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Betahistine Success Stories

Posted , 5 users are following.

rich
rich

Betahistine: the name comes up again and again in recommendations in the forum.

What are your experiences good and bad ? There seems to be a positive bias, but when you look at some of the evidence, I think even NICE conclude it is not wholly effective.

Why does the FDA not approve it?

Does it really reduce tinnitus and reverse deafness? Reverse...really?

I know what works for some may not work for others, that is a given I guess with almost any drug, but I am just trying to guage from the limited pool of sufferers in this group just how useful it might be.

Rich  ( NHS patient, SW UK, provisional menieres diagnosis )

 

0 likes, 12 replies

12 Replies

  • NeddyO
    NeddyO rich

    Posted

    As you are in the UK it is approved and following a lot of research in animal studies leading experts in the field concluded that to be effective much higher doses were needed than current recommendations to get sufficient levels of drug into the inner ear. Remember NICE is a government quango with a remit to save taxpayers money!

    It is unlikely your GP will prescribe high doses without Consultant back-up. The Standard starting dose is 16mg tds which is what I was given and it certainly helped reduce some of my tinnitus to tolerable background noise. It also reversed some of my low frequency hearing loss but my left ear is still about 35% down. At that dose it did not stop attacks however so when I eventually saw the right consultant he tripled and then quadrupled the dose. That did the trick. I am allowed to go even higher if necessary,

     

    • rich
      rich NeddyO

      Posted

      That's helpful. Thanks. Couple of questions if that's OK.

      How long did it take to gather 35% hearing loss for you. Do you know if that rate varies a lot between sufferers or is it a quantifiable "known".

      On Betahistine, are you able to take the other "starting" drugs like Cinnarizine and Prochlorperazine along with it. Although tinnitus is my major irritant ( ha, irritant, that doesn't go half way to describing what a ***** it is) when it is not at full blast the other components of the condition seem to flood in and take its place...I am not sure if that is just a psychological effect or a real one, but day to day if the dizzy sensation is bearable, the nausea and tinnitus take centre stage, if the tinnitus is full blast, the other two don't seem so troublesome. Does that chime with your exprience ( or anyone else who may be reading ) at all?

      Oh, and finally, how did you "get to see the right consultant".

      Cheers, Rich ( UK SW NHS provisional menieres diagnosis)

    • NeddyO
      NeddyO rich

      Posted

      Bulk of hearing loss occurred after or during my first ever attack which was severe & came out of the blue. My first thought was viral inner ear infection but as I have a medical background I quickly feared Meniere's and my GP thought so too. As NHS under so much pressure I opted to see ENT consultant privately and it was he who concurred almost certainly Meniere's, started me on betahistine, advised to only use Prochlorperazine if having an attack, and referred me on to the Aural physiology consultant (the right one) at the local NHS hospital.

      The time line was Onset to seeing ENT after first and several more attacks 8 weeks. ENT to NHS 17 weeks.

      Sufferers experiences are enormously variable as I am sure you realise if you have followed many 'threads' on this site. I would suggest healthy scepticism about most of the 'alternative' therapies people promote.

      So to answer your specific question you can take anti-nausea drugs whilst on betahistine but remember they are quite powerful sedatives and only reduce symptoms, not the underlying cause.

      Betahistine is regarded as a remarkably safe drug with minimal side effects. It may cause a bit of gastric irritation, especially at higher doses, but that can be managed with Gaviscon and / or the occassional proton pump inhibitor eg omeprazole.

      Finally 70% of sufferers get better some after months, but for some it takes years. Best of luck!

    • clifford64549
      clifford64549 rich

      Posted

      On the positive side - I developed an ear infection - went to ENT 16 times and Neurologist a couple of times. I had all kinds of medication including cortizone injections directly in my ear. I experienced vertigo and dizziness all the time, lost about 70% hearing in my right ear - saw audiologist many times. Tinnitus was terrible and at one stage I felt totally disabled, this lasted for 6 months.

      About 2 months ago it just disappeared, I have a little ringing in my ear (no problem). Most probably the best thing I have learnt is that if it keeps on for a prolonged period go and see a Neurologist and do a lot of massaging around your head (lots of advice on you tube). No one really understood what I was experiencing and you have to fight it as I believe it is mostly in the brain.

      Best regards, go well and know that you will recover to live a normal life - just never give up.

    • rich
      rich NeddyO

      Posted

      Thanks for your positive and helpful reponses to all my questions. It has been a big help. I am sceptical about all treatments to be honest, be they alternative or no: the literature is just so varied, the results so variable, you don;t know where to start. I take it you don't hold with potassium/magnesium supplementation and similar therapies. Some US hospitals go that way and the dietary route and don't touch Betahistine.

      First step is to find a consultant with experience that you can trust 100%. That's a whole new ball game.

      Rich ( UK NHS SW area)

    • NeddyO
      NeddyO rich

      Posted

      In that case try to get referred to Queen Alexandra Hospital, Portsmouth Where the Aural physiologist I see is based. Unfortunately he has dropped to part time recently and so far as I know does not see private patients but it is worth a try!
    • rich
      rich NeddyO

      Posted

      Started on Betahistine today. Only 8 three times a day but I expect that will be increased if tolerated.

      Doubt if I'd get a referral to be honest, but thanks for the idea.

      I have a relative with R Arthritis and the NHS treatment for that region by region is completely variable. Makes little sense. I think there is a register of good treatment for RA ( few years ago Durham, as far as I remember, topped the list). I have no idea if there is a Meniere equivalent.

      Thanks for everything NeddyO.

    • NeddyO
      NeddyO rich

      Posted

      Ask the Meniere's Disease Society if they have that sort of info.

  • Lizzie1453
    Lizzie1453 rich

    Posted

    I started on 8mg x 3 of Betahistine & my ENT consultant said to up it to 16mg x3 which is quite effective. I also had four steroid injections from him which made a great difference . I occasionally get dizzy spells if I am not careful, I watch salt intake, limit alcohol but love coffee and not willing to do without it..

    Avoid stress my ENT told me whether it's not eating regular or drinking enough water or holding on for the loo. I was worried about a jury service letter & he told me no way should I go as apart from being stressful I could fall asleep any time. So exempt from that.

  • Lizzie1453
    Lizzie1453 rich

    Posted

    Meant to say that I have only had real ringing in my ear once. I get a lot of dullness & had only 20% hearing in my bad ear anyway. Balance some days is a bit off & brain dulled quiet often and could sleep for Britain but I still have a fairly normal life so consider myself lucky .

    NHS Lothian. Scotland

    • rich
      rich Lizzie1453

      Posted

      Thanks. I have started a low salt diet, haven't touched coffee since Christmas, or tea, or chocolate. Could kill for a whisky!  I did Jury service: probably not the best idea.

       

  • tanney
    tanney rich

    Posted

    Hi Rich.  I am in the USA.  Even though betahistine is not approved by FDA it is available by prescription and can be filled at any compounding pharmacy.  Most insurance plans and Medicare do not cover so cost is full out of pocket.  For 90 days of 8mg 3X/day costs = $120 US$.  I started on 4 mg and then went to 8mg.  In my case my blood pressure dropped to 95/58 and I became quite lightheaded.  I stopped the betahistine and increased the diuretic from 50 to 75mg/day (doctor's advice).  The increased diuretic also lowered BP but not to the level of the betahistine.  Ear pressure and pulsatile tinnitus are less on the increased diuretic.

    Most people say they have no side effects from betahistine....but clearly I did with the lowered BP.

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