@hyke,
Hmm somewhat different from me then, re, the tooth connection. I used to go to my Dentist with TN, because, for years and years, I thought it was tothache. This was before the internet, and i had never heard of TN. Upshot is that most of the affected teeth were checked, X-rayed and pronounced healthy. The TN attacked the teeth one by one, The TN attqacks would typically last a few weeks then stop. Some weeks or months later I would get an abscess under the now completely painless tooth, or else it would start to crumble . My dentist sometimes made strenuous efforts to sqave the crumbling teeth , but these were never effective. The tooth would continue to rapidly disintegrate, even to the point that some of them didn't need extracting. It was easy to prise out what was left of the root for myself.
To be fair, my dentist did say I was suffering from neuralgia, and that I should see my Doctor about it. However, i thought that neuralgia was just a fancy word for toothache, didn't I? Especially given that the affected tooth would ecventually go bad, seemingly proving my point. So I would go to my GP and say "I have an agonising toothache..." and my GP would say "Go back to your dentist" . On occasion I managed to get a prescription for painkillers from one or the other. (The over-the-counter stuff wasn't helping much at all).
Eventually , a lady dentist sat me down and explained to me the difference between TN and toothache, so I went back to my GP and said "I have Trigeminal neuralgia" . Wow! I didn'y know there was such a thing as a magic word, but there is! My GP;'s attitude was entirely different from then on. I was prescribed very low dosage amityptilene which was actually effective, but had the side effect of making me sleepy. I used to be naughty and only take it when I got an attack of TN ( instead of all the time, as I was meant to) Eventually, the dosage needed to be increased at which point I stopped taking it at all, because side-effects were too drastic.( I always seem to have that issue with psycogenic drugs. My brain totally over-reacts to them, if affected at all)
By this time, i'd just about lost all my teeth anyway and The pain was now affecting other parts of my face and heaad, but was misdiagnosed as migraine, ear infection etc.
It was a big disappointmnent when the last of my teeth were extracted, because the pain only became more extensive and more frequent , rather than better. I'd been looking forwards to the day when I lost all my teeth, since my mid-twenties, imagining that would be an end to the pain . (Yes , I knew by then that extraction doesn''t usually cure TN, but I remained hopeful that in my case it would)
Also, to my immense susprise, I continued to get the continuous dull ache in my jaws which I'd carried on believing was actual toothackhe, because I'd read online that TN constituted bursts of agonising stabbing pains. Obviously the dull ache must be something else. But no, atypical TN can cause a whole range of different kinds of pain, as my GP explained to me belatedly. And I do get that whole range, nowadays. Well, if you count those other pains in, I now suffer TN more than half the time, but when it's mild-ish like that , I rarely notice I'm in pain, I'm so used to it now.
To my mind, the abrupt cessation of those agonising pains , followed- after a pain free interval- by rapid loss of a "perfectly healthy tooth" (according to dentist) very much suggests to me that the decay/abscesses were caused by nerve death, not vice versa. I learned to accurately predict which tooth would go next , according to the site of the pain, but I never, ever managed to persusade any dentist to pull any of them them out, not until after they stopped hurting, because no damage was ever apparent until after the pain stopped.
I got totally sick of dentists and stopped troubling them , in recent years. I just let the things decay to the point where the next dentist was sure to agree to extract the whole lot. Not that said extraction helped the TN (made it worse) but at least that's an end to enduring needles in my gums. I am teriffied of needles, especially in my mouth, so the whole freaking story has been an ordeal.
Well, it remains an ordeal ofc, but an ordeal minus needles, and minus spitting chunks of tooth out of my mouth, which is much nicer.
-Walkie
