![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by Spector on June 14, 2005, at 0:58:03
Hi, have any of you tried neurofeedback for severe depression, particularly severe depression with very extreme anxiety? I would very much like to hear about your experiences.
I am in a very long severe depression with crippling anxiety. It has nearly incapacitated me. I have tried literally dozens of treatments both conventional and alternative and this is being suggested to me now.
Some of you may know the incredible anxiety that goes into trying to evaluate a new treatment option. You want help so desperately, but are so afraid of another protracted treatment attempt in which you cannot help but invest incredible emotion and hope, let alone money, only to have it end in devastating disappointment.
I should mention that I am a manic depressive who went 14 years in complete remission until an over zelous doctor in 2002 felt I had mild ADD symptoms and suggested Adderall. I had no idea it was an amphetamine or I would have run for my life. (And she supposedly did not know that it could trigger mania.) It took only one pill and I was in the beginning of a hypomanic state. That was followed by the unthinkably stubburn and terrifying depression that I am still in today despite trying one treatment aften another. My life has utterly stopped. When the depression hit I could no longer care for myself or even be alone much of the time and I had to leave my beautiful husband, my home, my studio and my life as a full time artist to return to my mom's house so that she could care for me. I am here still 2-1/2 years later. I am scared to death that I am never going to be able to return back to life. Terrified to the point of asking to be removed from this earth many many times a day. (But, I have never attempted nor seriously planned to attempt.)
So, you can see. I know I don't have to give most of you the gory details for you to know that it has been torture. Torture. I do not use that word lightly. Any advice about the neurofeedback will be greatly appreciated.
Thank you,
Nomi Spector
Posted by a good friend on June 15, 2005, at 1:44:42
In reply to Neurofeedback for severe depression?, posted by Spector on June 14, 2005, at 0:58:03
Nomi,
I've tried it. I was in partial remission at the time from severe depression. It's tough to say if it helped or not. I completed only around a dozen sessions, so my experience is limited.
I am not all that optimistic that it can lift the brain out of a severe depression. I would never say never (we are all so different), but my experience of around 14 sessions, my gut feeling, and my near decade-long knowledge of psychopharmacology and mental wellness tell me that this therapy may be better suited to assisting with moderate to mild depression. That said, I'm not currently engaged in research in this area and it's not scientifically sound to generalize my experience to a larger group.
I suppose the more important question is the trade-off: "what other therapeutic choice would you be giving up by spending your time, money, and emotio-physical resources on neurofeedback?" What might you do in its place?In any case, keep going. As difficult as it is, please remember that there are many healing options out there, and many more that will be available soon. As you no doubt already know, your condition is designed to trick you into thinking that it will persist. The reality is that many people will come out of severe depression to reclaim their life.
> Hi, have any of you tried neurofeedback for severe depression, particularly severe depression with very extreme anxiety? I would very much like to hear about your experiences.
>
> I am in a very long severe depression with crippling anxiety. It has nearly incapacitated me. I have tried literally dozens of treatments both conventional and alternative and this is being suggested to me now.
>
> Some of you may know the incredible anxiety that goes into trying to evaluate a new treatment option. You want help so desperately, but are so afraid of another protracted treatment attempt in which you cannot help but invest incredible emotion and hope, let alone money, only to have it end in devastating disappointment.
>
> I should mention that I am a manic depressive who went 14 years in complete remission until an over zelous doctor in 2002 felt I had mild ADD symptoms and suggested Adderall. I had no idea it was an amphetamine or I would have run for my life. (And she supposedly did not know that it could trigger mania.) It took only one pill and I was in the beginning of a hypomanic state. That was followed by the unthinkably stubburn and terrifying depression that I am still in today despite trying one treatment aften another. My life has utterly stopped. When the depression hit I could no longer care for myself or even be alone much of the time and I had to leave my beautiful husband, my home, my studio and my life as a full time artist to return to my mom's house so that she could care for me. I am here still 2-1/2 years later. I am scared to death that I am never going to be able to return back to life. Terrified to the point of asking to be removed from this earth many many times a day. (But, I have never attempted nor seriously planned to attempt.)
