Meniere's disease

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

  1. GapRunr

    GapRunr Been here awhile

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    A good friend who rides was having bouts of vertigo as well, and after a bunch of tests was also diagnosed with Meniere's disease.

    He did a bunch of research, and eliminated Gluten from his diet. Within a week of being Gluten free, his symptoms went away and so far have stayed away.

    Francois
    #21
  2. ThosMa

    ThosMa Adventurer

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    +1 on all the calls for a 2nd opinion. I had symptoms like Meniere's off and on for several years, where the room would start acting like a Ferris wheel or start doing barrel rolls. After extensive (and very nasty) tests, it got diagnosed was Benign Positional Vertigo. "Benign", my a$$ - one time the room spun so bad I hyperventilated, got numb in the extremities, and was taken to the ER with a "potential stroke". At age 23. Another time I started spinning while I was driving (the car). Fortunately I was on the flat, straight I-80 in Iowa at the time so I just kept the controls straight and did fine. For about 10 yrs I ALWAYS had meclizine handy.

    The good news was that it pretty much went away by itself - I haven't had a bad attack since about 1993. I make sure I keep well hydrated to keep the inner ear fluid in balance, and I don't go on amusement park rides or do anything that involves spinning. So there's hope. Good luck.

    -ThosMa

    Edit - Re Gap's post. Funny thing; Years after my inner symptoms settled down I got diagnosed with celiac, and went gluten-free.
    #22
  3. lnewqban

    lnewqban Ninjetter

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    I had a series of similar attacks at the beginning of this year.
    My doctor did not arrive to such diagnostic, but I kept riding and it has gotten much better by itself and with regular physical exercise.

    Hope yours is not as serious as diagnosed and that you feel better as well, tastroman.

    Otherwise, I would consider a side car or trike.
    #23
  4. Eddieb

    Eddieb www.AdventureRidingNZ.co.nz

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    One of our Wellington riders in his 60's has had Meniers for a few years and is still riding so it's possible for some. He's an inmate here too so I'll make sure he see's this thread and can contibute if sees fit.

    I've been going through similiar issues recently and my Dr is angling towards it being BPPV which causes very similiar effects. I'm waiting on more tests at the moment.

    http://en.wikipedia.org/wiki/BPPV
    #24
  5. Oaters

    Oaters Old - not bold - moto riding addict

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    Well Eddie is a pal of mine - riding with him keeps me young at 65

    As Eddie has said I suffer from attacks of vertigo that can be debilitating. I currently medicate on 16mg per day of SERC http://www.news-medical.net/drugs/Serc.aspx following a major episode which saw me hospitalised for a night whilst travelling in Europe in late 2007.

    My experiences with attacks of vertigo began in the mid '80's. Initially my spins lasted only a short time and had me holding on to my chair or clutching a desk. In 2000 I had a major spin whilst motorcycling - it began as I looked up on leaving a small stream crossing and got progressively worse over 10km where I stopped the bike - and literally slid to the ground. My wife had to come and pick me up in the car - during this and subsequent attacks - feeling hot and vomiting whilst the whole world is rotating has been a common experience.

    Coupled with the spins in my case has been hearing loss - significant in my right ear and lesser in my left - talking in a social setting is really hard.

    I find triggers for me are Stress, Excessive Caffeine, alcohol and salt.

    For me the attacks are far less frequent and with the SERC I'm able to lead a normal life. Keeping up on one's sleep is also a necessity I find.

