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Meniere's Solution - Hope this Helps Others

Posted , 10 users are following.

greg333
greg333

I've had meneires for almost 5 years. This past year it got so bad I was having episodes of getting so sick I was over the toilet for at least an hour and then I was knocked out for the entire day. I originally thought these were due to stress as I am a senior executive for a global organization and it seemed that the dizzy episodes happened when I was under a lot of stress. My doctor put me on a diuretic, I cut my salt intake and eliminated caffeine. They also prescribed valium that they said I should take when I started feeling a a dizzy spell coming on. This only worked occasionally and I did not like taking valium. That said, I became more disciplined with my fitness regime,  I began watching my diet and nutrition and I started meditating. While this approach helps me become healthier and more mindful, it did not seem to help the dizzy spells caused by menieres. Recently I was doing research and found that Betahistine was another drug that is used for treating menierers. I asked my doctor about this and she said she would give me a prescription. I am in the US and for some reason, betahistine is not favoured by the FDA and thus is hard to get in the US. I actually had to get my Rx filled a small pharmacy that mixes their own drugs. Let me tell you it was the best thing I ever did. I started taking a 28mg pill per day about 1 month ago and since I have not had one dizzy episode. Anyone who has not tried betahistine I encourage you to give it a try. It has been my life-saving drug, at least for now. I'm keeping my fingers crossed and hoping it will continue to deal with the symptom of menieres and vertigo. I will keep you all posted, but for the time being, I am praying that it continues to solve my problem. If anyone has had similar results with betahistine, I would love to hear. I know it may not work for everyone, but it did work for me and I wanted to share with all of you. Good luck.  

1 like, 25 replies

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  • gerard90471
    gerard90471 greg333

    Posted

    So good to hear your most favorable report about the effectiveness of betahistine.  

    I just started on a daily dosage of 48 mg (3 x 16) which a pharmacist had to formulate since I live in U. S.  and betahistine has not yet been approved by FDA. 

    I am also taking low dosage of Valium. So far I'm most encouraged. 

    • greg333
      greg333 gerard90471

      Posted

      Congratulations Gerard. I hope your success continues. I have stopped taking Valium altogether for now. The only reason I have read on why the FDA has not approved Betahistine in the US is that they have not confirmed it actually does anything.  Have you seen any negative research or information on betahistine as to why the FDA does not approve it? 
    • Willow4
      Willow4 greg333

      Posted

      What I have read is that it is just “proven” to help.  My case it didn’t, but I know it does help a lot of others.  It’s all the way we metabolize meds.  

      Willow 

    • Willow4
      Willow4

      Posted

      Not proven, sorry

  • Willow4
    Willow4 greg333

    Posted

    I did not have success with the Betahistine.  I’m in the US also and had to go through a compounding pharmacy.  I have tried 3-4 different times and up to the max dose.  I like you take Dyazide and Valium. I also take Promethazine at night to help with the morning nausea.  I also do a 1500mg sodium diet.  Stress definitely brings this on for me.  Also, I seen a Immunologist who feels my severe allergies also play a role.   This Disease is just hard to figure out. Think your doing great then bam it has you.  Good luck to you. 

    Willow 

    • greg333
      greg333 Willow4

      Posted

      I'm sorry betahistine does not work for you. Fortunately, I do not have any allergies which may help me.  Are you exercising regularly and ensuring a healthy diet? I'm confident these help me out as well.  Also,  meditating has helped me. I use the app CALM on my iPhone and also found out that my Amazon Echo provides meditation guidance. Hope things get better for you. 

    • Willow4
      Willow4 greg333

      Posted

      Yes meditation is a big part of my regimen along with exercise.  Lots of water and I eat no processed foods.   My husband says I have a such a strong desire to be normal I have no patience.  I’m always looking for a cure. I guess I won’t stop until I find one!  But, this last bout of surgery and the complications I’ve had from it, I’m scared I’m not going to anywhere near normal. 

      Willow 

    • maria63022
      maria63022 Willow4

      Posted

      I just started a compounded diurectic. I'm on day 5 and it has not made much difference so far. I am willing to try something new. I agree stress plays a big role for me experiencing worse episodes.I am convinced my onset of this disease started with a stressful situation I was going through.I am willing to try anything until find some relief. I'm willing to settle for some relief because I KNOW THIS WILL A LIFE LONG PROBLEM. I am a religious person so praying in addition to medication is my hope for relief.I agree this disease is difficult to pinpoint what might work for some might not work for me. God bless your efforts.

  • christina91807
    christina91807 greg333

    Posted

    Hi Greg,

    I’m taking betahistine 16x3 and it seems to have worked well to stop attacks now, as they’re very small when I get them. Unfortunately I’m still dizzy generally all the time so currently in bed all the time, but the attacks are definitely better. So glad this has worked for you! 

