Ménières Disease – the common rare disease

Until I went to an ear specialist for an unusual weird loss of balance migraine thing, I’d never heard of Ménière’s Disease. I was told it was rather rare and there was no way of diagnosing it, apart from ruling everything else out. A few years later, and once everything else had been ruled out, I was diagnosed, provisionally, with this rare inner-ear disorder. Then I moved country from France to my native UK. Once again, they had to rule everything out, but they were pretty quickly convinced I had Ménière’s and I was put on a rolling prescription of Betahistine, which has reduced the severity of it for the past couple of years. Anyway, sob story and tinnitus aside, this isn’t about the disease as much as it is about how rare it … um, isn’t.

Betahistine Hydrochloride, 16mg

Betahistine Hydrochloride, 16mg

I suspect you’ve never heard of it, as I hadn’t when it was suspected to be the cause of my ear problems. However, shortly after hearing about it, it appeared everyone knew someone with it. My best mate, who returned to Scotland from Japan the year before I did, was diagnosed with it. My brother in Thailand doesn’t have it, but his wife does, as does his ex-boss’s mother. Friends, plural, of my missus’s family have it. Alan Shepard landed on the moon after being cured of it (cures are apparently risky and don’t always work) and Guy Kawasaki blames his attacks on Powerpoint. Julius bloody Caesar had it! It’s not rare, yet no-one has heard of it.

So, when I finally get an obscure incommunicable disease that will make me interesting at cocktail parties, it turns out everyone already has it, thank you very much. Great. Whoopee. To make matters worse, the cure is “sometimes it just goes away.”

Jared Earle is a writer, photographer and systems administrator. You can find him on Twitter most of the time.

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  • http://TheBestHorseSense.com Jay Koch

    Yup, sometimes it goes away.

    At one time I was debilitated with Meniere’s to the point I was afraid to drive. Twice a week I would get an attack that would send me to bed for the rest of the day.

    Then, one day, it went away, as did the tinnitus. I’m left with a nearly deaf ear, but at least I am not dizzy any more.

    It may be a coincidence, but my symptoms went away when I stopped eating meat. I’ve started eating meat again, but the symptoms haven’t returned.

    A couple of years back the dizzy spells came back when I was stressed at work. No symptoms since I quit that horrible job.

    But, yes, it does sometimes go away.

  • Spadge

    Nobody’s heard of it cos they’re all deaf.

    Bad joke, but too obvious to not post it – sorry.

    :)

  • Scott Earle

    @Spadge

    Dude, just no.

    😀

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  • http://happyinspirit.wordpress.com Amy

    LOL @ Spadge :) My best friend just told me the same thing. Her father just got diagnosed and the doctor told him it was rare. She said “Strange how this disease is rare, but I now know a few people that have it”.
    I, too, am suffering from it. My doc gave me a diuretic that I take only when symptoms start forming. I don’t mind the running to the bathroom as much as the low blood pressure and low salt and low potassium that occurs. It is so tiring.
    So I guess I’ll just keep living life and just wait for it to go away

  • PATRICIA

    I have menieres & was treated for “panic attacks” for years ending up in hospital a number of times. Then I had a new doctor & she diagnosed the attacks as menieres & prescribed a betahistine – serc 16 – since then i have had no further attacks. My sister-in-law also has this “rare disease” & is also on the same tablet but a lower dose. She moved house & her new doctor said he didn’t think it was meniers & promptly removed her tablets – yes you guessed it the attacks returned! His advice on subsequent visits was to take a pill when she had an attack! The moral of this story is not that the disease is rare but that the doctors are rare in knowing how to diagnose it. Me, i’ll just keep taking the pills!

  • Ray Mayes

    I have had Menieres disease for three years. Prescribed medication is Betahistine 16mg three times a day. This does help, but I still get attacks from time to time. What I have discovered lately, quite by accident, is that drinking Tonic water seems to help even more. This may be a coincidence but it works for me. I know Tonic water contains quinine, can this be of benifit? I should like to hear what other sufferers think.

  • RabC

    Hi just wondered if any of you sufferers have ever had an accident in acar which resulted in whiplash , or a blow to the head at any time?
    I was suffering what i thought was menieres Disease for many years and having hundreds of bouts of dizziness per day but i am now free of all symptoms thanks to a treatment called NUCCA.
    If anyone wants to know more let me know.

    • cn

      Yes, have had accidents where i was hit from behind by a truck. MD started 6 yrs later. I know that going to a good chiropracter that uses an activator to apply light pressure usually helps me feel better, but that alone doesn’t resolve MD. Will have to look into NUCCA (National Upper Cervical Chiropractic Association). Thanks for the tip RabC (did you also have any hearing loss?)

