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Extreme outer ear pain: What can it be?

Ear, Nose & Throat (ENT) | Last Active: Aug 8, 2023 | Replies (402)

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@becky65

I have Autoimmune Inner Ear Disease. My otolaryngologist is pretty much at a loss with me. He sent me to another doctor at West Virginia University that specializes in this, but he couldn't help either. He prescribed Nortriptyline (Pamelor), but I had an allergic reaction and had to stop. He then said to just wait it out and see what happens. He thinks my migraines trigger my ear pain, but it's actually the other way around. When my ear pain gets real bad, it triggers a migraine. I know that steroids and methotrexate can help, but I am already taking both for pulmonary sarcoidosis. These meds aren't doing anything for my ears. I still have a lot of pain and issues with my hearing. Sometimes it's hyperacusis, sometimes I have a lot of problems hearing anything. My ENT told me that eventually I could lose my hearing altogether. Does anyone have any suggestions to at least help with the pain? Thanks.

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Replies to "I have Autoimmune Inner Ear Disease. My otolaryngologist is pretty much at a loss with me...."

@becky65 Welcome to connect we all try to tell what helps us Is your ear pain inner ear or outside of ear?

Hello @becky65, I would like to add my welcome to Connect along with @lioness. I know it must be frustrating not being able to find something that works and being in pain a lot with no answers. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where other members are discussing similar symptoms and your post will have more visibility.

> Groups > Ear, Nose & Throat (ENT) > extreme outer ear pain
-- https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

I had not heard of hearing being attacked by an autoimmune disease but a little searching confirmed that it can happen. Here's what I found on the American Speech-Language-Hearing Association website.

Autoimmune Inner Ear Disease
https://www.asha.org/Articles/Autoimmune-Inner-Ear-Disease/

Are you able to share a little more about your diagnosis or symptoms?