I first thought my cell phone was dying and then realized I had it on the loudest setting. I went to an ENT and had an audiogram which showed I had lost the low frequency hearing in my right ear. I was initially (mis)diagnosed with Meniere's and put on the no-fun diet ( no salt, no alcohol, no caffiene). That was 12 lbs I won't get back! Then the tinnitus began. I went back to the ENT, who redid the audiogram and saw that the issue had become bilateral and uneven ( 2 markers for AIED) and ran an antibody blood test to confirm the AIED diagnosis. It was a 3 month wait to see the immunologist, during which I had to rely on prednisone to be able to hear. The symptoms vary from a feeling of fullness and pressure in my ears, to ringing and roaring, and increasing loss of hearing. It is also typical of AIED that drugs work for a while, and then become less effective. Increased doseage will help - blood tests are de riguere to make sure various systems are not being weakened by the drugs. Increased dosages help but for increasingly shorter periods of time until a drug shift is necessary again. As there is no cure, the drugs only control the symptoms you experience. They cannot control the nerve damage.
We don't know what causes it. Did a virus make my immune system go haywire? We just don't know. We do know that it is often comorbid with other immune system disorders (like allergies and sensitivities). I hope that helps.
Thank you for writing about your autoimmune disease of the inner ear. This diagnosis has been mentioned to me as I have "issues" going on with my right ear (I am deaf in the left). What were/are your symptoms of AIED? Was there a test to diagnosis?