>
> So, you can see. I know I don't have to give most of you the gory details for you to know that it has been torture. Torture. I do not use that word lightly. Any advice about the neurofeedback will be greatly appreciated.
>
> Thank you,
>
> Nomi Spector
>
>
Posted by Spector on June 16, 2005, at 1:33:37
In reply to Re: Neurofeedback for severe depression?, posted by a good friend on June 15, 2005, at 1:44:42
Oh God, I hope you're wrong. Could you please be wrong?
You're basing your feeling on your experience, your gut feeling and a decade in this world, which I think is quite valid. But you have not read any statistics or studies that have indicated that it is less effective with severe depression, correct?
Also, did you stop after 12 or 14 sessions because you were not seeing a difference or enough of a difference to justify going on? I've been told that you will normally know within 5 to 10 sessions if you are going to get benefit.
Yes, yes, my condition is quite efficiently designed to trick me into thinking that it will never go away. On the other hand, this depression has lasted 2-1/2 years unrelentingly. As I wrote in my initial post, it is the result of being given an amphetamine which triggered a bipolar relapse after 14 years of complete remission. The four depressions I had when I was younger were just as severe but my body was able to correct itself within 4 to 5 months. (No drugs helped then as none have helped this time -- a total of 19.) Most likely because it was drug induced, my body has not been able to do that this time. So, while I continue to somehow somewhere believe that I am going to return to life, 2-1/2 years feels like half of forever. And you clearly know that a week of severe depression -- hell, a day, an hour -- is endless.
At this moment, no better option is presenting itself, so to answer your question, I am giving up no other therapeutic choice.
Thanks very much for responding. But still please be wrong. At least about me. Ok?
Nomi Spector
Posted by a good friend on June 16, 2005, at 2:55:09
In reply to Re: Neurofeedback for severe depression?, posted by Spector on June 16, 2005, at 1:33:37
Oh, ok. If it's the best option, then it's the best option. And you are correct in that I have not seen the latest studies or stats on this technique.
Absolutely it could help you! It's very much like Hemisync (Monroe Institute) or Sudarshan Kriya (www.artofliving.org), in that it whips the brain back into shape through regaining balance between the Alpha, Beta, Theta, and Delta waves associated with various brain states.
Hemisynce does this through the auditory channel, Neurofeedback does this mainly through visual (using videogames), and Kriya breathing does this through rhythmic breath. Go ahead and check out the studies done with depression and Sudarshan Kriya before you make a final choice. There have been a bunch of clinical studies that show fantastic results. It is a VERY powerful technique.
I wish you the very best. Keep going. Look at every option. You will get better.
> Oh God, I hope you're wrong. Could you please be wrong?
>
> You're basing your feeling on your experience, your gut feeling and a decade in this world, which I think is quite valid. But you have not read any statistics or studies that have indicated that it is less effective with severe depression, correct?
>
> Also, did you stop after 12 or 14 sessions because you were not seeing a difference or enough of a difference to justify going on? I've been told that you will normally know within 5 to 10 sessions if you are going to get benefit.
>
> Yes, yes, my condition is quite efficiently designed to trick me into thinking that it will never go away. On the other hand, this depression has lasted 2-1/2 years unrelentingly. As I wrote in my initial post, it is the result of being given an amphetamine which triggered a bipolar relapse after 14 years of complete remission. The four depressions I had when I was younger were just as severe but my body was able to correct itself within 4 to 5 months. (No drugs helped then as none have helped this time -- a total of 19.) Most likely because it was drug induced, my body has not been able to do that this time. So, while I continue to somehow somewhere believe that I am going to return to life, 2-1/2 years feels like half of forever. And you clearly know that a week of severe depression -- hell, a day, an hour -- is endless.
>
> At this moment, no better option is presenting itself, so to answer your question, I am giving up no other therapeutic choice.
>
> Thanks very much for responding. But still please be wrong. At least about me. Ok?
>
> Nomi Spector
Posted by Spector on July 12, 2005, at 23:50:33
In reply to Re: Neurofeedback for severe depression?, posted by a good friend on June 16, 2005, at 2:55:09
> Oh, ok. If it's the best option, then it's the best option. And you are correct in that I have not seen the latest studies or stats on this technique.
