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

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?

Hi Cindy - I totally understand your predicament with all those other symptoms going on adding more meds to it just makes your symptoms worse I know with the methotrexate sore so I have to take Folick acid other than that the 77 pretty minor prednisone like you right now I’m still in 10 mg unfortunately it’s such a rare situation. They were in the doctors really don’t know what to do. It’s just kind of a game of trying different things which is unfortunate for both of us. I know the hearing loss is huge. Specially, with what you do. I’m sorry you’re going through this.

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 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...

@tinae Yes, it is very rare, maybe 15 out of 100,000! You must have seen all the right doctors in order to get a diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6213300/
I’m also giving you the link to our hearing loss group because there are currently no discussions about AIED in this group. You can look through the discussions and find an appropriate one for you. You can also re-ask your question there:
https://connect.mayoclinic.org/group/hearing-loss/
Have the doctors made any suggestions for treatment?

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?

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?

I'm just starting this journey. Dx of AIED. Tinnitus bad in left ear, plugged, full etc. Food seems to play a part in the severeness. Anyone have a diet that helps?