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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)Comment receiving replies
Oops, just realized I didn’t answer your final question. I think I do hear and speak “normally” now, and except for a couple weeks at the very beginning, always did. That said, my family tells me that my voice sounded robotic for the first year or so, then gradually returned to ordinary.
I have read recently that my experience is probably similar to others who don’t have much “deaf time” before they get an implant. Apparently people who wait a lengthy time have less successful outcomes . Need to keep that brain thinking about sound processing, even if pickleball is more fun.
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You definitely seem to have embraced your situation and adjusted to having the CI’s.
So basically, you got sick of the meds and decided just to see what would happen? And if I remember what I read previously you had hearing aids for 15 years, so it took a while for you at least, for the AIED to advance to the point of needing the CI.
At this point, I’m on all three meds and other than the prednisone I don’t think the other ones are working. The doctors office tells me I have to wait for one more round of Humira shots, but they do find it discouraging that the left ear is failing. So I could stay on prednisone, which is risky. We both know that, I just have to figure out what to do if the Humira doesn’t work.
Statistically, other than you, most people go deaf quicker.
Can I ask how old you were when you were diagnosed? Also, are you a people pleaser in a type A personality? My audiologist tells me that this hits middle-aged women that are type a personality, people, pleasers, and the attributed to stress? What are your thoughts on that?