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Has anyone tried Betahistine

Posted , 11 users are following.

maria77273
maria77273

MD often is discussed as fluid retention in middle ear. My daughter is a medical scientist in London and did a lot of research for me when diagnosed 1 year ago. She suggested Betahistine. No side effects at all. 90% of MD patients in U.K. are taking it. I have been on them for six months or so feeling not so full in ear but it may be a placebo effect. Suppose to help with the fluid buildup in middle ear which in turn causes the fullness to start to MD episode. Interested to hear of anyone else knowing about this med. 

0 likes, 34 replies

34 Replies

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  • Lizzie1453
    Lizzie1453 maria77273

    Posted

    Hi Maria, yes I would be lost without my Betahistine which I take 16mg x 3. It definitely stops the build up of pressure in my ear & was the first thing my GP prescribed although it was 8mg since upped to 16mg by my ENT consultant. 

    • maria77273
      maria77273 Lizzie1453

      Posted

      Hi Lizzie so happy to hear so many positive comments on Betahistine. Placebo or not as long as it works hey.  So expensive here in Australia. Just wish the PBS here would recognise it as helping Menieres and reduce the price. 
  • NeddyO
    NeddyO maria77273

    Posted

    You do not say what dose of betahistine you are taking - if the max advised in the BNF (16 mg tds and widely thought to be little better than placebo) that may help with tinnitus and hearing loss but unlikely to be enough to stop attacks completely. On consultant advise I have taken up to 64mg tds which stopped attacks completely. I am currently in remission apart from background tinnitus and some hearing damage.
    • maria77273
      maria77273 NeddyO

      Posted

      Hi Neddy I am on 16m x 3 a day. I seem to be doing ok on this dose haven't had an attack now for 2 months but still have the tinnitus and occasional fullness. 

    • Lizzie1453
      Lizzie1453 maria77273

      Posted

      Hi Maria,

      My tinnitus varies but usually background noise, only once had a ringing noise. I do realise as we all have too that I will never get back to "normal" but am happy if I can maintain the status I have. I know there will be blips and days when I feel horrible but if I can carry on and be happy with my family I am grateful. 

    • NeddyO
      NeddyO maria77273

      Posted

      Fingers crossed that is enough! Stay on the dose that works for at least 5 months without any attacks before gradually weaning off. You may then get a long remission period but if symptoms start to come back go straight back on your max effective dose for another 5 months and increase it if necessary. This was my experience and although I am in remission currently I have managed to stock pile some betahistine so that I can restart at the first sign of trouble without having to wait for a GP appointment.

      Good luck.

  • lto
    lto maria77273

    Posted

    I've been on Betahistine for about 6 months. I recently had a really bad attack and swapped tablets due to this. It's been a very difficult 2 weeks, so right back on the serc I go! I don't think it's a placebo effect, I think it keeps as much as it can at bay. I had my worst ear fullness this week when I stopped taking it, so it definitely helps.

    • Bluesmann
      Bluesmann maria77273

      Posted

      I agree as well and not sure where the placebo idea came form but who cares if it is water inside the pill if it makes us all feel better.  so many of us get results form the betahistine..
  • terrynz
    terrynz maria77273

    Posted

    Maria,

    I had vertigo attacks Feb till April 2015 along with tinnitus, fullness and hearing loss in my right ear. Eventually was able to get back to work. I was started on betahistine and got up to 48mg x 3times a day. Increased dosage by 16mg(1 pill) per week until had no vertigo or dizzy spells. Reduced sodium intake to about 1000mg per day, started running. I still do 10 k runs. Try to find one

  • terrynz
    terrynz maria77273

    Posted

    Still doing 10k runs every 8-10 wks as read it helps with balance as well as fitness. Came off betahistine mid 2017 when I was brave enough. Reduced dosage each week. Vertigo can disappear for a while so wanted to check if still needed betahistine. Have gone back to usual sodium diet although less than before menieres. Advantage with eventually coming off BH is if vertigo comes back I have something to go back onto.
    • maria77273
      maria77273 terrynz

      Posted

      Hope it remains good for you terrynz. You are indeed one of the lucky ones if you have only had M attacks for a short time. 
  • claire78808
    claire78808 maria77273

    Posted

    I have been on these 3-4 times a day plus 2 Dithiazide (diuretic).....I went to a new ENT last week who said recent studies in Germany have proven that this amount of betahistine is in effective as the liver blocks it from getting to the ear, he said you would need to take NINE times as much! So he has put me on a drug called Eldepryl which is suppposed to stop the liver from blocking the betahistine......I just started yesterday, but he said it takes a few months to kick in.....I’m hoping it works as the Betahistine and dithiazide don’t always help sad
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