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Anyone out there with Autoimmune inner ear disease (AIED)?

Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)
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@lynnehenry21

I will keep in touch. I’m most likely will try the drug but need time to digest the idea. If that doesn’t work he said cochlear implants would be next. That’s a HUGE thing!!
Everything you said about after Omicron I have had also. The eye problem for me was from being on prednisone over the holidays. On prednisone my hearing is perfect even better than before. I could hear my cat purr for the first time no hearing aids???
Lynne

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Replies to "I will keep in touch. I’m most likely will try the drug but need time to..."
dloos | @dloos | Jan 20 1:25pm

How much time had passed before your prednisone treatment? I was never treated with steroids or antibiotic because there was no urgency displayed for my treatment. I waited weeks and months to get to see ENTs and specialists. I had no idea time was important because it was all new to me.
My ears were flushed....no ear wax. And then I waited and waited for my first appointment with an ENT who just put me in hearing aids. I now have tinnitus and hyperacusis and the hearing aids are almost useless because my hearing changes so much. I still have quite a lot of hearing but lots of distortion.
I think I have too much hearing to be considered for cochlear implants. Of course any surgery is concerning. What if it just makes it worse??
I think my treatment was terrible and now my options are very few.

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