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DiscussionExtreme outer ear pain: What can it be?
Ear, Nose & Throat (ENT) | Last Active: Aug 8, 2023 | Replies (402)Comment receiving replies
Replies to "This is what I know that happened with me. Mine started about six months ago, but..."
Definitely not crazy! Definitely not in your mind! Just thought I'd give you that bit of support.
I also have nocturnal excruciating ear pain episodes intermittently for years. I thought I figured it out when I read about relapsing polychondritis. I had a rheumatologist at the time and I presented it to her. She did not want to even consider it unless my ear was very damaged from the condition. I suspect part of the reason is the treatment of choice is long term oral steroids which creates all sorts of complications on their own. I suspect physicians prefer to offer palliative treatments such as pillows or lidocaine rather than high risk corticosteroids, unless you have a very advanced case.
I am a retired medical person, so I have some working theories as to why this even happens. Embryologically, the ear and the kidney have similar beginnings. I have a condition called idiopathic hypercalciuria (IH) which makes me prone to kidney stones. I recently had a high protein red-meat meal which put me at risk for making oxalate kidney stones, and I had an ear attack that very night. I normally do not eat this type of food so my body was not really used to consuming and digesting it. Someone else mentioned having relief from the syndrome after a colonoscopy. So that puts a connection to the GI tract out there.
So IH is just a variant and it is not particularly uncommon and not necessarily associated with diseases (although in some cases it is). People with IH tend to readily absorb calcium from their guts compared to the rest of the population.
Just putting a bunch of facts out there in case there's someone who can put it together (hint:medical researcher) and come up with a testable hypothesis as to the cause.
My guess is that it's dietary on top of a predisposition to certain mineral metabolism-based genetic variants, which may very likely include IH.