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

Well hello vault sorry for the delay a little busy with my job. So our stories are somewhat similar. I woke up last July with my ears plugged like I had been on an airplane, went to the doctor thought it was a Meniere’s or vestibular migraines told me it was sodium or stress gave me prednisone. It went away continue to come and go back-and-forth on and off and then in October. My left your blocked 100% so my right was already partially deaf blocked 90% put me into a tailspin major vertigo couldn’t walk laid in bed for two days. Back-and-forth on prednisone just like you 60 mg back-and-forth several times I’ve been on it for probably nine months various doses then they put me on methotrexate which wasn’t working at first then they gave me a shot along with the prednisone which they still don’t think either one’s working actually shouldn’t say that the prednisone works which is a good thing so ideally, they should be able to find a drug, but they can’t I did reach out to Mayo clinic for a second opinion waiting to see if they’re willing to see me or not the only reason mine is diagnoses AIED and not possibly the same thing you have is it because mine went bilateral so when it went from one ear to the other they decided it was AIED I’ve never heard of what you’ve been diagnosed with. I was really looking forward to maybe learning Spanish that was probably gonna be sign language. I do have tinnitus as well in both ears in the beginning it was pretty bad they convinced me to do the sound therapy, which when you don’t have tinnitus it’s really easy to suggest what to do the hearing aids. I did get hearing aids right away to be proactive because it does take a while to get them. You got to make appointments to get fitted for them and make sure they set them up appropriately. They do have features in there for sound therapy for brown or white noise or various things to help you get through it. It’s kind of cool is I do the Bluetooth through my hearing aid so I can answer my phone and it makes it really easy to hear what it will tell you about the hearing aids and this comes from me and several other people that I know with them is they don’t help with clarity so you can make things louder and sometimes it can be really uncomfortable, but things still some kind of fuzzy . I was actually going to reach out to my audiologist to see if there was a different type of hearing aid that might be better for clarity, but like you, I’m trying to be optimistic and you seem very optimistic in what you wrote I could be worse, right not sure why it’s happening to either one of us have been told it’s really common in middle-aged women that are type a personalities and people pleasers, which I am that type of person and. I can tell you it’s been a crazy roller coaster right now. I’m trying to wean off the prednisone to see if I can handle how it’s going to be and then maybe stay on the methotrexate. I’ve also gotten mixed reviews on reaching out to let’s call it functional medicine, which is a doctor that would give you like lots of supplements that’s a zoom class a B 12 vitamin D but you’re not supposed to have anything comes from an animal no alcohol drink water which sounds totally boring. Not alone in all of this I am finding based on this Maio connect which I think is amazing because I hate social media and I got kicked off Facebook twice. Just trying to get on Facebook to try to join a group of people with a AIED so this Maio thing is great. And the volunteers and mentors seem amazing. They reach out they connect they have resources. I’m actually very pleased with us. I feel like there’s at least somebody out there that wants to try to help so. Feel free to reach out anytime. Good luck. Keep me posted on how your stuff goes. Once you start to be enough that prednisone.

Thanks Colleen!!

Hi, Tinae!
Sorry I didn’t get back to you sooner. I have good days where I try to do one activity for an hour or so, and then I crash for a few days. I’ve been working on adjusting my expectations for myself. It will be easier once my healthcare team figures out what is happening and I can better manage symptoms as they show up. You offered a LOT of good tips. Thank you! I see my neurologist on Monday. I might have more info then.
I’ll stay in touch. Meanwhile, I’m going to crawl into bed.
Have a nice evening.
Vault

I lost my hearing in both ears similar to you except it was sudden - overnight - and did not come and go. I have perhaps 30% hearing. I was diagnosed with another auto immune disease - antiphospholipd syndrome - which causes blood clots in small veins - in my case in the inner ear. But it's very rare. I've not found anyone else with similar diagnosis on Mayo clinic or FB hearing loss groups. It's also reverse slope hearing. Ok on the hight frequencies none in the low. Is yours like that? My experience with hearing aids is very similar to yours. Amplifies but doesn't help clarity or eliminate/reduce background noise. Any noise blocks my ability for word recognition completely. The real value is the bluetooth streaming as you say. Prednisone did nothing for my hearing loss and just put me into an anxiety tailspin. It's been four years now and I'm adjusting psychologically..

