Neurobiofeedback therapy

Discussion in 'Fibromyalgia Main Forum' started by maxsy1221, Nov 25, 2005.

  1. maxsy1221

    maxsy1221 New Member

    Good evening fibro friends...
    I have been reading,researching and searching for "anything" that may be of help to all of us other then the drug thing (of which i confess, i take a few!
    However....if you all live on the comp like I do, and research like I do, and are as desperate as I am becoming...and frustrated....maybe you have read about the procedure Neurobiofeedback therapy....The more I read, the more I am becoming convinced, that yes....maybe if we help retrain our brain it just may work!!! Suppossedly, they are doing more and more of it for people of all pain syndroms and chronic fatigue syndrom. It's pretty successful from all I've read! I e-mailed a doctor today, about procedure and hope he can help me find a doc who does it in my state...( Illinois ).........I also ordered a book written by a docter goldstein on the brain. I do know you would have to go for about 40 sessions (2 or 3 times per week till 40 sessions were complete.
    All it is, is like watching a video and somehow training your brain....i know, confusing, but you all may find it really interesting to read about. It's also pretty expensive but, if it were to be permanent....I'm ready to jump on the boat!! I have tried EVERYTHING else there is and believe me...kinda in poorhouse now!! But again...if it were to be a permenant fix.......what's money??!!! Just to be so called "normal" again!! Well, at least pain free!! Also, another procedure that sounds promising is..cold lazor therapy....basically an infrared light type therapy.....also used for pain....I don't know, but possibly after holidays.....trying one or maybe both at the same time!!! At least neither are harmful, and neither are drugs. I just believe drugs are NOT the answer!!!
    These are just my few cents tonight and hope you all find something here you can research about!! I love this board!!! Has ANYONE here done any of the procedures I've just talked about??!! How did it work?? How ling did it take??
    ......((whew,.....) ok....exhausted now so gonna get ready for bed. Lots of huggs to you all!!! pam
  2. victoria

    victoria New Member

    to see if others here have given NEUROFEEDBACK a good try; on other boards, I did read a couple of people's experiences with it that were all positive regarding the benefits... and I am very pro biofeedback having once been a biofeedback therapist many years ago...

    but -

    on the downside, when others reported that when they did not do weekly sessions anymore, the effects waned; thought I also read somewhere one would have to do quite regular 'booster' sessions;

    plus the sessions are quite expensive, don't think insurance will cover it.

    I'm not sure there have been double-blind studies done on the different neurofeedback techniques either?

    All the best,
    Victoria
    [This Message was Edited on 11/25/2005]
  3. maxsy1221

    maxsy1221 New Member

    I don't know about the blind-study but their is a doctor pretty famous for it in North Carolina. I called once in hopes she could put me in touch with someone possibly near me but haven't heard from just yet. I did read too you may have to go for so called "maintenance" about every 6 months or so. Again, if it worked....I'd go!! As it goes now, so much money goes out now for certain meds or supplements and chiro etc. So every 6 months would do for me!! Yes, it is expensive from what I've read. Almost 1500 at first visit and then 250.00 to 300.00 every week for 40 weeks!!! YIKES!!! but i keep saying...if it worked to have my life back, I would!! Just can't put money on feeling good!!! You say you used to be an assistant for it. Do you suffer from FMS?? Couldn't you go back to the doctor you worked for?? ((Just curious!!))
    Thanks for replying!!
  4. victoria

    victoria New Member

    I'm assuming you're asking me why I couldn't go back to the doctor I worked for?

    well, can't, 'twas my husband who was a psychologist, but he is on disability for Reflex Sympathetic Dystrophy since beginning of 1994... :(

    a lot of this about "neurofeedback" for fibro/CFIDS has come out since then, we have taken a look at it online, but seems to be closely guarded secret from what I remember; also no published double-blind studies if I remember about that correctly too, and there seemed to be a couple of different "schools of thought" regarding it...

    My primary dx is CFIDS, altho that's not saying I don't have aching... There's a lot of overlap between CFIDS and fibro. I took celebrex when it first came out for pain from an inoperable bone spur, for 2 doses before I realized I was allergic to it-- felt like I was 18 again - no pain anywhere at all, plus LOTS of energy!

