Has neurofeedback worked for anybody?

Discussion in 'Fibromyalgia Main Forum' started by sb439, Sep 7, 2002.

  1. sb439

    sb439 New Member

    I've had a QEEG a while ago, and have 'a typical CFIDS brain'. My doctor suggested Neurofeedback may be worth a try, and I had a trial sessions which suggested I'm 'responsive' to it, and am sort of ready to give it a go - just wonder: has it worked for anybody on this list? If yes, how many sessions did you need? And what sort of things did improve?
  2. sb439

    sb439 New Member

    I've had a QEEG a while ago, and have 'a typical CFIDS brain'. My doctor suggested Neurofeedback may be worth a try, and I had a trial sessions which suggested I'm 'responsive' to it, and am sort of ready to give it a go - just wonder: has it worked for anybody on this list? If yes, how many sessions did you need? And what sort of things did improve?
  3. TeresaBnGA

    TeresaBnGA New Member

    I was wondering could you tell me what a QEEG is? What type of doctor gave it to you and what neurofeedback is? Sounds kinda interesting.

    Soft furry hugs!
    Teresa :)
  4. sb439

    sb439 New Member

    QEEG is a quantitative EEG where they put lots of electrodes on your head and then put the ends into a computer, and then measure what which parts of your brain do when you do various tasks (nothing, reading, repeating numbers, that sort of thing). The result tells you whether you have 'normal' brain activity (i.e. the right kind of parts of the brain involved, the right kind of brain waves) or not. CFIDS people it seems differ on both counts.
    [This Message was Edited on 09/08/2002]
  5. sb439

    sb439 New Member

    neurofeedback is some sort of biofeedback, where you again have electrodes (but only 2 or 3) on your head, connected to a computer, and then you must perform certain task, just by looking at the computer. This is meant to activate (again) the right bits of your brain and the right type of brainwaves. Drawback: both the QEEG and the neurofeedback are very expensive.
  6. sb439

    sb439 New Member

    and now, Teresa, to your question about doctors. My CFIDS doctor is Dr Hyams, who for all I can tell is great, he's in England, but now I live in America, so ... .
    The QEEG specialist for CFIDS is Dr Myra Preston, in North Carolina, she analyzed my QEEG, and she does neurofeedback, but there are a some more doctors who do this sort of thing.
    Hope this was of some help.
    hugs also,
    Susanne
  7. nell-UK

    nell-UK New Member

    Hi Susanne...

    I am also a patient of Dr Hyams and did the Neurofeedback therapy for 6 months from Dr Preston. It helped me alot with many of my cognitive problems and energy. I did it 3 times a week.

    Before the treatment I was unable to sustain a conversation, unable to remember, recall words, I had sleep disturbance, confusion, dizziness etc etc. All of those things are much better, especially the sleep pattern and the mental energy.

    It took about 3 weeks before I started noticing improvements but 6 months in total until I was well enough to stop the treatment. As we worked in different areas, different symptoms imporved. I think as the delta waves were brought back to beta, everything started to be put right. The best thing for me is to be able to sleep normally, apart from being able to sit here and write this, which would have been impossible a year ago!

    I am still not fully recovered but it was a real help to me to get back on the right path and to help me cognitively as that is always one area I was severely affected in.

    I finished the treatment in February this year and haven't gone back at all. I can't imagine now how it used to be when I was unable to watch TV or stand music or even tolerate conversation, I guess I just take it all for granted again!

    Hope this helps,

    Love Nell


  8. sb439

    sb439 New Member

    many thanks, that's very useful. Did you work with a home unit? (i.e. one's own computer-unit, supervised from afar by the neurofeedback doctor) or did you move to the US for 6 months?

    love, Susanne
  9. nell-UK

    nell-UK New Member

    I did it at home with the home unit programme and e-mailed all my results to Kim Phillips. I would then have a telephone consultation with Dr Preston every few weeks or so to check how things were going. But I fould them all to be very helpful and a tremendous support to me whilst doing the treatment and Kim and I became good friends, I think it really helps to have someone who has had CFS herself to be helping you as she can understand the weird and wonderful symptoms that accompany the illness!! And of course I was lucky enough to have my mum at home to help me with the treatment.

