Posted by Spector on July 29, 2005, at 1:43:08
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on July 28, 2005, at 18:01:54
> I forgot to ask. Any response yet? Don't give up. I think I remember you saying something about your response being slowed down due to a benzo you are taking. Maybe it will just take you longer to respond because of that and you'll just have to do it an extra couple of weeks.
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> If you do respond, do they expect you to stay in remission permanently, or do you have to do this everyday?> My thoughts and prayers are with you. I think you have a very positive attitude for what you have been through. I try to be positive but some days it seems impossible. Thanks for your caring words in your prior emails. It is a credit to you that you can care for the plight of others while going through your own personal hell.
Ravenstorm,Ok. Your post, the other one today (yesterday) not this one above, was . . . .. heart wrenching for me to read. (So was the one about the rEEG trauma.) So close to home it was almost unbearable. (I have begged my husband to hold me while I die too . .. . ) And your multi-layered severe impossible problems with the drugs. Holy God. I have had horrible experiences with the drugs (plus NONE have ever worked -- a total of 19 lifetime, 13 in this depression alone) and hope never ever ever to have to try another one again. But what you have lived through with the drugs is almost unthinkable. That on top of the torture you are enduring already is .. .. .. well, listen, I know it is a herculean task for you to make it through each day.
Ravenstorm, I realize that my posts can sound positive. And that's not coming from nowhere -- I do mean what I say. But believe me when I tell you that, similar to you, I am living with a brain that screams the most terrifying negative thoughts to me relentlessly every day. Plus, of course, I have lived through one horrific failure after another for 2 years and almost 9 months. Every freakin day I have to ask my husband and my mother over and over to tell me that they know (which they somehow really do) that the neurofeedback is going to work. I feel the conviction of their voices (and my brother's too) for about a second before I am back in it's-not-going-to-work-help- I'm-going-to-have-to-die land.
Today, for a bunch of reasons -- mainly getting even less sleep than my steady way too little amount -- was extra horrific from beginning to end. Smashed by even more severe than usual endless pounding terror. Virtually could not function. Terrifying.
So, no, no response yet to the neurofeedback. Not yet. But I will not give up. I cannot. I have nothing else and am trying with everything I have to "know" that this is going to work. Yes, being still on the Ativan (though have been lowering it) could be slowing things down. Plus it just takes longer with a very severe case. It is excruciating. But if this option suddenly disappeared, I would be beyond hopeless.
You asked if I do respond does it last or would I have to do it every day. One of the most promising and exciting things about neurofeedback is that it appears to actually be a CURE in many cases. There has not been quite enough study yet to claim such a thing definitively, but the Utah guy, Cory Hammond, told my mom that in the people he's tracked who have responded positively (many), he has seen almost no relapse. And, as you'll see if you are able to read his articles (they're short), his belief is that when neurofeedback works, it actually alters the brain in a way that it is no longer susceptible to depression, or at least much less susceptible. I have no idea if this is true or not. But if it turns out that it is, that is huge. I mean, that would be a cure. No drug can claim that even for the people for whom they work well without the horrors we have experienced.
Another thing. I've been told by a few people, including the woman I'm working with now that it is a very good sign that I was in complete remission for nearly 14 years before this happened. (As you might have read, I had episodes of manic depression when I was much younger, then went 14 years completely without it -- statistically that is very rare -- until an over zelous doctor thought I should be treated for "mild ADD" with Adderall -- an AMPHETAMINE -- and triggered a relapse that I never could have concocted in my scariest nightmares.) The long remission (which I have been told most likely would have continued indefinitely if I hadn't been poisoned), I am told, means that my brain does know how to stay stable. It just needs to be reminded. (The 4 depressions I had when I was younger were horrific. But I came out of them like clock work in 4 to 5 months. I believe that this one has been so God awful stubborn because it was chemically induced.)
I am telling you this because I am gathering that before the Paxil withdrawal you were to some large extent stable. You have not gone your whole life with this kind of utterly dibilitating depression coming and going; it came upon you as a reaction to the withdrawal of a drug, a reaction that your body has not been able to correct on its own so far.