> Absolutely it could help you! It's very much like Hemisync (Monroe Institute) or Sudarshan Kriya (www.artofliving.org), in that it whips the brain back into shape through regaining balance between the Alpha, Beta, Theta, and Delta waves associated with various brain states.
> Hemisynce does this through the auditory channel, Neurofeedback does this mainly through visual (using videogames), and Kriya breathing does this through rhythmic breath. Go ahead and check out the studies done with depression and Sudarshan Kriya before you make a final choice. There have been a bunch of clinical studies that show fantastic results. It is a VERY powerful technique.
> I wish you the very best. Keep going. Look at every option. You will get better.
Hi. Haven't answered sooner because for a while when I was coming to this site it would freeze up my whole computer and I'd have to restart and wasn't able to even get to read your response. But tonight it seems ok.Did not look into the other techniques you talk about, though I probably will now. My mom and I did do as much research as we could on neurofeedback for depression before I began which I did a few weeks ago. We spoke to a bunch of practioners and also to a man named Cory Hammond.
Cory Hammond is a research psychologist at the University of Utah who has done more work with neurofeedback and depression than anyone else in the country as far as I can find. He's had what looks like impressive success. He's so far done only case study work -- no controled studies yet -- but he says that he is seeing 75-80% significant improvment in the people he is working on. When my mom asked what he meant by significant improvment, he did not give any more numbers, but said that in many many cases he was seeing complete remission and that in tracking those people for about 3 years he has seen almost no remission. He believes that neurofeedback, when it works, alters the brain in a way that not only gets it out of a current depression, but greatly reduces one's susceptibility to future depressions. I have no idea if this is true or not, but if it is, that is huge.
He also said something that we did not hear from practitioners. He said that with depression he would continue for 20-25 sessions before giving up because of no response. Of course, it would be unusual to get a response that late, but he has obviously seen it go that way. Everyone else we spoke to said you should see the beginning of something somewhere between 5 to 12 sessions. But that was for neurofeedback in general. With a severe depression it will tend to take longer. Unfortunately.
I have had nine sessions as of today. No change yet. Very difficult, the desperate hope, the terror that it won't work, the unfathomableness of going on like this.
But I very much hope to be able to report good news to you and others soon. I hope it more than anything ever in my life. I want to come back to life so badly I could bite my own flesh off. Literally. Almost. And I want to be able to finally tell people here on this site what worked for me. Finally. Today is 2 years 8 months and 12 days of unrelentingly severe depression with crippling terror that has not for a moment let me forget that there is hell right here on this earth.
Thank you,
Nomi Spector
Posted by ravenstorm on July 21, 2005, at 21:30:12
In reply to Re: Neurofeedback for severe depression? » a good friend, posted by Spector on July 12, 2005, at 23:50:33
Please let us know how you are doing. Where are you having these treatments?
I feel for you. I have not been in remission since going through severe paxil withdrawal. It will be two years in September. I used to have a wonderful life. I often wonder how this could have happened to me.
Posted by Spector on July 22, 2005, at 0:17:05
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on July 21, 2005, at 21:30:12
> Please let us know how you are doing. Where are you having these treatments?
>
> I feel for you. I have not been in remission since going through severe paxil withdrawal. It will be two years in September. I used to have a wonderful life. I often wonder how this could have happened to me.
Yes, I will definitely let you know what happens with me. It has been very difficult so far. The desperate hope involved in any treatment is always so painful when you have an illness where your brain is screaming at you that this isn't going to work and that you are NEVER going to get better. (And, of course, I have been down many many excruciating dead ends over the past 2 years 8 months and 21 days.) But also there have been road blocks testing my ability to withstand this even further. For instance, we found out last week that the Ativan that I am on slows down the neurofeedback process. That was devastating to hear when I am literally struggling to make it from minute to minute and trying my very hardest to tell myself that this is going to work. The Ativan is not even helping me at all. I am only still on it to avoid withdrawal difficulties while I am still in this horrific state. I was actually coming down on it slowly anyway and now I am in a more focused way and trying not to think about how much whatever amount I am on is slowing things down. No one knows how much anyway. The Dr. who's had the most experience with neurofeedback and bipolar disorder (a psychiatrist in North Carolina named Ed Hamlin) only knows that definitely a higher dose of a benzodiazapine slows progress, but he does not know whether there is a threshold beneath which there may be little interference. All this is just too new.I have had 15 sessions so far and have not felt the beginning of results yet. But that is not surprising even excepting the Ativan intereference. I am in a very severe state which has gone on for a very long time. That makes the neurofeedback take longer. Unfortuneately.