Hello, so yes mine will be the high frequencies as well. I’m just starting to reduce the prednisone now looking to see how bad it’s going to actually get trying to determine if the methotrexate is working if it is I guess I’ll stay on it for now. I did reach out to my audiologist, expressing to see if there’s a better hearing it out there that’s better with clarity, I will let you know what she says mine are called Phonax. I basically try to avoid really loud restaurants and encourage the people that I hang out with to just kind of do more of a one on one situation to where I can actually hear them. I think the biggest issue has been the TV I’m not sure if you know this or not, but my hearing aids have the ability by purchasing a device which cost $250 to actually Bluetooth into my television set so if I have my hearing aids in and I walk in my house and the TVs on it will actually sync right to my hearing aids, which I think you agree with the hearing aids out of the Bluetooth you can definitely hear better. I keep telling myself it could be worse which I’m sure you do too. There’s also another device which I’m waiting for which I’ll let you know once I get it again $250 of course but it seems to your Bluetooth so if you hour are out for dinner you can sit in the middle of your table and it should pick up the voices that are in that close vicinity of your dinner Party. I wanted to learn Spanish this year. I think I have to switch to sign language just a little humor and I’ll keep you posted. If I get any more information. Hopefully you’re doing OK psychologically it’s a lot to endure. I’m sure you like I was like what in the heck is going on? Who did I make angry and why is this happening to me but again it could be worse so try to stay positive and optimistic in that light. Have a great day. Thanks for sharing and I’ll reach out if I get any more scoop.

Your hearing loss does sound very similar to me. I also have Phonak devices. I haven't yet purchased the TV Connector yet. I manage with captions which is not perfect but I get by and I can use bluetooth streaming to watch/hear stuff on my computer. Do you have the Roger device? That works well for hearing my husband when he wears it. It also works fairly well if we have a small group for dinner. But it doesn't work well in restaurants although it's supposed to because it picks up all the background sounds. Disappointing. But you're right.. we must stay positive. The sun still shines and life could be a lot worse! Thanks for your inspiration.

Hi, I have totally deftness in my left ear. It was sudden acute. I had no idea this was an emergency. It started happening during Covid and nobody would look in my ear. Finally after three months I had a hearing test and two days later was sent to an ENT where they thought that I had a Glomus tympanicum vascular tumour in my inner left ear. while waiting for exploratory surgery to see if there was a tumour, the ENT injected my ear with prednisone several times and had me on 60 mg of prednisone a day, which brought my hearing up to 90% !!! One EnT wanted to keep me on prednisone for life. I didn’t like this option for obvious long term effects on the rest of my body. As soon as I stopped orally taking prednisone and having my ear injected, my hearing went completely. This took only a month. I am currently 100% death in my left. They told me this was a secondary auto immune disorder. I was diagnosed with Takayasu’s vasculitis since 2004.
I started noticing the hearing loss in September 2021. I was 39 years old. They have since told me to keep a close eye on my right, very precious ear. Oddly enough as of tonight I feel like I’m having some hearing loss and hoping to go for a hearing test tomorrow on my right side..

