Anyone out there with Autoimmune inner ear disease (AIED)?

At this point do everything they want. Then check it all out. Who knose/ Perhaps you will find out a few more things (Bad or Good) Work with it.

Nancy, the dizziness, lightheadedness and tinnitus, unfortunately, is all part of the AIED. You can get therapy for the lightheadedness and dizziness. It may or may not help, but they can show you some techniques to get your body used to it. I too have the lightheadedness and dizziness as your hearing loss fluctuates that is going to cause more lightheadedness and dizziness. The tinnitus is also a result of the hearing loss, which I’m sure you know, and the fatigue which again as stated by some other people it could just be the auto immune disease so learning to adjust to that. I found mine was the prednisone, but we’re all a little bit different. I have a rheumatologist I am currently taking prednisone methotrexate and Humira I have been going through this for a year so my hearing loss is still fluctuating. I did have the shots in the ear, it did help a little bit at this point. I’m just kind of waiting to see how long it keeps it where it is and then if it continues to fail , at some point, I may become a candidate for a cochlear implant. I’m surprised they gave you waiting for three months. Make sure that if you notice that hearing fail you get a hold of one of them right away and get back in there. They’ll probably put you back on the prednisone for a little bit don’t wait. Keep me posted on how you’re doing. Is it both ears or just one?

The Spoon Theory is pretty much what I do. I have always lived with lists to keep be organized, but now I don't expect so much of myself. I do what has to be done first. Then I lie down and take a nap (that's a new part of my routine, if needed). Then I get up more rested and tackle household chores and cooking. Thankfully I have an understanding husband. Before getting sick, I worked in my flower gardens, vegetable gardens, and yard every day unless it rained. Now I just can't. It's depressing. That's what I enjoy doing and miss it so much. But we hired someone to keep the yard up. The physical part is a challenge, but the mental and emotional part is even more difficult. I'm a strong person spiritually, so I'm sure in time I will adjust. On another note, I see many people on autoimmune drugs but still have fluctuating hearing loss and other symptoms. What the purpose of taking those drugs? To keep it from getting worse? That quality of live doesn't sound any better than being deaf to me.

So yes, all of those drugs is to try to save the hearing, but the quality of life being on those drugs is what I’m questioning right now, so where I am is if I left your continues to go bad once it’s considered a dead deer, I will have a cochlear implant evaluation. If I qualify, I will have a device implanted in my ear and then we’re hearing aid light device on the outside so I can hear then I’m guessing as I wean off the drugs the writer will probably fail. Unfortunately, I appear to be one of those people that may lose my hearing completely with a I ED generally only 6% of people with it lose their hearing, and the medication was just to see if we could save it so it’s just a kind of a watching game.

Nancy, what exactly is the status of your ears right now? Can you hear and both neither either or or using hearing aids what’s going on?

Thank you for your input. I have been told I am not a candidate for a CI yet. I would have to totally lose hearing in my ear to qualify.

I have worn hearing aides for the two years prior to AIED. The hearing aids do help. My left ear is the one most affected by AIED, so I can turn up the volume on my left hearing aid to hear better. However, the word recognition is not all that great. But I can hear with my right ear with the hearing aid. For that I am thankful.
I just got a call from my rheumatologist at Mayo who said all of my labs are done and he sees no indication of a systemic rheumatic disease such as lupus, vasculitis, etc. The AIED is autoimmune, but not systemic. I have an appointment with my rheumatologist and ENT at Mayo at the end of October to evaluate my progress. Until then, I am to keep a log of my symptoms and stay on a low sodium diet to see if it helps. I emailed my ENT today to see if she thinks I should go to my ENT in my hometown to have another ear injection since I still have fluctuating hearing loss. I have only had one injection while at Mayo about a month ago. I was not given a second injection two weeks later at Mayo, because at the time, my hearing had improved. I'm waiting for her response.

Why must everyone wait three months or more? So we can die and suffer while waiting? This makes absolutely no sense. Are the doctors following orders from ???? Well now, my insanity is showing. We know this makes no sense. Time TIME, TIME, is very important. Will they bring the whip back? Perhaps anything goes now. I must hide they are coming for me now. bye bye

Hi Nancy, so our situation’s are very similar other than the fact that I did not need hearing aids prior to AIED. It started with a fullness in both ears then only the right was slightly affected. There was some confusion on the diagnosis I was told to watch my sodium as well and drink lots of water. Since then it has spread to my left ear, which is how they diagnosed AIED. Once it went bilateral, they determined the diagnosis so I have been on prednisone for nine months and then methotrexate and Humira those are both drugs that work well for arthritis, so there was a thought it might work for what we have due to the inflammation. I’m guessing none of the drugs are really working well for me at least, so I am giving it a couple more weeks, I did get the shots in my ear like you. It’s kind of a waiting game for me right now, so I had reached out to the mayo clinic for a second opinion they would not see me, but they did determine that they would treat my situation the same as the doctors currently were so I felt pretty confident about that , if you like your ENT that’s local and the audiologist, closer to home is always easier,,especially if you have to go in more often with the situation but either way I would try to get in as soon as you can when you notice a fluctuation they’ll probably put you back on prednisone to see if they can salvage some of the hearing loss. I also agree with the hearing aid, not helping with clarity I realized all hearing aids really do is give you the volume or they amplify. The unfortunate part is, when you have a we have, your hearing is more distorted they don’t work as well for clarity like you have said, that’s where the CI comes in but you have to qualify for that as well and usually you need to have what they call a dead ear or extremely bad hearing, that doesn’t work with the hearing aid. Good luck with everything hang in there.

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?