You asked where I am doing it. I am staying in New Haven, CT with my mom, so we looked for practioners in driving distance. The person I picked is in Stonington, CT, an hour and a quater's drive one way. It is not so easy to find people who have experience with neurofeedback and depression. Not yet. And for me it had to be a compassionate person without arrogance. Even harder to find. Also, one must beware -- many people have gone to a 4 day workshop and hang a shingle, so to speak. It is actually an extremely complex field and to do it responsibly takes real emersion, study and experience.
I am hoping more than I can possibly express that in the not too distant future I can post here that neurofeedback has worked for me.
Ravenstorm, I don't know your story and should probably at least search for it before bothering you with questions, but I hope you don't mind if I ask a few.
I assume that something forced you to come off the Paxil? Yes? Otherwise you would have gone back on it? 2 years (almost). Jesus. Holy God. You know, even though it has been even longer for me, when I read 2 years it is still unreal. I felt it physically when I read how long you have been sufferning. Can I ask you the nature of your depression? How severe is it? Is it a cripplingly anxious one like mine? (Don't worry, I know that a non-anxious depression can be just as bad or even worse.) Have you gone through endless treatment attempts?
I would like to know more. And I promise not to give you annoying advice. I don't have any anyway.
But I do want you to know that you are in my thoughts already. And I want you to know that for some reason I feel quite strongly that your life -- your wonderful life -- will return to you. I wish I could give it back to you right now. I wish that very very much because I know that SURVIVING the torture, even if you sometimes have some inkling that there is and end, is the thing. It is not always so much WHETHER it will end but WHEN. When? When? When? And how. How? Bloody torture.
But I say again, I feel extremely strongly that your nightmare WILL end. You will know life again. You will remember what joy feels like again. You will.
And I will pray for you that it is soon. I know how alone you must feel even if there are people who love you and understand at least to some extent. I know because I am blessed to be surrounded by a family that does understand and is taking care of me. They have kept me alive. And yet I am alone. When you do not have yourself you are alone in a way that ... . well, in a way that for me tells me that there is a hell and it is right here on earth.
So, yes, while I know that you are alone in that way right now, please know that I am with you in that aloneness, if that makes any sense.
When I wake in terror in the mornings I sometimes try to somehow connect to the countless nameless others who know, who are right now suffering as I am suffering and really know what even the most sensitive person cannot know unless they have lived this. It sometimes brings me a second or two of comfort to imagine that I am connecting with others who feel so terribly forsaken, who are in a darkness so deep that they sometimes do not know how they remain alive.
Ravenstorm, you are alive. And I am alive. I cannot believe that we have been made to suffer this long for nothing. I don't know your feelings about this, but I believe I would be long ago dead if somehow something in me did not know that there is an end coming. True, I regularly beg to be taken. But I am still here. That cannot be for nothing. It cannot be. There is an end. If it would hurry up and come that would help a lot, though. I think you know what I mean.
This is much too long. Forgive me. And forgive me any presumptions I have made.
With love and prayers,
Nomi Spector
Posted by Spector on July 26, 2005, at 3:01:59
In reply to Re: Neurofeedback for severe depression? » ravenstorm, posted by Spector on July 22, 2005, at 0:17:05
Ravenstorm --
I just did finally do a search to see if I could find any bits of your story. I did. I read about your unthinkably sickeningly frustrating experience with the rEEG. And reading little snippets of what's happened to you was gut wrenching. Too familiar. Of course, I am sure that there are probably more differences to the details of our experiences than similarities, but the overall sense was .... well, painfully similar. And your perverse responses to some of the drugs was especially so. I could have written almost word for word what you wrote about taking Welbutrin.
Jesus. I don't know what your path out of this will be. But still I am hoping to be able to tell you that neurofeedback gets me out in case it could be the answer for you. Though, I would rather hear that you wake up tomorrow in spontaneous remission. You deserve that 1000 times over. I very much related to your last two sentences in the post of yours I just read.
