DIZZINESS ANYONE?

Discussion in 'Fibromyalgia Main Forum' started by gryffin, Aug 29, 2006.

  1. gryffin

    gryffin New Member

    I'VE JUST BEEN DIAGNOSED WITH FM, AFTER 16 YEARS OF VERY WEIRD SYMPTOMS AND DOCS TELLING ME I HAVE EVERYTHING FROM MS TO CFS TO VIRAL LABRYINTHYSIS... BUT MORE THAN THE PAIN I FIND IT DIFFICULT TO DEAL WITH THE CHRONIC DIZZINESS I EXPERIENCE... DOES ANYONE SHARE IN THIS?
  2. tata1580

    tata1580 New Member

    Well...I am with you..I have had a couple of time I was so dizzy I passed out..Hubby to me to the er and he told me it was the labryinthitis..

    I have it off and on several time a week but not to that extreme...I usually go lay down and sometimes that will take care of it for a while..

    I wish I had a good answer for you..

    Just know you are not alone

    Tami
  3. Noahvale

    Noahvale New Member

    Gryffin,

    Just wanted you to know that your not alone. I don't know why we (patients dx'd with FM) experience this, but the dizziness is a symtom of FM. I will be seeing my doctor soon and this is one of the questions I want answered as well.

    Take care and God Bless.

    Noahvale--Kathy
    [This Message was Edited on 08/29/2006]
  4. Scapper

    Scapper New Member

    Yep........me too.
  5. babygirl44

    babygirl44 New Member

    I asked my rheumy about dizziness and fainting he says fms does not cause dizziness.But we know better don't we.
  6. mezombie

    mezombie Member

    I get this combination dizziness/headache/nausea when I get too much visual stimulation. Being on the computer is, ironically, one of the worst triggers for it. I was finally diagnosed as having "vestibular migraines" by a doc who specializes in dizziness.

    The Dx hasn't really helped. Migraine medication supposedly helps, but it hasn't for me. I asked my neurologist for a referral to a PT for vestibular rehab, but was too sick to make it to most visits because of the CFIDS, so I had to stop.

    My neurologist was not impressed by the Dx. He said it simply means I have vestibular symptoms. Because I also get migraines (not as part of this), he said, the consultant dubbed the mess "vestibular migraine".

    Anybody else with this problem? It really impacts me severely. I was bedridden for days after posting for several evenings on this board with these symptoms.
  7. gryffin

    gryffin New Member

    ...I GET NAUSEATED, DIZZY AND HEADACHY WHEN I GO TO MALLS, SPEND TOO MUCH TIME ON MY COMPUTER, EVEN DRIVING WHEN THERE'S ALOT OF TRAFFIC. PT CAN HELP WITH THIS. I FIND MINE IS WORSE DURING THE SUMMER MONTHS, IN WINTER IT SEEMS TO GO INTO A KIND OF REMISSION (STILLTHERE BUT DEFINATELY NOT AS SEVERE>)
    [This Message was Edited on 08/30/2006]
  8. mezombie

    mezombie Member

    What kind of exercises did the PT do with you? I feel much of my problem has to do with my eyes, though I understand that vision, hearing, and balance are all interrelated.

    And how did you manage to get to the appointments? When I had to skip one, I noticed the PT wrote something that made it clear she simply thought I was uncooperative (even though I initiated the therapy!).

    Ideally, someone would come to my home to do this, and would understand the limitations I have due to CFIDS...
  9. gryffin

