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

My rhematologist ordered a lab test and I think it was called Heat Shock Protein (HSP-70). It came back as a positive so we made the assumption that I had AIED. The after hours medication was predisone I think. Honestly it's been so long that I can't be 100% certain on that. This was per a neuro-otology MD I saw. He confirmed there was nothing I could do re: the tinnitus, and the AIED usually comes on suddenly that it was important to act quickly to keep it from crashing so to speak so that's why he recommended something to take after hours. I never had to use that prescription.

If tinnitus is a concern, I highly recommend you check out a good set of hearing aids (not a "miracle ear" device etc). I bought a cheap set and regretted it. Once I got really good aids, the tinnitus didn't disappear, but it sort of moved to the background. Plus the masker option was helpful when sleeping, but it is hard to sleep with hearing aids in (mine have custom molds). The additional hearing gain I think helped.

Thank you for the info. I’ll ask about the HSP-70. I’ve been using a good pair of Signia hearing aids for a couple of years. My tinnitus is constant and loud. It’s like having a manufacturing plant running all the machines in my head in both ears. I think I could hear so much better if I could stop the tinnitus. I’ve avoided salt, alcohol, caffeine, sugar, spicy, stress with little improvement. Have you found a specialist with AIED successful experience?

Thanks for sharing having severe tinnitus in both ears and Sjogren’s I’m running out of options the audiologist said my hearings good. I’m going next month to discuss hearing aids. I was wearing a sleep mask with Bluetooth to try drowning out the high pitch in my ears so I could sleep when I worked night shift . I also have narcolepsy and a cyst on my brain always wondered if they had something to do with it. Take about 15 pills a day and supposed to be taking more but scared to because of possible interactions ! But everyone says take them by the handful and go on! I had a reaction to Flomax 3 ER visits in 8 days and was told they couldn’t find out what was causing the chest pains, palpitations, and some other serious problems. Finally I stopped the Flomax and everything went away . I have taken Flomax at night with no problems , this time was told to take it in the daytime , not sure if it interacted with my day meds but hey the heart doc said just take them. My luck the meds causing the tinnitus!

@sbtheplumber1 Taking so many medications is a real problem, isnt it? Have you gone to see your local pharmacist? They should be able to help you with your medications. Call and see if you can make an appointment.
I also have an app on my iPad that really helps me keep track of everything. It’s called Drugs.com. (I put a picture of their main page below.) I take about 24 pills per day. (:-(
Can you call the pharmacist today and get an appointment?

Becky, I use drugs. Com yo check hem and it shows interactions. I’ve spoke with the pharmacist before. They are so busy they don’t have a lot of time to talk their understaffed a lot so they close the drive up and then you have walk or in my case try to find a scooter to get thru Kroger to he pharmacy . I see my Primary care doc next month . I will be losing 4 doctors next month so maybe the new ones will know more , our insurance company Anthem Bluecross snd Blueshield didn’t settle with the local hospital

Hello. I was also diagnosed with AIED two months ago, here in Spain, after having spent months seeing ENT specialists and telling me that I had otosclerosis, even with the possibility of surgery. Thank goodness I found an otoneurologist who tested me for cochlear antibodies. Furthermore, my symptoms were not consistent with otosclerosis. Take a first dose of prednisone with 120 mg/day for one week, and then reduce the dose each week, until I have completed 4 weeks. We don't know if it has worked. I have had a bout of tinnitus and fluctuante hearing loss again. I would love to be in contact with more people in my situation. Very rare disease with little information and I hardly know anyone diagnosed.

@teresaramirez Welcome to Mayo Clinic Connect! I’m glad you found this site. Yes, AIED is a rare disease and not much is known. I’m going to ask several members if they would join the discussion @poc1115 @seniormed @tinae .
Here is what I found that has good information: https://www.enthealth.org/conditions/autoimmune-inner-ear-disease/.
I will also see if there are any other discussions on AIED for you to read.
Do you feel that you have a good doctor who listens to you?

Hello, I was diagnosed with AIED two years ago. I did several rounds of prednisone for nine months then methotrexate, which worked for a short period of time and then finally I ended up on Humira. I’ve been on the Humira for a year it seems to be keeping my condition stable. I do have tinnitus and probably a 15% hearing loss in each ear.
As far as the tinnitus, make sure you stay hydrated and reduce your sodium intake that seems to keep that from getting worse and avoid extremely loud situations.
I have an awesome audiologist and a great ENT. I am sorry you’re going through this. I think for all of us diagnosed it’s just a matter of trying different medications that might keep it stable but at this time there’s really nothing else we can do. Several people that have reached out thru Mayo connect have cochlear implants and they have adjusted very well to them. At this point, your ENT may more than likely direct you to a rheumatologist who can try some anti-inflammatory medication, which is what methotrexate and Humira are.
Please reach out with any other questions and keep us posted on your journey. We’ll connect as a great platform for five new people with similar medical conditions. Tina

Hello again, thank you very much for the answers.
Thank you very much @tinae for your contributions.
In these three last days, I have gone from being in a total crisis, with super high tinnitus, pressure and practically no hearing in the low frequencies of my left ear, to being normal the next day, almost not hearing the tinnitus and recovering my hearing (from losses of 70 db, I recover to 30 db at the frequency of 1000, 500 and 250 HZ; in my case, for now the high frequencies are always normal).
I had not heard of the drug "Humira", I will consult with my rheumatologist.
Yes, right now I am undergoing treatment with an otoneurologist and a rheumatologist. Although I'm not taking anything right now, since the first dose of prednisone didn't work. Although the otoneurologist has told me that if I have more crises again, we will go back to the corticosteroids.
@becsbuddy Yes, I am happy with my ENT doctor, since, as I mentioned, it took me a year to go to the right ENT, have him do the right tests and diagnose me with this disease, and rule out other middle ear diseases.
@tinae , what are your symptoms? Can you "live" with your tinnitus?
I take note of the low sodium diet and drinking plenty of water; I've been doing it for a couple of months now, since there was one of the doctors I went to who ruled out Meniere, but he advised me to eliminate sodium as much as possible.
Yes, please, we keep in touch here.
What a joy to have found someone diagnosed with AIED.
Thank you.