I don't even know if you're reading this. Either way, I am thinking of you quite often. Quite often considering you are a total stranger and I am battling virtually constant terror that pounds me to a pulp every day and night.
With love,
Nomi
Posted by ravenstorm on July 28, 2005, at 8:53:20
In reply to Re: Neurofeedback for severe depression? » Spector, posted by Spector on July 26, 2005, at 3:01:59
Hi Spector,
I'm sorry I haven't responded to this sooner. I somehow hadn't marked to be notified for follow-ups on this thread. When I saw your post in the section on DBS I came back here.
I would love to tell you my whole story, but I just don't feel well enough at this time. I am very impressed by the length and scope of your posts. I am quite cognitively impaired by the depression at the moment.
I too have the agitated depression. I too have asked repeatedly to die. I really wanted my husband to just hold me after I took the pills. I know now that he will never do that and it was horrible that I ask. But still. . .I don't see this ending so it is very hard.
My big problem is that I have severe stomach problems so it is difficult for me to take any of the medications now. And, I get so "addicted" to everything that trying anything new means having to go through horrible withdrawal that leaves me worse than when I started. I so envy those that can just pop a lexapro or effexor and then if it doesn't work move on to the next thing easily. I would be stuck on effexor the rest of my freakin' life!
I was a normal, functioning person two years ago. I was on a miniscule dose of paxil (just enough to keep me from going through withdrawal) and I was fine. I titrated off the final small amount over MONTHS at .5mg at a time with watered down liquid paxil and ended up worse than I had ever been in my life afterwards. Non functional clinical aggitated depression. If I had a time machine, I would go back and just take that stupid 2mg of paxil for the rest of my life. We were going to have a baby. Now I know I will probably never have children.
The drugs I have tried haven't worked, or have made me worse, or have agravated my stomach so much I can't take them. The last, remeron, I had a partial response to, so I kept taking it, but then it stopped working and it started destroying my stomach. Then the fun began, I couldn't just stop taking it due to withdrawal. I had to taper down over months, nearly unable to eat the whole time due to sever stomach pain/heartburn sickness. It was horrible. I'm afraid to go through all this again, so I am trying to find non med solutions.
Do you have a number for the doctor in Utah who has done all the research on neuro feedback?
Sorry if this is disjointed. I can't concentrate well anymore.
Posted by ravenstorm on July 28, 2005, at 18:01:54
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on July 28, 2005, at 8:53:20
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.
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.
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.
>
> 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
Posted by MM on July 29, 2005, at 3:06:01
In reply to Re: Neurofeedback for severe depression? » ravenstorm, posted by Spector on July 29, 2005, at 1:43:08
I hope it's ok to post this link:
http://secure.wildmind.org/store/customer/product.php?productid=61&cat=&page=
It's a home biofeedback "game" and if I had some money I might try it myself, but I thought maybe ravenstorm might want to check it out (since it's inexpensive compared to treatment at a clinic). A brain injury clinic I worked for uses neurofeedback for their patients, and it's supposed to help with anxiety at least, training yourself to learn to calm your brain etc. Just a thought. HTH.
MM
Posted by Spector on July 30, 2005, at 0:44:17
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on July 28, 2005, at 18:01:54
Ravenstorm,
I just thought of something. When I had my QEEG done, the woman doing it -- the same person I'm doing the neurofeedback with -- told me that she can account for drug effects, kind of substract them out. She said it is usually obvious in the EEG what is "real" and what is a drug effect. I still don't know if the rEEG would be useable though because I don't know how they did it. With the QEEG they took EEG 4 times -- with eyes open, with eyes closed, reading, and doing math.
Anyway, thought I would add this in case it could possibly help. Perhaps you're overwhelmed by "help" at the moment.
Thinking of you.
Nomi
Posted by ravenstorm on September 17, 2005, at 12:10:24
In reply to Re: Neurofeedback for severe depression? » ravenstorm, posted by Spector on July 30, 2005, at 0:44:17
Spector, how are you?
