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Autoimmune Inner Ear Disease Discussion

when the immune system causes a hearing loss


Updated June 18, 2014

treatments with Decadron (also a corticosteroid like prednisone) by needle directly through the ear drum into the inner ear to bathe it. Some, or all, of this worked for a long time. No doubt it delayed total loss in the left ear (the right one was shot right out of the box). Unfortunately, the long term side effects of these harsh drugs (minor inconveniences like moodiness, irritability, wieght gain and increased appetite, hair loss, nausea; and major effects like much increased likelihood of blindness, leukemia and various cancers in vital organs) caused the docs to recommend tapering off these at 3 years (starting in Sept.) All the while over those years I experienced steady degeneration (but delayed like I said) of hearing in my 'good' ear but I could still hear some with aids. But without the drugs to fight inflamation and suppress my immune system, the ol' bod is taking down the last of the inner ear works as we speak. A rapid succession of stronger and stronger hearing aids, and less abd less benefit. I've alwasy know total loss was inevitable. I am profoundly deaf in the right ear and have more than an 80+dB loss in the left (good) ear. I hear betwen 24% and 32% word recognition. Funny, I know I lip reading some (which I guess I just picked up over time) but I would have thought I was getting 90% or more."
"19 years old and was diagnosed with AIED about year and half ago. i go to doctor in philadelphia also and was implanted in january of last year. i was wondering if you have any experience with cochlear implant or look at one for youself. also who is your doctor? i...go hearing college and i am profoundly deaf... the doctors did not catch my hearing loss early enough to stop it and sometime i feel so alone like no one understand what it is like to practically wake up deaf."
"I am so glad I found this forum tonight. I lost my hearing Jan. 6 '02. I already had a lot of loss in my left ear, but it happened so gradually I thought it was hereditary or something I couldn't control. I really can't pinpoint when I started losing my left ear. I guess early teenage years. I could never use the phone with my left ear. So when overnight on 1/6/02 when I lost my hearing in my right ear, things changed for me drastically. Luckily I didn't waste time getting to an ENT close to home here in Delaware. He put me on a low dose of prednisone and after a few weeks I started to get some hearing back. After the perscription was done my hearing declined again. I went back on 30mg of pred. and it again helped. When I tried to taper off again the hearing declined. In the mean time the usual tests. MRI negative and blood tests negative. Prednisone seemed to help get back some hearing but never on one level. I have had fluctuating hearing ever since. Some days great and other days back to closed captioning. Just had my last visit with my ENT on 2/6. He basically said he doesn't know what else to do and he referred me to a specialist. Stumping doctors is never a good thing! In the mean time I have to find a new career. I was an airline pilot for a regional carrier down in NC. After being laid off in August '01 I was just hangin' out till I get another flying gig. Now after the hearing loss I have a do over on the career path. Yes I will miss the flying. I got to do a lot of cool stuff without really working that hard. Thankfully I am still young enough to start over (30 going on 21)."
"I can't believe it but you sound just like me. I woke up deaf 3 times. First one ear then 11 months later the other. That time they loaded me up on Pred and I had a hearing aid for about 10 months with a severe to profound loss then bang - woke up deaf again with severe vertigo. That was Aug 2000 and i still use a cane off and on. I'm still on methotrexate, can't have an implant and have severe asthma and sinus problems, ear polyps and drainage. Do you have complications like that? I would love to have your support because I have never met anyone else like me."
"I am 41 and have recently been diagnosed with Autoimmune Inner Ear Disease. I was curious about what treatment others have received and the results."
"Not many responses, eh? Not surprising - not many people know what AIED is. I was dignosed with autoimmune inner ear disease a year ago last October. It was sort of the "last remaining possibility" after everything else was eliminated. I have been through some meds, have seen a lot of specialists, and have a ton of info. I'll share my story if you share yours. I went deaf suddenly (overnight/maybe over 20 hours) in my right ear on Oct. 4, 1998. It felt full, had tinnitus, was a little dizzy for a day or two. Figured it was temporary. The doctor assumed it was just an infection and initially treated it with antibiotics. It didn't go away over a week or so, so it was treated with corticosteroids (Prednisone - an antiinflamatory).

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