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

Thank you Lynne,
I also had the omicron variant.
I am taking lots of B vitamins with folate. I have had low B12 for several years (unrelated to Covid), though perhaps made me more susceptible to complications? Who knows?
As I mentioned in an earlier post, I’m now with an Integrative medical group. They do think outside the box, and are more helpful than the many western style specialists I have seen. I will ask about seeing a rheumatologist at my next appointment.
The scary thing for me is that I am not stable. Even after two years, I’m still losing hearing, and having more distorted hearing. Also, my left eye has lost considerable sight. My digestion and elimination is completely different than before Covid. It’s all connected I’m sure.
People talk about adjusting to the “new you”. I might be able to do that if I felt my condition was not still deteriorating.
I am fortunate in that I have experienced very little pain throughout this odyssey. But losing hearing and sight is not a small thing.
Good luck to you, and please keep me posted on your progress. Likewise, if I have a breakthrough, I will let you know.

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

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.

Google…Auto Immune Ear Disorder or AIED and read about it. I did see an ENT and then an Otolaryngologist they both agreed steroids was where to start but then sent me to a Rheumatologist because that is who treats AIED.
We live 80 miles from Dallas and it seems like all I did was make appointments and then wait. This all started in November.
My ears fluctuate so much that my hearing aids rarely work.
Yes, if you have Cochlear Implants there is no going back so what hearing I have in that ear will be gone.
Lynne

Now this I find extremely interesting. I have been told to see a Rheumatologist for a few different problems I’m having but one of the most is ear problems. I’ve had them for a long time but they got worse after my maderna shot and after I had Covid. The same as you.
I’m going to try the B with Folate and see if it helps. I also got an aneurism within months of the Covid vaccine. And now another one after Covid. I swear they are a result from the vaccine and the fact I had Covid which no doubt added to my weakened immune system.

Over 30 years. I take lipoflavanoid pills and antivert tablets when I have a flare up

I have Sjögren’s. Please let me
know what medication you
are talking about. I have been
on a prednisone round that
helped. Now ears are a big
problem again.
Thanks.

Mycophenolate 500mg
This is an anti rejection drug
And lessens you immune response that is attacking my ears. I’m anxious about taking it but also want to hear better. I’ve had reactions to drugs in the past. But I’m going to start this tomorrow.

I was diagnosed with AIED in 2004-ish I believe? Though I’m a little more difficult- because I was born deaf in one ear anyway. Progressive hearing loss hasn’t been a problem that I’m aware of anyway yet.

What hit me in spades though are debilitating vertigo, nystagmus, and headache attacks. Tried every medication and treatment under the sun, including super fun injections into my inner ears.

After many trips to the ER because I couldn’t see/walk when they happened, the docs there found that the symptoms arrested with pain meds like dilaudid.

My ENT and Neuro tried putting me on Oxycodone to arrest attacks when they were coming on, and found that it worked well - told me to work a long-term plan with PCP to maintain that treatment. Theory being that it calms my CNS.

Anyone have any kind of experience like this with AIED??

Anyway, I did that and had a great, successful care plan with the same PCP for ~17 years - minimal incidents.

My problem now: my PCP just retired without helping me get a replacement in the same clinic, and even though they’re all part of the same clinic - no one wants to help. Because “pain meds bad”, and this seems “off-label”. And now the attacks are coming back :/

I have Meiniere’s but also have lupus. The neurologist said that it doesn’t matter if I’m diagnosed with Meiniere’s or AIED because the treatment would be the same.
That being said, I have had this for over 40 yrs. I gad debilitating attacks early on and then they were gone till this past August. I’ve had several attacks since August. I take Betahistine, 24 mg. a day but honestly believe that my symptoms are anxiety/depression related. I started seeing a psychiatrist after the first attacks because my mother had Meiniere’s and she suffered from depression. I thought maybe there is a link as I did research on it and found that people with type A personalities tend to be the people with Meiniere’s.
The psychiatrist prescribed Sertraline 100 mg. daily. Flash forward and no attacks until this past year. Went back to the psychiatrist and they increased the dosage and also prescribed Mirtazapine, 45 mg. daily. I haven’t had an attack since. I have significant hearing loss and wear hearing aids in both ears. This may possibly be an avenue you could look in to for help.
You’re definitely not alone in this struggle to figure out what experts don’t know.