Posted by Spector on September 20, 2005, at 21:00:31
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on September 17, 2005, at 12:10:24
Hi. I am still doing neurofeedback. I have not written again yet because they switched me to a new system relatively recently and I was waiting for it to work before I wrote. I just want to be able to write and tell you and any others that this worked for me, that something finally finally worked for me. I want that more than anything ever ever ever.
The new system is one they already had when I started with the people I am working with and they wanted to use it on me from the beginning, but felt they did not yet have enough experience with it. Now they do. When it works it is considerably more powerful and more efficient than the other systems, that is, it can work faster, sometimes much faster.
While it is still neurofeedback, it does not involve operant conditioning in any traditional sense. The big innovation with this system, which was developed by a psychologist in California who happens to also be very talented with technical things, is that it uses radio waves to stimulate the brain, to nudge the brain into resetting itself. The radio waves gently "offset," or throw off the brain waves which are (mysteriously) stuck in an unhealthy pattern. This causes the brain to momentarily reset itself into a healthier pattern. Then the brain takes the new information and hopefully processes it in a way that results in real and lasting healthy patterns and the evaporation of the unspeakable pain we are suffering.
This explanation is of course crude and simplistic as I am just a lay person, but I hope it is not too inaccurate. It is a kind of much more gentle, more controllable, more precise and particular ECT, but without the E or the C. AND, none of the dangers of long term or even permanent damage. The risk is a temporary one of over-stimulation which can be unpleasant or worse if you are in an already nearly unbearable state. That is why they start people, especially sensitive people, slowly. I so far have had no effects that I can feel -- no good stimulation, no over stimulation. They have started to go up on the intensity more quickly now.
How am I? How am I. How do I find words to answer that? It is unrelenting torture and terror that I can never adequately put into words. I try again and again because I have an overwhelming compulsion to try to describe pain to those who care and listen, but I fail always. That does not stop me from trying again. In fact, I believe I would literally die if I were not allowed to try to convey the unimaginable isolation of terror that consumes me and has consumed me for so so so long. I have no other way of bearing it.
And now the frantic panic of waiting and waiting for yet another treatment to work and living with the almost constant conviction that it is not going to work, has made my state even more debilitated. I won't go into gory details right now, but I have had to be taken care of like an infant, an inconsolable infant.
I beg for mercy almost constantly. Over and over often outloud howling in pain.
I am hard put to explain how I remain alive. I can only hope and hope and hope that relief is coming very soon, that God would not keep me alive through nearly three years of this only for me to have to die. But with a brain that is ill in the way that mine is, hope is . . . . hope is almost impossible to experience. And I cannot help but beg for death sometimes. Many many times.
You know much of this. I think you know it the way that only those who have lived it know it. I do not mean to assume that our experiences have been the same. Of course they have not. But I have the feeling that they have been close enough so that what I am writing is all too known to you.
Ravenstorm, I cannot tell you how badly I want to give you good news very soon. You are a stranger to me, but a day has not gone by that I have not thought of you. Often many times.
With love,
Nomi Spector
Posted by ravenstorm on September 24, 2005, at 10:01:11
In reply to Re: Neurofeedback for severe depression? » ravenstorm, posted by Spector on September 20, 2005, at 21:00:31
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.
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.
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.
You are in my prayers
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.
>
> 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.
>
> 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.
>
> 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
Posted by ravenstorm on October 5, 2005, at 9:22:59
In reply to Re: Neurofeedback for severe depression?, posted by Spector on October 4, 2005, at 2:50:05
Thanks again for all the information. I have asked my husband several times to make calls for me but he hasn't. I am not up to it. Maybe I will try to pester him again.
I had a week where I thought I was feeling better, but am back in the pits again, suicidal, not sleeping, agitated. Had some stomach testing that got screwed up and was fruitless. Just feel like every time I try something it is another dead end. I just want to close my eyes forever sometimes.
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?
There probably isn't any point doing rTMS if ECT didn't work. I think that is the opinion out there anyway.
I have a feeling no one where I live does this neurofeedback.
I will continue to pray for us all
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
Dear Ravenstorm,
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.
