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

Well, first the easy one. The magnet, at least as far as I experience it, is roughly disc shaped and about the size of a half-dollar. It sits flat against your skull, behind and a little above your ear,
The processor is the same shape as a BTE aid, and rests in the same location as a BTE. It has a thin wire that attached to the to of it, kind of at the 2 o’clock position ( if your earlobe is 6). Athe the other end of this wire is a (yes! You guessed it) a circle of metal with a little disc magnet in it. You put the magnet from the processor on top of the magnet next to your skull and they stick to each other firmly. The external magnet is dime sized and sits in a circlet about the size of a quarter, so you don’t have to be super precise.
I was grateful for the remaining hearing aid while I had it. The CI got precision hearing down very well, for speech, and the hearing aid got everything else, like music and the vocal tone of emotion. It’s kind of nice being able to contrast what the two devices do differently, I think it made adjustments easier for me. CI sound is not natural, and it helped me to develop a respectful regard for what it does do. It’s pretty wonderful to be able to understand speech, even if you have to give up some things.
Over time, I think your brain fills in the gaps. My understanding now, after 15 years, is so much richer than it was. Hearing is more than speech recognition, but I had to learn to just keep on going while all the magic happened outside of my control. Us humans, we like to be in charge.

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.

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?

I was about 45 when the AIED hit. At that point , if I remember , my hearing loss was diagnosed as severe. My hearing just progressed to deafness gradually.
I hated the way I felt on the meds and needed to look for a job. I guess I decided that I’d rather be deaf than sick. So I stopped the meds and went back to school to get trained in a field that didn’t need me to hear well. I had been a teacher at a community college.

I’ve read that many autoimmune diseases hit women disproportionately. And stress impacts everything. But I have a hard time fitting personality into the picture. I think the disease and your hearing don’t give two hoots about personality. I can’t imagine that the researchers who gathered the statistics about AEID even met the humans who were diagnosed. If you are type A you’re lucky, you’ll have plenty of drive to cope with all this.

You’re right on the personality traits, but that’s what my audiologist told me. I suppose they wanna find a reason for everything instead of maybe what we put in our bodies or what we breathe then not sure how you feel about those types of things so the meds don’t necessarily make me feel terrible. I know they’re risky, but at this point, I am going to give it a whirl just to see but I am prepared for at least I think I am for if they don’t work what the future holds and having your help with how it went and how you feel and how you’re dealing 45 is pretty youngI am 57 so you’ve been dealing with it for a long time and I’m guessing by the fact that you play pickle ball you still enjoy activities and have fun !!

When you take the CI’s off at night to have a device that notifies you by vibration or light if there’s noises or anything or are you married or have a partner that can help you I’m assuming you keep them by your bedside just snap them on as soon as you get up?

I hope you don’t mind, but as this progresses, depending on what happens, I am going to be reaching out more to you

Also, I think it’s ironic that you have had this for 30 years and reached out found the mayo clinic just to share your story I mean that’s amazing. I only ended up on connect because I went to them for a second opinion and they told me they could do nothing else than what the doctors were doing which gave me peace of mind that I was getting the best care I could. I’m glad that I got to meet you Becky.

I got on Connect because I’m starting to write a blog for my chapter of the Hearing Loss Assn of America. I thought I should get an idea of what people with hearing loss were talking about. I didn’t imagine I’d start responding to posts. I guess I’m just unable to keep my opinions to myself.
I’m glad I met you too. You made me look back and remember, which is probably the best thing that could have happened. And besides, my heart goes out to you. It’s a tough road to walk. The doctors do their best, but they only treat the disease. Your loss is much bigger than the disease

I agree, I think things like nutrition and stress impact us quite a lot, but most of us have mixed control over them. So we do what we can.
I’m happy to keep trading messages. I’m really interested in how things go for you.

For balance, I finally ended up spending a couple months working with a physical therapist. Like everything else, no miracles but much much better turns out your muscular system knows how to do balance, but to get good you have to be strong. I got part way.

How were you diagnosed with AIED? What test were done ?? I loss my hearing on April of 2021, directly after doctors performed ear wax removal with a suction device. I had this done once a year for the past 20 years with no issue, but somehow after this last cleaning it effected my hearing. Doctor mentioned the possibility of inflammation in the inner ear.
To date I have lost approximately 40% of my hearing in that one ear . I recently started with sporadic tinnitus in that one ear .
I went to see a Rheumatologist that tested me for autoimmune disease but test were normal range. Are test for AIED the same as other autoimmune diseases? Is it possible to be seronegative and have AEID?