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Anyone out there with Autoimmune inner ear disease (AIED)?
Hi - I have been on an emotional roller coaster for the last year since my diagnosis of AIED. Just looking to see if anybody else out there has been diagnosed and how they’re dealing with it. Thank you.
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Is yours from AED or what’s causing your tinnitus?
AIED sorry
Wow, I'm sorry your tinnitus is so loud. Luckily, I have moments of peace, but I am always afraid because I don't know how long they will last. It is difficult to accept this. For now I am not using any masking device, I have enough hearing for day to day life and I do not need a hearing aid. I hope your tinnitus improves with the advice given here. I completely eliminated salt and alcohol. much encouragement.
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I correct, my dose of corticosteroids was 60/45/30/15 mg/day/week. 4 weeks. I don't know why I thought I had taken 120 mg, no, how crazy.
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I correct, my dose of corticosteroids was 60/45/30/15 mg/day/week. I don't know why I thought I had taken 120 mg, no, how crazy.
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In the blood analysis, did they performe the test of antibodies against a 68-kD protein (anticochlear antibodies)?
If, in addition to the symptoms of fluctuating hearing loss that evolves rapidly, tinnitus, vestibular symptoms (I, for example, do not have vertigo, only spiral dizziness that lasts a short time), that test comes out positive, the ENT could conclude that the disease is AIED. In my case, the rest of the immunological tests were all negative. Only the test of the cochlear antibodies was positive.
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Theresa, I have not found that any diet changes have been helpful. What is good is an uninterrupted 8 hours peaceful sleep and during the day it helps not to be too busy. Movement can make my tinnitus worse. However I do try to go to the gym at least 3 times a week, hopefully on days when tinnitus is not so strong. I think its important for me to wear earbuds to sleep. I have to sleep on my back so they don’t bother me.
One day they say Meniere's , the next AIED, the next Meniere’s…on my 5th ENT. It’s affecting both ears and is Prednisone responsive so that pushed them to AIED. Rheumatologist doesn’t see an autoimmune problem.
That’s exactly how mine started. I woke up one morning with plugged ears and then it was the right ear that I did prednisone and it was a left ear and once it was bilateral, they determine it was AIED.
So I ended up on prednisone for nine months 60 mg eventually taper down but in the interim, I did take three shots of steroids in my left ear because it had failed so drastically. It actually helped that the ENT did not think it would but it did so right now I have about a 15% hearing less in both ears. I do have tinnitus in both but I also started taking methotrexate and now I’m on Humira which is expensive but it seems to be keeping me stable so if your insurance covers it and your rheumatologist can get it past for you it’s worth a try I mean none of it’s good for us right but either that or again I think you said you had the sound machines you can also do the hearing aids where you can put it through an app on your phone so it’s going directly into your ear which does seem to help a little bit more and like I told one of the other people with it, watch your sodium stay hydrated watch your alcohol .
It sucks no doubt about it. I would’ve never imagined in my entire life that I would be losing my hearing have tinnitus it’s just crazy to think this is even happening but it is what it is so you my friend I need to do whatever you can to try to feel better.
Thanks for correcting that I was freaking out here thinking they gave you that much but even ending at 15 here in the United States they have you go down to five then three then two then one and even a half it’s supposed to bring your coral back up slowly to see if it stops the information.