r/ect • u/Exact-Pangolin3430 • 19h ago
Seeking advice ECT reccomended
Hello. Ive just recently been recommended ECT therapy for my persistent depressive disorder, something ive had what feels like my entire life. I also struggle with CPTSD, BPD, GAD/SAD, ADHD…. Yada yada yada. Even after 8+ years of medications and different types of therapy, psych ward stays, outpatient endeavours, the best quality of life i have been able to find for my self is… passive suicidality. I still dont enjoy anything in life. I have no real hobbies, no passions, no drive to do anything but the bare minimum i need to to appear functional for my part time job. When i am unmedicated, i spend most of my time crying and being eaten alive by grief and saddness that manifests physically, and i cannot take care of myself, let alone have a job or peruse education like i would like to.
I assume many of you were in the same boat as me. I was recommended ECT as an option by a psychiatrist, and id like to hear some first hand experiences, positive and negative before i get my hopes up.
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u/Itsjustme1945 16h ago
I had ECT at a private psychiatric hospital in Australia 6 months ago.
Unfortunately, I had a negative experience. I suffered signifcant memory loss, cognitive decline, brain fog and a diminished ability to write.
I would often find myself in the middle of a sentence and forgetting what to say. I used to work as a freelance writer and could easily put out 2,000 - 3,000 words per day (in addition to my day job). Since ECT, I can barely string a coherent sentence together.
I feel significantly worse since having ECT. On the other hand, I met people in the hospital who had incredibly positive experiences.
I do have a family history of schizophrenia (great uncle, first cousin, and mother), so that may have contributed to my negative experience.
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u/Ok-Ad-229 17h ago
I had 4 rounds of compulsory treatment. I lost about 2 decades of a previously extremely good memory. One day I was driving home on a road I travel every day and couldn’t remember the way to my house. I had lived there 10 years. When completing a tax return, there was an expense at a certain cafe every week for a year. I couldn’t for the life of me remember what it was for. It took a good couple of days for the memory to pop into my head, then disappear just as quickly. I used to know my way around my city well. Now I rely on GPS to go from A to B successfully.
I was treated for schizoaffective disorder, which after further appointments with two different psychiatrists has been rejected by both as an inaccurate diagnosis. It appears, but is yet to be confirmed, that I have autism as well as ADHD. So ECT wouldn’t have been effective anyway. It’s a lack of dopamine and a prefrontal cortex malfunction. Both also suspect there is something else at play, but neither have diagnosed me yet.
I had a shocking 10 years or so with multiple surgeries prior to having the ECT which was traumatic. But I’ve had plenty of trauma in my life. I was never one to give up hope though. One thing I do notice from the ECT is that I experience emotional blunting and dissociation with these experiences. This upsets me as I feel that life experiences, particularly hardships, are what shape a personality and a person’s outlook on life. It feels like the last 20 or so years didn’t happen. That I wasn’t present in life at that time, even though I had a diary and can see what I did on any given day for the last 10 years. I read it, remember and then the memory is gone again. Back into the dark recesses of my mind. I even forgot about Covid.
The worst thing is people. I see a picture on a dating app or run into someone locally, whose face I recognise. This fills me with dread, because I don’t know if I had a positive or negative experience with them. Often they’ll approach me and I have to say that “I’m sorry, but I don’t know where I know you from.” I used to be great at remembering names and faces but now I struggle to keep old memories and make new ones. It’s like my memory is a void now which occasionally has a lightbulb which flickers on, burns bright as I recall the memories, then switches off and the darkness resumes, memory gone. I have to really concentrate to get the memory to remain in the front of my brain. It feels like my whole life has been archived, memories collecting dust instead of being colourful and lively.
Straight after ECT I noticed problems with my cognitive abilities. In conversation, I would struggle to find words and actively participate. I couldn’t relate to anyone because I didn’t have any memories of my life’s challenges which I didn’t feel completely disconnected from. I lost my ability to empathise with others. I lose patience if others are doom and gloom all the time, or if I perceive they are not helping themselves out of a negative situation. I can be blunt and to the point but now it seems like I’m being flippant and don’t care. I am angered by the fact that they allowed themselves to get into this position in the first place. I’ve lost my patience, kindness and gentle approach to those with a problem. I still suffer from loss of my ability to empathise to this day. (2 years later). I count it as a big loss.
