I want my story to serve as a warning to anyone who is considering ECT. I understand what it’s like to live with severe depression and to feel like you have run out of options.
I was at that point, and I was desperate enough to subject myself to ECT. My desperation and my depression clouded my judgment and led me to believe my doctors and the positive stories I had read about ECT.
I believed my doctors when they told me that ECT was perfectly safe and that it never causes permanent memory loss. Please don’t fall into that trap. I have brain damage now, and I will probably never get my precious memories back.
But I hope that by sharing my story, I can prevent other people from suffering the profound loss that I have to live with.
Your doctor may tell you that it’s rare to have memory loss extending beyond a few months before the treatment.
I don’t think it’s anywhere near as rare as they claim. I am one of the supposedly “rare” cases. ECT wiped out DECADES of my memory. My ENTIRE LIFE has been almost completely erased. That is not an exaggeration.
Before ECT, I had vivid memories of my childhood. Now, I only have very vague memories of my childhood.
After that, my whole life, starting in my teenage years and extending all the way through the end of my ECT “treatments,” is pretty much a completely blank slate.
I have a few random memories here and there, just little bits and pieces, but that’s it. I don’t remember most of the time I’ve spent with my wonderful husband, who I’ve been with for 13 years.
I barely even remember my own mother, who passed away 12 years ago. It has been devastating for me.
I am extremely lucky that I have been able to keep my job.
I know a lot of people have lost their jobs after ECT because the memory loss and cognitive impairment made it impossible for them to be able to do their job anymore.
In my case, after ECT, I still remembered the basics of how to do my job.
I think this is because I returned to work immediately after my initial series of ECT, and I continued to work while I was receiving “maintenance treatments.”
However, I did forget the details of how to do many of my job functions, so I basically had to relearn a lot of things. I am fortunate to have a supportive boss who has been patient and accommodating with me.
And, to add insult to injury, the ECT ultimately didn’t even work. It seemed to work extremely well at first, giving me complete remission of my depression.
But the antidepressant effect only lasted for a short period of time, so I kept having to get more and more treatments to maintain the effects. I was okay with that at first, because even though the effect wore off quickly, I was able to maintain full remission from my depression as long as I kept getting a treatment every 2-3 weeks to prevent a relapse.
I had been dealing with severe treatment-resistant depression for 7 years before this, so being able to feel completely well and like my normal self for an extended time period was like a miracle to me.
At first, I didn’t notice any significant memory loss. But after continuing to get “maintenance treatments” for a while, one day after a treatment I looked at a picture of me and my husband on our honeymoon in Ireland back in 2009 and realized I didn’t remember our trip at all. It was the most horrible feeling.
I thought about my life with my husband, trying to figure out what other memories I had lost, and I found that I couldn’t remember ANYTHING from the entire 12 years I had been with my husband. It was literally like my life had been erased. I tried to think back farther than that, and the last thing I could remember was about 20 years ago.
I was in shock. When I started the ECT, I thought I would be able to stop if I started to notice any significant memory loss. I had no idea that such a huge amount of memory loss could happen so suddenly.
You would think that I would have stopped getting the ECT then and there, but I was convinced there was nothing else that would effectively treat my severe, “treatment-resistant” depression.
I had taken just about every medication there is, and they either didn’t work at all or only worked for a few months. As bad as my memory loss was, I still felt like it was better than living with severe depression, which was disabling at times.
And for some reason, I thought it couldn’t get any worse. I kept telling myself, the damage has already been done.
The memory loss happened after I tried to extend my treatments farther apart and suffered a major relapse that didn’t respond to my next treatment.
I ended up requiring another series of treatments just like the initial treatment series, three times a week for two weeks, to get me back into remission.
So I thought the memory loss had occurred because I had to get a third series of three-day-a-week ECT’s. (My initial course of treatments was a series of 12 treatments, three days a week for four weeks.
Then I had to undergo a second series of treatments a few weeks after completing my first series because my doctor had tried to space out my treatments too quickly and I relapsed).
I thought it was just too much for my brain to handle. Because I hadn’t experienced any significant memory loss before that, I figured that as long as I was able to keep the treatments at least two weeks apart, I wouldn’t suffer any further memory loss.
I couldn’t have been more wrong.
Looking back at it now, I can’t believe I agreed to subject myself to such an excessive number of treatments, but at the time, I trusted my doctors. I was so incredibly happy to be free from depression, and I just wasn’t willing to give that up. I kept telling myself that losing my memory was better than being severely depressed and disabled.