    gryffin New Member

    THERE IS A PT WHO WORKS WITH VESTIBULAR PATIENTS AT MY LOCAL HOSPITAL WHICH IS ONLY ABOUT A FIVE MINUTE DRIVE FOR ME. I MISSED A COUPLE OF APPTS BUT WHEN I EXPLAINED TO HER THAT I HAD MISSED THEM BECAUSE I WAS SIMPLY TOO DIZZY TO DRIVE, SHE WAS VERY SYMPATHETIC AND GAVE ME EXERCIZES TO DO AT HOME SO I DIDN'T HAVE TO COME IN AS OFTEN. GRANTED, THIS WAS ABOUT THREE YEARS AGO AND MY MEMORY SUCKS BUT WHAT I DO REMEMBER IS HER GIVING ME SOME LARGE FLASH CARD TYPE THINGS TO TAPE ON MY FRIDGE AND THEN A SHEET EXPLAINING WHERE TO STAND AND HOW FAST OR SLOW I SHOULD MOVE MY NECK AND OR BODY WHILE FOCUSING ON THE VISUALLY BUSY CARDS. HAD MANY HEADACHES AT THE BEGINNING BUT SLOWLY IT GOT BETTER. I GO OUT TO MALLS, DRIVE IN TRAFFIC, AND CAN WORK LONGER ON THE COMPUTER BUT STILL DO GET DIZZY ESPEC. IF I'M TIRED
  10. mezombie

    mezombie Member

    I appreciate the info. I may try again (sigh).
  11. gryffin

    gryffin New Member

    ...AND DON'T GIVE UP HOPE, SOMETIMES THATS ALL THAT SEES US THROUGH.

    GRYFFIN
    [This Message was Edited on 08/31/2006]
  12. Cromwell

    Cromwell New Member

    One of the hardest things is the dizzyness. Mine was very severe for a long time and I took meclazine OTC for it which helped.

    Now, it tends to be a strange head lightness rather than the vertigo it once once was. I have to say that when I was put on Cipro for a UTI, the dizziness got a lot better so I think it could be bacterial or viral in nature.

    You may want to try an antibiotic or anti viral. I hate to take meds, and the cipro did a number on me, but it did help the dizziness I had had for a year.

    Love Anne
  13. gryffin

    gryffin New Member

    everyone...it really does help to know that this dizziness is "normal"...

    Anne - I have been taking meclazine over the years for my vertigo but it really doesn't help much. I can't wait till I'm able to see this FM specialist outside of Boston to hear what he has to say. Although from what I've read so far it sounds like our muscles/nerves are so tight in the neck that it can interrupt with blood flow and cause incorrect signals as to where our head is in relation to our bodies...In other words our brains are getting mixed signals from our eyes and bodies and thus causing the vertigo. It sounds resonable enough...
    [This Message was Edited on 08/31/2006]
  14. mrstyedawg

    mrstyedawg Member

    I have CFS, not Fibro, but I also deal with the nausea and dizziness. What I finally found to help me is a supplement called "Methylcobalamin" B-12. I ordered it online. It is not expensive. I think I paid about 20.00 for 120 pills. It has really helped my dizziness.

    Andrea
  15. gryffin

    gryffin New Member

    I'll try it!...heck at this point I'll try anything.
    Thanks again,
    Gryffin
  16. mrstyedawg

    mrstyedawg Member

    Good luck, I really hope it helps.

    andrea
  17. VickyLynn

    VickyLynn New Member

    I have FM/CFS and have a lot of dizziness. My neuroligest put me on neurontin and it has helped me alot. It has also totally stopped the strange shooting electric type pains I had been having in my legs. I had been extremely dizzy for a whole year none stop. I'm still bothered with it slightly every day but am able to function normally again and even drive the car at times. I also had migraines for about 20 years nearly none stop before I was diagnosed with FM. I hope you get some relief. Vicky
  18. opticaltech

    opticaltech New Member

    I get the same symptoms..dizziness when the sun hits me or I am in a very bright room...I also get dizzy after a shower!...Even when reading if the book is tilted a certain way..I have to lay down till the spell subsides..........L.
  19. charlenef

    charlenef New Member

    i had this when i was 24 i was dizzy for 2 years. i still have dizziness on and off 12 years later. i would like to alert you about thing that happened following. when i was 33 i use a steamer that made me loose my hearing i got it back but now am stuck with hyperacusis(hearing too loud) this is not fun i wear earplugs because noise hurts my ears. i am also sensitive to smells gas ,smoke and bleach all make me dizzy to this day, so i thought i would warn you about chemical and noise exsposure for the rest of your life. take care i know this is not easy .did you have a test to confirm ? THIS DIZZYNESS IS NOTHING LIKE ANYOTHER I HAVE charlene
  20. brella

    brella New Member

    i get dizziness also..some times i have it a lot and sometimes it won't happen for months.