    Love Nell
  10. kadywill

    kadywill New Member

    does insurance ever cover each of these??? There's no hope for either, if not.....please advise!
    Kady
  11. sb439

    sb439 New Member

    Kady - I don't know. My insurance has just sent the request for cover back to my neurofeedback person, saying they only cover if one can show it's necessary, given my medical history. So I think they won't, as I can't imagine how to prove it's necessary, whatever that means. So this is a pain! You need an insurance that covers biofeedback (neurofeedback being brain-biofeedback), to have a chance at all. I guess Dr Myra Preston, who seems to have most experience with CFIDS neurofeedback, would be the person to know.
    Susanne
  12. klutzo

    klutzo New Member

    I know of no insurance that will cover neurofeedback and there are only about 600 practitioners who can do this in the US. As usual, they are mostly concentrated in big metropolitan areas. Medicare will not cover it, but maybe some really good ins. I don't know about will.
    For many previous posts on this do a search for posts by FatherTroll, both on this Board and on the chit chat board. He is going through it right now and when we last heard, after only 2 treatments he was going to a job interview! This is after yrs. of not working.
    Klutzo
  13. sb439

    sb439 New Member

    Many thanks for the info on your experience with neurofeedback. You said your mum helped you. Great! But do you think though I could work with the home unit without having s.o. at home helping me? I've just moved to the US to take up a professorship here, and left friends, family and partner in the UK, sigh. (I had accepted the job here and quit my UK job before I got *really* ill - now I'm on medical leave here...)

    I also read your bio - it's so good to read that you got so much better. You'll be my role model for recovery!

    Love, Susanne
  14. nell-UK

    nell-UK New Member

    Hi Susanne....

    What a shame you moved to the U.S and then got really ill, but it is possible to do the neurofeedback alone, I do know of somebody who does this.

    It isn't as easy of course as you have to write down your score every minute whilst doing the treatment but once you get used to it, you'd be able to manage. I think the only reason I wouldn't have been able to do it in the beginning was because I was so far "gone" if you know what I mean, I didn't know what was going on!!

    The only other tricky thing is getting the electrodes in the right place but the person I know who does it alone shaved off her hair in those places so she'd know where to put them! At first it all does seem a bit overwhelming but once you get used to it, it's really quite easy.

    Thankyou so much for saying I will be your role model for recovery, I like to help whenever I can, I am not fully recovered yet but have certainly improved tremendously this last year or so and the neurofeedback played a huge part in that.

    Take care,

    Love Nell x
  15. sb439

    sb439 New Member

    Your information is very encouraging, many thanks. And shaving those electrode spots also seems a good idea (vanity good-bye ...).

    love,
    Susanne
  16. There are many kinds of neurofeedback systems that work in different ways. NIH division of alternative and complementary therapy is doing a 2nd study on the Len Oaks system of entrainment now at the Oregon University of Health and Sciences. Look for government clinical trials. Another expert in this field is Mary Lee Esty in Chevy Chase Maryland, also Donaldson in Canada. I have started neurofeedback and have been doing research on it for several years. But I find very few actual people (1 or 2) who say it works. Basically brain wave patterns are changed in one way or another for different ailments, including fibro, add, depression, anxiety. Many people confuse this with plain biofeedback, which helps people to change their autonomic system (heart, tension, etc.), but like meditation is only good as long as you do it, whereas neuro has permanent results they say. You can get messed up with this (I think), so go to certified neurotherapist with lots of experience and get a brain mapping. Insurance may pay if it is coded as behavioral therapy. Dr Russell in Texas also believes in it and Dr. Katz in Chicago at Rush Presbyterian sort of does. I am extremely sensitive to most medicines, so I hope to get something out of it. Also it is highly recommended to get myofascial work done at the same time to really function better.

    I would like to know about any adverse effects or side effects. I am on the Roshi system with lights, but I heard that the Oaks entrainment system which is different has more side effects. Also I have heard that Neuro doesn't work for everyone.
    [This Message was Edited on 08/18/2005]