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
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.”
Trackbacks & Pingbacks
- Jimbly’s Blog » Ear problems Part 1
Sun, 19 Apr 2009 15:46:18 +0000
Thu, 09 Apr 2009 17:46:08 +0000
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.
Tue, 14 Apr 2009 23:20:20 +0000
Nobody’s heard of it cos they’re all deaf.
Bad joke, but too obvious to not post it – sorry.
Wed, 15 Apr 2009 06:09:04 +0000
@Spadge
Dude, just no.
Thu, 21 May 2009 17:28:48 +0000
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
Mon, 25 May 2009 01:16:21 +0000
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!
Fri, 29 May 2009 10:33:10 +0000
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.
Wed, 22 Jul 2009 19:59:58 +0000
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.
Wed, 22 Jul 2009 20:02:29 +0000
I’ve never been in a car crash or suffered a blow to the head. I can’t speak for anyone else though.
Fri, 25 Sep 2009 20:30:47 +0000
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.
Fri, 25 Sep 2009 20:38:21 +0000
Rob, trauma to the head and neck is quite a different paraphysiology.
Fri, 27 Nov 2009 16:45:36 +0000
Regarding car accidents, take a look at http://www.mylifeandmenieresdisease.com – David, the chap who writes it, puts his meniere’s down to one.
Sat, 28 Nov 2009 04:18:03 +0000
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
Wed, 02 Dec 2009 00:20:37 +0000
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!