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Bilateral Ménière's

Posted , 5 users are following.

barry61472
barry61472

Hi gang,

Haven't posted in a while. I suffered from intractable MD on my right side since the early '90's, with all the associated symptoms. In 12/2016 I had a right side Labyrinthectomy which left me totally deaf in my right ear. However, all the symptoms disappeared for about nine months.

About six months ago my symptoms came back with a vengeance. Long story short, the consensus of all my treating Dr's is that the MD has migrated to my left side and is now a bilateral condition. My hearing in my left ear is down about 30% (just had my 2nd audiogram in 2 mos.)

I am doing vestibular physical therapy, havw had three steroid injections in my left ear, take meclizine and valium for the dizziness and vertigo and control my diet. Nothing helps. I am dizzy almost 24/7 with bouts of violent vertigo weekly.

I do not want to have surgery on my left ear because that would leave me totally deaf. My question is: has anyone else had such an experience and what did you do about it?

I am on VA and SS disability. I rarely leave the house (except for Dr appts) and spend a good deal of every day in bed. I would like to find a solution but fear none exist. Any comments or suggestions would be greatly appreciated.

0 likes, 5 replies

5 Replies

  • paul44839
    paul44839 barry61472

    Posted

    Hi Barry,

    Sorry you are having such trouble.

    My Ménière’s has been raging for some months now with multiple daily attacks and no response to meds. I started on steroid injections one week apart with little effect until my fourth injection when all symptoms ceased. I was then symptom free for 6 weeks when everything kicked off again.

    The steroid injections were repeated and the same thing happened after four injections.

    I am now on a regime of monthly top up steroid injections for six months as an experiment to see if symptoms can be controlled. It is early days but seems to be working.

    i would encourage you to persevere with the steroids.

    good luck.

    Paul

    • marilynm
      marilynm paul44839

      Posted

      I found the steroids a very painful experience.  All they would offer for the pain was ice.   It was a temporary fix also.  It lasted a couple of weeks and went right back to the same old same old.

       

  • mary16977
    mary16977 barry61472

    Posted

    Hi,

    I'm so very sorry you're having so much trouble with little relief. Do you take betahistine? Many who post here have success with that med.

    If you can hang on and see if the steroid therapy can help, that would be worth a shot for awhile. I wear bilateral hearing aids and I can't imagine what it would be like to be totally deaf so take this for what is worth...if it comes down to a choice between constant attacks and no life OR relief from attacks, the abilty to live a life outside the house but you're deaf...you'll have to weigh those options and decide what is best for you. My dad is completely deaf but he gardens, goes shopping, maintains his home, manages to communicate with family and also uses closed captioning to watch TV and has a captel phone so that he can call and answer the phone. He has adjusted.

    Nobody should have to make the choices we make when suffering with MD, but here we are sad Keep asking questions, keep pushing for answers...don't give up! Tomorrow could be the day that the dizzy stops. All the best!

    ~Mary

  • marilynm
    marilynm barry61472

    Posted

    Barry,

    Im so sorry to hear that it has moved to your left side.  I like you have tried all they have to offer and have not had any luck.   I pray it goes into a remission for you.

     

  • tanney
    tanney barry61472

    Posted

    Barry.  Are you taking Betahistine?  You will need at least 16mg 3X/day but probably a little higher.

    Are you taking a diuretic (at least 25mg/day but likely you will need 50mg/day)?

    I have bilateral MD and take 50mg diuretic, 48mg/day of Betahistine, and Azelastine nasal inhaler for Non allergic rhinitis which can cause MD symptom flairup.  I also try to stay on low sodium diet.  I just completed 8 weeks of vestibular rehab and it has been very effective in controlling dizziness and head fog.

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