The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Dizziness / motion sickness

Discussion in 'General Symptoms' started by researcher, Feb 19, 2018.

  1. researcher

    researcher

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    Hi y'all

    PS: I posted this on General Treatment, Mods please remove that one. I think its way better off here.

    It came to my mind that someone may have the answer I am looking for and I won't need to go and do the try and error.

    Last year (actually January, so 13 months now) I had a huge vertigo (things were going around) outbreak. I have had dizziness before, but only for small periods and eventually it would go away.

    Not this time. Since I have had that vertigo outbreak, I suffer from permanent dizziness (yes, on some days it goes away 100%, or at least 90%, but I'd say that those days are only 20% of the time, if that much) and eventually motion sickness came along. This one is also persistent.

    I also have bad neck pain. This is pretty much the only pain I have (although recently all the muscles in my head seem to hurt, but those ain't big pains).

    The question is: what I can do the soften or get rid of this dizziness and sick motion?

    Any comment is welcome.

    Thanks a lot
     
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  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I don't know how to get rid of motion sickness once its started - for me its a cascade of physiological responses that once triggered seems to run its course even though I remain horizontal and not moving - I only have it periodically, it must be torture to have it as frequently as you do.

    When you mention neck pain, 1 thing occurred to me as potential routes of investigation: chiari malformation

    https://en.wikipedia.org/wiki/Chiari_malformation
     
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  3. Eastman

    Eastman Senior Member

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  4. andyguitar

    andyguitar Senior Member

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    These sort of symptoms come up regularly with ME/CFS. But i wonder if it is, in your case, something like an ear infection? You been checked for this?
     
  5. researcher

    researcher

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    I took 1mg of sublingual B12 from Douglas. No help for me.

    Will look into Folic Acid.
     
  6. researcher

    researcher

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    I have.

    The thing is, I have CFS for 5 and a half years now and this only started last year. Before I had a few episodes, but I considered myself 100% functional from a "head" perspective. Until the dizziness and motion sickness started.
     
  7. andyguitar

    andyguitar Senior Member

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    I dont expect you want to experiment on yourself but.....travel sickness pills maybe?
     
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  8. researcher

    researcher

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    I reject any kind of drug in my system, as I am sure that will impede my recovery, so that is out of question. :-(

    PS: Actually at some point this was so bad that I took labyrinth oxygenators. No help. A few week after I said I am done with this suffering, and I started a routine to long term recovery, which I am following now. I just wondering if there is some nutrient I could mass dose and test. Perhaps will try B12 again.
     
  9. PatJ

    PatJ Forum Support Assistant

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    Here is a thread on PR about Mal de Débarquement (a type of dizzyness) and a potential treatment.

    There is an acupressure point on the wrists that can be manually stimulated to help relieve nausea and motion sickness.

    The Relief Band is an electronic device that sends small (adjustable) electrical pulses into the P6 acupressure point so you don't need to manually stimulate it. It has been clinically tested and has FDA approval.
     
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  10. kangaSue

    kangaSue Senior Member

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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    No, but my mother has my father do that maneuver to her when she has vertigo.

    And now that you mention it, there have been a few times - once in particular may be a positive clue: I taught myself to swim so can only do (poorly) freestyle - I don't know any other swim strokes - I went to a swim coach and about 5 minutes into the session he had me turn onto my back to do the backstroke, and as soon as I went from horizontal face down in the water to on my back, I was slammed with nausea and dizziness and had to be horizontal beside the pool for 30 minutes before I could stand up. I assumed that was a motion thing. Never occurred that it could be messed up crystals like my Mom.

    But I've always been sensitive to motion (thanks Dad - he and one of my sisters are also sensitive) - but now with ME I'm even more sensitive.
     
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  12. researcher

    researcher

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    1) I don't want to do drugs.

    2) I have tried the maneuver myself (there is a way of you doing it by yourself) and it didn't work.

    I REALLY NEED HELP WITH THIS. I will ask my naturopath whether I can do 4 mcg of Vitamin B12 a day, or have a few shots.

