Brain Fog/Lightheadedness Treatments

Discussion in 'Fibromyalgia Main Forum' started by spartanjt, Jun 26, 2003.

  1. spartanjt

    spartanjt New Member

    Hi All- I'm new to this board, but reading some of the questions and answers, i see there are a lot of folks w/quite a bit of knowledge re CFS symptomology.

    I wanted to ask about the "brain" problems that i've been experiencing over the 10 years that i've dealt w/CFS. I've tried all types of vitamins, supplements,therapies such as chiropractic, NAET/NMT, homeopathics, candida treatments, adrenal glandulars, had amalgams in 13 molars replaced w/composite fillings,,,etc,,,but i'm still dealing w/the fatigue (of course), but especially this kind of brain fogginess,,,which i would describe as a kind of "swimming" feeling in my head, and the feeling that i am slightly off balance.

    I've never actually fallen over during this time, or passed out, but i feel very uncomfortable, especially after sitting or standing for long periods. Being at work, at my desk, in front of a PC, seems to aggravate this also.

    It's a struggle, but I am fortunate to be able to work through this so that i can continue to work full time, and i do not have any of the muscle aches/pains associated w/fibromyalgia symptomology.

    Wanted to ask if anyone else has experienced these "brain" problems, and what helped them improve. The frustration of dealing w/this over so many years w/no sustained resolution has been very difficult.

    thx for the help.....
  2. klutzo

    klutzo New Member

    It sounds like you have run the gamut of therapies, just like most of us around here.
    One thing jumped out at me that you did not mention, however. Do a websearch for Mitral Valve Prolapse Syndrome, and make sure to put the word syndrome on the end, because there is a big difference between plain old MVP and MVPS. 75% of us have this problem, which is a dysregulation of the ANS (autonomic nervous system). It can be diagnosed with tilt-table testing and an echocardiogram, etc., but it usually is not necessary to go through all that.
    You do need an echocardiogram, which is a simple ultrasound of your heart.
    If you have MVPS, a supplement of COQ10 and Magnesium, as well as drinking a LOT of water every day can help immensely.
    Next time you are at the doctor, ask them to let you lie down for five minutes and take your blood pressue lying down. Then stand up and immediately take it again. If the two readings are different, wait two minutes and take it again. They should also take your pulse laying and standing.
    This will help to determine if you have MVPS, or NMH (Neurally mediated hypotension) or POTS (postural orthostatic tachycardia syndrome). If you have NMH, drinking a lot of water with salt in it helps a lot, and a drug called Florinef can be given.
    You should also ask the doctor to check you for nystagmus, which can be done by having you shake your head vigorously and then follow the doctor's finger with your eye as he/she wmoves it back and forth in front of your eyes. 70% of us have nystagmus, which is a balance problem.
    You could have any one or more of these problems which often afflict us.
    You could also be hypothyroid. You are probably aware that the symptoms of FMS are the same as hypothyroidism, and foggy thinking is a cardinal problem in hypothyroid. The new guidelines say that any TSH test result over 3.0 is hypothyroid, and over 2.0 is hypothyroid if thryoid or depression problems run in your family. Also, many of us have a problem converting T4 to T3, so you must have a T3 blood test as well, and if this is the problem, then you should take natural Armour Thyroid, not Synthroid.
    If, when your blood pressure is tested above, the standing pressure is lower than the sitting pressure, and remains lower after two minutes, you may need something stronger than the adrenal glandulars you tried. You may need a small dose of hydrocortisone (Cortef), the natural cortisol drug. Do a search at the top of the page where it says "search previous posts" and put in "Madwolf" (he is a P.A. who uses this drug in his practice) and you will get previous posts on this subject.
    Brain problems are part and parcel of this illness, esp. after you've had it for many years. You are not alone, and as you can see, there are many avenues to exolore to find help.
    We hope to hear a lot more from you around here.
    Hugs,
    Klutzo
  3. spartanjt

    spartanjt New Member

    Klutzo, thank you so much for the info. although i've read about some of the things you've mentioned, i'm not up to speed on all of them, so i will get to the researching.

    i wanted to follow up re the thyroid situation. i have taken Armour in the past, which seemed to help at first, but then the effect wore off. plus, i'm underweight for my height and very thin, and what i've been able to find out is that is usually indicative of adrenal rather than a thyroid problem, hence the adrenal glandulars. i've been on them for a few months now, w/little improvement though.

    the two things that have probably helped me the most, unfortunately are not the vitamins or the diet,but are the two meds i take.....klonopin to help me sleep, and lorazepam during the day to help relax/de-stress. plus, i've been told in the past that anti-depressants can sometimes really help the brain function better, but i have not tried those,,,i would like to stay away from add'l meds,,,,but will see how some of these other strategies work out.

    i plan to try to contribute to the board as best i can, and hope that i can get your input in the future too...thx again.

    JT
  4. Stillkicking

    Stillkicking New Member

    This really sounds like a chronic ear or sinus problem. Are you having headaches along too?
  5. spartanjt

    spartanjt New Member

    Stillkicking- I don't have any headaches,,,just occasional mild pressure in the head. And my ears seem fine,,,although i did have ear problems a few years back, which was corrected when i started wearing a bite splint to correct a tmj problem...
  6. klutzo

    klutzo New Member

    In response to your answer to mine:
    1. Klonopin helps our brain problem far better than SSRI's, which actually worsen it. Look in our library and read Dr. Cheney's article on Klonopin.
    2. I've known thin people who were hypothyroid, so it's not impossible. You must increase the dosage of Armour slowly until you get hyper symptoms, then back off one dose and that is your correct dose. Your symptoms determine the dose, not the test results.
    3. Have you had an ASI (Adrenal Stress Index) test done to determine exactly what your adrenal status is? This is the most accurate test there is, done at home from a kit, which uses saliva samples at four distinct times of day to determine your cortisol and Dhea-s levels. It can be covered by ins. if coded correctly, but you usually need an alternative doc to do this, since most regular docs don't believe in adrenal fatigue.
    Klutzo
  7. spartanjt

    spartanjt New Member

    very interesting Klutzo.......i didn't know about the Armour dosage increases, so may be i should go back to CFS doc i haven't seen in over a year. He had originally prescribed it, but i got so frustrated w/no improvements on it that eventually i stopped taking it and didn't go back to him.