    Other's have commented that Meniere's is difficult to diagnose and tends to be applied to a lot of conditions to do with the inner ear - that's been my experience aslo

    Someone has already referred to the Meniere's Support Group - I have found this helpful in times past http://www.menieres.org/

    best wishes Aslan
    #25
  6. tastroman

    tastroman Long timer

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    Thanks for all of the replies. Currently my episodes of vertigo seem to last from 5-20 seconds although I stay dizzy between episodes of vertigo. I have read that with Menieres, the vertigo attacks usually last from minutes to hours. So I'm wondering, those of you who do have Menieres, how long to your bouts of vertigo typically last?
    #26
  7. Red J

    Red J Been here awhile

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    Also research labyrinthitis. If your ENT determines you have this, do not despair. Instead, become religious about your exercises.
    #27
  8. Oaters

    Oaters Old - not bold - moto riding addict

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    In my case - when I have a severe attack - hours - like overnight - retiring to bed is my only option - however, with SERC and care on the sleep, stress,caffeine, salt and alcohol the attacks are very infrequent - last one 2011 if I recall correctly. I went for 15 years before they became debilitating with steadily deteriorating loss of hearing in my right ear.

    Best wishes
    #28
  9. Jan from Finland

    Jan from Finland Been here awhile

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    The first astronaut Alan B. Shephard was diagnosed with it. After then experimental surgery he went to the moon. So there is hope. Best wishes.
    #29
  10. Frostback

    Frostback Frostback

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    I have great sympathy for such a chronic problem. Once 40 years ago as a 17 year old, I was riding across a bridge with a steel superstructure and had the terrifyingly real impression that the bridge rotated 90 degrees and I was riding on the side like a wall of death for about 10 seconds. I just held everything steady and it came back but panic was not far behind. Never another problem, mever understood what happened. Very dream like.

    Many on this board suffer from manures disease but that is a different problem :)

    Lee
    #30
  11. PSS

    PSS Been here awhile

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    My wife who rides a little came down with Meniere's in late April. It just came out of nowhere, featuring vertigo and severe vomiting. She thought it was benign positional vertigo but finally went to her ENT doc who diagnosed it as Meniere's. Said that the Epley does no good which my wife agreed with since that is what she and a physical therapist had first tried She works as a personal fitness trainer so it effected her work. Like someone else said, give it some time and watch what you eat; the wife's is about 95% improved now and she's nearly back to normal with no medication. Just watching her diet and the salt content of food more than she used to. Best of luck in dealing with it.
    #31
  12. injun

    injun Been here awhile

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    mine is from a real bad crash not the disease I had to learn not to trust my ears and not to fly any more sever spins and vomiting, these days I learn to balance my shoulder muscles and that helps but their are some days when I don't ride, getting old is an adventure!
    #32
  13. SigepKat

    SigepKat n00b

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    I've dealt w/Meniere's for about 3-4 years...I've been on acyclovir (helped), pregnenolone (helps control inflammation, helped), another antiviral (can't remember the name, also helped), and a monthly steroid shot. I started allergy shots (allergies have always been a problem) about two months ago and I've had no symptoms since then. My first ENT told me that the best I could hope for was slow hearing loss and eventually feeling dizzy all the time, that was the last time I saw him. My current ENT has tried something new every time the previous remedy quit working, so I would strongly recommend a second opinion. Don't give up on riding unless it doesn't feel safe.

    CM
    #33
  14. superkram

    superkram Church parking lot rider

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    I'm a deaf rider and use sign language. Have dealt with periodic episodes of vertigo dizziness since I was 23 (I'm 36 now) with varying degrees of frequency & duration. As someone mentioned, severe spins while feeling hot and vomiting are the worst.

    Mine can come any time, but I can keep things in check by being careful with caffeine, avoiding fast food, managing stress, giving myself plenty of outs, and most importantly, alcohol. When I quit drinking & got sober 7 years ago, I was amazed how my vertigo immediately dropped to almost nothing. Don't waste your time around negative people or situations. Treat yourself well & congratulate yourself for any small minor good things you do.

    Part of it could be psychological, as getting sober allowed me to deal with a bunch of inner issues, and thereby reducing overall stress levels from knowing I wasn't hitting the bottle to avoid other problems. On the other hand, I wasn't dealing with hangovers, and a lot of alcohol does involve grain hops (gluten source?) as I was mostly a beer & mixed drinks guy, not a wine person.

