Posted by Spector on October 4, 2005, at 2:50:05
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on September 24, 2005, at 10:01:11
> Hey spector. I'll keep my fingers crossed for you. I haven't had the gumption to contact anyone about this yet. It just feels too overwhelming. I found someone in my city who does neurofeedback, but how do I know they are legit? And how would I know if they do this new type of feedback you are talking about? I just don't have the energy to figure all of this out.
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> My stomach is shot from my last trial of remeron, so now I can't even take another med if I wanted to. If you have severe stomach problems and are mentally ill, you are soooo screwed.
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> You said this new form of neurofeedback was like a kinder version of ECT. I was wondering if you have considered rTMS? It at least has doubleblind studies with about a 60% success rate I believe. It is probably closer to the ECT than the neurofeedback. Forgive me if you have already tried this and I forgot.
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> You are in my prayersRavenstorm, hi. I am sorry I have been unable to respond for all these days.
You asked about how do you know if someone practicing neurofeedback is legitimate. A few things we learned when trying to figure out the same thing: I think I might have mentioned that my Mom spoke with Cory Hammond, the University of Utah guy who is doing a lot of research on neurofeedback and depression. He said that if a practitioner is on the ISNR list (International Society for Neuronal REgulation), it is a good start. What we did beyond that is, well, call and talk to a bunch of practioners. (I say "we," but I only made two calls myself. My mother made 5 or 6. Of course this stuff is extremely difficult when one is so dibilitatingly ill. Perhaps I could have done it all myself spurred by extreme desperation, but her help was of course very helpful.)
We started to discover that it is a small community and they all more or less knew each other. And, with the exception of maybe one, they were straight forward in saying whether they felt they had the experience for a serious case like mine. Most said they really didn't think they did. But then what happened is we started hearing one name in particular repeated as a recommendation of who they thought could help. One woman up in Hartford (We're in CT) was a real yenta and kind of demanded to know who we had been looking into. But it turned out to be helpful because she gave us her honest opinion of each one of them and we already knew that she was at least somewhat accurate because we had already formed some opinion of most of them.
In the end I called the woman who had been recommended by a few of the other practioners. And, Ravenstorm, like with every other bloody decision in this whole thing, I had to go with my gut. Luckily I have pretty good instincts about people even after only having spoken to them on the phone for a relatively short time. (Though, the trick is paying attention to those instincts instead of setting them on the side like have have done too many times and paid dearly every single time.) Thank God this woman gave me the strong feeling that she has something that for me is as vital as experience and responsibility -- a good heart. Yes, I was also comfortable enough with her level of experience which I felt she was being completely honest about and which others had spoken of as well -- but what I was really praying for was that she not be driven by an oversized ego or any kind of agenda, and that she have a good open heart -- true compassion. And I got that. Which, as I suspect you might know, is pretty rare among those who treat some of the most vulnerable desperate people there are.
You also asked how would you know if someone uses the system that is now being used on me. The name of the system is LENS (Low Energy Neurofeedback System). The man who invented it and has more experience with it than anyone on the planet is named Len Ochs. His lab and private practice are out in California. His website:/www.ochslabs.com, has a list of practitioners who have his system. (Actually Cory Hammond and Ed Hamlin the North Carolina psychiatrist I mentioned back in that long message are both on there.) As far as who of those people have the most experience using it, I would guess that Len Ochs himself should know. His contact information is on the website too. As I am discovering not so pleasantly, his system cannot be mastered in a weekend seminar. It is simple and straight forward in a certain ways, but there are also subtleties that can be very important in some cases. Since I last wrote they had to pretty radically change the protocol with me -- too much for me to explain now. But I guess my point is that if you were ever to seriously look into this and did want to go to someone who uses LENS, I would definitely call Len Ochs and explain what your condition is and get his advice on whether he feels there is anyone in your area who could handle your case. He is very methodical and not driven by financial interests. He would be honest with you.
Ravenstorm, please don't think I am oblivious to how sickeningly overwhelming all this additional information could be to you right now. If I were not still so sick I would offer to make whatever calls I could for you. Really, I would. But I cannot now. I don't know if you have anyone capable of helping in that way, and, of course, I understand that you might not be able to make a descion about what to do next right now.
You asked about rTMS. No, I have not tried it. My brother read about it some time ago and felt that it was not worth me trying -- not totally sure why at the moment. Then more recently I read, on here actually, a whole bunch of anecdotal stuff which was not exactly encouraging. None of the people who had tried it were helped by it, and they all made it loud and clear that it hurts no matter what the doctors say. The pain was described by different people as ranging from a rubber band being snapped against your head, all the way up to having a nail drilled into your skull. Hm.
Granted, this was naturally a self-selected few people on Dr. Bob who are more likely to be people who were not helped by something rather than helped by it, and should not be considered evidence of anything except their individual experiences. But you know how it is -- it goes both ways with anedotal evidence. When it is positive, it is probably disproportionally impressive. Same thing when it is negative.
However, rTMS does not have the horrific risks of ECT. I did go through ECT and not only did it not help (with the exception of two fleeting days of relief), but I was left with significant memory loss. So, I don't know. Today, if I had done neither, I might pick the rTMS because of that. But I don't even know if you can get it without being in a study. You might know more than I do.
Ok. Maybe this is enough for now. Except, I did want to say, yes, I cannot even imagine the agony and frustration of having severe stomach problems and not even having the choice to try another medication if you wanted to. It just seems too cruel. Sure, one could say well maybe you're meant to find a non drug solution that will actually be better than any drug solution could be considering your God awful experiences with the drugs. But that could be really annoying to hear so I'm not saying it. I'm not.
With love and prayers,
Nomi Spector
poster:Spector
thread:512397
URL: http://www.dr-bob.org/babble/alter/20050924/msgs/562627.html