It is more of a shame that things can possibly be reversible but by the time a specialist who can recognize and diagnosis it sees patients, it's usually too late so the best to do is try to stabilize what one can. It is my understanding there are two available blood tests out there, one being more reliable then the other but neither altogether that accurate so it can still go undiagnosed. Unless the signs of responding to prednisone treatment and an immunospressant seem to be working at stabilization."
—PAWS4LIFE
"I have in the last month acquired AUTOIMMUNE EAR DISEASE. I had a stroke when i was 23yrs old and had 30% lost in my left ear, none in my right. I six years ago got an hearing aid that worked wonderful. Then about july of this year I notice a drop in my hearing abilities. Of course I went to my ent dr no avail. Just fluide. I had no blood work, then a CT. Just fluide they said. On Oct 1'01 I awoke totally Deaf. At first I just thought too much "fluid". To make a long story short, after many rounds of sickening anitbiotics they concluded it was not ear fluide or infections. After all my blood work came back magnificent no problems, they were stunned. Then they sent me to a specialist, who said I had the same thing Rush limbaugh has except I lost it all and he can fix it. I am now on high steroids for about a month then we will see if no change then maybe implants. I am adjusting alot better than I thought, maybe it really has not hit me good."
—LEEKY2
"Can someone explain this disease? I began losing my hearing as a teenager through my early twenties. For some reason, the loss stabilized and I haven't lost any hearing in the last four years. Suddenly, I am experiencing a feeling of pressure in my right ear, a roaring noise and loud tinnitus. I believe I have lost more hearing, but I am waiting to see my audiologist next week to confirm. I am going to ask my audiologist about Autoimmune Disease of the Inner Ear when I see him and hopefully he'll refer me to a specialist.
I have been to ENT after ENT, and when I describe the pressure in my ears, they all look and say there is no fluid in my inner ear. I'm treated like a crank for bothering them and the situation is no better."
—TCASE64
PAWS4LIFE recommended this website:
http://www.shhh.org/about/aied.cfm
and also said:
"Sorry for what you are going through! Wish the stabilization could have remained. I have been through many ENT's also. My specialist now describes the pressure feeling as fluid build-up in the ear. Sometimes it can be too deep to see so I am on a daily diuretic to keep the fluids from building up in my system thereby trying to keep the pressure I feel to a minimum. It is hard though with weather changes, allergies, or a cold/flu bug. The ears (typically one more than the other or one in and of itself) can feel the pressure build and I don't know if you experience deep ear pain with it but I tell my Dr. it is like someone is driving a screwdrver into my head right through the ear."
—PAWS4LIFE
"I just read your post about your overnight deafness. Wow. That has been my sweatiest nightmare since the Rush Limbaugh news. I am told I have autoimmune disease and have been progressively losing my hearing for about 8 years. I am terrified. I think you sound so very brave with what you say about how you're handling it. I am simply writing to wish you well and the best that medicine has to offer. Do you know if there is a special group anywhere for us?"
—DEAFSTEP1
"Don't give up on the Prednisone! When I suddenly lost my hearing Sept 21, 2001, I was put on Prednisone for one week. Nothing happened. I said now what, the doctor suggested a test for AIED, I said and if it is that what is the treatment. Prednisone. So we agread I would continue taking it 40mg a day. October 19, 2001 my hearing came back (in the right ear, left ear didn't work before episode). The doctor then had me taper the prednisone, when iI got below 20mg the hearing dissapeared again. I am back to 30mg a day, and today I heard the alarm clock!
When my hearing came back the first time the Doctot was surprized!, I told him it was a miracle, the result of prays from freiends and family, he did not disagrea.
I am sharing this with you beacause, it helped me. Prednisone has different effects on different people. I have gained weight and have trouble sleeping. But if I can hear my Grandchildren at Christmas it will be worth it."
—BLEFRANCOIS
"I have AIED. Went deaf overnight in the right ear Oct. 3 1998. You don't forget a day like that! Five weeks later I started losing hearing rapidly in the left ear (along with serious dizziness and vertigo due to the destruction of the inner ear - but that nightmare is another story!) Went to an ENT who properly diagnosed it right away and put me on high doses of prednisone and chemo drugs (methotrexate). Early on I also took multiple series of
