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It’s taking over my life

Posted , 10 users are following.

june52650
june52650

My symptoms have been awful for over a year now. I was finally diagnosed with Ménière’s in January this year but have had it since 2011, with five years in remission until last year. I take Betahistine and Cinnarazine three times a day plus Buccastem for attacks.

My problem is that I’m getting to the point where I hardly dare go out alone. So far I’ve cancelled a concert I was going to and I was supposed to be going to my daughters next week but I’ve cancelled that too. We’ve got a holiday in New York booked for the end of October and are seriously thinking of cancelling that because I’m scared of what might happen if I have an attack on the plane or in the city. I’m annoyed with myself but equally don’t know if I can risk going.

0 likes, 24 replies

24 Replies

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  • pat69697
    pat69697 june52650

    Posted

    Hi June I know exactly how you feel. I’m in the UK and getting appointments and follow up appointments is a nightmare. I saw a new ENT doctor in March who wanted to take me off the betahistine because she said it stops working after you have been on it years. I told her there was no way I was stopping taking it so she left me on it and sent me for rehabilitation exercises which helped a bit but I am still very off balance. My family are going on holiday in a few weeks but I am staying at home. Just couldn’t face an airport and plane journey. It’s very hard dealing with this terrible illness.
    • june52650
      june52650 pat69697

      Posted

      Hi Pat , it’s not easy getting appointments is it? Have you ever been referred to a balance clinic? I have a friend who has Labyrinthitis and her doctor told her there was no point in sending her to ent because they wouldn’t know any more than he did, so he referred her to a balance clinic in York.  Nothing like this has ever been suggested to me, nor the injection in the ear or grommets. Which makes you think that they have little idea about md.
    • pat69697
      pat69697 june52650

      Posted

      It was a balance clinic the ENT sent me to. Got the impression they didn’t know where to send me.Then I was given the exercises and then discharged. There was no mention of injections. The balance clinic said as I hadn’t had a really bad spinning episode for a while then the M.D. was burning itself out. I have daily vertigo and nausea. I felt a bit let down as though they ticked a box on the NHS and sent me back to the GP. Gosh it’s a hard battle to get anything done or even support. Is there a balance clinic at your local hospital you could ask for a referral to.
    • june52650
      june52650 pat69697

      Posted

      No the nearest one for me would be York which would mean over an hour by car, but it would be something to be seen by people who actually specialise in balance disorders, rather than ent who don’t.
  • pat69697
    pat69697 june52650

    Posted

    It might be worth going. I was referred to ENT by a neurologist who said there was fluid in my right ear. ENT never seemed interested. The balance clinics are run by physiotherapists trained in balance problems. I was initially really impressed but apart from the exercises I was given there was nothing else offered. I find with the NHS they set up clinics that can treat simple problems but not the more complex stuff like MD. give it a go. Anything is worth a try.

     

  • NeddyO
    NeddyO june52650

    Posted

    I have looked through some of the replies before contributing and Tanney is certainly on the right track.

    It seems that a common factor is the relatively low dose of betahistine many are taking. Also it needs at least a month to work.

    My consultant, having confirmed the diagnosis, and noting that I was not fully controlled tripled my dose from 16mg to 48 mg three times daily, and told me if I remained attack free for 6 months I should then wean myself off.  That strategy worked and I had a full remission period of 21 months.

    His advice was also that if the warning signs of MD returning occurred (Ear fullness, unstable tinnitus, dizzy spells) to not wait for a full blown attack but go straight back on the high dose and increase it further if necessary. The reasoning for this is that each major attack is very likely to cause further hearing loss which is not reversible.

    When I got the warning signs again I did as advised. The signs subsided over 2 or 3 days which was good but about 6 weeks later I had a sudden vertigo attack for a couple of minutes which left me feeling unsteady and unwell. I always carry buccastem and took one straight away – fortunately that worked OK. As a result I  increased my betahistine dosage to 64mg tds . The consultant confirmed that I was correct and advised I could go to even higher dose if needed to get full control. I was able to again wean off after 6 months and the current remission period is now 2 years. However I maintain a stock of betahistine so that I can react quickly if trouble recurs and always carry Buccastem, Stemetil and Stugeron

    This seems to be a very effective strategy.

    Suggest you ask your consultant to review your dosage. Good luck.

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