    Please, if you know something that works with dizziness and motion sickness, do let me know.
     
  13. Pink

    Pink Senior Member

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    Before my cfs flared up and became debilitating , I was hit with severe vertigo & dizziness. I always have motion sickness in a car, and like the person above mentioned, I cannot swim either .
    I went to an Ent, he said it's chronic sinus congestion. He did some maneuver on me but it didn't work.
    I got my balance and hearing tested, showed nothing.
    Then my jaws started really aching so I thought the dizziness had to do w that. Ended up by a crook of a dentist , who removed all 4 wisdom teeth (only 1 had significant decay) and around then was when my cfs got terrible. Can't recall if it was right before or right after the tooth removal.

    I hope u find some relief, dizziness is really awful. It comes and goes now. Sometimes I wonder why everything looks crooked in my house. It's just the vertigo flaring up.
     
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  14. researcher

    researcher

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    I am 28, I am in a reasonable financial situation. I will fund my own experiments, and I am sure I will eventually be successful. I will keep you posted on my results, I just wonder if I am not missing anything.
     
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  15. Forbin

    Forbin Senior Member

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    I would suggest seeing an otologist. They are the experts in hearing and the inner ear (where balance is controlled). They are not to be confused with audiologists, i.e. those whose principal concern is measuring hearing loss.

    Balance impairment is a fairly specialized field. One's best bet at getting expert help is probably at an otological research center. I don't believe there are many of these, but the one I know of is the House Clinic in Los Angeles
    https://www.houseclinic.com/. It is connected to the House Ear Institute https://hei.org/ which is one of the top research centers on hearing and balance in the world.

    This is the direct link to their page on balance.
    https://www.houseclinic.com/balance

    As a first step, though, you might want to go to a local otologist. They probably have better knowledge about things like how to properly execute the Epley maneuver than what one can glean from the internet.

    [ My personal suspicion is that, in addition to low blood pressure, balance problems in ME/CFS - especially if they are independent of position - may be the result of constriction of the tiny blood vessels that supply the inner ear. ]
     
  16. researcher

    researcher

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    Hi @Forbin

    I live in Portugal and currently I am home bound. I have visited an otologist (or the closest thing there is to that) but he was not able to help. Instead, he prescribed me Anxiety pills and what not. I am SO done with the conventional medicine docs...
     
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  17. erin

    erin Senior Member

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    I have motion sickness when travel and I also have attacks of dizziness in general.

    This is going to sound silly, but this is I found helpful when traveling and during the attacks: I completely cover my belly button tightly with plasters ( I mean dressing strip). I use 2 or 3 of them making a cross on top of the belly button, quite tightly. It helps to a degree with me. I know it is not scientific and a bit silly but worth a try. I guess no side effects, if you have healthy skin around your belly button.
     
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  18. PatJ

    PatJ Forum Support Assistant

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    How did you decide to first try that?
     
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  19. erin

    erin Senior Member

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    I suffer a lot when traveling but not use any medication. I'm usually allergic most meds nowadays. I asked to our local chemist about sea bands/ Chinese wrist bands for travel sickness. She said she's not got them but she uses plasters for her kids travel sickness and it absolutely works. Unfortunately I never asked how she'd found out about this. I should've asked.

    I was a bit cynical at first but I've tried in my last journey to the airport, almost 2 hours, first bendy country roads then heavy city traffic and then motorway. It worked. I'm usually OK in the plane but I kept them during the flight; 4 and a half hours and a half an hour taxi journey from airport to home. This was my best travel so far for years. I caught the glimpse of the plasters when going to bed at night, I totally forgot I had them. It was a long day for me. I'm usually pretty housebound.

    Although plasters were recommended only when traveling, during a dizzy episode I was so desperate and tried and they helped a bit. But not eradicated dizziness completely.
     
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  20. andyguitar

    andyguitar Senior Member

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    Could be an acupuncture point @erin.
     
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