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Menieres Disease.

(15 Posts)
ShowMeSaturn Fri 24-Jan-14 14:32:58

I'd never heard of it but although it seems to have moderate symptoms it is a progressively degenerating disease.

Does anyone have any experience of it?

Cleanthatroomnow Fri 24-Jan-14 14:42:08

Sadly, yes, I have it. Not nice, but there is hope as it tends to flare up and then go into remission for quite long periods. Everyone is different. I have had it badly at times but, cross fingers, all fine at the moment. I am under the care of an ENT consultant. I think it tends to be both over and under diagnosed, IYKWIM. Pm me if you like.

carrielou2007 Fri 24-Jan-14 22:37:50

It is not a 'disease' that's not the right term, it is a collection of symptoms with no known cause.

LadyofDunedin Fri 24-Jan-14 22:40:33

Another person with men

LadyofDunedin Fri 24-Jan-14 22:41:01

Sorry posted too soon! Another with Ménière's !

Liveinthepresent Fri 24-Jan-14 22:45:40

Will watch with interest - my MIL has this - it will have been diagnosed way before I knew her. I didn't know it was anything more than hearing related - she is struggling to hear in either ear.

ShowMeSaturn Fri 24-Jan-14 22:51:10

carrielou Yes, NHS considers it a disease. Because it's degenerative I suppose.

carrielou2007 Fri 24-Jan-14 22:54:25

It's not though and I say that as an audiologist wink

ShowMeSaturn Fri 24-Jan-14 23:00:16

Menieres Disease

MoreBeta Fri 24-Jan-14 23:03:39

My DW has had this condition for many years.

She used to fall over unexpectedly and smack her head on furniture, pavement. She just couldn't stop herself. She could never drive for this reason. Too dangerous as she could have a sudden attack and slump over into the passenger seat.

She took Gingko Biloba for a long time as she thought it helped blood flow and it did seem to get a bit better. She still has it and is worse when she is tired, at certain times of year (air pressure or humidity?) , if she eats certain things, has an upset stomach or is stressed. Gets a bit better if she has 1 glass of wine and worse with too much wine.

It is not something that is curable and she just lives with it. She cannot balance at all with her inner ears now and uses her eyes instead. If she walks into a dark place (e.g cinema) she has to hold on to me. Without her eyes she can't balance. It seems her brain has learned to balance with her eyes and replaced using the normal inner balance mechanisms.

There are alternative treatments involving manipulating the head around and to remove particles form the inner ear canals but not sure if it is effective.

Cleanthatroomnow Sat 25-Jan-14 08:02:03

Manipulating the head won't help Meniere's. That is used to treat benign positional vertigo which is different. OP, try to get an ENT referral. You will need an MRI to rule out other causes. I wouldn't say it's degenerative-- but it's progressive in that hearing, balance etc is damaged but then stabilises.

I've been helped by medication and having a grommet put in my ear.

DoItTooJulia Sat 25-Jan-14 09:35:11

Arguing over the semantics isn't supportive though, is it?

I have bouts of labyrinthitis that I worry are Menieres. The GP doesn't think so, they think it's straightforward labyrinthitis. How did everyone with it get diagnosed?

carrielou2007 Sat 25-Jan-14 09:38:44

Sorry OP didn't mean to make light if it as it's not a disease I know know distressing and debilitating the attacks can be. It's just it's drummed into you when you take your exams 'it's not a disease you'll get marked down if you call it that' and even though those exams were a long time ago I still have to do continued prof development and that has not changed grin

Cleanthatroomnow Sat 25-Jan-14 09:41:53

See above--an ENT specialist needs to rule out other causes. Usually means an MRI. I'm very supportive but words like degenerative are scary. It's a horrible condition but it's very variable between sufferers. There's usually hearing loss involved in Meniere's or at least tinnitus--noise in the ear like listening to a sea shell if that makes sense.

Nina10 Sun 14-Jun-15 19:57:58

Has anyone been treated with either a shunt operation or disabling some of the balance cells in the affected ear? If you have, please let me know your experience?

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