1. < Autoimmune Diseases

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

Posted by tinae @tinae, Apr 29, 2023

Hi - I have been on an emotional roller coaster for the last year since my diagnosis of AIED. Just looking to see if anybody else out there has been diagnosed and how they’re dealing with it. Thank you.

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tinae | @tinae | Jul 2, 2023
In reply to @beckyseattle "I now have 2 CIs. Got the first one 15 years ago, the second just last..." + (show)
@beckyseattle

I now have 2 CIs. Got the first one 15 years ago, the second just last year. Hearing aids before that. I guess that I’m now completely deaf without all the gear.
I never had vertigo, but I sure had/have crummy balance. Physical therapy helps enormously. Apparently your body can get balance info from eyes and muscles, not just from the hair cells that AIED wipes out in your ear. I’ll never be a gymnast on a balance beam, but I can muddle along in a mostly upright position. My only gripe about PT is that my insurance thinks it’s a luxury I don’t need.

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Hi Becky, I’m wondering if you could give me a little bit of insight into the CI’s and how you adjusted to them. If you recall, I was diagnosed last July with AIED I like you have been on prednisone methotrexate, and the latest is Humira. I am currently on all three waiting for the Humira to kick in and then be weaned off the others. I was down to 20 mg of prednisone and left ear failed drastically in the last three days so I’m back up to 40 mg but the left is not coming back so more than likely I’m gonna be totally deaf in the left year. As long as the right stays stable I probably won’t do anything until down the road. Maybe I’m not sure but I’m sure that CI’s are in my future. Just curious how bad the surgery was for you the recovery time and how you’ve adjusted to hearing with those.
If you don’t mind sharing, I would appreciate it. Thank you, Tina.

REPLY
beckyseattle | @beckyseattle | Jul 2, 2023
In reply to @tinae "Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with..." + (show)
@tinae

Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with it and if you’ve had any luck with any of the meds or any functional medicine that might be working for you. This is extremely rare maybe 1 to 15 people and 100,000 mostly middle aged women. Thanks.

Jump to this post

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.

REPLY
3 replies
tinae | @tinae | Jul 2, 2023
In reply to @tinae "Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with..." + (show)
@tinae

Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with it and if you’ve had any luck with any of the meds or any functional medicine that might be working for you. This is extremely rare maybe 1 to 15 people and 100,000 mostly middle aged women. Thanks.

Jump to this post

So it’s my understanding that it’s like a magnetic piece it sticks to the side of your head kind of underneath your hair maybe or behind your ear is that comfortable? I was surprised to find that the surgery was so minor. Do you have to go out a lot for check ups? Can you partake in normal activities without issue? Do you take them off at night? Is it kind of weird not being able to hear anything at this point if the meds are working that left here would probably be a candidate, or at least close to being a candidate for the CI. The right ear does have hearing loss, but I can hear as of this point, but as you know, this is more than likely just gonna get worse like yours did.

REPLY
tinae | @tinae | Jul 2, 2023
In reply to @beckyseattle "I’m so sorry you’re going thru this. I hated the medications . Humira wasn’t available when..." + (show)
@beckyseattle

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.

Jump to this post

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?

REPLY
3 replies
tinae | @tinae | Jul 2, 2023
In reply to @tinae "It’s my understanding that it’s a magnetic device that sticks to the side of your head..." + (show)
@tinae

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?

Jump to this post

Humira is a biologic it’s supposedly the big guns supposed to go right to the problem you got to take it for 2 to 3 months to see if it works at this point I don’t think it is nor is the methotrexate and the prednisone as you know, it’s got to go.

Also, did you ever or do you have Tinnitus? Just curious if it continued with the CI’s or if you’ve never had it. Right now mine is pretty severe in the left ear almost and tolerable.

REPLY
tinae | @tinae | Jul 2, 2023
In reply to @beckyseattle "I’m so sorry you’re going thru this. I hated the medications . Humira wasn’t available when..." + (show)
@beckyseattle

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.

Jump to this post

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.

REPLY
1 reply
tinae | @tinae | Jul 3, 2023
In reply to @beckyseattle "I’m so sorry you’re going thru this. I hated the medications . Humira wasn’t available when..." + (show)
@beckyseattle

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.

Jump to this post

I’m really struggling emotionally with this right now. Which I’m sure you’ve been there.

REPLY
beckyseattle | @beckyseattle | Jul 3, 2023
In reply to @tinae "Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with..." + (show)
@tinae

Hi - I was diagnosed with AIED just curious if anyone else is been diagnosed with it and if you’ve had any luck with any of the meds or any functional medicine that might be working for you. This is extremely rare maybe 1 to 15 people and 100,000 mostly middle aged women. Thanks.

Jump to this post

It was a tough time, for sure. When you first realize that your hearing is at risk, it’s just awful. My friend called it a personal earthquake. I remember struggling with it all, and in the midst of feeling physically crummy from the meds.
I cried, screamed, stayed in bed with the covers over my head, you name it. It’s painful even knowing someone else is going thru it

REPLY
1 reply
tinae | @tinae | Jul 3, 2023
In reply to @beckyseattle "It was a tough time, for sure. When you first realize that your hearing is at..." + (show)
@beckyseattle

It was a tough time, for sure. When you first realize that your hearing is at risk, it’s just awful. My friend called it a personal earthquake. I remember struggling with it all, and in the midst of feeling physically crummy from the meds.
I cried, screamed, stayed in bed with the covers over my head, you name it. It’s painful even knowing someone else is going thru it

Jump to this post

Thanks for sharing. You definitely know exactly how I’m feeling.

REPLY
beckyseattle | @beckyseattle | Jul 3, 2023
In reply to @tinae "Also, do you have Tinnitus at all? Did you do you still did it get better?..." + (show)
@tinae

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.

Jump to this post

I used to have some tinnitus, altho it was never terrible. I know it can be for some people. I found that my tinnitus just disappeared while I was wearing my CIs. At the beginning, it only disappeared while the CIs were on, but it's been completely gone for years now. Who knows? Maybe it's because the implants connect directly to my auditory nerve and use up all the bandwidth. (that comment was just me spouting home-grown theory, not anything I know to be a fact).
I think Humira has made life much better for many people with terrible autoimmune diseases like arthritis. No criticism from me for drugs that help so much, just drugs like high-dose prednisone that made me feel crummy. Pure selfishness.

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