To: Slowgirl, nell-uk, Pinquartz - Re: Neurofeedback

Discussion in 'Fibromyalgia Main Forum' started by nickname, May 2, 2003.

  1. nickname

    nickname New Member

    Going thru the message boards, I've picked up that you are all patients of Dr Hyams. Me too. He has suggested doing the neurofeedback, but I'm really having trouble understanding how on earth it works and more specifically helps, especially on the immune system, which he said it does help. Can you give me any details. Also, as I am bedbound, this will have to be done at home. Do you have any idea what this might cost for a course of treatment. I love talking to him, but oh! my brain finds it so hard to take it all in, remember it and try to put it all into perspective. Help if you can. With many thanks.
    Slowgirl - I'm from Essex too.
  2. pinkquartz

    pinkquartz New Member

    i don't see Dr. Hyams, is he private....or NHS ?

    my brother lives in Billericay Essex is that near you ?

    Anyway i do not have a clue , what is neurofeedback .? now i want to know . please

    best wishes

  3. sb439

    sb439 New Member

    I'm a Hyams patient, but now a US resident. I have a so-called 'home-unit' and do the neurofeedback at home. It's early days to say whether it works, but I think it may well. The mechanism is the same as biofeedback, just for the brain. (You could look up biofeedback on the web). I think Slowgirl gave you an idea of what you do. I do it all by myself, with faxes and e-mails, sometimes phonecalls for feedback and new instructions after each session.

    But mind you: it is very expensive. I rent my unit, and come up to $600-650 per month, and the thing may go on for six month. As I face disability/loss of job if I don't improve, I'm spending all my money on treatment, hoping that allows me to keep my job (I've been out of work for 2 1/2 years now, on some sort of sickleave for some of that time), which would keep me financially independent.

    The brain sends signals to your body about the immune system, so it is possible that by altering brainwaves (getting them back closer to normal) the immune system can also be influenced.

  4. nell-UK

    nell-UK New Member

    Hi, sorry I'm a bit late responding, just got the e-mail from Barb.....I think we e-mailed each other last year, my Name's Helen and I was on Ampligen, was that you? I know I talked to someone from Dr H's clinic who was hoping to go on Ampligen.

    I did the neurofeedback also, but through Dr.Preston and Siberimaging not Dr Parkinson, I can't speak for her and what she does as I believe it's slightly different to Dr Prestons thing but yes it helped me massively although I had had Ampligen before but my brain was still very cognitively challenged, in that I still couldn't hold a conversation, watch TV and always just wanted to sleep but couldn't. The NF helped me loads with all of that and my brain is pretty much normal now, especially the sleep which is now 8 solid hours every night after years of waking every half hour and getting hardly any sleep, There are tons of symptoms which it helped including memory, mental energy, etc etc.

    I did it at home like Susanne and it cost me £30 per session and I did 3 a week but then had to rent the equipment, but as I said this was through Siberimaging and not Dr Parkinson so I don't know how much it would cost you to do it at home.

    If you are the person I spoke to last year and would like to e-mail me again, please do or leave a message here and I'll try and look in again.

    Take care, Nell.
  5. sb439

    sb439 New Member

    why still Dr H, though I live in the US? Well, (a) my partner lives in the UK, close to Henley, and I visit him occasionally (i.e. when I'm well enough and flights are cheap) (b) it seems to me Dr H knows what he's doing and is well-informed on a very broad range of ME-related symptoms. I also see a very nice dr in NY, but she is narrower in her specialisation.

    Dr Findlay: if you have time, perhaps you could expand a little on your remark? I know that after refusing seeing a Psychiatrist in Oxford ("the" Oxford specialist for ME, who thinks it's all in the head, but then he would being a psychiatrist), I got my GP to get me a referral to Findlay, (for 300 pound sterling or waiting for 8 months) , but when I read up on him on the web, I decided he was dodgy in his approach, and invested the 300 in a leather jacket (my first and only) which I still much cherish ;-) . Six months later, after another bad flare I searched and found Dr H on the web, and he seemed right.

    ps: Like Nell, I do neurofeedback with siberimaging, which is likely to be slightly different from Dr Parkinson.
  6. nickname

    nickname New Member

    Dear Susanne- many thanks for your reply. I looked up your bio, and what a delight your photo is!! I adore pussycats, and have had them as pets for over 20years. Your pic is an exact copy of my Tiggy who was with us for over 15 years - even down to that ginger mix in the tummy - what a beauty. I decided to make your pic my computer wallpaper, then asked my husband to come and see, and even he asked where did I get that pic of Tiggy from, - he could'nt remember us having a rug like that!!

