After 2 years, finally, I have an actual legit diagnosis!
Two years ago, I assumed (falsely) that a lot of my ear pain was due to TMJ. And that a lot of my throat pain was post nasal drip. I mean, those are reasonable assumptions. I *do* have TMJ, was dx'd back in around 1977. And I have allergies, and sometimes the throat burned like PND. So - logically, those pains seemed to me to be the more mundane causes.
The neurologist dx'd me as atypical facial pain. A year later, I mentioned that I thought the symptoms better aligned with geniculate neuralgia (I was thinking in terms of the nearly constant pain deep in the ear.) He bs'd me and said they were basically the same thing and both involved the nervus intermedius.
I knew better, and my faith in him was eroded, but he was prescribing appropriately. I knew, though, that if the meds stopped working, he was not going to think there were other options.
Then I ended up seeing a neurosurgeon for an unrelated thing, had shoulder pain that turned out to be from my neck, and after trying other things, needed cervical fusion. At my last post-op, I decided I would be brave and ask his opinion on this other little problem - which, btw, had been growing worse over the last month or so. A lot worse.
So, I told him my symptoms, and he said, "I'm thinking glossopharyngeal." He sent me for an MRI, and had them focus particularly on the 9th, 10th, and 11th cranial nerves.
Went back to see him yesterday and - yep, it was confirmed, there was a blood vessel playing footsie with the 9th cranial nerve. (Okay, so he didn't put it that way. I'm embellishing on that.:-D )
He upped my dose of Lyrica (to 300mg; it had helped in the summer, but was not doing much now) and wants to see me again in a month. If Lyrica doesn't help, surgery is an option.
I can't believe how happy I was walking out of his office. Which, in some ways, may sound crazy. I mean - if meds don't help (and I am honestly dubious - my dose was upped a few weeks ago to 200mg, and nada - but I would love to be pleasantly surprised) this means a really scary brain surgery, right? So why am I happy, right? Only - options. Possibility to get rid of pain!
In August I was kind of cursing my shoulder for acting up, and singing the praises of Lyrica because it dialed my pain down to a manageable level. Now, I am kind of oddly thrilled that my shoulder pain led to this!
Silver linings everywhere!
I hope you all are well.