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Menieres Syndrome
Seems like some interested were here and took next train out. Troublesome problem. Syndrome. 50 plus years with it and Docs just kick can down the road.
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Yes I know it well! I’m too fatigued to even talk about it. 61 and have it since 27! Slowly took hearing in my right ear and left ear isn’t great, speech recognition poor, lousy pulsatile tinnitus. Serc worked for a few years then stopped. Now just taking acetazolamide 250mg 2x/daily, cymbalta 60mg daily and klonopin 0.5mg 2x/day when needed to stop vertigo and decrease noise in head. Neurologist wants to do cochlear implant in right ear I don’t want it. Hearing AIDS don’t help I’ve tried all the best blue tooth, tinnitus decreasing hearing aides, nothing helps makes all extraneous noise loud and tinny. Doc also said stem cells a long way off!
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1 Reaction2 Years ago, I inquired about this disease but no one replied. I have had it for 3 years now and was as disappointed as you by the medical attitude to it.
Realizing that there were quite a few people in the area where I live that had it and felt lonely and abandoned, I launched a support group. More than 15 people replied and we have been meeting once a month in person now for 2 years.
It has been very helpful to a lot of us because we tried to have a positive attitude and looked for ways of improving our lives.
Everyone is treated differently medically, so we have learned a lot about what works and doesn’t.
I suggest you try to locate either an existing support group or launch one. Good luck !
If you need help, you may contact me.
I too have been struggling with Menieres. When and where does your support group meet?” I live in Saint Augustine. Thank you, Peggy Lowe