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Older Menierian

Discussion in 'Your Living Room' started by beachkitty, Jun 15, 2020.

  1. beachkitty

    beachkitty New Member

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    Jun 17, 2017
    TN
    I developed Menieres in 1984 and went bi-lateral in 1985. After several doctors and 9 surgeries (John Shea III, Memphis, TN) I went to Garry Jackson in 2000. At that time, he believed I had AIED. Back in the day ( :} ) doctors believed you had one or the other, one led to the other, or both. I've been on Methotrexate and Prednisone since then. I recently visited a doctor at Vanderbilt in Nashville who thinks I don't have and never have had MM or AIED--huh?? I now go (yep, 35 years later) to have more and newer balance testing done the end of June. The ONLY symptom I haven't had is total spinning. Dizziness--yes. Off-balance--yes. Etc. But true SPINNING, no. Has anyone else had this happen to them? Thanks for any personal or informational replies.
     
  2. IvanA

    IvanA Active Member

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    Apr 30, 2020
    But you have loss hearing and tunnitus? In any case, I'm not surprised by your story. They asked me if I had any family member with meniere because they suppose that he has genetic inheritance; I have an uncle diagnosed with Meniere in the late 80s or early 90s and they already wanted to catalog this disease because I had all three symptoms, so I asked my uncle and he told me that he only had severe attacks of vertigo, but no He lost hearing and tinnitus, in fact after some bad years with vertigo he did not have attacks in decades and now he is 70 years old and he listens very well for a person his age. The more I read and meet people with this disease, the more it becomes clear to me that they have been diagnosed simply by having the symptoms without knowing what causes them, with little investigation and often only having vertigo.

    Stay with the good news, even if it is late they open the door to not having meniere and it may be something with treatment and cure.

    Edit: In my case, I have mild hearing loss, tinnitus and strong dizziness with loss of balance 4-6 weeks, today I have mild dizzines daily but no loss of balance. And never have spinning. And they cataloged me as possible meniere and I am waiting for more tests.
     
  3. Jimii

    Jimii Member

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    Apr 10, 2019
    For 18 years I had all the symptoms except the bad vertigo, but I knew I had Meniere's. (My grandfather had it too.) A few instances of very short vertigo episodes over the first 18 years, but nothing like the last year or so which last 3-4 hours and leave you vomiting and immobile. I had never heard of AIED until your post. Looks like Meniere's with a different name. No known cause, and almost identical symptoms.
    I dread going bi-lateral. My grandfather did. I hope I do not.
    I wish you the best.

    Jim
     
  4. beachkitty

    beachkitty New Member

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    Jun 17, 2017
    TN
    My tinnitus has NEVER left—only changes pitch and loudness level. And yes I have hearing aids today. Best wishes to y’all and thanks for the replies. I’ll try to catch you up after my tests the end of June
     

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