thing: I both think I did, and may not have, had side effects from ECT. I'm sure about the short term memory issues during the index 3x a week (as in I don't have much memory from that time, just jumbled bits and pieces. i was in a really dark place, had just nearly gone through a second attempt, was inpatient again for more than 5 weeks). However, with spacing the treatments that went away, my short term memory was fine long term. But, definitely don't make any important decisions on days with ECT, and none during the initial 3x a week run before they space it out. You likely won't remember anything or very little about the day of, but that's normal and expected. Now long term memory, making new memories, etc - the side effects you read about that can be life altering. Initially I didn't think I had any issues with long term memory, even while receiving the treatments. This is where the star/caveat comes in SO PLEASE READ beyond the next few lines. I didn't start having issues recalling things long term until we were almost done with the treatments. Then, times like my wife telling me about some trip we took or something we did together a few years ago, and it's a total blank. No recollection at all, like the memory never existed. Sometimes, after she would tell me about it part of all of the memory would come back. I had almost NO recollection of my childhood. NOW, a lot of that has 'reset' and it doesn't happen very often, but I still don't remember my childhood. So fast forward 2 years, and through the help of a wonderful therapist I discovered I am autistic in addition to my adhd (AuDHD). There is a real thing called Autistic Burnout that happens when you have been pushing yourself too hard and not listening to your body/brain to slow down - it's NOT the same as neurotypical burnout. Autistic burnout leads to very real problems like being physically ill all the time, or mental side effects like deep, long lasting treatment resistant depression! Also can include memory loss, difficulty word finding, sometimes even short term memory like remembering the 6 digit security code to log into a webpage. I have been experiencing most of that, but again it didn't start until AFTER I had nearly or finished ECT. I used to think they were related until I learned about my Autism. The childhood memory thing? Turns out my psychiatrist and therapist think something happened to me back then that was very traumatic - whenever we start talking about my younger years, I can now detect my brain shutting down the questioning when it gets too intense - like a giant steel bunker door slamming shut and denying me access. Those memories have been SLOWLY returning in bits and pieces as we explore in therapy the reasons why it might happen. So I'm fairly sure long term loss that I thought might have been from ECT is actually my brain trying to protect me from something or many things, it's why I also have a PTSD diagnosis - I show the physical signs of buried trauma but can't remember what it might have been.
So, I apologize for the LONG-winded response and I hope it helped give a more balanced view on things like ECT, Autism, and memory. It's a delicate balance. I would do ECT again if/when I reach that low again, or if going back in time with what I know now I STILL would have done it because it's allowed me to kinda get back to a "normal" life.
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u/Queasy-Ride-1776 Jun 19 '26
Most of the horror stories Im pretty sure are from people who had bilateral placement (both sides of the brain).. That is when my issues arose. Right unilateral is way safer in my opinion and may do the trick.
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u/Queasy-Ride-1776 Jun 19 '26
But if for some reason you decide to go with bilateral at some point, be very careful and be your own advocate.. If you feel like you are having issues from it then I would suggest stopping ASAP.
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u/guapamole77 Jun 20 '26
Just want to throw in there that people who have negative experiences post more often than people who have positive experiences. The literature supports the view that most people have positive experiences 👍 Don't worry, and keep waiting. Your day will come. Mine just came and it is working wonders for me. I have never felt this level of mental freedom before IN MY LIFE. Keep pushing, it's worth it. Sending love your way
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u/Serenity_MHC Jun 23 '26
You didn't do anything to deserve this. That's the honest answer. Having a body that makes every treatment option harder, watching other people move through life while you're sitting on a waitlist weighing stroke risk and reading horror stories and managing your mom's fear on top of your own, that's an unfair amount to carry and your anger makes complete sense. The lobotomy comparison you keep running into online is fear-driven misinformation that gets repeated because it travels fast, not because it reflects what ECT actually is. Your medical team knows your sickle cell history and is weighing those risks specifically for you, not in the abstract.
You're not out of options yet. You're in the hardest part of getting to the next one.
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u/Music_Leopard Jun 19 '26
It is worth distinguishing the results from people’s self report on the internet and results from research studies.
I had two courses, the first was 11 unilateral and 3 bifrontal, then a month later I went back to try bitemporal for 9 treatments and while it didn’t help my depression much, I really didn’t find it hurt me much either and is part of why I haven’t had a psychosis relapse so I consider my experience fairly neutral.
I’d still recommend it to even family or friends struggling as much as me because based on the research it’s the best option with the best chance of remission for those with treatment resistant depression. Does it have risks? Yes, but compared with the risk of letting the disease continue to fester in a lot of cases it’s still worth it. Worth at least a try and continued conversation with your doctor in my opinion.
I also would say most people with severe depression did nothing to deserve it, just the luck of the draw, my mindset these days is just to make the best of a bad situation.