During my brief stint as a graduate assistant at Info to Go (previously the National Information Center on Deafness) at Gallaudet University, a newsletter titled the "Band AIED" caught my eye. Thinking it was about first-aid bandages, I read it. It turned out to be about Autoimmune Inner Ear Disease (AIED).
What is Autoimmune Inner Ear Disease (AIED)?
AIED is a rare autoimmune disorder, meaning that the immune system attacks a part of the body. This attack on the inner ear results in a rapid hearing loss. Sometimes people with this condition also experience balance problems.
Treatment for Autoimmune Inner Ear Disease
AIED can be treated with drugs. If it is treated early enough before the disease has a chance to progress too far, the hearing loss can be stemmed. However, not everyone can tolerate the types and amounts of medication required to control this condition.
Research on Autoimmune Inner Ear Disease
The National Center for Rehabilitative Auditory Research (under the Dept. of Veterans Affairs) has published some research papers addressing AIED. In addition, the American Academy of Otolaryngology--Head and Neck Surgery had a clinical trial to evaluate the effectiveness of three different drugs in treating AIED.
Support for People with AIED
Meanwhile, people with Meniere's sometimes get AIED, so the Meniere's Discussion list addresses AIED as well as Meniere's.
Web Links on AIED
Having AIED does not have to mean the loss of your hearing. Here is an About visitor's own experience:
I was diagnosed with AIED in September 2003. My hearing in my right ear went in a matter of 3 hours. I had severe hearing loss with extreme tinitus. The next day I was told nerve damage from a general md. I then went to an ENT specialist within 24 hours of the hearing loss. I was told I had about 72 hours to start treatment if I had any chance of getting any hearing back.
I was immediately started on oral steroids and I was immediately given shots in my ear. Two weeks later, it went to my right ear and we started the shots in both ears. My hearing loss was so severe on my right ear they would not even give me a percentage of what my chances are of regaining my hearing.
For the next several weeks I went through a series of ear shots and the dosage of prednisone went up to 60mg. I would see my ENT twice a week for shots and hearing tests. My hearing started to get better in my right ear after each shot. My left ear got progressively worse until about the third shot, then is slowly started getting better. All in all, I was on prednisone for 3 months. Then tapered off. We came to the conclusion that we thought the shots were working and not the oral steroids.
As I kept reducing my oral steroids, my hearing still was progressively getting better. After 6 months, I am continuing to see some progress. It has been slow. Initially I was going to have to have hearing aids. But at this point I am not. I am in the low low range of normal hearing. However, I still have a lot of the residual effects. The ringing in my right ear while it is much better is still there, my ears pop constantly and I have a lot of weird effects that go on that are hard to explain,they come and go.
I truly believe that the ear shots kick started my ears and stopped the progression of hearing loss.I am told that I am extremely lucky to have gotten a lot of my hearing back. I also when this first started was to take a lot of vitamin B complex. I still take it to this day, although I am at the normal does that you should take daily. For over three months I took 1,000 mg a day. I can't say that it has helped, because I am not sure exactly what has helped, but part of me thinks this has helped with the tinnitus. All and all it has been very scary as I have never had something like this happen before.
I take each day day by day, as It could also go again. I am still being monitored, but only every few months, unless I notice a change for the worse. I must say I was very lucky to have an ENT that was up to the challenge and very aggressive in his treatment. I did go for a second opinion when this first started and was told that he was doing exactly what the other ENT would do.