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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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@lsjay

I have suffered from the same problem for more than 30 years. It started out very similar to what you describe and for many years I put it down to TMJ. Even though the bite guard I wore nightly did nothing to improve the pain. I'd done loads of research as to what the cause might be. The closest I've come (and no doctor has ever even looked into my pain) to any sort of self-diagnosis is something related to the Trigeminal Nerve. Trigeminal Neuralgia (Tic Douloureux). You can find out more under NORD's website. (Sorry, I'm new and cannot post a direct link.)

My pain doesn't quite fit either TN1 or TN2 classification, but I do have MS, which I assume is the cause.I would suffer daily pain of a level 7 to 10 for days on end. Holding a phone to my ear hurt, laying on my side was (and still is) near impossible. Even if my ear didn't actually touch the pillow, my ear would hurt.

The only thing that offered relief was when I started taking Lyrica for other nerve pain. I am now on 2400 mg Gabapentin daily and that just keeps the constant pain at under a 3. Lyrica worked much better and I needed less medication, but the co-pay was too high and I had to change. My quality of life has been much improved by the pain meds, though by no means am I pain free.

I do hope some of you who posted about this same problem have at least gotten relief from the pain, if not a diagnosis.

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Replies to "I have suffered from the same problem for more than 30 years. It started out very..."

@lsjay, I noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post are not spam, so allow me to post it here.
- NORD info on Trigeminal Neuralgia https://rarediseases.org/rare-diseases/trigeminal-neuralgia/

@lsjay, you also mention having multiple sclerosis. You may be interested in joining this discussion group on Connect:
- Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Have you and doctor investigated the possible diagnosis of trigeminal neuralgia?

@lsjay Welcome to Mayo Clinic Connect. Due to the nature of your post, I'm wondering if you would benefit from joining the chronic pain group, along with the ENT group.

Chronic Pain Group

https://connect.mayoclinic.org/group/pain/

You said that, "no doctor has ever even looked into my pain." Can you tell me more about that?