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Anyone out there with Autoimmune inner ear disease (AIED)?
Hi - I have been on an emotional roller coaster for the last year since my diagnosis of AIED. Just looking to see if anybody else out there has been diagnosed and how they’re dealing with it. Thank you.
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Hello I’m sorry to hear what you’re going through very strange that getting your ears cleaned after 20 years would suddenly cause you to lose your hearing in one ear. AIED it’s very hard to diagnose. Let me explain what happened to me first last July I woke up in the morning with both ears plugged thought it was odd so I had called the doctor thankfully got in they basically put me on prednisone hearing came back couple months later same situation kept getting progressively worse till I had a complete blockage on one side. Initially they diagnosed me with Ménière’s disease, but once it affected both ears, the audiologist determined it was more than likely. AIED, which is a very rare auto immune disease that affects mostly middle aged women. I’ve been on prednisone methotrexate and Humira trying to reduce the inflammation so I don’t lose my hearing completely at this point. It’s OK but it’s going to get progressively worse. During all this with all the blood tests and everything my NRA was a 1.5 which is nothing anybody at my age which is 57 can have a low number. I have a friend who is at a 3.5 and does not have an auto immune disease, so yes, you can have an auto immune disease even though your blood doesn’t show you have one. Seems like getting your ears cleaned after all that time caused the problem which is strange. I have other friends and get their ears cleaned and have for years with no issue. The Tinnitus is a result of the hearing loss. I also have that. That is just something you have to learn to tolerate. Have they put you on steroids at all, the downside to some of this is if you don’t get medicated quickly, it’s hard to get your hearing back. I can tell you that my ENT just gave me a shot of steroids in my ear, which is a little painful to see it could help it at all , your hearing loss is actually worse than mine with what I know so far I would probably say it’s not AIED but you should ask your doctor. Is it getting worse or is it stable and you said this happened in April 2021? I’m not a doctor if this has happened since April 2021 and it’s not getting worse you’re just at the spot where you have hearing loss you probably need to go to an ENT if you haven’t already get a hearing test possibly get a hearing aid if you need it get a little training on Tinnitus therapy which is sound therapy. I really don’t think it’s AIED. I hope this is somewhat helpful. Please keep me in the loop with what’s going on if I get any other scoop or come up with anything else. I’ll definitely send a message. I’m sorry again you’re going through this hang in there.
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1 ReactionI noticed a change in my hearing with my last flare of psoriatic arthritis. Revisited my PhD audiologist and her tests confirmed additional deficit.
She adjusted my hearing aid settings.
Fortunately I have good contact with my rheumatologist and a burst of prednisone seems to have turned it around. Prednisone is likely the most effective drug in
acute autoimmune hearing loss.
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1 ReactionPrednisone is what they give most people temporarily to kind of restore it. Unfortunately, we can’t stay on it very long glad that it restored it for you.
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1 ReactionHi Boldt, just looking to see where things are going for you know I ended up getting a shot in my left ear of prednisone, which was somewhat painful and in talking with my ENT I am to going to see a neurologist now because there’s a slight link between hearing loss and migraines that I’ve been a migraine sufferers since I was 14 still going deaf, but kind of curious where that’s gonna go. I’m doing fine I don’t really need hearing aids just dealing with the fluctuation and the tinnitus.
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1 ReactionSorry vault I spoke this and it put Boldt in by mistake!! I need to learn to check before I hit. Send.
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1 ReactionHi, Tina’s!
Sorry it’s been so long for me to answer, but my 100 yr old father-in-law died, and we’ve been preoccupied with family, etc. I have an appointment today for a SFEMG (single fiber electomyography) to rule out ocular myasthenia gravis, and on Friday, I have an appointment for hearing aid consultation. Now that I’m aware that I have moderate hearing loss, worst in the low range, I understand why I can tell my husband is talking to me, but I can’t understand what he’s saying. He was thinking that I wasn’t paying attention to him, or that I was tuning him out! Big problem. I also read that hearing loss leads to dementia. Yikes! Some hearing aids can help with tinnitus. Anyway, I’ll get back to you after my appointments. I’m glad you’re going to see a neurologist. One of my neurologists works with a group who research migraines. Good luck!
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1 ReactionHa ha. My spell checker changed tinae to Tina’s!
I've read a couple articles about the connection between hearing loss and dementia, and then just today read another article about a connection between loneliness and dementia. All of these thought the real culprit is social isolation. Makes sense, people with hearing loss get isolated, just like you've been talking about. Bless him, my husband was super supportive but wow, my brother was completely convinced that I couldn't hear him because I didn't want to or that I wasn't paying attention. At the time, I just retreated more in frustration. But after years with hearing loss, I can say that paying attention to understand speech is a huge effort, and it's exhausting. Not sure what you can say to your husband about that, maybe our wonderful "mentor" folks can come up with links to articles about the effort it takes to understand speech when you can't hear.
So everyboady keep posting so we don't get isolated, and then get dementia!! Yuck.
I want to add something positive. I do understand how traumatic it is to think you're becoming deaf. I totally get that. But I really want to tell you, don't be afraid of cochlear implants. They're spectacularly good on speech recognition, especially if you get them soon after losing your hearing. Not trying to say that they're a miracle, or perfect. But when your speech recognition is down to 40%, you're not getting much out of any conversation. An implant can probably get you up in the 80% range very quickly. They come with Bluetooth and telecoils built in, so you can hear really well on the phone, stream movies and podcasts, and use a mini-mic connection to hear audio from your computer. A cochlear implant can be a great help.
Thanks Becky, for sharing that I can tell you that I am struggling emotionally right now. Things seem to be going south very quickly here. My concern right now is the meds are not working, so I’m probably going to go off of the methotrexate and the Humira I’ve been on prednisone for nine months which you and I both know it’s got to go. How quickly is this going to turn? Am I going to be able to work and I’m going to to walk up, right? Will I get super dizzy and not be able to walk that’s kind of my struggle right now.