    --so makes me wonder about the whole inflammation/cytokine cascade theory...at this point I think it's cuz of stealth infections mainly.

    All the best,
    Victoria
  5. elsa

    elsa New Member



    An aquaintance of mine took her daughter in for neurobiofeedback for ADHA. Like you mentioned she had to have 3 sessions per week for many weeks initially, plus doing the program at home. They bought a program that can be run on their PC at home.

    She has to do more then "every six months boosters". They, like many, were thrilled to have completed the initial program ... thinking that they were home free ... cured ... she retrained her brain ... Could relax a bit ... maybe pop in and get a tune up every now and again.

    Didn't quite work out that way. They discovered this isn't a cure for her daughter's ADHA, but a tool to help her cope with having ADHD.

    The program and video "game" and rewards for re-learning exercise and encourage a new way of managing ADHD ... She will more then likely need to do this indefinately.

    As long as they are on top of the sessions and she works hard at home on her own she is coping with ADHD fairly well. They don't dare slack off though ... or it's down that slippery slope again.

    She also shared with me the general cost they were initially quoted and what they have actually spent thus far. You are right ... it is extremely expensive. The process is way too new for me to confidently lay down the money.

    And, being very honest here ... There is no way I am going to commit to anything that takes up that much amount of my time. I don't want my life to be about fibro ... I want a life that just so happens to have fibro in it. I know myself well enough that the cost would not be a good investment for me. That's not an ill comment on neurobiofeedback, but an ill comment about me! LOL

    Acupuncture helped relax me and create a sense of well being. It helped my fibro. I gave it up in very short order due to the amount of time I would have to devote to the treatments .... Same with massage therapy ... For me, I needed three 1 1/2 hour sessions per week. I saw improvements ... but where would the time come from to enjoy my new found improvements?

    Those are just my goals in treating CFS/FM not a blanket suggestion to all. I am working on the physiological aspects of our illnesses. In time, I may need something more and may consider going back to previous,although time-consuming treatments ... and keep my mind open to neurobiofeedback.

    I wish you well in this. Please look at it as a tool for helping your pain. As for the cold laser therapy I have used it extensively with my horses ... but only on soft tissue injuries.

    It hasn't proven to be useful for my horses when used as a preventative treatment. ... Caused some minor and temporary damage to the tissues targeted for preventative therapy, IE swelling and a little tenderness. I don't understand how it works positively on fibromyalgia pain ... maybe you could explain it for me?

    As a adjunct therapy to the overall equine treatment of torn ligaments and/or tendons it has been fabulous. The lazer in effect speeds up blood circulation in the injured area bringing with it the needed oxygen and other nutrients. Cuts down on the overall healing time as well as amount of resulting scar tissue. I don't want to be faced with another soft tissue injury again without that lazer machine!

    Good luck with your treatment programs. I hope you are having a good weekend and feeling well.

    Take care,

    Elsa





  6. victoria

    victoria New Member

    have you heard of the farabloc fabric that I just posted about? Apparently many are using it for their horses.

    Now a patent has been applied for as it's classified as a 'medical device' so it can be used for fibromyalgia; has also shown success with many with phantom limb pain for which it was originally developed.

    all the best,
    Victoria
  7. maxsy1221

    maxsy1221 New Member

    You're right Victoria
    Everything is SOOOO expensive. I guess when I hear these things that are not conventional, just makes me "hope" more. This week I have yet "another" doc appointment and gonna ask for yet a different anti depress pill. Wish I were fortunate enoough to live by a fibro center!! ONE DAY there will be one here!! Just have to wait it out.... :( Has anyone here tried wellbutrin XL ??
    Just wondering if it has helped people with pain..........thanx pam
  8. caroleye

    caroleye New Member

    There's a list of these online..........google......
    The most expensive part for me was having the QEEG test done; luckily with the right diagnosis, some insurances will help cover it.

    My sessions cost me $80 and depending on the severity of your brain malfunctioning, it could take 2 sessions or 40. And alot depends on the practitioner's skills.

    I lucked out finding someone who's been doing this for many years, so with her help & the book I recommended on another post, hoping to balance my brain chemistry enough to increase the quality of my physical & emotional condition.

    The book is extremely informative & gives a ton of great info. I'm blocking on the name, but it's a recent post.

    LIGHT************carole