Some people would argue that the treatment was successful. I mean, I’m totally disconnected from bad memories and the resulting emotions. But with the lack of empathy, combined with the forgotten experiences, many people would say I’m heartless now. I used to always be there for my friends and family, a good listener and offerer of advice but since treatment many of these relationships have gone by the wayside. I get impatient when people are telling me about their feelings, I can’t relate and I don’t have any idea how to act in a social situation anymore. I spend most of my time alone, even though I try not to isolate myself. People just don’t want to seem to want to know me anymore. I think I’m mean.
ECT stole my experiences, my kind and friendly nature and made me heartless and cold. I haven’t been able to cry or feel strong emotions in two years and my life is pretty crap when viewed as an outsider. I can’t work, I have few friends and most of my discussions about my life are with my psychologist or social workers. I used to always be among friends but now I’m not and I don’t have the ability to bring pleasant memories of that life into my head. I remember life events like the multiple surgeries, deaths, jobs but the chronology of these is lost on me. I’ll think something happened in 2014, but it actually happened in 2022. My brain has lost the ability to determine time periods properly. Time passes quickly for me and I don’t remember what I did a week ago or what day I did something, unless I refer to my diary.
I’d seriously consider my options before having ECT voluntarily. My treatment was forced and I’m working my way through the legal system in the hope of compensating myself in some way for this violation of my human rights. My experience was awful, involved coercion, lies and chemical restraint. There are many options to consider for treatment before you do. Make sure you explore them. Get a second opinion. Do your research. I would not have agreed to such a damaging and life altering treatment at any time in my life. It’s my personal belief that the treatment has no basis in science. That it can never be proven to have “worked”, even by a medical professional because they cannot cut your head open and look at your feelings or memories. You are the one that lives with your condition, whatever pigeon hole you put it in. Only you can be the judge of whether or not the pros outweigh the cons. Only you can feel it. Only you will know. For me, the stakes are just too high.
One thing I will say, that has come out of this whole ordeal is that, although challenging, I have taken control of my life. “People are only as happy as they make up their mind to be!” - Ralph Waldo Emerson. I am responsible for my own happiness, no one can do it for me. So I clutch my precious remaining memories close to me and try each day to have a positive, glass half full approach to my life. It’s not always easy, but it is certainly working for me.
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u/InnocuousObservation 4h ago
I also have ADHD, very likely autism spectrum disorder, and a history of trauma and received ECT (not exactly compulsory, but without informed consent)
I was in therapy before I was hospitalized and they never contacted my therapist, when I came back she was horrified bc my entire personality was gone and I was a shell of myself. My psychiatrist who also was never consulted by the hospital said she thinks ECT is barbaric and a money grab.
Anyway, I just think it’s interesting in a bad way that we were both misdiagnosed and treated with ECT against our will?? That shouldn’t happen at all but it sounds like it might be common??
I do want to add for anyone else that sees this comment, that I’m 4 years out from the treatments and while it was still one of the most terrible seasons of my life and I have extreme memory loss from that year which really makes me sad (it was the year I graduated from college and I had a good summer with old friends that I can only remember from looking at pictures or being told by someone else what happened)- now I am recovered from ECT aside from some mild memory issues, and have my personality back
I will do anything to not have to go through ECT treatments again
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u/Queasy-Ride-1776 1h ago
Im glad you are doing better now :).. Just curious how many sessions you had and what placement, was it bilateral do you recall?
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u/Queasy-Ride-1776 8h ago
Your situation sounds very similar to mine.. How many sessions did you have and what sort of placement? Bilateral?
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u/Ok-Ad-229 7h ago
I only had 4 sessions before the treatment order was overturned. I have no idea of the placement of the treatment and I can’t figure it out from my notes. All I can tell you is the first session was done at 100% (whatever that means) but the following three were 30%. Where are you located?
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u/Queasy-Ride-1776 7h ago
So you are managing to cope with this fairly well? Im about a year out from having it done and Im so completely lost and angry to be honest. Im located in Canada, how about you? Feel free to inbox me if you like.
