Meniere’s doesn’t get a lot of publicity probably because of the rarity of the disease and the fact that there isn’t any cure for it. Another reason might be that there aren’t many celebrities that have it. You wouldn’t think that would matter much but it does. There are some celebrities that are dealing with it, the singer and actress Kristin Chenoweth has talked about her bouts with meniere’s on talk shows and that is certainly good. I also know of the singer Ryan Adams that has Meniere’s disease.
Ryan Adams had quite a time with it a few years ago, in an interview with quietus magazine he spoke about how he almost gave up his music because of it. This spurred him on to change things in his life
“I dealt with it in a lot of extreme ways. You change your diet, you exercise, take supplements, acupuncture, acupressure, hypnotherapy, you do what you can”
I am glad to see that changes in his life have helped him to deal with this disorder. I hope that things continue to be that way although we all know that meniere’s has a way of resurfacing just when you think that you are over it.
I’m glad that he is talking about Meniere’s disease hopefully that will help get the word out about this horrible disorder.
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7 comments:
ola
i heard phil collins had it, also most famous one was van gough who cut off his ear, not suprised:)
whats people stories with eating nuts. i really believe if you can take control of the aural fullness, you are half way into beating menieres.
love to all my buddies around the world
ali
I've heard that William Shatner has very bad tinnitus, although maybe not Meniere's Disease. And I could be wrong, but I thought I heard that the actress who plays the deaf girl in "Switched at Birth" also had Meniere's.
Any celebrities who have it should turn a spotlight in that direction to help everyone understand it better and maybe boost efforts to do more research. But I guess I could understand if they want to push it down and just get on with their lives and careers as if things were normal. It would sure help the rest of us if they talked it up.
Ali, I'm pretty sure the Van Gogh connection is debunked... even Wikipedia says it's far-fetched, and the only symptom he had that sounds like Meniere's was stomach problems.
It would be very difficult to be a musician with MD. I sing in a choir, and the extra echo in my bad ear makes it incredibly difficult to hear accurately. I wonder how much longer I'll be able to participate without my sense of pitch going south.
Hi Peggy,
I can imagine that singing would be a challenge with menieres. Hopefully your hearing wouldn't get so bad that you can't sing anymore.
David
Thanks, David, I dread the day when I've lost so much hearing that I lose music, the sound of birds and my cats purring. I hope that's a long way off.
For now, I sit at the far end of the soprano section with my bad ear facing away from the group to cut down on the reverberations, and at times I find it helps to put my finger in my good ear so I can hear my own voice better, internally. It probably looks strange, but it seems to work. ;-)
David,
It has been interesting reading your blogs - I am a 21yr old World level Roller Figure Skater and suffering from intermittent attacks - although it is much easier to control now I know what condition I have! Originally I was diagnosed with just severe migraines, I was having attacks once or twice a day and lost my job because my boss thought I was faking sick.. it wasnt till a year later that we finally got a correct diagnosis and I now take buccastem (5mg) as soon as I start to feel woozy - but mostly I get drop attacks. I have been known to fall over and walk into shelves in supermarkets, which I try to see the funny side of, as it's really the only thing I can do.
Being a national representative in a sport that requires a lot of spinning and jumping has been terrifying with Menieres disease. Not only is the thought of having a drop attack while skating a very scary one, its very dangerous. It's also been very hard to compete (especially at the world championships) as the stress of competition of course triggers a convenient attack - and then I am often incapacitated for a whole day, and even when I start to feel better I am not at 100% for competition. It's hard and I struggle, but I love my sport - and it keeps me fit which helps. Quitting caffeine was a massive help also, I have had far fewer attacks since I stopped drinking coke!
My hearing has been a problem for me and worries me quite a bit - I had a constant shrieking in one ear for about a year when I was 17, and it constantly felt like there was a finger stuck in my ear - since then my hearing has virtually disappeared in my left ear, which occasionally makes general conversation a little difficult. Anything I hear in that ear is muffled and feels like I am wearing ear plugs - but I make do :)
It's great to read your blogs and see how everyone else manages their conditions, so thank you everybody :)
Laura M
New Zealand
Hi Laura,
I can't imagine how tough it is to have vestibular problems and try to skate at the same time! Although it probably helps you out especially your balance.
Quitting caffeine is a good idea, I still drink a little tea that has caffeine it and that is about it. But it is difficult to go off of it.
Hearing or lack of it is a big problem with meniere's sufferers and when you add tinnitus it can really be hard to deal with.
Thanks for the comment and please let us know how you are doing
David
I'm 24 and was diagnosed with Meniere's last year after sudden frequent bouts of debilitating vertigo (no previous history of vertigo or ear problems). My otologist had me take diuretics and did intra-tympanic steroid injections, none of which worked (the injections actually made the vertigo more frequent). My doctor then wanted to perform a surgery, which I held off on. Finally, I decided to see a neurologist who recommended I quit caffeine completely before he was going to put me on migraine medication. I was only drinking one cup of coffee per day, but I quit cold turkey. Within 2 weeks, my vertigo was gone completely. Within 5-6 weeks, the pressure and ringing disappeared. I'm virtually symptom-less after completely cutting out caffeine, something my otologist (a supposed renowned Meniere's expert in DC) never recommended. I never had to take the migraine medication, and I quit taking the diuretics. My advice to anyone reading this page who is suffering from Meniere's is to at least try quitting caffeine entirely for at least a few weeks before doing anything invasive like the steroid injections or, worse, surgery.
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