    I too like piano - took lessons for several years, but hated the noise I made, and gave up after grade 4 - did'nt start till I was in my late 20's - it was also a bit strange sitting my written exams with 5 @ 6 year olds! Now, listening to anything piano wise can transport me to wonderful places in my head - much better than me.

    I wonder how the siberimaging differs from Dr Parkinson? I'm going to have to do this, I know I will.

    As for Prof F. I had pneaumonia in Jan 1991 and I never recovered from that, then in '94, after finally collapsing in a heap, my GP diagnosed post viral fatigue syndrome. After 3months, when I was still exhausted, he referred me to Prof F as a private patient. I then had to wait 5 months for that appointment, and right from the outset, his manner and approach, was nothing short of verbal, abusive bullying. I could not understand this, and made several attempts to steer the consultation towards some human level, but he was having none of it.

    In a professional business capacity, I would never treat anyone like this, and I felt that as a professional doctor in the health business, he should not treat his patients in that way. On the physical exam, he aggressively 'pounced' on my legs, at which point, I could take no more of such bullying treatment, and immediately disolved into tears, which I felt he liked, because he finally had the upper hand. At the end of the hour, he skimmed a brown envelope across the table to me, and when I asked what it was, he said "my bill." I skimmed it back to him, and said "send it to my insurers, and the next time, get your secretary to confirm the correct venue" (His secretary had confirmed in writing the Hartswood, where obviously I had initially turned up) I skimmed that letter across to him also, and then left. I dragged myself back to the car, and cried my heart out at this insane treatment of someone so ill looking for answers. The Nuffield was having building works done at the time, and a very kindly, compassionate builder came over and tried to comfort me. How on earth do u explain to someone such barbaric treatment? The contrast in understanding between doctor and builder was not lost on me.

    Anyway, I complained to my GP, and by which time, F had written to him saying that I was a 'hostile' patient. My GP who knows that I am nothing of the sort, laughed and sympathised with me and promptly told me that he refers nobody to him, for anything. I knew this already to be true, because F had said to me at the consultation that he never got referals from my GP and did I know why - I said that I was sure he had his reasons and having gone thru the bullying, I certainly knew why - can u beleive that! My GP still hints at his feelings about F, but would never betray a professional. When I got worse and relapsed in 98 with additional neurological symptoms, including a completely dead arm, I promplty told my GP to refer me to another neurologist, I was'nt going back! I saw Dr Capildeo, who was totally as one would expect from a professional consultant, and huge on humility. My GP had confirmed that Prof F and I 'did not get on,' and he said to me that he knew only too well of F's manner, and that over the years, he was getting more and more patients who were coming over to him and other colleagues. He told me that F's original training had been in the army in psychiatry, and he was so used to army ways of pushing people around, instant obediency, and yes, bullying. He also said, that because F was now a neurologist, he was good at putting square pegs in round holes - ie he tried to make u fit into neurology, when in fact, m.e., crosses many systems. I did finally feel vindicated, because for years, although I knew it was not my fault, I did wonder in the back of my mind.

    Of course over the years, I have met and made friends with a lot of people who have seen him, not just for m.e., but a variety of other neurological diseases, and those people know people, who know people, and the consensus of opinion is 100% the same. The people who fare best with him, are the ones who don't question him - he plays God perfectly.

    Private patients who don't question him, are also seemingly tolerated better over a longer period of time, because with the NHS practice, he has to justify his position. That in the m.e., world means that if you go to him only being able to tolerate light for 2mins of the day, and u come out at the end being able to increase that to 3mins, then that is an improvement. It is recorded on the figures as a success. In real terms, we are looking for more than that. I still have friends who have, or are still seeing him privately, for 8-12 years, and all he prescribes is high dose trimipramine or amytriptaline, and who still can't work, who still don't have a life. One friend, seeing him privately, was getting worse with more neurological symptoms, and he said that they should do an MRI. When she phoned his secretary to advise that the appointment had not come thru, she was promptly told that Prof. F could do no more for her and was being removed from his books - BY HIS SECRETARY!!

    It seems that friends who have seen him on the NHS, get eased off the books after some 3 plus years, still no better, or worse. He can't have people distorting his supposed success rate.

