for Randy - did your neurofeedback work?

Discussion in 'Fibromyalgia Main Forum' started by sb439, Nov 1, 2002.

  1. sb439

    sb439 New Member

    Dear Randy,
    some months ago you announced you were going to have neurofeedback with Dr Preston. I'm planning to give it a try, too. Could you tell me whether it made you improve in any way? or perhaps made you get worse? Reply would be very much appreciated.
  2. sb439

    sb439 New Member

    Dear Randy,
    some months ago you announced you were going to have neurofeedback with Dr Preston. I'm planning to give it a try, too. Could you tell me whether it made you improve in any way? or perhaps made you get worse? Reply would be very much appreciated.
  3. usa777

    usa777 New Member

    Hi SB439,

    I saw Dr. Myra Preston a few years ago and was quite disppointed. The brain map (QEEG) she did helped me to understand what was wrong and her disability report quite helpful, but....

    1. It took her 5 months to get my report to me (it was promised in 2 wks);
    2. She seems to charge varying amounts from $1000 - $1500 for the QEEG (I know someone else who went to her);
    3. She targets the problem so that, after only a few days, your brain "wakes up". This sounds great, except that it gets you all excited, you purchase the equipment from her (approx. $2500), try it at home, and find that it doesn't work. My brain went right back to being where it was - I tried the home program for 1 1/2 yrs. and was very frustrated. The equipment worked off and on, and my attempts to get my money back were fruitless. I know someone else who actually sent his faulty equipment back to her - this was about 3 yrs. ago and she now has both his equipment and his money. She did not communicate with me to help me on my home treatment nearly as often as promised. Her assistant, Kim, admitted to me over a year ago that they were thinking of discontinuing the home program due to poor results. So, I'm rather upset that they're still pursuing this avenue.

    I am now doing neurofeedback with another psychologist who explained to me that it's like a rubber band - you can stretch it quite far (in other words, wake up the brain quickly for fast results), but it'll snap right back to where it was. He explained that you have to go more slowly and kind of dance around the target - not hit it straight on - to get lasting results.

    I started neurofeedback about 4 mos. ago with my new practitioner, and have most noticed an improvement with my insomnia (very stubborn) and sound sensitivity. I am confident that it is helping me, and is worth the $. But, I'd be very careful who you see for it and what kind of promises they make. Laypeople like us simply don't have the expertise to effectively do this on ourselves.

    Hope this helps - USA777
  4. rge

    rge New Member

    I went to her because I wanted to document my brain fog increasing after I drank city water and just knew it could be documented.

    I did not think it had the same exact brain signature as CFIDS and was surprised that it is exactly that
    Fluoride = CFIDS (at least for me)

    I have submitted her report to SS and now it's the waiting game. It will have been worth it if SS goes through.

    Have not tried the feedback - no $$$$$ left!

  5. sb439

    sb439 New Member

    usa777 - now that sounds rather discouraging, but I'm very glad you replied. I'm meant to have the sessions with Kim Phillips (?), and my idea is renting the equipment for a monthly fee rather than buying it. Of course I don't know what would happen if the computer stopped working. I know that the Neurofeedback with Dr Preston worked for Nell here on the board.
    Would you mind telling who your new neurofeedback practitioner is? anywhere close to CT?
    Thanks again,
    ron - read your fluoride mails from some time ago - fascinating (and sad) that so different things like fluoride, mercury, and viruses can get the same QEEG results. (In my case mercury is at least a co-culprit)
  6. nell-UK

    nell-UK New Member

    As you know Susanne I was very pleased with the service and my treatment results form Dr Preston, so I was very surprised to hear that USA777 had such a bad time with it.

    Dr preston and Kim in my opinion offer an excellent home unit service, I rented the equipment for 6 months and it never broke. (I did have a friend whose equipment broke down once but it was replaced immediately)I was in permanent contact with them via e-mail and telephone to discuss my treatment, they were a huge support and couldn't have done any more to help me.

    As for waking the brain up too fast, I know for a fact that Dr preston is against going too fast with the treatment, as the brain is waking up I was given relaxation sessions (alpha training) precisely not to over stimulate the brain. The numbers were increased so slowly and gradually and never anything beyond what I could cope with.

    Neurofeedback cured me of my noise and light sensitivities and the insomnia that I'd had for years (I still have the occasional bad night but it's once in a blue moon and nothing compared to over 6 years of no sleep). It has also helped my energy, my concentration, my memory and so many other things. As for the brain bouncing back, maybe that would be true if it were not done correctly but mine was, I finished the treatment in January this year and have felt the same and better ever since.

    I found both Dr Preston and Kim to be extremely knowledgeable (Kim had CFIDS herself and so understands exactly what you are saying) and highly professional. I also know many other people who have done the homeunit and had a similar response to myself.

    Just wanted to give another point of view.

    Love Nell.

    [This Message was Edited on 11/03/2002]
  7. sb439

    sb439 New Member

    ... yes, I hope it will work for me the way it did for you. If it does just one of the things you mention (insomnia or lack of concentration or lack of memory) it will have been worth it.
  8. sb439

    sb439 New Member

    This is very helpful. Kim Phillips has been very kind on the phone in explaining the whole thing to me, and I also believe that their motivation is to help, not to make money.
    I very much hope you'll be able to sort out the left side of your brain. Set backs can be sooooo frustrating.
    I'm going to NC end of November. I'll report back.
    Thanks again.
  9. rge

    rge New Member

    Quite the contrary, my experience with Myra and Kim was one of the best I have had with any doctor office.

    Her report was incredible and she did research beyond a breifcase full that I brought. She truely wants to help people with their illness and help them get the SS disability they deserve when all the other docs say you're just fine

    I taped my consultation of the report with her and she said she would back me in a fluoride lawsuit and has documented everything - when all the lawyers are running scared.

  10. usa777

    usa777 New Member

    Hi All,

    Maybe Dr. Preston has changed the way she does things since 1998, when I saw her.

    Another thing, though, that makes me wonder is that she originally offered me $1000 for my used neuro. unit through her office manager - he said this is what a client was offering. Well, later he admitted that this was not a direct offer from a client, but Dr. Preston's offer. I did some research and found that I could get $1500 for the machine. The minute I told them this, they offered $1600 and I sold it to them. They know I had lost a disability case and could only work part time to support myself. Made me wonder how much they care when they give me this lowball offer and pretended it was from a client who couldn't afford more. So, if I at that time had been too sick to do any research on it, they would've made an additional $600 on me. (Remember, this is after paying approx. $2500 and having no satisfaction with it.)

    I continue to have mixed feelings about her.
  11. usa777

    usa777 New Member


    Someone had asked who is doing my neurofeedback now. It is Dr. Alan Bachers at the Center for Better Living in Chagrin Falls, OH. I've been very pleased with him. He has been kind enough to accept the insurance rate to help me be able to afford the treatment. I find he has a thorough understanding of CFS.

    P.S. Hope I'm replying right; this is meant for all.