So I continued with my “maintenance” ECT for another year. (From start to finish, I subjected myself to ECT for a year and a half), and my memory loss ended up getting much, much worse.
It got to the point that every ECT was erasing my memory of everything that had happened since my last ECT.
So in addition to the devastating loss of my past memories, I was unable to make any new memories!
That’s when I finally decided I had to stop. I started looking into treatment alternatives, with a plan of starting a new medication while tapering myself off the ECT.
A couple of weeks before I finally stopped getting ECT, I was dealt another devastating blow. I discovered that even more of my long-term memory had been erased by ECT.
It had almost completely wiped out my entire life, all the way back to my childhood. The most heartbreaking thing for me is that I barely even remember my own mother, who passed away 12 years ago.
I was with her when she passed away, and I don’t remember it at all. I remember her only in a general way — no details of any time I spent with her.
I tried to file a malpractice suit against the negligent psychiatrist who did this to me, but I was unable to get an attorney to take my case.
Malpractice cases are very hard to win, unfortunately, and there has only been one successful case against ECT that I know of. That needs to change. These doctors need to be punished for their negligence.
The hospital where I received my ECT had a questionnaire to be filled out by my husband at every treatment, and he always voiced his concerns about the damage it was doing to my memory. But my doctor never seemed concerned about it. He never told me I should quit.
Before I started ECT, the doctor told me that if I did have any memory loss, most of my memory would come back within 7 months after I stopped getting ECT.
That hasn’t happened. It has now been two years since I stopped getting ECT, and I still have an almost complete loss of memory for my entire life up until I ended this horrible “treatment.”
It took some time for my short-term memory to recover, but it has gotten better. So at least I am able to remember things that have happened since I stopped getting ECT.
But it is really awful to live without your past memories. It’s like losing a part of your identity.
Yes, ECT does help some people, but is it worth the price of brain damage and decades of lost memories? I don’t think so!
For those of you out there with chronic, treatment-resistant depression like me, please don’t give up hope! You have other options besides ECT!
After ECT, I started taking an MAOI, which I was afraid to try before because the side effects and drug interactions sounded so scary, and because so many other drugs hadn’t worked for me, I thought, why would an MAOI be any different?
I was just completely sick of the “medication merry-go-round.” But guess what – it worked amazingly well for me! I felt SO wonderful. I did have the side effect of severe insomnia, which was hard to deal with.
Ultimately, I got to a point where sleep meds weren’t working anymore, and I had to quit the MAOI because I couldn’t sleep more than 2 or 3 hours a night.
Of course, I was terrified about having to stop taking it because I had tried every other type of medication already.
Luckily, I found a good psychiatrist who told me that often, an antidepressant that once worked well but “pooped out” will work again after you’ve been off it for a long time.
So I went back on the last antidepressant that had worked well for me, and sure enough, it’s working again, just as well as it did years ago before it stopped working. Of course, I know it is going to stop working again at some point. But when that happens, I know I can go back to the MAOI if I need to (because I will have been off sleep medication for a long time, so my tolerance to the sleep meds will be gone and I will be able to deal with the insomnia again).
I also know people who have responded very well to ketamine, so that’s something else to consider. It is helping a lot of people with treatment-resistant depression who haven’t responded to anything else.
And there are several other new medications being developed now that have different mechanisms of action than the antidepressants currently available, so hopefully, there will be new treatment options in the near future.
I would love to be able to get off antidepressant medications completely, but I don’t know if I will ever be able to do that. All of these medications have side effects – the one I’m on now makes me feel very tired all the time, so even though I’m sleeping much better than I was on the MAOI, I never feel like I’ve gotten enough sleep.
But if you’ve ever experienced severe major depression, you know that dealing with medication side effects is much better than being depressed. So for now, I’m just trying to focus on the good things I still have in my life, and accept my limitations, even though it’s frustrating.
I have brain damage. In addition to losing the memory of most of my life, I still have other cognitive issues that I have no doubt were caused by the ECT.
My short-term memory has gotten better, but it’s still not nearly as good as it was before the ECT. I also become mentally fatigued easily.
I have to take breaks from my work more often, and it takes me longer to do things that require a lot of thought.
I’m not as intelligent as I used to be. I recently had neuropsychological testing done that showed I have cognitive deficits.
ECT should be outlawed. It is barbaric – it has no place in modern medicine. And it is not even truly effective. The majority of patients relapse within a short period of time after ECT (6 months at the most, but more often within a matter of weeks, as in my case). I hope my story will reach people who are considering ECT and prevent them from destroying their lives.
God Bless You, and good luck with your recovery.