Posted by Spector on October 10, 2005, at 2:03:07
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on October 5, 2005, at 9:22:59
Hi. You asked, "Would you mind speaking a bit more about your experience with ECT? How much memory loss did you have? Was it difficult to get someone to give it to you?"
I guess this answer belongs on the not alternative board, but hopefully it won't be a problem.
Difficult to get someone to give it to me? No. Easy. I imagine any hospital with a psychiatric ward offers it. I did it at Yale as an outpatient. Just needed a doctor to call the doctor running the ECT program and refer me. Also did have to get and EKG done prior which they require. That was difficult only because every single thing is difficult for me in this state and because it meant a delay of another day or two before I could start the ECT.
Memory loss for me? Extremely severe for at least the year and one half prior to the ECT and virtually total for the six of eight weeks of the treatment itself. But also, huge chunks of loss going back several years. And, you know, you don't know what you don't remember until someone says something about something and you realize that you don't remember. This still happens regularly to me even with the ECT now being over two years ago. Though a portion of what I have lost or has been scattered has been what I think they call impersonal memory -- memory of events and learned facts. I am all too aware how much art history knowledge I have lost, for example, something very important to me.
But, some things, or portions of things have come back to me. Sometimes if Ray (my husband) or someone describes and event to me, it will have a familiar feel and bits of it will come back to me. And I have to say that compared to the months immediately after the treatments, there is a significant difference. At that time I could not remember where (prior to getting sick) I had gone for coffee every day for five years. Or how to get from the subway to our appartment. That was super disturbing. But much of that did come back.
However, still many many things have not (yet?) come back and it is distressing. To a fairly significant degree, I have lost a certain continuity to my life during the few years leading up to when I was given the Adderall and the year and a half following. I hate that.
But, I'll tell you, I'd hate it a lot less if the ECT had worked. And, I think I have to say that if I had somehow not tried it already, I would be doing it now.
But evaluating ECT seems to be an impossible thing. Maybe someone else on this board somehow knows more, but after dozens of hours of research done after the fact I have found three camps.
Before I go into the three camps, I want to say a couple of things. When ECT was first presented to me by a big name super-psychopharmacologist after about eight drugs (at that point) had failed me, he said simply, "ECT. It works." The doctor who actually administered it told me that I might lose some memory around the time of treatment. But my family did dig deeper and did tell me that there was risk of losing more memory than that, and even risk of serious cognitive impairment. I did not care. I was so desperate that I could not get to the first treatment fast enough.
I just want to make it clear that although the doctors, as seems to be typical, minimized the risks and perhaps exaggerated the efficacy, I was not coerced, nor was I uninformed.
Back to the three camps. The first I would call the proponents of ECT, the people, mainly mental heath care providers, who say it has a 85-90% success rate with the relatively minor side effect of memory loss at or around the time of treatment. Well, I know that as far as side effects, this group minimizes them. And I suspect strongly that success rates quoted are misleading or just plain wrong.
The next camp are extremists on the other side of the spectrum who want to see ECT banned. They are people who have had horrific truly disabling effects from the treatment and various other people who are anti-psychiatry for whatever reasons. I believe there are valid elements in the way these people feel, but reading their fanatical views are not really helpful when you're trying to evaluate a treatment.
Then there is the middle camp. These are mostly, I think, people who have gone through ECT, who do not believe it should be outlawed, but believe that patients should be properly informed of the REAL success rate (including the often-needed "maintenance ECT") and the real scope of possible side effects and how likely they are to occur. The problem is that there appears to be very little data about all this despite the fact that the treatment is performed on thousands and thousands of people every year. So, this "middle camp," is begging, screaming for stricter regulation of the practice so that hospitals are forced to do some kind of follow up with patients and actual data can be gathered and analyzed.
It is very frustrating. I mean, I do believe that the risk of severe cognitive impairment is rare. But how rare????? Shouldn't we be able to know such a thing? And the 85-90% success rate? No. I don't buy that. I do not believe that takes into acount so many variables -- degree of recovery, how much follow up treatment was neccessary (I have read that about 50% need some degree of follow up), what the side effect trade off was.
On the other hand, I know for sure that ECT has saved many many people. Literally saved people when they were uncontrolably suicidal, and saved people in the sense that I would use word right now -- saved from continuing unrelenting torture.
I am kind of surprised that your doctor has not suggested it considering that you have been sick now for over two years and the drugs have been an endless nightmare for you.
I wish you as little agony as possibly trying to figure out what to do next. And was really disturbed to hear that somehow you went through some whole stomach testing process only to have it be useless. I cannot understand why I am, and it seem you are, being made to endure such cruel cruel suffering only to be rewarded with more indescribably painful suffering. I cannot understand how it could not be enough yet. I want to close my eyes forever too sometimes. That sometimes is actually many many times every single day.
I am sorry I do not have anything more uplifting to say. It has been torture. Torture. And at the moment I have no good news about the neurofeedback, so I will say nothing about it for now.
I do continue to think of you every day and ask for your relief.