You have TN at both sides too?
I started left. About 12 years ago.
That's also when my rosacea took it up a notchor two. Also starting left. But right overhauling left very soon. 
Yep. mine started about 35 years ago. I thought it was toothache for about 10-20 years cos it was almost always in the jaw. My dentist said it was neuralgia but i thought that was just a fancy word for toothache, especially for one that couldn't be explained nor treated
. I got a fancy word in lieu of the extraction I begged for.
It's "atypical TN" Atypical in stating at an unusually young age (early twenties in my case) and also atypical; in affecting both sides of my face. It's also my head, cheekbones, ears, just about everywhere the trigenminal nerve reaxches nowadays, but not usually everywhere at once.
Interestingly, atypical TN can be an early sign of MS. i don't have MS, but I do have a nameless hereditaty mitochondrial disorder with very similar symptoms to MS. (I've compared notes with a friend who has MS, and we have numerous identical symptoms. The main difference seems to be that I have more symptoms, mine started much earlier ( given that autism, dyslexia, syspraxia etc are supposed to be early symptoms, present from birth more-or-less) and mine has progressed more slowly. He had no symptoms at all until his thirties and is now extremely disabled, much more so than myself.
I am therefore not surprised by research that suggests thaty MS is caused by mitochondial disorder. And I'm piossed off with my neurologist who treats the TN as an entirely seperate issue.
Mind you, I haven't seen her in a while, and I've inly recently noticed that various other (more recently emerging ) symtoms such as involuntary muscle spasms, fatigue, musle cramps. seizures, brain fog, tend to be accompanied by TN. I do often get TN as a stand alone symptom., but I think that's just because it;'s the most common symptom of the lot. I seem get that nearly 50% of the time nowadays, amnd i've trained myself to ignore it if it isn't too vicious. The thing is, now I've become a bit more observant of this stuff, i see that symptoms kicjk in in a particular order, wehich matches their order of first appearance . TN falls into a little group that kick in 2nd, after (or concurrent with a deepening of my autistc traits) . Brain fog comes into that. same cluster, i think...but my brain has to get extremely foggy before it actually recognises that it's foggy *chuckle* ., so that doesn't normally register til later. I've managed to come up with with five semi-discrete stages , the fourth stage being various kinds of fairly dramatic seizures the fifth stage being a sort of "post-ictal" stage, I think.
If I'm lucky, and if I'm I'm sensible (eg by immedfiately resting/eating/getting out of the cold or t getting away from whatecver else might be serving as a trigger) that cascade of symptomns stops at stage 2, and used to nearly alwats stop at stage 2, when I was younger) which is how come stage 2 can pass as a standalone thing. But it's clear to me now that it isn't. It fits that pattern too neatly.
I'm going into detail here cos I think it might pay you (and a few others here) to take note...and take notes (of your own symptoms) There might be bugger-all in the way of help from the NHS for this thing (discounting toxic anti-seizure meds- if you call that "help")but an understanding of it has helped me enormously in developing effective self-help stategies. A few years back, my life just wasn't worth living, cos i didn't know what the hell was going on, or what to do about it, and I was in stage 5 most of the the time.(weak as a kitten, sleeping almost constantly, unable to think straight, etc) I'm cping much better now, and enjoying life more, even though my health is progressively more fragile.
I'd hate to see anybody else end up quite so sick and so clueless. But these mitochondrial disorders are pretty common amongst autistic people. So it worries me when you guys report similar symptoms.
