I know at least one other person on my friends list has suffered from trigeminal neuralgia, and at least one other from glossopharyngeal neuralgia...
I have intermittently suffered from both since not long after my cancer began, over a decade ago; and much more frequently since my spinal and peripheral nervous system injuries 5 years ago... As my cancers get worse, my neuralgias get worse, as they cancers cause inflammation, swelling, and impingement on the nerves in my neck and face.
If you are unfamiliar with these two issues, look them up. They're among the most painful things a human being can experience. Thankfully my experiences with both have generally been relatively mild, with the worst episodes lasting less than 12 hours, of a few seconds to a few minutes, a few time an hour.... and most being much less severe than that.
The best I can describe it... Its like being stabbed by a red hot needle made of lightning and coated in liquid nitrogen ice, repeatedly, and deeply, inside your jaw, ocular orbit, cheek, and tongue... and sometimes down into your neck.... and the lightning makes your muscles seize and lock, or spasm repeatedly, including sometimes making your jaw snap shut then open frequently.
However, this time around the glossopharyngeal neuralgia has been particularly bad... Enough so my care team was suggesting surgery to literally burn out the nerve junction to my tongue to prevent me from biting through my tongue again (I've bitten cleanly through a portion of my tongue twice during the facial seizures caused by these neuralgia).
We are currently trying a last ditch combination of drugs that sometimes work for some people, to prevent these seizures, and generally reduce the frequency and severity of these neuralgias... They only work about 20% of the time, but its better than risking permanent partial facial and tongue paralysis or reduced mobility...
...And in my case, it seems to be working...
The drug combo is a maximum tolerated therapeutic dosage of a combination of gabapentin, amitryptilene, and nifedipine. Two of them in combination helped a little bit, but all three of them combined is DRAMATICALLY reducing the frequency, duration, and severity of neuralgia attacks.
The trigeminal neuralgia is almost completely gone... maybe a few seconds to a few minutes a couple times a week right now... and the glossopharyngeal is DRAMATICALLY reduced.
It had got to the point where it was happening almost every day at least a few minutes a day, and some days it was going on for hours and hours, every few minutes, to the point where I couldn't sleep, but was so exhausted I couldn't wake up. .... And so long as I remember to take all three in the proper dosages at the proper times, it's barely happening at all. Whereas if I miss a dosage of one of the drugs. I WILL be quite painfully reminded of it a few hours later.
But hey... it helps... a LOT... and its not neurosurgery on my face... so win win, and hopefully this can help someone else too.
