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Posted , 8 users are following.

janice68460
janice68460

Considering the number of people affected and living with MD, is there any research going on into this horrible disease?

We are told that there is no cure for it.

1 like, 19 replies

19 Replies

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  • john02577
    john02577 janice68460

    Posted

    Hi Janice I have found that all the doctors and consultants I have regarding my MD know a bit about the disease but don't really understand it in my opinion I think it's the nature in which it first manifest itself an attack occurs for the first ttime and then 3 month's later you get another attack and this can go on for some years before it gets more serious it just seems to get very little attention Regards John

    • janice68460
      janice68460 john02577

      Posted

      I quite agree! Every time I mention Menieres to any of the GP’s I see they look at me blankly as if they can’t understand what is wrong.

      I practically had to plead to be referred to the hospital and haven’t had much feedback from the GP’s at all!

  • tvbonnie
    tvbonnie janice68460

    Posted

    no cure and no real treatment! WHY are there no clinical studies? I live near NIH! Take me! I will be a guinea pig!
  • NeddyO
    NeddyO janice68460

    Posted

    Research has and is being done, most notably by Prof Michael Strupp in Munich (high dose betahistine), and there is also a new study starting across the USA seeking volunteers.

    It seems to me that the main reason so many general practitioners are ill informed is because the incidence is somewhere between one sufferer per 1000 to 2000 of the population so it crops up very rarely in their day to day consultations.

    I am firmly of the belief that if in addition to providing symptomatic treatment (Stemetil, Buccastem) when first consulted they also prescribed betahistine at a starting dose of 16mg tds that tinnitus and hearing damage would be limited and in some lucky cases reversed. Of course proper diagnosis via ENT, MRI scans etc should be undertaken but as damage is progressive with each severe attack the sooner betahistine is employed the better with the dose increased until full control is established for 5 to 6 months. Unusually it is one of the safest drugs around with minimal side effects and the only listed interaction (theoretical) is with antihistamines - but I take both with no problems.

    • janice68460
      janice68460 NeddyO

      Posted

      Good to know that research is being done but GP’s have been through medical school. Surely they should know more about MD.

      I had a”drop “ episode while hanging  washing on the clothes line and was rushed to A&E bleeding from a gash after hitting my head on the garden path.

      The Dr. I saw kept on asking if I had passed out, fainted. He couldn’t understand about sudden drops due to MD. had never come across it!

    • tvbonnie
      tvbonnie NeddyO

      Posted

      I am taking no drugs except for a diuretic. All I want is to salvage my hearing. Is it a proven fact those drugs help? I am not even sure those drugs are available in the US. I don't think betahistine is. (it would nice to get the tone and jet engine out of my ear, but that is secondary)

    • NeddyO
      NeddyO janice68460

      Posted

      Sadly that is the point - the condition is rare and a junior Dr in A & E still has much to learn. Remember the medical knowledge base has grown well beyond the capacity of most people to keep up, let alone fully comprehend - It is down to we with the problem to help them understand. Try to find a Consultant in Aural Physiology - they should be up to date.

    • tanney
      tanney tvbonnie

      Posted

      Bonnie, Betahistine is available in the US through any compounding pharmacy.  The branded betahistine (Serc) is unavailable in US.  Ask your ENT doctor for prescription and take it to any compounding pharmacy.  Ask for the script to be for 360 taken 3X/Day. I suggest 360 because most pharmacies have a price break at that quantity. Most doctors will start you out at a very low dose (4mg) just to be sure you do not have a reaction.  The maintenance dose is 16mg 3X/day.  Some folks need even more.  Cost in US for 360 16mg cost me $119.  If you need a name of a pharmacy I can give you the one I use in Pittsburgh, Pa.
    • NeddyO
      NeddyO tvbonnie

      Posted

      In the British National Formulary Serc (betahistine) indications are listed as for the treatment of 'vertigo, tinnitus and hearing loss associated with Meniere's'. I certainly got a reduction in tinnitus to background level and a small improvement to the hearing loss but annoyingly what works for some does not for others. It takes up to a month to work and the dose may need to be quite high to become fully effective.

      There are specialist pharmacies in the US that will supply betahistine if prescribed for you. It can also be obtained in Canada. If you trawl through other chats on this site you should find other US sufferers who have found suppliers.

      Good luck.

    • mark_93177
      mark_93177 NeddyO

      Posted

      Do you all stop taking serc when there are no symptoms? I haven't been told that I have MD but BPPV and the my symptoms are the same of MD. Only difference is that I have only have three episodes of vertigo. First one was 2007, 2015 and this year and my vertigo only lasts for less than 30 seconds but I feel off balance after and head movements makes it worst when I feel off balance. My hearing tests from 2015 and 2018 is all the same.

    • tvbonnie
      tvbonnie tanney

      Posted

      Thank you Tanney!

      One more question, is it primarily for the vertigo? My vertigo is not as bad as a lot of people on this site, my problem, tinnitus, jet roar, partial and total blockage, doesn't seem to have any relief meds that I have heard about. I am a bit stumbly, but not awful vertigo. I sure would LOVE to open up my ear again!

    • tanney
      tanney mark_93177

      Posted

      Mark, the good news is that your symptoms are not like meniere's disease.  I do not think betahistine will necessarily help you.  For patients with MD betahistine has had a good track record of controlling vertigo and some benefit to improving tinnitus and ear fullness.  MD patients most likely need to take betahistine as a maintenance drug for the rest of their life.  Some patients, though, have had success lowering the dose after a few years without setback

    • mark_93177
      mark_93177 tanney

      Posted

      Thank you Tanney, I forgot to mention that I do have tinnitus. but I also have sinusitis problem where one of nose is always block and feels like there is mucus trap in my throat.
    • NeddyO
      NeddyO mark_93177

      Posted

      Serc does not help with BPPV which is caused by chalky crystals escaping into your semicircular canals. They can be settled back to where they belong using the Epley manouevre. There are several good videos on YouTube showing you how to do this.
    • maria77273
      maria77273 NeddyO

      Posted

      Unfortunately I can only get a prescription for 16x3. Asked for higher dose     In Australia that is the highest they will give you. 
    • tanney
      tanney tvbonnie

      Posted

      Hi Bonnie.  Betahistine is mostly effective for controlling vertigo.  It does, though, help with ear fullness and tinnitus....especially at higher doses.  Betahistine usually takes a month to be effective so if you decide to start on this med be patient with it.  You may not feel improvement until the dose reaches 16mg or so.  GOOD LUCK!
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