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Meniers

Posted , 11 users are following.

avril71448
avril71448

I have been diagnosed with meniers and have been given bethahistine dihydrocloride has any one tried it please as im a fraid to take it as the pharmise told me it would cause me to be dizzie if im not having an attack.so i have carried on with cinnazine.

0 likes, 26 replies

26 Replies

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  • june52650
    june52650 avril71448

    Posted

    Yes I take it and I think a great deal of other people on here do too.  When not having an attack it certainly doesn’t make me dizzy, and I think it helps in keeping attacks down. I wonder why the pharmacist told you that? It is one of the accepted treatments for Menieres.
    • avril71448
      avril71448 june52650

      Posted

      Thank you so much ,i will start the meds tomorrow,i am just coming out of a dizzy spell and have been taking cinnizine which does help with the sickness and dizzieness,i was so worried about starting another attack with the bethahistine.after talking to the pharmacist,
  • Jessiedog
    Jessiedog avril71448

    Posted

    Please take bethahistine it has been the only medication to work for me has kept the attacks at bay even if I have an occasional dizzy feeling much rather this than a full blown attack
    • avril71448
      avril71448 Jessiedog

      Posted

      thank you so much,i will start tomorrow im just coming out of two days of dizziness no sickness this time as i got the cinnazine in me fast enough but will start on the bethahistine now,thank you 
  • tanney
    tanney avril71448

    Posted

    what dose of Betahistine were you prescribed?  Ask pharmacist why he/she told you that you would be dizzy taking this med....curious to know.  Betahistine takes about 3-4 weeks to "kick in" so be patient.  After that time if you still have vertigo problems request prescribing doctor to increase dosage.

    What other recommendations/meds did your doctor suggest as ways to manage MD?  Diuretics such as dyazide?  Salt elimination?  Anti anxiety med such as lorazapan which helps to calm your inner ear?  You should probably be on all of these.

    • avril71448
      avril71448 tanney

      Posted

      The doctor told me to cut down on salt and yes i take a water pill as well but the water pill is for my blood preasure taken with lisinapril but not for meniers.ive been having realy bad attacks with sickness lasting two or three days for two years but only in the last few months have i had help other than cinnazine which was helping if i caught it quick.i will ask another pharmicist see what they saybut i have the conferdance to take it after talking on here.
  • Lizzie1453
    Lizzie1453 avril71448

    Posted

    Hi Avril,  I don't understand why your pharmacist advised that. My GP put me on 8mg Betahistine three times a day and when I saw my ENT consultant he upped the dose to 16mg x 3. It takes a few weeks to kick in properly and I try to take it at set times. I take one tablet while getting out of bed & a paracetamol as well, one at 11.45 and one plus a paracetamol at 4.45. I try to make sure I drink enough, reduce my salt intake, hardly ever have alcohol but refuse to do without my two coffees a day!  I am dieting at the moment and feel better as I lose the weight. I am in the UK so have never been advised to take diuretics, I take 10mg of Amitriptyline to deal with nerve pain in my head at bedtime which was prescribed by my GP.  Good luck with the Betahistine it certainly works for me. 

    • avril71448
      avril71448 Lizzie1453

      Posted

      Thank you lizzie.i am also in the uk.i was told to take.betahistine twice a day 16mg but ive been to nervouse to take it as i was afraid it would cause me to be dizzy.i have been taking cinnazine which helps if i take it quick as the dizzy starts.this forum is great i have the comferdance to take it now.my doctor just kept telling me there was nothing they could do until i asked to be refered to ENT which was a few months a go now but suffered for two years.
  • christine_35821
    christine_35821 avril71448

    Posted

    Hi Avril

    i was diagnosed in July although my gp initially said labyrinthitis. I was prescribed betahistine 16mg x 3 and found that if I took it daily it controlled the vertigo. My ent doctor who diagnosed Meniere’s said take it when I feel an attack coming on but I found that did work as it takes a day or two to get in your system. You will have to experiment and see what works for you and learn to recognise your triggers. From what I’ve learnt from these support groups betahistine helps most people but not all. It has no side effects and is not addictive so follow the advice from your doctor. Good luck. 

