Meniere's disease

Discussion in 'The Perfect Line and Other Riding Myths' started by tastroman, Jun 22, 2013.

  1. tastroman

    tastroman Long timer

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    A couple weeks ago I began having periodic bouts of severe vertigo a couple times a day and a persisting dizziness that just seems to hang around. The doctor has diagnosed me with Meniere's disease which is a chronic disease of the inner ear. Unless something changes, after 38 years on 2 wheels and 15 years of year round commuting on bikes, it appears I'm done. Just like that.
    Anyone ever had Meniere's disease put an end to their riding or been able to manage symptoms enough to keep going.
    #1
  2. damurph

    damurph Cold Adventurer

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    There was a video on here somewhere about two guys who had been riding/racing dirt for fifty years. One of them has Menieres and although there are days he has to not ride he was just hauling ass on the trails in the vid. Maybe some other inmate here can remember his name but he was damned impressive. It need not be the end.
    Google "fifty years of kicks" a documentary on him.
    #2
  3. tallbob

    tallbob Been here awhile

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    Tim,

    Sorry to hear that, hope you can get that under control.

    No experience with Meniere's but I had similar symptoms which turned out to be a viral infection. I would see another doctor. Good luck.
    #3
  4. dnrobertson

    dnrobertson Big Bike, Slow Rider

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    Diagnosed a couple of months ago.

    Just completed a two week 6000km ride in Australia.

    I am lucky my attacks aren't as bad as yours and tend to happen at night or first thing in the morning. Second Sat on the trip I awoke and knew I was in trouble. Stayed in bed for an extra couple of hours and I then felt much better. You sound much worse then me.

    Are you on medication? It's called Serc here in Australia. Meant to treat the problem in the inner ear. I have also found I need to reduce stress, reduce alcohol intake and get to bed early. Low sodium (of course, this is standard for Meniere's disease).

    Good luck.
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  5. tastroman

    tastroman Long timer

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    My ENT has me on a Diuretic to help with fluid retention in the middle ear along with low sodium and cutting out caffeine and alcohol. I think I could ride with the dizziness but when the vertigo comes on I know I should not be on a bike and the problem is, I have no idea when it will hit. I've been having 0-4 episodes a day usually lasting less then a minute.
    I am happy to read that you are still riding. Hopefully my symptoms will subside and I can get back out there.
    #5
  6. dnrobertson

    dnrobertson Big Bike, Slow Rider

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    Although there is no heredity link (that my ENT knows of), my two brothers suffer from Meniere's as well. My older brother also gets no warning of his pending attacks.

    I hope the medication and change in diet can control your symptoms. I know during my attacks, the only thing that helps is to close my eyes and try and get to sleep to relieve the symptoms.

    All the best for you. It's not easy going low sodium is it?
    #6
  7. Twinz

    Twinz Been here awhile

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  8. IceBikeDave

    IceBikeDave Been here awhile

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    Tastroman,
    I was diagnosed with meniers about 20 years ago. The doctor wanted to cut the nerve to one of the semicircular canals in each ear. This was going to eliminate one axis of my balance permanently. I did not have it done.

    About 15 doctors later, it turns out about 3 suggested I was eating something I shouldn't be eating. Darn, I thought, I have a real problem and these quacks were trying to change my diet.

    Long story short, and one more doctor, it was caused by food sensitivities. Change in diet and no more vertigo, dizziness, spins, headache. All gone. AND, I can bring it all back by eating the wrong stuff.

    Wheat causes my problem. All I have to do is lay off ALL wheat and wheat products for about 10 days.
    Sudefed would stop the vertigo and spins in about 15 minutes, gone, just that fast.
    #8
  9. 250senuf

    250senuf Long timer

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    Get a sidecar.
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  10. tastroman

    tastroman Long timer

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    I'm scheduled for PT in a couple weeks for this exact maneuver. I've tried it at home but maybe I'm not doing something right.
    #10
  11. tastroman

    tastroman Long timer

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    [QUOTE It's not easy going low sodium is it?[/QUOTE]


    I really don't even know where to start with it. This morning I went for a bagel only to find it was high in sodium.
    #11
  12. tastroman

    tastroman Long timer

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    Thanks for that. Nice video even if you don't care about Menieres.
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  13. damurph

    damurph Cold Adventurer

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    Inspirational for sure. The point was that though adjustments need to be made in your life it need not be the end of riding. Every doctor I have questions whether I should be on two wheels (except for my Cardiologist) but I live my life according to my standards....not theirs.
    #13
  14. VxZeroKnots

