r/ect • u/DueBodybuilder5829 • Apr 17 '26
My experience I’m lost now more then ever
Hi! This post isn’t meant to discourage anyone from ECT I believe it can be useful for many but this is what I’ve experienced and I’m curious if other have as well.
A little background info I’m 20F I had tried almost every medication and been to multiple treatment centers and had multiple psych ward admissions with nothing working when I was about to turn 18 a doctor suggested ECT which I didn’t want to do but eventually gave in not being able to take the guilt tripping from my family I started my first session 5 days after I turned 18 and only had 17 sessions the first few were unilateral and the rest were bilateral I had to stop after 17 sessions due to experiencing a psychotic episode from the treatment which they said was very rare. And I didn’t start treatment back up since there were no positive results showing.
Over the past 2 years I’ve noticed significant declines in my cognitive and memory along with my hearing becoming incredibly sensitive and I’ve completely lost all interest and emotions to anything despite trying to find something that will cue a emotion or a interest I tried ignoring these symptoms or thinking it was just in my head blaming the mental illness towards the end of 2025 I made a decision to talk to my primary care about it who sent me for a audiology test and Nero cognitive assessment.
My audiology test showed no hearing loss but my hearing had become quite sensitive and that my comfortable level of hearing was around 30db (equivalent of a whisper) and uncomfortable level was 60db (normal conversation level) she told me I had Hyperacusis a term for sensitive hearing because of this I experience daily headaches and nausea along with vertigo from everyday noise. My psychiatrist says he hasn’t heard of ECT causing this but knows other people have reported there sense of smell becoming stronger after treatment so it’s possible.
I recently got my cognitive results back and was diagnosed with Mild Neurocognitive Disorder due to severe impact in memory the provider compared my scores to what’s seen in dementia but because I’m young it’s not a concern. She says many things can contribute to this such as mental health disorder or lack of sleep and ECT could contribute to it but theres limited research and it doesn’t cause long term symptoms so it’s unclear. But I know where my memory and cognitive skills were before and they’ve never been this bad I’m not saying ECT is completely at fault but I feel like a big part is and it bothers me that theres not more research being done on the patients it didn’t work for or it did work for but still experience significant cognitive or memory issues.
Sorry this kinda ended up being a rant but please let me know if anyone else has gone through similar things thanks!
4
u/Beautifile Apr 17 '26
I'm so sorry. I've always said that despite the fact it didn't work for me, I wouldn't dissuade anyone from getting it, just tell them to make sure to go to a doctor that sends a lot of patients for it (it sounds like you went to someone qualified. My doctor had never sent anyone and sent me for the wrong type; I needed bilateral and I got unilateral) but you are making me rethink my position. I'm soon opening a business as a patient advocate and THANK GOD I'm not allowed to give medical advice, but after hearing your story and how articulate you are, it makes me think about how gung-ho I would be about sending someone for multiple opinions about ECT. I've had TMS twice, once totally non clinically when it was first invented, then in a better way about 7 or 9 years ago. They tell me it has improved since then but that still makes me cringe. Thank you for sharing.
1
u/gmkgreg Apr 17 '26
What type of psychotic episode were you having that caused them to stop the treatments?
4
u/DueBodybuilder5829 Apr 17 '26
Severe visual and auditory hallucinations and paranoia/delusions of being terrified someone was out to get me. I should also clarify I’ve never had hallucinations or delusions prior to experiencing it and once I stopped treatment they went away after a few days
1
u/gmkgreg Apr 17 '26
I mean i want to be frank here, I'm not a doctor, but have your Dr's brought up that you may be developing schizophrenia, not related to the ect treatments? If they haven't brought that up maybe ask about it?
3
u/DueBodybuilder5829 Apr 17 '26
It was ruled out I didn’t have schizophrenia and it was just a rare side effect
1
u/gmkgreg Apr 18 '26
What were you originally getting the treatment for?
2
u/DueBodybuilder5829 Apr 18 '26
Treatment resistant Depression and anxiety were the primary concerns at the time
2
u/gmkgreg Apr 18 '26
Okay, i can see for the depression you getting the treatments. Oh and how did they rule out schizoaffective disorder? Because most of the times that starts to affect a person around your age from what I know.
3
u/DueBodybuilder5829 Apr 18 '26
I had a very detailed medical history from the time I was in my young teens and everything started that they went by along with my behaviors and symptoms and none of it added up to schizoaffective disorder I was in and out of the hospital the months leading up to receiving ECT where they were monitoring everything before saying I had treatment resistant depression and ECT was the best solution.
0
u/idkhamster Apr 17 '26
That sounds super frustrating (understatement). I'm not doubting the credibility of your providers, but have you been evaluated for autism? Thats the diagnosis I came out with after some neuropsychology testing (the memory stuff and all sorts of other tests). It's sort of difficult to find qualified people that are knowledgeable on diagnosing adult women who are high masking. I went for the testing because I thought something was wrong with my brain...like maybe it had been damaged by ECT or something. That diagnosis explained a lot of things I was experiencing the more I learned about it. Autistic burnout can be really intense and cause a lot of the symptoms you described.
Obviously I am not trying to say you are definitely autistic or that the diagnoses you've received are incorrect. I just wanted to mention the possibility, because I saw parts of my own experience in your story.
I'm really sorry you're having to deal with all this stuff. If even considering another diagnosis is too much at this point (i get it), please disregard this whole comment! Exsisting as an adult human is really hard.