    While I got sober for myself, I have to admit the huge reduction in vertigo definitely helped me stay sober in my early sobriety. Hey, if that's a blessing in disguise, I'll take it!

    Obviously, I don't ride if I have the spins. However, I've taken plenty of long trips (12K avg/yr) and know myself enough to plan routes that give me flexibility if vertigo hits me, and make sure I give myself plenty of time for rest if I start feeling iffy. I keep meclizine & ativan handy, and take as needed, but usually don't need it while riding.

    No shame in keeping a credit card handy & checking into a motel earlier than planned while on the road. I haven't camped while on the foad yet, curious how that will work out. Just having mental "outs" actually takes the edge off and lets me focus on the riding, including an awesome FL-CA-FL ride over 17 days on the FJR last Xmas.

    Good luck to everyone! Just do the next right thing after the next right thing, and eventually the tide shifts back in your favor.
    #34
  15. tastroman

    tastroman Long timer

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    Thanks for that. I've been feeling pretty crappy as I'm sure everyone does when they faced the reality that they have a chronic condition with no cure so there is no going back. I've been entertaining the idea of selling my Buell (the only new bike I've ever purchased) but with that would also go the admission that I've sort given up 2 months into dealing with this crap. Currently I kind of look at it like I'm going down a road that's deteriorating with no option of turning around, ever. And when looking to my future I'm having trouble envisioning those good times ahead. As crappy as Menieres disease is I almost feel guilty for never having heard of it before getting it.
    #35
  16. Mattbastard

    Mattbastard Lazy ass

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    My first snap with Vertigo was when I was in college. I had a bit of a hangover and slept in a really warm room that night. When I woke up I was lying on my stomach but facing left. I shifted from left to right when the room started spinning, BAD! I sat up and it felt like I had the bed spins. Started cold sweating, freaking out a little, then it calmed down and I went home. Doc said BPPV, caused by little mineral crystals forming and rattling around in the part of my ear that controls the feel of position. He said, "similar to kidney stones". This gave me closure, but no cure.

    Then I did my own troubleshooting. If kidney stones are prevented by staying properly hydrated, I'll give it a shot. I noticed my spins were usually more pronounced during hangovers, so I started pushing water. Not soda, coffee, beer, but WATER. Low and behold, it worked. Now (about 10 years later) if I start feeling dizzy or like my balance isn't all there I have a big glass of water or two. I've started putting in those low calorie flavor packs to help.

    Good luck. This ailment sucks.
    #36
  17. windblown101

    windblown101 Long timer

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    Dragging up this old thread to throw my experiences with Meniere's into the ring and offer what has helped me be able to ride again.

    A bit of history:

    I had my first episodes of severe vertigo in 2009 and was diagnosed with Meniere's in February 2009. After awhile I learned to recognize the signs of an impending attack and knew that I needed to get somewhere quiet and dim to hunker down for what was to come over the next several hours. The attacks were exhausting and would leave me feeling dizzy and mentally cloudy for a few days after. Often just about the time I was feeling completely symptom free I would have another attack. I missed a fair amount of work and riding was out of the question a lot of the time.

    I went to specialists. Got batteries of tests. I modified my diet as directed, cut out caffeine and salt, even stopped smoking for awhile. I also took the medicine they prescribed. I became better able to handle the attacks by knowing what to not do when they hit and the symptoms became slightly less severe (or got just got used to them, not sure which). I could ride between attacks but my enjoyment of riding was seriously curbed by fear of an attack while out and the lingering affects that always seemed present.

    Fast forward to about 2 years ago - Having had MRI's, injections, medication etc and still suffering from attacks and the after effects I asked my doctor what was the next step. He said he'd like me to get fitted for a Meniett's device and try it before operating to cut the balance nerve in my right ear.

    A Menietts device is a small air pump you carry around and it pressurizes your inner ear with pulses. The theory being that it helps reduce the excess pressure which is believed to cause the symptoms. The user is to connect themselves to this pump several times a day. I read up a lot on it and folks were reporting good success with it. Then I ran across a little gem from a blog...