    VxZeroKnots Long timer

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    I have a brain condition the DRs thought was meneres until i went to a neurologist and had a MRI and a spinal tap. Still hasn't cleared up and I haven't done shit but fall over for the better part of 6-weeks. It's excruciating watching everyone have fun outside while a trip to the fridge is an adventure but they think they can fix it once all the test results come back. Long story short, go see a neurologist, and one of the DRs was I saw an avid outdoorsman with meneres so there is some hope. I guess it depends on what degree it affects you. If nothing else, sorry, this shit sucks.
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  15. tastroman

    tastroman Long timer

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    Yeah, a tag in a local tag game I play was dropped a few miles from where I live and it was disheartening not to be able to ride for such an easy grab. I live in a rural area with a lot of 1 and 2 lane roads so until my vertigo episodes diminish, or until I get my 14 year old through college (whichever comes 1st) I'm parked.
    #15
  16. Pantah

    Pantah PJ Fan from Boston

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    I think you need more opinions. I get vertigo once/twice per year. Usually late winter. I notice it coming on when waking up and rolling over. I get the spins. I have fallen right on my face bending over to tie my shoes. I've had to grab desks and the walls when walking to the mens room in my office.

    I could tell it was an inner ear thing/sinus thing, but I went to the doc anyway. She gave me something called IC Meclizine, which is a tiny pill. I am to take one or two 3x per day. It clears it up and after a couple days it does away.

    When I have these spells I don't ride or even drive. But I can walk to my office so no biggie. This has been going on periodically for about 5 years. Flu season. :confused
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  17. tastroman

    tastroman Long timer

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    I'm going to see a inner ear specialist at the end of July. (The earliest I could get in) This has been going on 3 weeks straight for me and the ENT says he see's no sign of infection, he tried a steroid shot and a Diuretic but neither helped. Head and sinus CT were negative. The longer this continues the more it's looking like Meneries which seems to be a diagnosis based mainly on symptoms.
    #17
  18. ossamon

    ossamon n00b

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    I have dealt with Meniere's for 20+ years. My version is now controlled with acyclovir. Short of an operation, I have tried most of the remedies. Unfortunately, Meniere's is diagnosed for a wide variety of symptoms, and what cures one person does not work on another. I urge you to check out the forum (message boards) at http://www.menieres.org/. There's a wealth of info there. Educate yourself before seeing a doc, and make sure the doc has successfully treated Meniere's patients. Some ENTs are not up to speed on the latest treatments. Good luck.
    #18
  19. foxtrapper

    foxtrapper Long timer

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    My world routinely spins and slides off sideways. Never been diagnosed with Meniere's disease, but others in my family enjoy it.

    There are times I cannot ride, or even figure out how to stand up, but overall, I usually can. I've learned to pretty much ignore what my ears are telling me, and use my eyes to orient with. Does make walking or riding in the pitch black kinda tricky.

    I've learned many of my triggers, and what cures and crutches work reasonably well for me. Dark roast coffee for example just about guarantees screaming ears and a wildly spinning world (and it's not the caffeine, seems to be the oils of dark roasting). Good old dramamine generally muffles things enough for me to deal with riding or a day at the beach (waves wreak havoc otherwise).

    Worse comes to worse, there are trikes and sidecars, or even sportscars. There are atvs and Jeeps. There are even landing gears for bikes (I used to make some myself, many years ago).

    Ug, fun typing this because it has me thinking about it. So now I can really hear my ears screaming and feel the spinning. Time to go do something else and distract myself. :lol3
    #19
  20. Ogre_fl

    Ogre_fl Long timer

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    Give it some time.

    My mother is almost completely debilitated by it, has had inner ear surgeries and is on meds for it.

    I had a bad bout of it for a few months 2 years ago.
    Given my mothers record it scared the crap out of me.
    I thought my riding days were over.
    Mine eventually subsided and for the most part has went away or I have learned to compensate.

    My wife just went through it, its been about 2 months now, but her's is going away too.

    I do wonder if it could be food (coffee) related as suggested.
    My wife had swapped to decaf around the time her's started and I swore that was part of it.
    #20