  • http://www.23x.net Jared Earle

    I’ve never been in a car crash or suffered a blow to the head. I can’t speak for anyone else though.

  • F

    The DX is clinical, the only way to absolutely DX Menieres is post mortem. I suspected I had it due to dizziness, nausea vomiting, hearing loss and Tinnitus. Was put on Betahistine (US:SERC) for months. Eventually I got to see an ENT but it was just a pre-malignant tumour, positional vertigo, noise induced hearing loss and Tinnitus.

    Ray, Quinine is ototoxic. Certain derivatives of Quinine, used in antimalarials are cochleotoxic.

  • F

    Rob, trauma to the head and neck is quite a different paraphysiology.

  • Jeff

    Regarding car accidents, take a look at http://www.mylifeandmenieresdisease.com – David, the chap who writes it, puts his meniere’s down to one.

  • http://www.mylifeandmenieresdisease.com David Stillwagon

    My first meniere’s attack was a week after my car accident. The first ENT that I saw didn’t think there was any connection, but I truly believe that it was the trigger that started my meniere’s. It just seemed like more than a coincidence.
    I really like your blog by the way

  • Marcus

    How weird is this – was diagnosed with Meniere’s in a random hospital in Cambridge when I collapsed in Ely back in ’04. Anyone want to try to do stats on classmates coming down with the same random illness. Come to think of it… let’s look into the Educational system we went through and see if that had any bearing on our chances of getting this illness. Oh and for the record – no car crashes either but a blow to the head aged 4 whilst blissfully sat on the swings (swinging, natch) and my best friend at the time insists on trying to get me to catch a housebrick whilst I am ignoring it. Head/brick trauma incident. Other than that, I am (allegedly) normal!

  • http://thedailydish.us Dishy

    I was diagnosed with Meniere’s 6 years ago, after going almost a year without proper diagnosis. I don’t take a diuretic and try hard not to take Meclizine either. I stick to a low sodium diet and drink wine nightly to keep myself relaxed and ever slightly dehydrated. I find weather triggers my symptoms, as well as vibration (dental work, travel, DIY work on our house), so I try to avoid those triggers at all costs, if possible. It really stinks being a human barometer.. But I try to stay positive. Many days I am dizzy, but not incapable of functioning fairly normally. I try to ignore my symptoms as much as possible, and not dwell on this plague. The thing that irritates me most is the unpredictable nature of this disease. It can be very wearing, going from feeling fine to FLAT in point zero seconds. Anyway, I also blog as well as run a low sodium recipe site. All are welcome – but a sense of humor always helps. Wishing you all health & happiness. Christy

  • Pam Cindric

    David Stillwagon. I believe you may be my cousin. I have had menieres disease since 20 am now 66. I am having a fairly bad time right now. If we are related, it may be a family issue.

  • William

    I too have been going to get NUCCA chiropractic, to treat my meniere’s, and since going through the treatment, I have gotten much better, almost cured.

    • Tonia

      how does chiropractics help this? My stepfather swears it helps sinus issues etc. Will they see you for meniere’s? I would be willing to try anything to feel better.. this has really changed me and my life.. Thanks , Tonia

      • http://www.23x.net Jared Earle

        Don’t assume chiropractors can help. The best cure is to wait it out. It could take 3-4 years though. I too got cured, but not through quackery. If I’d gone to a chiropractor, I’d have been cured in the same timeframe, but I’d have less money.

        Beware quacks peddling cures. You know what they call alternative medicine that works? Medicine.

  • tasha

    Im 24 and have had MD for nearly 3years now i have 2 gorgeous children and am only allowed to work 10 hours a week due to my MD..I struggle to drive,cook, socialise etc and feel that the older i get the worse its getting :(
    I do use some low salt ideas and try focusing methods etc but nothing seems to be woring lately, my doctor has put me on yet another new med to calm the fits but i also have bipolar so its anti physcotic aswell..anyways wanting to ask SERC users Does it Work , many side effects ? and how often are your fits and how long do they last ?? SERC usres please

    • http://www.23x.net Jared Earle

      I no longer suffer from Meniere’s Disease. Serc (Betahistine) worked well for me though, reducing my attacks. Side effects are minimal if anything. I’m no doctor, though.

  • http://www.the-ear-forum.com/tinnitus-forum-treatment http://the-ear-forum.com/tinnitus-forum-treatment

    I’ve got tinnitus and it has been really upsetting me recently, I’m an insomniac, I’m irritable and keep getting angry with my wife. I found a online group which has a couple of good ideas which helped.