    One sufferer had found that he could keep attacks at bay by pressurizing his inner ear by blowing out while holding his nose a few times a day. (Like you would to equalize air pressure when flying.) I decided to give it shot before buying a $3000 dollar air pump and having a tube in my ear. That was almost two years ago - I have not had a severe attack since!

    Is it a cure? Well, no. The balance nerve in my right ear still likes to send false signals to my brain and I still have to blow and pressurize my ears a few times each day. I've learned to do it anytime I feel that dizzy queasy feeling start to come on or when my tinnitus in that ear starts to increase in volume. I still have days when my balance is noticeably off a bit however eliminating the attacks has changed my life. As an added bonus I now don't take any medicine don't worry much about salt intake or caffeine! :)

    What is the likely outcome? According to the docs it's possible I'll be able to keep the symptoms at bay and the balance nerves in my right ear may eventually "burnout". At which point the false signals will be eliminated. If not the attacks will come back and I'll get the balance nerve clipped.

    So in the meantime hows my riding and what do I do to help improve my balance?

    The biggest thing I do that helps my riding is to continually work on getting my brain to filter the false balance signals. Let's face it, it sucks to be going around a corner on a motorcycle and feel like you're falling down! Or to get bounced sideways by a rock off-road and be getting false balance signals giving you bad info. It not only takes the pleasure out of things it also is hard to not have the body react to the FALSE balance signal with a bad end result.

    I'm not a workout kind of guy and have a desk job at this point in my life. But I work on my balance every single day. It pays huge dividends by teaching my brain what signals to ignore. I started by just practicing standing on one foot (then the other). Then standing on one foot while swinging the other leg around, then standing on one foot and focusing on my hand as I slowly wave it in front of me. Bending forward, back, and side to side while standing on one foot. Toe touches (standing on both feet). I turn my head side to side to gauge my progress and get a fell for how I'm doing on any particular day. If I can turn my head to the side quickly and not get that dizzy merry-go-round feeling I know I'm doing good!

    It was frustratingly slow progress but I can now ride and truly enjoy it again. For a long time I stuck with riding more out of stubbornness than enjoyment. It's nice to be able to "feel" getting deep into a corner or bouncing around a bit off road and not wonder why I fell down. ;)

    Anyway, that's my story with this pesky condition. I hope it may help others. One thing seems clear, what works for one person does not always work for another. If you suffer from Meneires my advice is to try everything and do your best to stay positive. If you have an attack don't fight it. Rest, let it run it's course and then take the fight to it when it's in a lull.
    #37
  18. Tmaximusv

    Tmaximusv Long timer

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    Got a good friend who has it and rides extensively. He keeps his ears covered whenever he is in motion, including windows down in a car (cotton wool).

    He had a medical scare last spring that was a hyper aggravated Meniers episode, made worse by ER docs who treated it like a cardiac incident (O2) which blew everything up. Different doc in another hospital went put just shy of calling his first doc out on malpractice. In short, different meds, good control and observation of signals and he's riding more than ever.:clap

    Go get em(including a doc who knows the disease).
    #38
  19. hootch

    hootch Been here awhile

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    Unfortunately I can relate to where you are at. Many folks have found relief through diet. After many trips to the local health care monopoly, I asked to see the "doctor that has been here the longest". "I don't care what it is any more, just give me something to make the world stop spinning around." He prescribed Promethazine, 25mg. It is an anti nausea drug that I usually take once a day. Give it a shot. It made it possible for me to ride again and I hope that it works for you!
    #39
  20. tokyoklahoma

    tokyoklahoma 75%has been 25%wanabe

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    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.[/QUOTE]

    Even when you cook at home, a lot of ingredients have hidden salt. When you have been "salt free" for a few months, going out to eat can be a shock. :eek1 It really is criminal how much salt we are used to consuming.
    Morton (the salt company) has a product called "No Salt" that is pretty good for cooking. :deal
    #40