    Funny you should ask about the ASI, because i took it a year ago thru Dr Posenecker's website(this was just after i gave up on my CFS doc). it showed low dhea and very poor adrenals( i thought i'd hit the jackpot of all diagnoses). He put me on his adrenal supp, a pituitary homeopathic, coenzyme a, and dhea supps....after about 4 months w/little improvement, he started me on a phosphylated serine product called seriphos. I was feeling completely wiped out on this stuff, much more than usual and couldn't understand what went wrong. A friend of mine, who has helped me w/the amalgam detoxing via the internet, told me that he had heard of other folks who used this p-s product and had problems, due to instead of calming the HPA and modulating cortisol levels,,,,it drives the levels too low, and causes problems. Part of this is due to the metals in the brains of some of us cause certain treatments to backfire sometimes!!

    that's why i thought i could re-start the glandulars again after a year had passed...maybe i should re-examine those old results, or get re-tested and see where i'm at w/dhea and cortisol levels.

    if i have a mix of adrenal and thyroid problems, then i'm probably missing the thyroid piece completely....what do you think??
  8. Mikie

    Mikie Moderator

    My Fibro Fog almost immediately cleared up after starting the Guai Protocol. I still have cognitive problems, but the feeling that I am walking through pea soup and about to fall are gone. I do balance exercises and they help too.

    Love, Mikie
  9. teach6

    teach6 New Member

    I have had many of the same problems you list. I would suggest that you read the post I just put up about orthostatic intolerance. It's another name for MVPS. You will obviously need help from your doc to treat this, but there are some good coping tips mentioned also.

    Barbara
  10. klutzo

    klutzo New Member

    I just came here to suggest reading her post...it is excellent and may give you some ideas to try.
    My experience with Guai was the opposite of Mikie's. I am just ending up 8 months on the highest dose with no result, but you never know until you try.
    Another ASI would be a good idea. I had one in 1999 that was awful, but was very surprised that the one I just had was normal. I did not take glandulars, but I did follow the Poesnecker recommendations about changing your life, and I did it all by instinct, because I had not even heard of him until recently. I eliminated toxic people ruthlessly, even if they were close relations, I demanded that I be allowed to sleep until 9 am. and I now turn off the ringer on the phones and the sound on the answer machine at bedtime and leave them off until I get up, I no longer answer the phone until I hear who it is on the machine, and I do not talk with those who keep me on the phone more than 10 mins. I cut down my gruelling exercise routine to a level that would burn adrenalin instead of releasing more of it, I became a hermit to a great extent, limiting my contact with others. When I do see people, I limit it to a meal and about 3 hrs. maximum time. I keep the windows closed now, though I love fresh air, because I can't stand the noise in my area and I need the quiet. I do not read the newspaper anymore nor watch the news unless I am feeling very strong. I do not schedule more than one extra thing in any 48 hr. period unless it's an emergency, and try to keep my daily routines the same, and eat at the same times, etc. It's boring, but it helps. You can find all these suggestions and more at Poesnecker's website, and as he says, taking all the supps. in the world does not help your adrenals if you are unwilling to change your lifestyle and accept that you will never be able to lead the current crazy American lifestyle. You probably already know what he says, but in case anyone else is reading this....
    Keep searching, and let us know what you find!
    Klutzo
  11. spartanjt

    spartanjt New Member

    Hi teach 6 and klutzo-
    I'd like to read the MVPS post,,,but not sure where it is? I'm back to work after 3 day weekend and kind of fuzzy this a.m....how do i find teach6's post...thx

    JT
  12. spartanjt

    spartanjt New Member

    Mikie- what is the Guai Protocol??

    JT
  13. klutzo

    klutzo New Member

    Your best bet for reading about MVPS is to go to the Mitral Valve Prolapse Foundation's website. Just do a websearch and you should find it easily.

    The Guai protocol is the theory of Dr. St. Amand, which is very different from most currently accepted theories. Many people claim great reasults from it. Guaifenesin is a simple drug with few side-effects, but the protocol is complicated and you need his book if you are going to try it. If you do one thing wrong, it will not work. It did not work for me even when I did everythijng right, and I just quit it after 8 months. The book is called "What Your Doctor May Not Tell You About Fibromyalgia". Also check out the guaidoc website for more info on what this is all about.

    Klutzo
  14. spartanjt

    spartanjt New Member

    Klutzo- thx for info re MVPS and Guai Protocol.

    My case does not include any muscle aches or pain associated w/FM, so i don't think i'm going to do the Guai,,,but, i found teach6 info re NMH, POTS etc....and some of those tips for combatting problems w/the blood pressure regulation , and standing/sitting for long periods seems to apply to my case quite closely.

    Going to add some salt to my water, and add more salt to my diet to see if that helps some.

    Someone on another discussion group had mentioned getting more flax oil/fish oil into the diet to help the brain too.......Wondering if anyone has been helped by that, esp as re their brain functioning??