    I would even have respect for him if any of us knew of anyone whom he had actually brought back to a better quality of life, even despite the bullying, - but no, none of us do. Many friends who were originally diagnosed with m.e. by him, have also gone onto develop MS, lupus, Hashimottos disease and Behets disease.

    I can only go by my own experience, but it is the same experience of many, many people - mostly with m.e., but also ms, brain tumour, and broken back (in a car accident.) It seems to me that the best thing u did was to invest in a leather jacket - it will give u far better satisfaction that F could ever begin to do.

    My head is now completely fried - you see how he still gets me hopping mad! I could go on and on about the mistreatment of m.e. people, not only by F, but by the medical establishment generally - I call it 'A Crime Against Humanity.'

    Wish you well with the neurofeedback - and Conneticut sounds like heaven on earth. Keep in touch with your progress.

    With best wishes
  7. nickname

    nickname New Member

    ...I thought only Father Xmas lived in Lapland!! My friend took her daughter to Lapland in search of him two years ago!She said it was an amazing experience but had to wear five layers of clothing - it was SO cold in December.

    We nearly bought a house in Margaretting a few years back. It was a cottage way out on its own with a bit of land. Unfortunately, I really am not that countrifed, so when I met a cow at the end of the 'garden' with only two rows of wire fence between us, I was petrified!! It was at that point that I knew I was a townie, and we stayed put!! I think you are better off in Lapland - it must be far more beautiful.

    M.E./fibro is a dreadful disease process - my sister has fibro, and I have m.e. (or c.f.s. as its called in the US).
    I wonder if any country escapes having it, or is it just called something else.

    I shall think of u now and Lapland.
    With best wishes
  8. sb439

    sb439 New Member

    your (long) mail made me laugh and almost cry.
    I love the idea that Shereen (my cat) has made it on your wallpaper impersonating your (deceased) puss. (Confession: I have the photo as wallpaper, too.)

    I feel retrospectively vindicated in the leather jacket choice, so many thanks for your detailed description of yours (and others') experiences with Prof. F. The most dodgy element about him I found on the web is that he thought that to recover from ME you need a guru figure (implying that was him). I found that so annoying. (I can neither subordinate nor superordinate myself to people, as a result of an upbringing emphasizing every human being's dignity, and this has often brought me into trouble with doctors who expect subordination of the patient, so I know Prof. F would have been one more harrowing experience.)
    Your experience with him sounds horrible. Truly horrible. Crime against Humanity, yes. People with CFIDS/ME, apart from physically feeling bad and having memory problems, also can't deal with stress, and a (so-called) ME specialist who isn't aware of this AND the fact that most of us have a history of having been told by doctors that we are all fine, or worse, that we are hypochondriacs or nut-cases, and consequently treats his/her patients with adequate sensitivity, is a Criminal against Humanity, as he is making an ill person who can't defend her/himself adequately (BECAUSE OF THE VERY ILLNESS THEY COME TO SEE THE DOCTOR FOR) even iller.
    I've had many health setbacks as a result getting upset about a doctor's visit, so many that my partner finally advised me not to see any doctors anymore.
    Sorry for the ranting, but your post hit right home.
    best regards,
    ps: one difference between Dr Preston (Siberimaging) and Dr Parkinson is that they but the standard high value of the IE HZ at different Hertz - Siberimaging at 8 and Dr Parkinson at 6.5, her argument being that 8 could interfere with memory function, if I remember that correctly, whereas Dr Preston doesn't think it interferes. Another that Dr Preston often does 60-100 sessions, Dr Parkinson thinks you don't need that many. This latter point seems to me to be academic, as it depends on what you aim at: getting the brain back to normal frequencies, or getting it back to frequencies that make the person function adequately well.
  9. pinkquartz

    pinkquartz New Member

    for writing your post about your experience with Dr. Findley.
    Also i feel so angry reading about how he was to you.

    i have also had a s**** time with more than a few much ruder and arrogant than mere doctors,....for years and that includes now i will not go and see any of them.
    i have had enough of being treated like s****, and like your account i have heard so many others, it makes me cross !

    i think i might have said before , but i can't remember ,that i have heard of people who went to see him....they improve for a while but it never lasts....wonder if he ever really helps anyone ?
    i still don't get this neurofeedback thing , doesn't matter... i will keep reading....i am not going to be going too expensive....