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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
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 🙂
Replies to "Hey Tiane, I’m going to send you a much longer detailed response. But a few coles..."
Hi Amber - 1st of all I am shocked that you were on methotrexate for 17 years went off it at your doctor suggestion and lost your hearing. That seems insane to me and that when you went back on it you’re here instead gone I am so sorry. So I have been on prednisone for about nine months. I’m down to about 20 mg right now. I can tell the hearing has fluctuated a little bit but it’s tolerable. I don’t need my hearing aids in right now still get the muffled sound in loud areas like restaurants and you know sound sensitivity Did the methotrexate pills didn’t think it was working went to the injectables that company went out of business went back to the pills. My doctor Musta wrote a very convincing letter because the insurance company is currently approving Humira, which is a biologic every two weeks I take a shot I have one more month before we see if it’s gonna work if not more than likely, as with some of the other people had stated on here they tell you that you could lose your hearing . I wanted to learn Spanish, but I may have to learn sign language instead 😂
I am 57 years old. This started last July woke up in the morning with the fullness in there like you’re feeling I fortunately did luck out and have an amazing audiologist named Annie who was the one that actually diagnosed me with AIED off the record before the ENT did. You don’t live Wisconsin do you? Just thought I’d ask.
So curious, do you have tinnitus in the left ear, the ringing or lightheadedness, or vertigo at all?
I have the Tinnitus both ears mostly the right that’s the worst year that’s an adjustment. I also get a little off kilter so to speak if I get up too fast or I don’t even know why.
Funny story I haven’t been drinking since it started and I’m not a big drinker but I went out with the girls last weekend went ass over tea, kettle skin, both knees hit my cheek on the concrete, cut my hand. It wasn’t pretty I guess it could be worse, right.
And you saw the post regarding cochlear implants. She’s had it for 30 years. I didn’t know it was around 30 years ago but that’s at least something that we can look up to and knowing that people can have a successful, happy life with them if we get to that point.
Let me know how that hearing test went!!
Thank you for sharing!!
Hi Amber, just wanted to follow up and see what happen with that hearing test you had and how you’re doing.
They started me on Humira, but of course the left years failed now, which is probably almost gone. At this point they upped my prednisone again to see if I can get it back.
Let me know how you’re doing
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I do have AIED, and as your doc predicted for you, I am deaf in both ears. Before you have an anxiety attack, this has been going on for about 30 years. Mostly I want to respond to your comment about hearing aids when you no longer have any residual hearing.
Your situation might be a candidate for cochlear implant(s). I am now deaf in both ears, no residual hearing. However I have cochlear implants for both ears. CIs do not depend on any hearing from your ear. In effect, they bypass the various parts within your ear that create natural hearing.
It's my understanding that insurance companies are much friendlier about CIs than hearing aids (bizarre, I know), perhaps because implantation is a surgical procedure. It's bizarre because CIs can cost in the neighborhood of $100,000, while even very expensive hearing aids are more like $7000. Mine were covered at almost 100%, all I had to pay out-of-pocket was a $350 "facility fee". Find a cochlear implant practice, and ask.
Most CIs can be set up to sync with a hearing aid. CIs have a learning curve, you have to ut in some time on self-directed rehab to get the most out of them. That said, It is nice to be able to have conversations, talk on the phone, etc.