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Re: Neurofeedback for severe depression? » ravenstorm

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


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