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Barry

Posted , 11 users are following.

barry_33388
barry_33388

I’ve had MD for about 10 years now I am new on here,after reading lots of comments on here it’s a great relief that I’m not on my own. People on the outside don’t seem to understand what us sufferers go through.ive lost about 80% of my hearing  in my right ear and suffer vertigo like most of you on here,but after reading various comments on “floating “ I’m so relieved I’m not on my own, I literally thought I was going insane,I cannot go into a restaurant or bar without being confused also in shops or stores,my family and friends don’t understand because it’s not visible and they think I moan a lot and don’t understand why I don’t participate in many events or gatherings in which I’m not very confident anymore,I’ve been on betahistine for about a year and the attack’s still happen but milder but the worst thing is the floating which I gladly understand now thanks to this forum. 

1 like, 24 replies

24 Replies

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  • christine_35821
    christine_35821 barry_33388

    Posted

    Right now I’m floaty!  I didn’t take my lunchtime betahistine pills as I’ve been good lately but obviously I need to carry on with it. My hearing has been distorted today so I should have known I would have another attack. They are no longer severe now so maybe I am in the 2nd stage. I’m gathering information and will try and get a referral to someone who knows enough about Meniere’s to advise me. I understand what you mean about not enjoying social activities. Nodding and smiling gets a bit old. 
  • SoCal.T
    SoCal.T barry_33388

    Posted

    Support is definitely here!  I am 40 and was diagnosed April of last year & put on a diuretic.  I haven’t had a vertigo episode in over a year!  I still experience floating and mild dizziness/nausea some days but I think I have more good days than bad which I’ll take!  I hope you find some relief!

  • NeddyO
    NeddyO barry_33388

    Posted

    48mg 3x per day and I have been on a higher dose than that.
  • diane04068
    diane04068 barry_33388

    Posted

    Hi Barry. You are not alone. I have lost 80% of my right ears hearing also. I now have drop attacks and just fall over with no warning signs. Been trying to control it with Betahistine and other drugs to no avail.

     

  • NeddyO
    NeddyO barry_33388

    Posted

    Cut and paste this into google - Herr Prof. Dr. med. Michael Strupp - and you should find him. There is also a video interview in english on You tube done around 2011. I have not copied hyperlinks because that results in the moderators blocking replies. Research studies often produce conflicting results and you may find one co-authored by Strupp that concludes that 32mg tds is little better than placebo. But my consultant told me that as a result of animal studies done by Strupp he has patients on massively high doses at his clinic in Munich. I have been told that I may go higher than 62 mg tds if necessary. At present I am in my second remission, free of nausea and vertigo etc and taking no medication so stay positive - 70% of patients recover.

     

    • barry_33388
      barry_33388 NeddyO

      Posted

      Thank you Ned,I’ve just come out of a cluster of attack’s,hence my silence for the past few days. 
  • louise98846
    louise98846 barry_33388

    Posted

    Hi, I think one of the worst parts of having MD is just like you said, that people don't understand!  Plus, they tell us what to do to get better!!  I think most of us, who have had MD for many years, already know what to do and what not to. I feel your frustration.  I have the same issues with crowds and noise in general.  Sometimes the feeling I get is so severe that I just have to get away from it immediately.  I had an episode going down  an escalator once, at the mall, so I avoid them and take the elevator when there is one.  Day to day, I never know how I will feel.  I have severe hearing loss in my right ear. A few months ago, I got BICROS hearing aids.  I wear 2, one on each ear.  The Audiologist recommended this type for me, since my left ear has relatively good hearing, still, and I hope this continues to be the case.   Hearing loss can profoundly impact your social life, as you already know.  This can be detrimental to our social connections.  I'm still getting used to hearings aids and it does take awhile, quite a few months.  It was difficult hearing all those sounds!  And the brain fog seemed to overwhelm at times.  But it is much better now but not perfect.  At least I can hear better.  I decided to take up Tai Chi recently and I feel this is a good thing for me.  Helps with balance and confidence.  My ENT says that when balance improves Everything else improves.  There's hope for us sufferers!  Someone should make a booklet for family and friends so they have some idea of the struggles we face on a daily basis.  It's an invisible illness.  People will say "well you look good".  I'm on high dose Betahistine, 96 mg daily and this has helped me a lot.  No attacks since starting this dose.  Was previously on 48 mg daily.  Hope you feel better real soon and know that you will!!  Take care of yourself!

    • barry_33388
      barry_33388 louise98846

      Posted

      Thank you Louise for your reply, I had my first attack about 15 years ago which was quite violent and I thought it was a virus or an illness,then another 5 years later in which I had to hide it from my work,but it’s only been the last 3 years that I’ve been suffering quite badly with agitation and depression headaches,I try to avoid social events in particular restaurants and cinema and theatre due to the distortion that us sufferers have to deal with,my partner is more understanding now due to this forum and she can see that comments like yours and others what we go through, I have a appointment with my specialist next week and I will ask him if he can change my dosage from 48 to 96 and hopefully it will help,thank you very much for your help. 
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