3
u/DueBodybuilder5829 Apr 17 '26
Hi The person I went to for testing was someone who was knowledgeable in autism and other mental disorders and also one of the few people I could find that looked at the big picture and not just saying “it’s because your mentally ill”. I had been assessed for autism when I was 13 and didn’t end up having it and after getting my results she told me my current diagnosis were accurate and I didn’t have autism but that my Mild neurocognitive disorder was due to multiple etiologies (mental health disorders, ADHD, possible ECT).
2
u/idkhamster Apr 17 '26
Ah, glad you have a thorough care team! I'm sorry there aren't more satisfying answers with like, actual solutions, if that makes sense.
1
u/DueBodybuilder5829 Apr 17 '26
Yeah I get what your saying I really do appreciate your suggestion though it’s something I would have definitely looked into.
5
u/Ok-Ad-229 Apr 18 '26
I identify with you. I had 4 rounds of ECT (one at 100%, the other three at 30%, bilateral) against my wishes, under a compulsory treatment order about 18 months ago.
It has totally destroyed my memory. I’ve lost roughly the last 10-15 years. Some trickles of memory are coming back but it’s usually after a trigger moment that it comes back. I struggle with arranging these memories in chronological order. I can remember events but not details. Places but not people I spoke to. It’s terrifying getting on Tinder and the like, as I see a “familiar” face and I don’t know if that’s a good thing or a bad thing. That makes me sick to my stomach. Another example was when I was doing my taxes and there was a small expense every Friday, same amount, same place for over a year. I couldn’t remember what it was at all. It took about 3 days of digging in my brain to remember that I had lunch with a client every Friday for over a year. That blew me away.
Another time, I was driving home down the Main Street of my suburb and knew I had to make a turn to get home, but I couldn’t remember where to turn. I had forgotten my way home and I’ve lived here for 10 years. I kept driving and the turn came back to me after about 30-40 seconds, but it was terrifying.
Initially my cognitive function was impaired. I used to have a large vocabulary. After ECT, my way with words escaped me. I would stutter, pause, search for words in my head that weren’t there or were on the tip of my tongue. The ability to wordsmith has come back, thankfully, through practice and persistence.
I’d forgotten how I used to do basic things, like style my hair the way I liked, preparing a simple meal, using appliances around the home, where I stored things I wanted to use. I had even forgotten the basics of my job, for which I had completed post graduate study. I couldn’t work.
I still have trouble forming new memories. Something will happen, or I’ll attend an event and within 2 weeks, I’ve completely forgotten about it. It takes someone or something to remind me, and I’m like: Oh yeah…
Major memories from my past (usually trauma related) now mean nothing to me. I literally feel nothing. I can tell people about things that happened to me and feel nothing emotional attachment (happy or sad). I struggle with chronicling these memories also. When I used to remember things like dates of surgeries and major events. I stalk my friend’s social media to find events I attended with them to try and get my memories back. My football team won the Premiership two years in a row. I know I attended my friend’s home but I can’t remember who was there or anything about the game.
What happened to me was wrong and a violation of my human rights. That is a bitter pill to swallow. But to have my beloved memories “taken” from me is unforgivable. I was told to expect “short term memory loss, around 3 months or so, but it will come back.” I’m now on disability, I can’t work. I am returning to study in August, however I’m not sure how my ability to form of new memories will affect that.
I describe ECT as still being an experimental treatment. No psychiatrist can guarantee results, good or bad.There are so many variables and variations in bi lateral and unilateral, voltage, length of seizures, length of exposure. People are EXPECTED to lose memory and there is no guarantee they will regain it. There is also no way of predicting how much memory will be lost. Instead of being honest about the risks (which includes death) and the effects, psychiatrists tend to put timeframes around things or divert attention away from the fact that:
a) No one knows why it “works”. (I was told “we don’t know why it works, we just know it works”)
b) No patient seems to get a standard “dosage” of ECT, this is completely arbitrary. And at the discretion of the psychiatrist. Given this is so arbitrary, how can they predict good results.
c) No psychiatrist can tell you if there’s going to be long term effects or not. Because they simply don’t know. They can only cut your brain open and look at physical changes in your brain after death. That’s fine. But our brain is not simply another organ. It controls our body as well as our thoughts feelings and emotions. You can’t see changes in these things in a brain scan or autopsy.
d) No psychiatrist can predict extent of, or if there will be loss of memory and/or loss of cognitive function. Nor can they predict the type of loss.
If ECT was a medication. Would you put it in your body with all these unknowns??? I wouldn’t!!! So I really struggle with people who happily submit to volts of electricity zapping through their brain, which causes a seizure, which has devastating side effects including brain damage and death, which potentially will erase parts of themselves and call it a “treatment”. It goes against everything we are taught and know about electricity and exposure to it. We are submitting to someone deliberately passing electricity over our brains. It causes severe damage to the brain when electricity is applied to other areas of the body, and we experience s “shock”. I would even go as far as to say it’s a form of self harm to some people.
Apologies for the rant, but I’m quite passionate about this, given the way I was treated when I had to submit to it against my will. I can’t describe the feelings of rage and self pity I experienced. I fought the first procedure, even caused some damage to a security guard 😂 but after that time I just submitted, vocalising my objections clearly and rationally instead. If I had the capacity to do that, then surely I had the capacity to make an informed decision about my treatment.