Greetings to you all courageous people,
Lo and behold yet another new member seeking to share answers, find relief and solace. Although I might not become a frequent participant due to dealing with a busy schedule consisting mainly in job, chores and daily activities - as well as social activities whenever or if ever I get my life back - I joined this site to share my story, like many others. Who knows, perhaps it might be helpful to someone or provide hints toward an eventual relief or cure. Any feedback is welcome. Thank you in advance for your attention and empathy.
This message comes to you from Southeastern Quebec, very near to the State of Vermont. My nickname could also have been Electric-Bookworm… Not only reading is one of my main hobbies, I also have been working at a bookstore for 27 years as well as being among the privileged few novelists whose work has been published - so far, a trilogy of non-fantasy medieval fiction (in French). I have been working on a new similarly-themed novel in progress for a while now, but it has become more difficult for me to write between the daily grind, other occupations and… trigeminal neuralgia, which - as you all know too well - completely shoots down not only one’s social life, but inspiration as well as neuralgia takes over everything.
The first episode of TN occurred for me in 2010, soon after the third volume of my trilogy was published. It lasted a couple weeks, in a very stressful period of my life when I had to hold a stand at a book fair and talk for hours with that then unknown pain, while some major changes were also taking place at my job. Eventually, the pain subsided for a year or so, and I went on with my life. It came back in 2011, and more frequently since; I noted that it had a tendency to occur more in wintertime and/or in more stressful periods. There has been a respite from January to September 2015. I had a painless October, then short 2 week breaks before it started again. From November 2015 et April 2016, the pains remained to the level of “initial shock” only, small zaps localized to the upper lip and palate - so none of those 30-second to one minute-long episodes starting with several shocks, then a buning sensation up to the cheek.
It always hits on the right side of my face, from the middle branch of the nerve, and affects my upper lip, nose and cheek. The trigger zone is located at the gumline, beneath my upper lip, at the level of the canine and around. My dentist has found nothing wrong with my teeth and I wouldn’t fall in the trap of going into unneeded dental work as so many desperate people have done.
So like most of you, their disturbances occur whenever I talk, eat, drink, try facial expressions, pinch my lips, blow my nose, brush my teeth or otherwise touch my face; the outside cold air also triggers pain.
Since 2010, I took the time to investigate about TN on the internet and my findings about conventional medicine are discouraging enough for me to want to avoid that venue (forgive the absence of specialized vocabulary here) : endless and useless dental work, hopping from one clueless doctor to the next before being referred to a neurologist who will test and test and test me to make suer I don’t have multiple sclerosis (by now, after 7 years, the disease would be quite severe so I don’t have it) or a tumor; then they’d put me on anti-seizure drugs like Tegretol that, if they’d work at all, would turn me into a zombie and scrap my liver; I’d become dysfunctional enough to have to quit my job and give up writing as both require lots of intellectual effort and attention (and I have ADHD). I really don’t wish to go that way and see doses gradually increase as tolerance sets in, knowing that drugs are only a plaster, that they solve nothing. Another option: the trauma of an invasive surgery, traumatic to the body whether we want it or not, to get a small teflon sponge to separate the nerve from blood vessels: most testimonies I have read (and heard) state that the blissful relief only lasts 5-7 years until it needs to be redone; third and fourth options: the insensibilisation of the nerve or gamma knife, which caries the risk of losing all sensitivity to the affected area, making my face feel like cardboard, or worse, stuck with a dull, permanent pain - against which nothing can be done any longer as the nerve is forever severed.
So, I started seeking alternative solutions, being careful to prune the one too-many so-called miracle cures (from yoga - yeah, right, like you can meditate while having lightning bolts through your face every two minutes - to this $1000 wave machine). Some ideas might be worth checking, like cannabis or capsaicin. I was starting to pinpoint a chiropractor when a friend at work mentioned an osteopath, whose approach is a bit milder, while the goal is similar (the realignment of the skull, etc.). So last April, I went there for a first consultation, while all I had was an occasional but daily local zapping of the upper lip and nose.
Back in 2010, I had thought that the pain had been caused by a tic I had developped in my early teens, which consisted in nibbling pen caps with the right teeth… until the osteopath only touched my face and asked: “did you have an accident?” Oh… right, how could I have forgotten? At age 16, some kid with a wooden sled didn’t wait for me and my cousins to clear the path before stupidly throwing himself down the icy slope: I got hit so hard that I nearly passed out. We went back home as I fought nausea… fortunately, nothing was broken, but my cheek went from purple to blue to green to yellow for weeks, then it healed and all was well… or so I had thought. My cheekbone had been moved and the osteopath worked hard to straightened everything out in a surprisingly painless process.
After the second appointment, my bugging pain was gone. And for the next eight months, I thought I had gotten rid of TN for good.
Until this winter. I cought two colds in a row and a very discrete tingling in my nose came back. I made nothing of it at first, thinking that frequent nose-blowing and the dry air from heating systems had irritated my nostril… until the zaps to the upper lip came back. Then quite suddenly, a couple days after, on Wednesday the 25th of January, the searing pain came back with a fury. That was two weeks ago, the flaring violent electrical shocks to my cheek that would literally make me jump were back after nearly two years. It is even more depressing than if I had had no remission at all. The osteopath said that it wasn’t impossible to experience such a relapse if my sinus got infected: since my nerve had been in lesion for so long, perhaps the whole area might be more vulnerable for some time. So I went there for 3 intensive treatments, but the relief only lasted the day.
Sunday prior to last, I lived on a cup of kefir and a little water. The shocks were near constant, even when I simply turned my head or walked softly around the house. Until I could take it no more: I started grimacing and rubbing my face to trigger the pain. “You want to hurt, then GO AHEAD, HURT!” And I screamed in blindening pain. I had decided to stop bracing myself against it and run across the no-man’s land instead. Everytime I did that, the pain gave me a few minutes of blissful breaks - probably as dopamine coursed through my shaking body, and then I could drink a bit and say a few words until the next pain.
From then, the pain seems to diminish on its own. It is very slowly becoming more manageable with every passing day. The shocks aren’t as acute and the burning doesn’t last as long; since this Saturday, I am experiencing very frequent throbbing twitches that send very brief flares up my cheek. And I still “challenge” them by touching my trigger zone with the tip of my tongue or my finger.
This week, I tried a homeopathic medicine called R70: it was suggested by a man at a naturopathy store who had experienced some facial neuralgia - no idea if it was TN or not though. I emptied the whole bottle - 10 drops every 30 minutes - without any notable change. But homeopathy seems a complex thing to deal with: medicines are highly adapted to every person, to the kind of TN they have and even to which side of the face they have it. So I guess a more specialized help would be needed there.
Tomorrow, I’ll go to a herborist and try to get some capsaicin. Not the weak 0.something concentration which is used for joint pains and which, from what some members said, seems to be ineffective, but a much stronger one. I have read at two different places that a level of 10% is the most effective to “disturb” the nerve fibers responsible for the pain signals. Have any one of you heard about this? If not, I can retrace the youtube video I found about it (the other reference to it was a text somewhere on th net).
So that’s where I am at now. If the capsaicin fails, my next attempt might be cannabis, if I’m able to find it as I don’t smoke, so it would have to be in vaping or edible form. And I’d want to give it a try before having to go through the whole tedious process of getting a permit.
Thanks for welcoming me, everyone, and I pray that we’ll all be able to get rid of this living hell. And if we do, we can all meet at a pub and celebrate with slate-hard nachos and three-inch thick sandwiches to eagerly bite in without anymore fear of pain!