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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 9 of 9. This is the beginning of the thread.
Posted by Reggie BoStar on November 25, 2007, at 1:39:14
Hi Everyone,
I may have to go in for another round of ECT soon. The last one was in August 2005.For some fortunate reasons I had no memory issues at all the last time. Lately though I've been hearing from other ECT patients who have gone through multiple treatments. They all report some permanent long-term memory loss after more than one treatment. They also feel - all of them - that the loss of those memories was worth the gains.
I just finished Kitty Dukakis' book "Shock" in which she describes the positive results she has gotten from ECT. It started out well but sure enough - late in the book she acknowledged losing a few long-term memories. Like everyone else who reports this she felt the cost was worth the gains.
Trouble for me is:
1. I only have a handful of good memories of childhood. If I lose those, I won't have any at all.
2. Regarding all those ECT patients who think the loss of memory was worth the gain: how do they know that, actually? They can't remember what they've lost. And when times get tough and they try to concentrate on good memories, they'll have fewer and fewer in their arsenal the more ECT they get.
3. I have a small amount of mental edge left over from when I burned out on the job. It's nowhere near what it was but I can still use it to read a lot of books and learn new things that aren't too technical.
"Difficulties with acquiring new information" is the way the pdocs describe the loss of that edge. Sometimes it's short term, sometimes it's long term. That's about as specific as they get on that subject.
Living life for me right now is basically just waiting to die and hoping I don't suffer too much in the process.
I've been to the anti-ECT hysteria sites. It's all junk science, garbage propaganda. They're always lifting things out of context from the research journals and rewording them to suit their agenda.
The problem there is that I haven't found an anti-ECT site that ISN'T loaded with hysteria.
Good grief. Well, here I am again.
Reggie BoStar
Posted by star008 on November 25, 2007, at 7:26:59
In reply to Anyone have long-term memory loss with ECT?, posted by Reggie BoStar on November 25, 2007, at 1:39:14
HI Reggie
I have heard some good things about ECT but the memory loss issue bothers me. My job demands a memory. You also need someone to drive for you and make sure you are ok and I don't have anyone either. I think it is an option if you have nothing left to lose. i think i would try it if I didn't have to work and had money and someone to help me with me.. It is scarey though and you need so many treatments.
I am no expert and only know what i have researched but it seems to me that it would have to cause some brain damage. That would account for the memory losses
I am sure someone here can give you better answers to your question
Posted by RealMe on November 25, 2007, at 11:56:10
In reply to Anyone have long-term memory loss with ECT?, posted by Reggie BoStar on November 25, 2007, at 1:39:14
Reggie
I don't really have long term memory loss, or at least not much. I do have short term memory loss, however, after 7 RUL treatments at 5 times the seizure threshold level. I have trouble remembering new things, ie. processing it and storing it into memory. I can read a chapter from a book and not remember what I read the next day. Sometimes prompts help which my T has to do at times with therapy as he understands I have memory problems that are not resistance but are real memory loss. I journal daily, but of course I don't put everything in each day. I am still working and remember how to do my job and so I am not having a problem with that. I still remember what I learned from grad school and beyond.
Weird thing is that I do remember lots about the days I went down for ECT and laying there waiting and wishing they didn't put the machine in the area with me. I also remember waking up a couple of times and feeling like I could not breate, not funny for someone with COPD. I remember them pushing me back down and feeling extrmemly traumatized by that. I did not forget and told them to pleas elevate my head after the treatements which they did. They thought I was delirious after the treatment, and maybe I was, but I remember how I felt all too well.
RealMe
Posted by RealMe on November 25, 2007, at 12:00:23
In reply to Re: Anyone have long-term memory loss with ECT?, posted by star008 on November 25, 2007, at 7:26:59
Agreed; no one goes through ECT without suffering some sort of brain damage, mild or major. I was told as well by my ECT doc that you lose IQ points but that I had plenty to spare. He said some people lose as much as 30 IQ points depending on the treatment. How can causing a grand mal seizure at 5 times the seizure threshold level not cause damage. Some say it is the damage and memory loss that leaves one less depressed. I would never subject myself to it again. My neurologist was agast that I did ECT and did find some damage, deep in the brain structure. I now have a mild seizure disorder.
RealMe
Posted by Phillipa on November 25, 2007, at 23:02:09
In reply to Re: Anyone have long-term memory loss with ECT? » star008, posted by RealMe on November 25, 2007, at 12:00:23
What is a mild seizure disorder as my brother in law has grand mal seizures and can't drive? Phillipa
Posted by RealMe on November 25, 2007, at 23:34:18
In reply to Re: Anyone have long-term memory loss with ECT? » RealMe, posted by Phillipa on November 25, 2007, at 23:02:09
It is olfactory; I was geting episodes of a horrible smell after stopping ECT, and it is controlled now by meds.