  • christine_35821
    christine_35821 avril71448

    Posted

    Sorry Avril the stupid predictive text changed my message. I meant it didn’t help to take betahistine when I felt an attack coming on. Taking it daily works best for me. 
    • avril71448
      avril71448 christine_35821

      Posted

      Do you still get bad dizzy times and the awful sickness or does it ease all that for you please
  • mickaneye
    mickaneye avril71448

    Posted

    I was taking both of those, but as far as I know cinarazine is for nausea which I was told to stop if I could, am now taking 24 mg betahistine three times a day with no problems I wouldn't say it had completely cured the problem but I am a lot better. There isn't any cure for it you just have to take it as part of life's rich pattern ad learn to live with it. Just hang in there

  • NeddyO
    NeddyO avril71448

    Posted

    Most of the advice you have already received is correct. Betahistine is a very safe drug remarkably free of side effects. It takes 3 to 4 weeks to become fully effective and the dose should be adjusted upwards until you have full control over vertigo / dizziness and do not need anti-nausea meds like cinnerazine. In my case I went as high as 64mg tds. If you remain free of attacks for 6 months you then gradually reduce the dose and hopefully will be in remission. If you get the warning signs of symptoms returning (ear fullness, hearing loss, unstable tinnitus and mini dizzy episodes) go straight back to your previous highest dose (and go higher if need be) to regain control.

    Have you had proper differential diagnosis from an ENT / Aural physiology  consultation which should include an MRI scan to eliminate other possibilites?

    So far as possible only take what you have to take (for BP etc) and keep things simple. There is no point taking cinnerazine ( or other anti nausea drugs) when you do not need it - it will just make you drowsy and listless.

    Good luck.

    • avril71448
      avril71448 NeddyO

      Posted

      Thank you the more i read the more confident im becoming,yes had an mri all is fine,lost some hearing in one ear and have tinnitis in one ear,im going to start the meds tomorrow 

      thank you

       

    • christine_35821
      christine_35821 NeddyO

      Posted

      I no longer have vertigo and was free of all symptoms for a few weeks. Now this week I have been having days of distorted hearing and loud tinnitus. I have been off betahistine since the vertigo stopped. Should I start taking it again? Does it help control the hearing distortion and tinnitus?  Apart from these annoying symptoms I feel fit and normal. Should I pursue further medical advice?
    • NeddyO
      NeddyO christine_35821

      Posted

      Yes get back on the betahistine  asap at your highest previous dose - remember it will take approx a month to become fully effective. With luck it will reduce your tinnitus and may reverse some of your hearing loss. You may find you need to go to a higher dose than previously to regain complete remission. In my case I went as high as 64mg tds. If you remain free of attacks for 6 months you then gradually reduce the dose and hopefully will be in remission.

      If you have not had an ENT review recently I would request one.

    • christine_35821
      christine_35821 NeddyO

      Posted

      Thanks for the reassuring advice. I started 16mg as before and today has been a good day. Already my hearing has returned to my normal. I was 50% down on both sides before Meniere’s so I’m keen to do what I can to avoid further loss. The tinnitus has also returned to previous low levels. Are you in UK? My ent guy was unhelpful and my examination cursory so I will be researching for Meniere’s specialists. 
    • NeddyO
      NeddyO christine_35821

      Posted

      Yes in UK.

      Auralphysiologists are thin on the ground unfortunately and mine has just retired. I have not met his successor as currently no need. You will probably have to travel to London where I am told there are about 6 who treat adults.

    • christine_35821
      christine_35821 NeddyO

      Posted

      Having restarted betahistine at my previous dose - 16 x 3 I thought I was doing ok till the weekend when I had attacks on Saturday and Sunday lasting most of the day and vomiting for 7 hours. I had hearing distortion and tinnitus all week so I should have known what might happen. I guess the medication has taken effect now as I’m back to normal today apart from feeling exhausted. When you refer to remission do you mean you are on no medication?  How do you know you are in remission if you don’t stop taking it?  That’s what I did and won’t be doing it again. unfortunately my gp only prescribes 2 weeks at a time so I’m forever at the pharmacy with no room for manoeuvre if I need to take more. I have located a neuro-otologist in Cambridge who specialises in Meniere’s and other vestibular disorders but I would have to go privately. I was thinking that if I did this it would give my gp some guidance on my future treatment. Sorry about the long ramble but you seem very knowledgeable and positive on the subject. 
    • NeddyO
      NeddyO christine_35821

      Posted

      My 'regime' is to be free of symptoms for 5 to 6 months then start reducing the dose a month at a time until I reach 16mg tds then stop. There is no certain way to know when remission starts so I count it from the last episode. Fortunately for me my Consultant has told my GP practice that I may need to go to high doses so I can order online repeats. I have been able to build a small back up stock so that I can restart as soon as the warning sings appear. Incidentally 16 mg tds is widely regarded as little better than placebo - its the much higher doses that do the trick.

      Perhaps you need a different GP?

    • june52650
      june52650 christine_35821

      Posted

      I was in remission for five years and completely stopped the medication. The attacks started again in June. As you said, I won’t be stopping it again in a hurry. 

      I think if you can afford to see someone who actually knows about Ménière’s disease then go for it. The problem with most GPS and ent doctors is that they don’t necessarily know much more about it than we do.

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