I’ve had two episodes now of hearing loss. Both have come on suddenly and both were associated with vertigo, nausea, and vomiting. In the right ear, which used to be my better ear, I now hear better through the bone than through the ear. I’m learning how to manage these symptoms and also how much the MDs do not know, even at the major teaching hospital in Oregon!
It is especially interested that this disorder is little understood and falls in the gap between ENTs and rheumatologists.
I am especially interested in knowing if anyone has had hearing return with the start of biologics? Did you have to get on biologics within a certain time frame? Thanks for your help.
Hi Laura,
I haven’t had the hearing loss yet, but the ringing in my ears is sometimes enough to drive me mad. It scared me when someone on this website said they had severe ringing and all of a sudden they had some temporary hearing loss! Of course, it makes me wonder if that’ll ever happen to me–I don’t know how common it is, but it’s disturbing knowing the ringing could lead to that!
I get mild vertigo quite often, and had severe vertigo a couple times which caused me to stagger and get nauseous, etc. I guess it had something to do with my ears. I hope to take some time to open the link you shared to maybe get some advice about the ringing problem.
Thanks for posting this!
What @Grandma_J just posted is way too familiar to me for comfort… I never put these things together like this… the ringing is just always there and the vertigo too… getting worse and then better…
I read the first post and thought hmm that’s not me… but now… Another thing to worry about… I’ve had the feeling I would be going deaf someday for all my life… always thought I should learn sign language just in case… (Braille interests me too but never in the you should learn it way)
Thanks, @GrandmaJ, @ Cynthia. No other replies, so I think this is a very rare condition in our group. In fact, my rheumatologist said that Auto Immune Inner Ear Disease is very rare. Of course, I think it’s so rare because they can’t test to diagnose it and don’t know how to treat it, except with standard rheumatology treatment. Sigh.
Hi-sorry you are having that symptom! I did have hearing loss for about 3 days several years ago that seemed to be related to high doses of aspirin. I hope you can get on a biologic soon and that the first one will be the one you need. If not, hang in there and try something different. Sometimes it takes a while to find an effective match.
@Laura108
Just wanted to check on you. I have hearing problems and ringing in my ears too. Have you started a biologic yet? How is your hearing? Any improvements?
Hi, AngieB. Thank you for following up. I was on Humira for four months. Unfortunately, it made no appreciable difference in either my hearing or my pain. With the doctor’s blessing I discontinued it.
We had been thinking that it was possible that I had an Autoimmune Inner Ear Disease (AIED), but Humira didn’t help. In fact, during the trial period my hearing got significantly worse in spite of other standard treatment (steroid injections into the inner ear). So, my hearing problems are probably not autoimmune mediated but more likely due to a virus.
I have been diagnosed with a problem in the Meniere’s family of inner ear diseases, probably what is known as Vestibular Migraine, though I rarely get headaches. Many things, such as airplane travel, altitude, dehydration, hormonal changes, and certain foods can trigger the symptoms of vertigo, nausea, and vomiting.
I’ve been on an elimination diet, testing foods. I haven’t had an episode for about two months now. Hooray! But, soon I will take an airplane and then live at 8100 feet for three weeks. I’m a little nervous. I feel quite sick when I have an episode and it takes awhile to recover.