I have also been diagnosed with AIED. It. was discover 6 years ago that I had hearing loss. 5 different kinds. My hearing was stable with no additional loss until I had Covid vaccines. 4 days after the second vaccine my hearing plummeted. I was put on high doses of steroids and had shots in the ears. Did not work. I then participated in a clinical trial using a drug used for RA patients. It was an 82 day trial- giving myself daily shots and blood work and hearing tests every two weeks. Spinal taps. MRIs. The works. It seemed to stabilize the loss until I was about 2/3 of the way through. Then hearing plummeted again. More steroids- but my body could not handle it and it was not helping. So I was taken off of them. This was in 2020. I qualify for CI but don't want to do it yet. I do pretty well with the hearing aids. Last year around this time I got scleritis in my right eye and was diagnosed with more issues. Tested for tons of things- nothing showed up. A couple of months ago I was at and eye check up. Doc thought I had Psoriatic Arthritis. Started all the testing again. Went to a rheumatologist. More tests. Diagnosis: AIED. This. is connected to the eye problem which is also very serious as it could call blindness. And it is also connected with skin problems. I don't have a protocol yet. I have hearing tests and doc check up every 3 months so when I have the next one- will see what I need to do. I have already had my freak outs along the way- before the diagnosis. Expected in any event to be deaf at some point. So this is not shocking but does make me really sad sometimes. I have been through the wringer- and it's likely time to seek more help. I think the thing I hate the most is constantly having to explain that I am hearing impaired. No way around it as there are times when I just cannot understand anything. I know all of you know- but the brain power it takes to keep with conversations outside of one on one conversations- is exhausting. I am grateful the diagnosis is not some horrible painful issue- but we all know- this is serious and heartbreaking. There is pretty much a concensus that this condition was likely kicked off by the covid vaccine. It is seen in the hearing world and also been responsible for inflammation issues in the eyes. I am exhausted from going to a zillion doctors but grateful to have wonderful care. Will update this when I have a protocol. Wishing everyone an easy go of it. Besides the heartbreak of the diagnosis- the inability of so many people to have compassion or empathy for this situation is astounding. If I only had one leg- no one would tell me to run. But there is such a lack of patiernce for hearing impairment. As well- I was advised to never have another Covid Vaccine and have had none since the first two. I only took the masks off 8 months ago. All very polarizing. I have always been a super social and active person- this stuff hurts! Will be tuned in to learn more about AIED and how you all cope and treat.