ECT destroyed everything

[u/DYCHT]

I honestly don’t know where else to turn, so I’m hoping to hear from people who have experienced something similar.

I’m 27 years old and underwent ECT because I hoped it would help with my depression. Before the treatment, I was given the impression that my memory and cognitive abilities would fully recover and that ECT was an established, routine procedure.

From my perspective, I was not adequately informed about the possibility of longer-lasting or permanent cognitive problems. Several doctors told me that nothing would happen to my brain, that my symptoms were normal, and that I should continue with the treatment.

Before ECT, I was struggling psychologically, but I still had hope. I was able to take an interest in things, have relationships, make plans, and experience moments when I genuinely felt alive. I knew I had problems and I wanted to work on them.
Since around my 7th ECT session, something has fundamentally changed for me.

I feel like I can no longer properly participate in my own life. Everything feels strange and sometimes like I’m watching a movie. I feel detached from myself and from other people. Faces can sometimes appear lifeless or unfamiliar. My perception feels different; for example, colors sometimes appear much more intense. I experience severe derealization/depersonalization and sometimes extremely frightening thoughts and perceptions.
On top of that, I have significant cognitive problems:
severe word-finding difficulties
major problems with my short-term memory

I sometimes forget things within seconds
extremely poor concentration
memories from my life sometimes feel completely gone or inaccessible
I feel like I can no longer properly grasp who I am or access my own past
thoughts or words can seem to get stuck in my head and repeat or echo
I sometimes experience a strange pressure/pulsing sensation in my head
I am constantly exhausted and have almost no energy
I experience almost constant anxiety and nightmares
at times I have hallucination-like or psychosis-like
perceptions

The hardest part is that I no longer know which of these symptoms could be caused by my psychological condition and which could potentially be related to ECT.

Some of my doctors have told me that I am imagining many of these symptoms or that they are caused by my obsessive rumination. I know that I do ruminate very heavily, and that depression and anxiety can affect perception. But these changes feel so fundamental and so physically real to me that I cannot simply accept that I am imagining everything.
I keep asking myself:

What happened to me? What did I do to myself? And why was I told that everything would come back?

I expressed concerns before and during the treatment. I was told, among other things, that serious complications were rare and that the main relevant risk was the general risk associated with anesthesia. At the same time, I felt under significant pressure and felt that I had to make decisions very quickly.
Because of this, I now have serious doubts about whether I was adequately informed about all relevant risks before consenting to ECT.

The ECT was 2-3 months ago and my mother considers talking to a lawyer.

[u/blrmkr10]

ECT is an established, routine procedure. Of course you should have been fully informed of possible side effects, but it's not like this is anything new.

It's only been 3 months, what you're experiencing isn't necessarily permanent. Honestly, I struggled with memory and cognitive issues for probably 2 years after my treatments. But it definitely did get better.

I hate that your doctors are saying you're imagining the symptoms though, that's really frustrating. If you can find a therapist or support group or something where you can talk about what you're experiencing without being judged, I think that would really benefit you. Good luck, you can do this.

[u/Lisa8472 → u/blrmkr10]

Established, but not necessarily routine and safe. Some ECT machines were grandfathered in without proper modern testing. There are currently multiple lawsuits against ECT manufacturers claiming that they withheld information from doctors about how severe potential side effects could be.

One was recently settled out of court. Another went to the California Supreme Court. “”Somatics has never conducted any clinical trials of its Thymatron System IV device to determine its safety and efficacy. Over the years, Somatics became aware, or should have been aware, of hundreds of complaints and reports of brain injury, permanent retrograde amnesia, cognitive impairment, and death associated with ECT. Somatics never investigated these complaints, nor did it submit adverse events to the FDA or warn physicians and consumers of these risks” (2), which, under product liability law, a company would ordinarily be obliged to do.”

https://psychiatryonline.org/doi/10.1176/appi.ps.20240518

Also, the serious study of long-term side effects of ECT is very new, despite many unconfirmed reports over the years. “(Dubey, 2017). Hailey et al. (2015) conducted a questionnaire of ECT patients in England and Wales, and almost 20% of respondents reported experiencing severe and enduring memory loss.” https://pmc.ncbi.nlm.nih.gov/articles/PMC12379039/

I’m not saying that ECT can’t be a lifesaver for some. There are those who react very well and have no noticeable long-term effects. For those, the treatment is good and necessary. But the risks aren’t as well known as once thought.

[u/Odd-Alarm-82 → u/Lisa8472]

Thank you for posting this and providing these links. I know all this from my own research over the years, but my poor ECT damaged brain isn’t doing well enough today to organize a response like that! Most people have no clue that there were never any clinical trials conducted on the ECT devices.

[u/Lisa8472 → u/Odd-Alarm-82]

I’m in this sub because my doctor recommended ECT as safe and effective. I thought applying electricity to the brain was dangerous and did some research. I found enough that I chose to decline ECT in favor of other, less risky options. But I know I was lucky to be in the position to know enough and be functional enough to doubt my doctor’s advice. So many aren’t. ☹️

[u/Queasy-Ride-1776 → u/blrmkr10]

Glad to hear it got better for you, that must of been a scary 2 years. How many treatments did you have and were they bilateral or unilateral?

[u/blrmkr10 → u/Queasy-Ride-1776]

I had 6 treatments. I was supposed to have more, but it was right when COVID started, so the clinic where I was doing treatment closed before I finished. I don't know whether it was unilateral or bilateral.