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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
I’m so sorry you’re going thru this. I hated the medications . Humira wasn’t available when I was diagnosed, no clue what it’s like.
The surgery itself was very easy. I was comfortable enough to go back to work the next day with an itchy but fairly painless wound behind my ear. The lead- up to the surgery seemed more involved than I expected, but more tedious than anything else.
Then in a couple week, they turned the CI on. I still had hearing in my other ear, with a hearing aid. The sound thru the processor was so odd that it was funny. Everything sounded bizarre. But that gradually changed , over another couple of weeks, and after that my brain expected the tones it heard and things began to seem quite ordinary. My speech recognition sort of kept improving for about a year, til it reached something like 92%, where it still is.
I think my overall hearing kept changing for the better even after that. I’ve since read that this happened because my brain kept learning more and more about how to deal with the inputs it got. I wish I had known about aural rehab then, it probably would have made all that happen faster.
And the best part —no more medications!!
Does that help? I’m happy to talk about it, but it would be great to learn what you’d like to know.
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Also, do you have Tinnitus at all? Did you do you still did it get better? That’s one thing that I have that’s pretty and tolerable and I left here right now. Just curious about that.
And Humira has been around for 20 years maybe it’s considered a biologic it doesn’t really do as much damage as like methotrexate doesn’t affect your kidneys or liver but obviously it’s not working so nothing is really working.
I’m really struggling emotionally with this right now. Which I’m sure you’ve been there.
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It’s my understanding that it’s a magnetic device that sticks to the side of your head or behind your ear. Is that uncomfortable or super noticeable? I’m not that vain but just curious. I’m surprised to hear the surgery was so minor that’s great to know what about normal life and doing things is it weird if you take that piece off at night then you can’t hear anything more than likely. I’ll end up like you with my left ear, having to have a CI in my right ear as long as it stays stable for now, continuing to use the hearing aid which as of right now I don’t really need. I am on all three medication‘s, which I agree with you is horrible between the weight gain in the moon face and the mood swings in there , I don’t even know what else always being tired. It’s a bizarre situation. I’m sure like you when you were diagnosed. Unbelievable never thought in my wildest dreams. I’d be going deaf. So as of right now, do you hear normally and you can speak normally talk on the phone function?