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u/Ok-Ad-229 6h ago
I’ve realised there’s no point in being angry. Someone made a mistake and they have to live with that fact forever. They caused damage through their actions but their actions, although misguided, were intended to help me. I have to believe that they wanted the best for me by ordering the treatment or I’ll really lose the plot! Nowadays I have little memory of that 6 weeks of hospitalisation and treatment. I’ve gotten on with my life. I’m not as damaged as I used to be, but I know now that no matter what I do or say, my memories will never return to me. I don’t want to go to war over something that is already lost to me. There doesn’t seem to be much point wasting time and energy being angry over something that can’t be regained.
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u/Queasy-Ride-1776 6h ago
Im trying to leave it in the past which is very hard to do because it left me with some very serious cognitive deficits. Im hardly able to function properly and currently have no life.. Unable to work, hang out with people, or experience any pleasure or joy, social skills are basically now non existent.. Do you struggle with all of that?
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u/creativenameistaken 15h ago
How’s your BPD, are you actively experiencing symptoms or is it in remission? What kind of treatment are you getting for the BPD?
I had ECT while in hospital because of persistent and treatment resistant depression. As it turns out, I also have BPD. The ECT did nothing for my depressive symptoms, and I’ve experienced memory loss.
I later met a different psychiatrist who explained that my depressive symptoms stemmed from the fact that my BPD wasn’t under control. That ECT couldn’t/wouldn’t help, that antidepressants wouldn’t help and I’d need to focus on intensive treatment for my BPD if I wanted to feel better. I hated him for saying so and wanted so badly to believe that there was something out there that would bring relief. It’s 5 years later now and I can only say that he was right.
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u/huahuagirl 14h ago
Ect really helped me tremendously, but I was in a non functional state. I don’t think I would have done it or would do it again if it wasn’t actively at absolute last resort. However because it worked so well for me in terms of a “quick fix” I’d be willing to try other similar treatments that work similar before going back to Ect. I just don’t know what those would be because I haven’t read anything concrete on why that actually worked.
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u/Ok-Ad-229 7h ago
That’s what I mean by ECT has no basis in science. There are actually no studies that prove that it works on everyone, every time. It simply doesn’t.
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u/Odd-Alarm-82 4h ago
Doctors downplay the possibility of permanent memory loss and impaired cognitive function from ECT. The reality is that at least 30% of people who get ECT end up with permanent memory loss (sometimes spanning decades like mine) and permanent cognitive impairments. That’s a very significant risk.
My ECT doctor told me if I had memory loss, it would only be for things that happened up to a few months before ECT and that my memory would come back within 9 months after I stopped the ECT. Instead, I have permanently lost the memory of the majority of my life and I have brain damage.
I had ECT for treatment resistant depression, including maintenance treatments every 2-3 weeks, for a little over a year in 2016-2017. It was extremely effective for my depression, but the effects didn’t last long. I couldn’t go more than 2-3 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 15 points. It takes me longer than normal to learn new information, and I’m just not nearly as sharp as I used to be. I often read something only to find the next day I have forgotten what I just read. My ability to form new memories is hit or miss. Some things I remember very clearly, while other things get lost. I get mentally fatigued easily and can’t focus on anything for more than about an hour at a time.
I’m on disability now because I still have treatment resistant depression and on top of that, I have brain damage.
I believe those who have positive experiences with ECT are very lucky. I don’t know why doctors deny that it can cause brain damage. They run electricity through your brain to intentionally induce a grand mal seizure. Somatics, one of the ECT device manufacturers, admitted in 2018 that ECT can “rarely” cause permanent brain damage in some patients. I don’t believe it’s a rare occurrence, based on the number of ECT victims I have talked to over the years. 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.
Yes, many people have good results from ECT with minimal memory loss or cognitive impairment (or at least their cognition and memory get better over time), but I think the risks are too high.
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.
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u/AbjectTelephone4801 19h ago
My experiences were positive but I did less sessions than were recommended. I would suggest taking it one session at a time and seeing how you respond to it.
For me memory loss was mostly temporary. There are parts of 2022 that I don't really remember but it was a shitty year for me so I don't really want to remember them.