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My experience of Menieres

Posted , 6 users are following.

paul44839
paul44839

i am posting to share my experience of Ménière’s in the hope it is useful to others.

My first episode was two and a half years ago with sudden vertigo and nausea followed by rapid hearing loss and pounding tinnitus. I then experienced attacks every month and was given prochloroperazine to help. Hearing progressed to severe deafness in both ears and tinnitus was very loud. I was given pregablin for the tinnitus which did nothing.

Four months ago I experienced my first drop attack followed by three to four Ménière’s attacks per day. I was prescribed betahistine 16mg three times per day. I also stopped caffeine, alcohol and reduced salt and was given a diuretic.This did nothing and the betahistine was then doubled without effect.

A grommet was inserted in my right ear and I had weekly steroid injections for 4 weeks.The Ménière’s reduced to one episode per day.

After a further month the Ménière’s attacks stopped and I am now 3 weeks without incident. It is hard to be sure what has worked but it is clear that things take time, high dose betahistine for two months, and one month after steroids before anything was effective.

i hope this is of helpful to anyone suffering from this awful condition.

2 likes, 9 replies

9 Replies

  • christine_35821
    christine_35821 paul44839

    Posted

    You seem to have crammed a lifetime’s worth of symptoms into a couple of years Paul!  I can’t imagine how you have coped with all that and in both ears too. The thought of drop attacks terrifies me. Has all this affected your balance?  Mine is slightly off left side but I’ve learned to compensate. Fortunately betahistine has controlled my symptoms so far but MD is so unpredictable I’m enjoying normality while I can. I hope your new regime continues to work for you. 
    • paul44839
      paul44839 christine_35821

      Posted

      Hi Christine.

                  My balance is now generally poor but ok as long as I am not having the more serious Ménière’s attacks.

  • Lizzie1453
    Lizzie1453 paul44839

    Posted

    Hi Paul,

    I am on 16mg Betahistine & just under 2 years ago I had four steroid injections into my ear and it most definitely helped me. Today was the first day I felt a blip and it's because it's so bright & sunny so have to remember & take shades.

  • Bertman
    Bertman paul44839

    Posted

    Hello Paul, Thank you for sharing your story with the group. I feel that we can always benefit from other meniere's patients stories. I have had meniere's disease since 2008, symptoms started prior to that, my frist violent vertigo attack was in 2005 and attacks would come abruptly. Then as time passed the vertigo attacks were replaced with chronic dizziness and chronic loss of balance, The disease ended up bilateral and I am now in a wheelchair. Thank you for Sharing

     

     ø¤º°`°º¤ø-:¦:-•:*'""*:•.Bertman •:*'''''*:•-:¦:-ø¤º°`°º¤ø 

  • tanney
    tanney paul44839

    Posted

    Thanks for sharing your story, Paul.  It's great that you have stabilized your symptoms.  I've found personally and through stories on this forum that a combination of four things helps control MD symptoms best:

    1. diet control....no salt, no caffeine, no alcohol (limit salt intake to 1500 mg/day)

    2. diuretics to control fluid buildup in inner ear (I take 50mg dyazide each day)

    3. steroid injections....I've had two total in the last 14 months.  Some folks need more

    3. Betahistine....I take 16mg three times/day.  Some folks need more

    4. anxiety/panic attack reduction meds and psychological therapy with psychologist or psychiatrist.  I also always carry 0.5mg Ativan.  I usually take this when I sense an episode coming on or the tinnitus/ear

    fullness is increased.  Ativan seems to calm these symptoms down for me.

    I have bilateral MD and above protocol works well for me.  I did have gentamicin injection in left ear 40 years ago and just recently (18 months ago) developed MD in Right ear.  I have not had a vertigo attack in over a year and my tinnitus and ear fullness in Right ear is at a minimum.  I do have some balance issues and will be starting balance/vestibular rehab later this month.

    By the way, for those of us that want additional information on MD and other vestibular illnesses I recommend you visit VEDA which is a non profit vestibular association on line that I found very helpful.

     

    • paul44839
      paul44839 tanney

      Posted

      Thank you for your helpful and comprehensive post. It is valuable to know that someone else has had success with a similar treatment regime. I was told that if the steroid injections were not effective then the next stage was a gentamicin injection which I understand can damage hearing, thankfully not needed yet.
    • tanney
      tanney paul44839

      Posted

      Paul, regarding gentamicin (or streptomycin) injections, my experience is the following:

      1.  As stated above I had the injections into Left ear 40 years ago when the procedure was relatively new and few ENT did it.  Today it is a common procedure done by most ENT that have subspecialty in inner ear diseases.  If a Meniere's disease patient is seriously considering this option, MAKE SURE the ENT has good experience doing the procedure.  Inquire about the frequency the doctor has done it.  THIS IS IMPORTANT.

      2.  The procedure itself is rather benign....same as steroid injections.  It's done as outpatient and in ENT office.  When I had it done I needed to return a few days later for a second injection...not sure if that is needed today.

      3.  Gentamicin will destroy the balance nerve in affected ear.  It's this dysfunctional balance nerve that sends incorrect signals to the brain resulting in vertigo. Once the balance nerve is eliminated so is the vertigo.  For a week or so after the second procedure I was having some balance difficulty but that went away totally because the balance nerve in my good ear compensated.  From what I've read the vast majority of patients will have no balance problems within a couple weeks of the procedure.

      4.  Hearing loss:  I had NO additional hearing loss after the procedure and in fact over the years my hearing has actually IMPROVED in the affected ear!

      5.  The injection will NOT improve the tinnitus or the ear fullness.

      6.  Vertigo:  My vertigo completely went away after the injection....I have not had a vertigo attack from the Left ear in 40 years!  Amazing!  From what I've read and heard vertigo is eliminated in about 90-95% of the patients that undo the procedure when done properly.

      If anyone wants to talk with me about my experience with gentamicin I'd be happy to discuss with you on this forum or via private message.  The bottom line is do not fear gentamicin injections.  They are benign, they work and your life will almost certainly be better after the treatment.  GOOD LUCK.

       

    • paul44839
      paul44839 tanney

      Posted

      Tanney.....thank you for an informative and helpful post.
  • NeddyO
    NeddyO paul44839

    Posted

    Betahistine needs at least a month to take effect, needs to be at as high a dose as is necessary to stop the vertigo/nausea attacks completely and you need to stay on that dose for 5 to 6 months without problems before slowly weaning off.
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