  • mary16977
    mary16977 greg333

    Posted

    So glad to hear of your success with betahistine!! That is fantastic. My very best wishes for continued good health! Happy New Year!
  • christine_35821
    christine_35821 greg333

    Posted

    Hi Greg. I’m in U.K. and betahistine is the main medication for Meniere’s here. I am on 16 3 times a day and so far it has made it possible to do normal things like sport shopping etc. My hearing isn’t great but I cope with hearing aids. I have only had Meniere’s for a year so I’m still figuring it out. I know my trigger and after the holiday I intend to make an appointment with a neuro-otologist for assessment/advice so my gp can follow it too. Also in U.K. we don’t seem to readily opt for surgical procedures although I hope to find out more about this when I have my assessment. Glad you are finding the betahistine helps and I’ll post after my appointment if I learn anything helpful. 
  • wendy81770
    wendy81770 greg333

    Posted

    I am 56 and had my first menieres episode when I was 14 years  old, they didn't know what it was,just suffered with tinnitus hearing loss vertigo very sick with it for about 3yrs,never took any tablets till I was in my 20 s it came back tried serc(betahistamin)no results,came off them then about 20years disappeared,but in the last 3years menieres is back I'm back on betahistamin which does nothing for me I take 16mg 3times a day for last 6 months !im now having attack once a month very dizzy sick have to go bed,I can't go on like this I will lose my job,reading now everything on Internet what treatment I can have to help.i see my consultant next week who because I'm not deaf can't under stand I should b totally deaf because I've had md for 40 years,but now I'm desperate for something to help because betahistamin does nothing for me,I'm hopeful he tries a diuretic tablet.menieres is a very frightening diesease very unpredictable ,very hard to manage as we don't look ill,either.i have had this all my life and still no answers ,it's nice to know im not the only one looking for answers.glad to hear of the successful treatment Of others.best wishes to all menieres sufferers.so good to hear you found medication that works for you.

     

    • tanney
      tanney wendy81770

      Posted

      Wendy, have you tried diuretics?  If not, please consider asking your doctor to put you on 50mg of Dyazide....this might be very helpful for you. Also, have you had intratympanic steroid injections to the ear?  If not, this is another path that you should consider.  Make sure that your ENT doctor is experienced with the injections.  Both of the above medications have helped many MD sufferers calm the vertigo and ear fullness.

      Also, for all of those MD folks that take Betahistine, be sure you do NOT take ORAL antihistamines for allergy or Rhinitis problems.  Oral antihistamines neutralize the effect of Betahistine.  Instead of oral take the nasal inhalant antihistamines which do NOT neutralize Betahistine because the medication stays only in the nasal area and does not circulate through the blood system as oral antihistamines do.  GOOD LUCK.

    • wendy81770
      wendy81770 tanney

      Posted

      Thank you so much for your advice I'm goin to see my consultant on weds jan10 and will certainly write down your advice,I'm sure they can do more than give me beta histamine,I'm willing to try anything,hoping to try the dire tics and if not the injections they must know a lot more now than they did 40yrs ago,the problem with menieres it flares up years in between.i had gone at least 10yrs with no symptoms,I'm certain in my case tiredness and stress is a trigger,I'm grateful we have these forums to see how others cope,it is not life threatening dies ease but a very complicated debilitating diesease to live with.best wishes and good luck to everyone living with menieres.????💐

    • christine_35821
      christine_35821 wendy81770

      Posted

      Hi Wendy. I’ve only had md for just over a year and betahistine has prevented vertigo attacks but not the ear pressure and tinnitus. I was on 16 x 3 like you. So I researched and found a neurotologist and booked an appointment myself as the ent doctor I saw on referral did not give me good advice or inspire confidence. This consultant/surgeon checked and photographed my eardrums and checked my balance. He has raised my level of betahistine to 24 x 3 and I go back in 3 months to evaluate. Fingers crossed this helps my hearing which is very distorted just now. I’ll post if there is any startling improvement. I was already down to 50% hearing both sides before md so preserving hearing is important to me. Hopefully your consultant will provide you with some solutions. Good luck. 
    • Willow4
      Willow4 wendy81770

      Posted

      Hi Wendy, 

      It is a scary thing!   I’ve been out of work since August and I to am afraid of losing my job.   Since I was diagnosed I’ve been on Dyazide 37.5/25 mg daily, also when I have severe vertigo attacks I use Valium.  At night I take Promethazine 25mg to help with the nausea in the morning.  I’ve had a Sac Decompression about 3-4 years ago with only 3% hearing loss.  I called the surgery a success.  Then this past summer I started having more and more attacks.  Discuss having the nerve cut but Dr refused due to me having no hearing issue in my good ear.  So a second Sac Decompression was done 11/30.  I had a CSF complication and a 3rd surgery 12/8.  Needless to say I’m not recovered yet and was told I have Arachnoiditis now. WTH is that?  Well. Anyways I believe in the a Dyazide and Valium really helps with the severe attacks.    I do have a lot of ear fullness, fluctuating hearing, headaches, vertigo and balance issues.  My last attack I lost an additional 30% of my hearing. So since being diagnosed I have lost over 40% of my hearing.  I really curious what it’s going to be at after these  surgeries.  I wish you the best of luck.

      Willow

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