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Meniere's Story

Discussion in 'Your Living Room' started by DizzyAF, Feb 14, 2020.

  1. DizzyAF

    DizzyAF New Member

    Feb 14, 2020
    I thought posting my story here might help others.

    7 years ago I randomly got dizzy. That's it. I didn't think anything of it, and it went away for a long time. But it came back a year or so later. Then, it started escalating. I went from getting dizzy once in a blue moon, to getting dizzy once a month, once a week, once a day, five times a day, to all day every day. Sometime in there my right ear started ringing. A year later, the left started ringing. Then my hearing started to fluctuate wildly-- it will go down to near total deafness and then slowly 'turn' back on. The final symptom has been an increased sensitivity to sound with pain. Certain loud sounds will sort of 'catch' in my ear and cause an awkward shifting of fluid. When I talk, my own voice causes fluid in my ears to shift, which is a bizarre feeling.

    I've been to probably 5 doctors over this. Urgent care clinics, GP. I had an MRI that came back normal. Finally a neurologist diagnosed me. My treatment so far has been meclizine, Prednisone, Aleve, and vestibular rehab. I also go for walks 30 minutes a day. I am slowly learning how to cope.

    One of my takeaways from this is that doctors tend to treat this like a stubbed toe. Like it's nothing. They'll say, "Come back in 6 months," or "lets wait and see." But it's something to me. This systematically ruined my entire life. I couldn't work, drive, walk around a grocery store, hold a normal conversation, sit or stand comfortably. If I could do anything differently, I'd be more proactive. But hindsight is 20/20! I still struggle with all of these things. Family and friends have a hard time understanding, which is frustrating.

    Now, I am focused on preserving my hearing, and getting stronger. I have good days and bad days. Like most things it's a messy ending, but I'm not bedridden anymore so I'll take it.
  2. California Sun

    California Sun Active Member

    May 23, 2019
    I've had Meniere's for more years than I care to think about and a big problem is that many doctors don't take our symptoms seriously, and are very dismissive of how this affects our lives. And people in general just don't get it most of the time. They think that it's an "earache" or "ear infection" and even worse, tell us that they know just how we feel. They don't have a clue. I've long since given up trying to explain to people what this is, and does. Part of the problem is that most people outside of the medical community have never heard of it. I wish there was more awareness of this horrible disorder--like maybe a well-known person who has it being a spokesperson. I wish I had an answer.

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