Nomi
Posted by JLx on October 10, 2005, at 14:39:50
In reply to Re: Neurofeedback for severe depression?, posted by ravenstorm on October 5, 2005, at 9:22:59
Hi Ravenstorm,
I noticed in previous posts that you said you had stomach problems. In one other thread, someone suggested "leaky gut syndrome". Have you looked into that? This site has a brief and simple description:
http://osiris.sunderland.ac.uk/autism/gut.htm
These two are more involved, but include what to do about it:
http://www.liverdoctor.com/04_leakygut_syndrome.asp
http://www.afpafitness.com/articles/LEAKGUT4.HTM
Both recommend that you get tested, but there are some basics that many of us do without being tested, that just seem to help, such as taking probiotics. Beware the supermarket variety and go for the refrigerated kinds or the new room temperature stabilized such as these: http://www.iherb.com/sp.html
It may seem counter-intuitive when your stomach is giving you grief, but fiber is another good thing to do for stomach health.
Garlic is supposed to be great, as it kills fungus, parasites and bacteria. Yeast can be a problem, for which there are various formulas on the market such as these at iherb: http://www.iherb.com/candida.html
IF you do have leaky gut syndrome, it could be affecting your nutritional status of such important things as magnesium. Magnesium is a great de-stressor for many. It single-handedly changed me from a suicidal wreck to a garden variety wreck. ;) I joke, but that's no small thing. Magnesium works what still feels like a miracle to me. I used to feel so terrible all the time, now I have depression that lends itself to interventions like the book "Feeling Good" by David Burns (which I recommend). When I was suicidally depressed, I can easily imagine just staring dully at the pages in that book unable to comprehend and think in the new ways he suggests.
Nutritional interventions can be very helpful to some people. There was a new study recently about chromium for those with atypical depression and carb cravings; it was quite effective. Fish oil works wonders for others. B-vitamins seem to help a lot of people at least some, and folic acid has been shown in studies to be effective alone or with SSRIs. Excercise alone exceeded exercise plus Zoloft in one study and was more long lasting.
These things can seem out of reach when severely depressed, and/or might not be "enough" to make a measurable difference from the deepest depression hole. But at the very least, they won't do harm, are good for the body, and in the long run may be more sustainable. It's also very empowering in my experience, to take these measures rather than feel as if I am at the mercy of the illness and whatever the latest is that the medical establishment is serving up.
My worst day now is better than my best day was on meds. Magnesium was key for me, and in general, I feel better taking handfuls of supplements.
But they won't help very much until a leaky gut is addressed.
When we're feeling really really terrible, it can be tempting to consider that we need something big as a cure, not the relative simplicity of diet and other nutritional interventions, but consider where neurotransmitters come from...food. If we're not getting proper nourishment for our brains, they won't work right. That's how I feel about how I was before I started taking magnesium -- like my brain just wasn't functioning right. I recall one time when I was suicidal, telling myself that I needed to think more positively, and simply being unable to come up with a positive thought. Usually I felt like I was "behind the beat" from how I supposed to be thinking, as if my brain was in slow motion. Magnesium supplementation changed all that for me. It tore down that gray glass wall I was living behind as I watched the world of life going on with out me and gave me colors again. I NEVER would have dreamed that that would be possible. I got the idea to take magnesium, by the way, from this website:
http://www.coldcure.com/html/dep.html
I was on Zoloft and Provigil, suicidally depressed but the Provigil helped me stay awake on the Zoloft and concentrate so I spent hours and hours on the net trying to find some ideas to ask my psychiatrist about. When I did ask him about magnesium after reading this site, he said basically not to bother, it wouldn't help. Fortunately I ignored him. :) I felt so much better after one day on magnesium I quit my meds cold turkey without problems, and haven't looked back.
This may be a rare occurrence, though there is some information out there indicating that magnesium is helpful to other people for depression and many people recommend it on this board. But the point is, that we are biological beings, dependent on food to nourish our bodies. And what we eat and more importantly, what we get from our food may make all the difference for how well our brains work, and consequently, how we feel.
At the very least, with proper nourishment and good diet habits, we're giving other treatments the best baseline to start from.
JL
Posted by Spector on December 22, 2005, at 1:42:49
In reply to Neurofeedback for severe depression?, posted by Spector on June 14, 2005, at 0:58:03
Neurofeedback did not work for me.
This is the end of the thread.
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