It is different from what you are thinking of with a grand mal seizure.
Posted by Phillipa on November 26, 2007, at 17:16:11
In reply to Re: Anyone have long-term memory loss with ECT? » Phillipa, posted by RealMe on November 25, 2007, at 23:34:18
Great it's gone. May I ask what med took it away as mine is gone and maybe same med would also restore? Phillipa
Posted by Reggie BoStar on December 3, 2007, at 17:17:58
In reply to Re: Anyone have long-term memory loss with ECT? » star008, posted by RealMe on November 25, 2007, at 12:00:23
Hi Reame,
Although I'm concerned about memory loss and losing my "mental edge" (loss of IQ points I guess), I think the jury is still out on the whole topic of ECT and physical brain damage.Here is one of many articles on that subject. It has referenced citations to back up its claims:
http://www.psych.org/research/apire/training_fund/clin_res/index.cfm
Here's another from Wikipedia, also heavily referenced:
http://en.wikipedia.org/wiki/Electroconvulsive_therapy
Now I'm in no way suggesting that you didn't get brain damage from ECT, or that you're getting bad advice from your docs. It's just that you could be a rare exception to the rule, as opposed to the victim of a common side-effect. Either way, it happened to you and should be investigated for that reason. You were right to go to your neurologist to see what was going on. When in doubt, get it checked out.
Back on the brain damage controversy, this is the whole problem with ECT and its side effects - the reports are sometimes vague and contradictory, as though no one really understands what is going on. That's certainly the case with memory loss and lowered IQ points.
Although it does seem as though physical brain damage is a rare event with ECT, no one seems to know how the memory loss and lowered intelligence is caused. If brain damage doesn't do it, what does?
It's an open question because it really does look as though physical brain damage from ECT is rare. Thus it's a risk that no one understands. To a paranoid like me, the message I see is that ECT will leave the brain perfectly intact physically, but somewhat less than functional for unknown reasons.
I'm not sure I got to my point here. It's been a long day. Whatever the case is, I hope your neurologist can get to the bottom of that damage and do something about that seizure disorder.
In the meantime, my own situation is still up in the air. I thought my pdoc would lower the boom this time but he's put things off again, until the next appointment later this month.
I may have put him in a difficult position by being unresponsive to meds and openly reluctant to go through another round of ECT. What else is there that pdocs are doing these days? Does that magnetic therapy look viable? I know the Vegus Nerve Stimulation is outrageously espensive and probably not covered by medicare:
http://en.wikipedia.org/wiki/Vagus_nerve_stimulation
(Realme, note that they're doing the nerve stimulation to treat "intractable epilepsy" in addition to depression)
Of course the other option is to just keep doing what I'm doing and feel this way the rest of my life.
I'm beginning to see where the real trade-off is.
Now to get busy sweating bullets for the next few weeks.
Take care,
Reggie BoStar
Posted by star008 on December 3, 2007, at 21:37:45
In reply to Re: Anyone have long-term memory loss with ECT? » RealMe, posted by Reggie BoStar on December 3, 2007, at 17:17:58
reggie.
don't let your doc lower the boom on you.. You can always say no.. I have found mine get frustrated by it but too bad. They ahve told me there is nothing left but vns or ect.. well i don't want either but would sway towards vns if I had to make a choice.. vns is kind of like playing the lottery though.. The success rate is not high enough for me to go through the trama that surgery would cause only to find it didn't work for me in the end. It has worked for some people though so it might be worth it if there is nothing left to lose. I may have to go there sooner or later. Who really wants to live like this?
There is a VNs group on yahoo that you might want to look up. I have heard that if you get into a research study that sometimes neuronics will have the implant put in at their expense. Worth checking into. At least VNS doesn't cause brain damage and can always be turned off or removed, (except for the electrodes, they have to stay to avoid nerve damage taking them out).
Magnetic therapy has been effective for 30 or 40 percent of the people who have tried it, (can't remember which, think it was 30).. Anyway it is not approved in the US yet but is used in Canada. There are a couple of places in the US that use it, I think Chicago and NC..Check the archives here.. I read about it..
Still u would have to pay for it yourself since it isn't approved.Hope things get better.. I know EXACTLY how you feel. Really wish I didn't..Depression s..ks
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