I feel awkward touting neurofeedback so much when it hasn't even worked for me yet. And I know that you just went through pure hell trying something new with extremely disappointing results. AND I know how frightening and draining it is to try to figure out what to do next. But, Ravenstorm, I had a wonderful life too before this befell me. In fact, the years leading up to May 2002 when I was given the Adderall, were literally a dream come true for me. We both want that back more than anything. Otherwise we would be dead by now. I don't mean to speak for you, but, well, I am. There is no way that either of us could have lasted this long if we didn't really want to live. I can't feel that desire much of the time, but I know it is there. It hurts so so badly that of course I don't want to be alive a lot. Many times a day. But do I really want to die? No. I want to be out of pain. I want to feel the peace calmness and joy that I cannot even remember ever feeling now. I want to go home to my appartment with my beautiful husband and live again. I am a painter. That is my life. I beg to be able to return to it even though every aspect of it is now terrifying to me. Still I know that is all I want. Yes, I must have a limit somewhere. And I am afraid of reaching it. (Though, more often I am afraid of not reaching it and just continuing to suffer forever without even being able to end it.) But I tell myself as much as I can that something in me must know this will move into the past or I would not be able to still be alive. True, I can't believe it most of the time. Most of the time I am just begging for mercy any way possible. But it must be true. It must.
AND, it seems like you need a non-drug solution. This is a very promising non-drug solution. I wish I could tell that it has already worked for me, but I guess I feel like you should know about it even if, God forbid, it does not work for me.
Ok. This is already too long and I haven't even given you the information you asked for. My mom gathered the following for you. We realize that it might feel like an overwhelming amount. But we figured that you certainly don't have to look at it all. Also, I want to add another name you can call in case Cory Hammond is away or something. There is a psychiatrist in North Carolina who is probably more experienced with neurofeedback for depression (and manic depression) than any other non-research person in the country. The woman I am working with knows him and consulted him about me. He is busy, of course, but he was generous about his time and would be a very knowledgable source of information. His name is Ed Hamlin. His phone # is: 828-252-1639. And his e-mail address is: edh949@aol.com.
Here's the rest:
Cory Hammond
801-581-5741
D.C.Hammond@m.cc.utah.edu
For information on the technique:
This is the site for Hammond's "What is Neurofeedback?":
http://isnr.org/pubarea/whatisnfb.pdf
Here's the address for Hammond's "Neurofeedback for Depression":
http://isnr.org/pubarea/depression.htm
For practitioners:
List of ISNR members by state (International Society for Neuronal Regulation):
http://isnr.org/newsplus/isnrlist.htm
List of QEEG Board Certified Professionals (Quantitative Electroencephalography Certification Board):
http://www.qeegboard.org/certlist.pdf
Clinical provider directory of ECNS (EEG & Clinical Neuroscience Society):
http://www.ecnsweb.com/cd_directory%20states.html
Another source for practitioners, by state, from EEG Spectrum:
http://www.eegspectrum.com/Providers/Just a reminder: anyone can hang up a shingle and do neurofeedback. No good. It is actually quite involved and complex. You want someone as experienced as possible with the whole field and who at least has some experience with depression. (You're unlikely to find someone with vast experience with neurofeedback for depression.) Also, you want someone who does or can send you to someone who does a QEEG before you start the actual training. (Q is for quantitative. I know you just did that rEEG. Not sure if that would double. But I know you feel it may not be accurate because you were still under the influence of the Kava Kava.) There are practitioners who work without a QEEG, but for something as serious as what we have, I have been told by more than one person in the field that you really need one. It is part of how they pick the protocol to go with.
I know this all might be sickeningly overwhelming to you. I know that feeling too too well. But I figured I had to tell you whatever I could in case you do end up pursuing this.
You are in my thoughts and prayers as well, Ravenstorm. More than I can express, actually.
Nomi Spector
poster:Spector
thread:512397
URL: http://www.dr-bob.org/babble/alter/20050713/msgs/535194.html