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

Why not try the autoimmune protocol diet? Very restrictive but it got me on the right path. There are tons of info on the web to help you but I basically ate meat and certain fruits and vegetables for about 3 months. This diet and working with my functional medicine doctor fixed my gut. My other symptoms decreased immensely in severity.
Just a side note, I also have Sjogerns. I started taking MK-7 at a dosage of 182 mcg a day for osteoporosis. I’ve noticed that my mouth is not as dry.

My empathy and reply to all of you. I have had hearing loss since the 1980s, slight at first, now severe. Tinnitus in both ears since 2001 (high pitched "electronic" tone). Hearing aids since 2005 - on that subject someone here claimed that all hearing aids do is increase volume. Maybe the cheap ones, but mine have plenty of tone and specific frequency adjustments for each ear that clarify speech very well. 2018 my right vestibule over pressurized until damage occurred, resulting in 12 to 16 hours of debilitating dizziness, then vertigo, then throwing up (every other day for 6 weeks). My right eyesight also deteriorated overnight. Lots of doctors, PT, and every test known to man later, turns out for me it was a pinched nerve in my neck. So, for me, when the fullness in my ear starts, I can get that under control with neck exercises. I truly wish it were that simple for everyone who has this condition.
All of that is just background. 2022 I reacted to the 3rd Phizer covid booster - inflammation to my already damaged right ear. Only severe dizziness this time, no vertigo. ENTs were absolutely worthless (prednizone only worked while on it, both had nothing els to offer), neck exercises did nothing. Only 2mg valium, 4mg antinausea, and 1 to 2 hours sleep got me through. A ton of research, especially with VEDA (Vestibular Disorder Association) lead me to a PT who specializes in this arena.
I also discovered a slight misalignment with my eyes. Local optometrist and ophthalmologist said it was nothing, but further research lead me to a neuro-ophthalmologist and corrective glasses (needed glasses anyway).
I am to the point of just accepting that the nerves connecting the eyes and ears are somehow slightly damaged and not fixable. VEDA suggested the PT mentioned above to train my brain to recognize that the balance messages from my right ear do not match that from the left and both eyes (all four need to say the same thing). I do my exercises every day (takes about 5 minutes), and with my glasses - no dizziness for the last 3 months.
It took a lot of work to get here, but so far - success. I am back do doing the things I like to do - like my motorcycle and long mountain hikes. Surgery and more drugs are usually my last resorts.
My suggestions include personal research - plenty of vestibule, vertigo, and Menieres websites with peer-reviewed medical articles and studies that you might find give you answers that the doctors cannot. People in the medical professions are just people - they cannot know it all, and I feel it is up to the patient to be a major part of the fix. After all, we are (have) the problem, and although we know best how it effects us, we may not be able to express it well enough. And when they give us homework (exercises to help correct our conditions) DO THEM!
Good luck to all of you, and take care...

My eyes are involved too. It’s so hard to get doctors to understand. I agree you have to do research on your own. I just feel like researching my health is all I do and that can get depressing!
Did you go to Chiropractic for pinched nerve. Were you in pain?
I see this is an older post but I would like to hear more because your symptoms sound like mine.
Most people don’t mention their eyes.

My eyes are involved too. It’s so hard to get doctors to understand. I agree you have to do research on your own. I just feel like researching my health is all I do and that can get depressing!
Did you go to Chiropractic for pinched nerve. Were you in pain?
I see this is an older post but I would like to hear more because your symptoms sound like mine.
Most people don’t mention their eyes.

I think we’re all suffering from being prescribed conventional solutions to a new and unconventional disease. My eyes do not jerk. They feel tight in the socket, and I have lights orbiting my peripheral vision. This is almost constant. I’ve sort of learned to ignore it.
Because I had mild cataracts, the treatment was cataract surgery, which of course did not solve the problem. My eyes have been extensively examined for surgery, and according to doctors are fine.
Lacking any other choice, I see a retinologist soon. I’m looking for assurance I am not going blind, but doubt this new doctor will get to the bottom of my issues.
This is just one aspect of my symptoms. For each symptom, I’m offered nothing, or a conventional treatment that doesn’t address what I’m going through.
I think that is the case for most of us. Someday there may be a treatment, but when?
Maybe not soon enough for any of us. Or maybe when we are all gone, this malady will be forgotten?
Integrative Medicine is more creative, but after two months in treatment I have seen no improvement in my symptoms.

I’m going through something similar. It started after Covid, and I am quite sure it’s all related. I wear hearing aids....not much help. They are pretty fancy Signia with the tinnitus and blue tooth features. I really don’t like Bluetooth myself because it blocks out everything else. I have hyperacusis too, so I have to balance some hearing, but not loud enough that background noises make me jump out of my skin. It’s tough to balance. It all sucks.
I have gone the Integrated Medicine route because I couldn’t get in to see an ENT early enough for the steroid treatments to be valuable.
So now, we fight the inflammation. I have no idea what the outcome may be. I hope I don’t go totally deaf.
Worse than the hearing loss for me is the “full” feeling and pressure, along with tinnitus and hyperacusis.
Feels like my head may explode.
ENTs all suggest SSRIs. I have not found one that I tolerate.
And, really have not had a definitive diagnosis either.