Hi Amber, your situation sounds a little like mine. Mine started last July woke up like I’ve been on an airplane and my ears are both plugged, like you I went to the doctor, they told me it was either Meniere’s or vestibular migraines gave me prednisone got better and then kept going back-and-forth. Finally it went by lateral so both ears were having hearing loss, been on prednisone for about nine months slowly weaning off started taking methotrexate. Didn’t think that was working. I am now on Humira I’m probably at a 20%loss in my right ear and my left ear is probably 10% Definitely not totally deaf as of yet, but mine is an auto immune inner ear disease, where the body attacks the inner ear it is very rare. The few people that I know that have been diagnosed with it eventually end up going deaf. I do have hearing aids. I haven’t really had to wear them very much. It does appear that sodium affects it but I don’t know like with you you’re at the mercy of the doctors. Since it’s only one ear it is rare, usually AIED goes bilateral that’s how they diagnose it. I’ve also been told it happens to middle-aged women that are type a personalities and people pleasers trying to imply that it’s stress related 39 is still pretty young to be considered middle age. Not sure if you are a people pleaser or a type, a personality or feel stressed, I’m sorry you’re going through this. Do you have a hearing aid for the left ear? Does that help? You should maybe ask your doctor about a I ED or if he thinks methotrexate are the Humira woodwork methotrexate is easy to get in a pill form and insurance usually covers it. If you did go this route and they wanted to put you on methotrexate if it works which it probably will if the prednisone helped and if it doesn’t then they might try to see if the insurance would approve Humira the prednisone is the bad one obviously we both know that, again I’m really sorry you’re going through this. So your audiologist told you that you are 100% deaf. I’m assuming that means you’ve had hearing test just curious if not you should see if maybe a hearing aid would work for you at all. Keep me posted. Have a good night..

Hey Tiane,

I’m going to send you a much longer detailed response. But a few coles notes.
Funny I am totally 100% a people pleaser! Hahaha And my joke was that this must have happened because I wasn’t hearing some message or not listening to something in my life.

Sooo I was on methotrexate for 17 years for my vasculitis. Oddly enough within about six months of finally coming off methotrexate,
(recommend by my rheumatologist) is when my sudden acute hearing loss happened.
I said let’s try and put me back on it and see if it helps. It did nothing went back on it for about 6 months.
I am also on a biologic (Remicade) for my vasculitis. I did think that the day after my infusion my hearing got a little better. But we debunked that. I had a hearing test the day before my infusion, and the day after, and there was no difference at all..
I’ve had so many hearing tests in the last two years I could be an audiologist myself lol.
When I had exploratory surgery, they scraped the lining of my inner ear, and sent it to pathology. It came back, saying there was a mass amount of inflammatory cells in the tissue. This was another reason they told me it’s a secondary autoimmune disease. My ENT did tell me one day in his office that he doesn’t understand why I haven’t gone deaf in my right ear yet, and that it was going to happen. It just hasn’t caught up.. HA!!! I told him he might want to make his delivery on that a little different.
So for the last year and a half I have been holding my breath hoping and praying I don’t loose my hearing in my right.

I can’t get a hearing aid because there is absolutely nothing to amplify. A hearing aid only works if you have some hearing in that ear. I have nothing. No word recognition, and can’t hear any tones low or high. If I put an ear bud in my ear and crank it with the base all the way up, I can’t even feel it.
We did discuss a crossover system, where they would put on microphone in my left ear and an aid in my right, and when someone was talking on my left, it would send it to the hearing aid in my right. However, they are thousands and thousands of dollars and was told that it would affect the amount of hearing I have in my right ear, like muffle it. And if I go deaf in my right ear, it would also be completely useless, and I would be out thousands of dollars.. so hearing aid are not going to help me unfortunately. I’d give ANYTHING to have an aid!
I mean I was over 3 months before a doc even looked in my ear. I saw 3 different ENTs. And they all said if you would have come in the first 3-5 days and we got prednisone in there it most likely would have helped.
I’d be so curious to see now if I started taking 60 mg of prednisone a day and had my ear injected, if it would bring it back to any degree?

I’m so sorry you’re going through this too. How old are you? Such a crazy thing. I’m just concerned I’m going to also loose my hearing 100% on my right….. fingers crossed I can have a hearing test tomorrow and get some answers about this fullness that started today on the right.

Lol I said this was going to be short. Sorry!
I’d love to follow your journey and see how things go for you. And what works and doesn’t.
Definitely keep me posted.
Good night 🙂

Tinae,
I can't contribute to your situation BUT I am hopeful you will get restoration and resolution. You will keep us posted I hope. I send my best to you. There are great people in this group to keep the dialogue going with.