My trigeminal neuralgia of the right V2 branch is directly related to multiple sclerosis. For several years I’ve been nearly pain-free on a regimen of only 300 mg Trileptal (oxcarbazepine) taken at bedtime. On the occasions when I would feel sensitivity growing, I would take an additional 150 mg at that time. I would have hellish attacks when I let my blood level get low by not taking the medicine, hoping I might be in remission, which has not been the case for three years.
On November 7, 2022, I had a Mohs procedure of the scalp done to remove cancer. I was OK for 2 weeks or so, but then one day I touched my nose and had an episode of electrical, burning, needle hell that lasted nearly half an hour, the longest attack I have ever had. I had a intimate understanding of why people kill themselves over this. Fortunately I was close to my Trileptal and was able to swallow a dose. I had to take it dry, so I did not know if it was going to my stomach or not, and I could not move to get any liquid. It didn’t go down fast, which is, I think, why the episode lasted so long.
For the next month I could not pronounce any words with m, b, p, because of the lip movement involved. It hurt all the time. I called my neurologist to send me tons of the Trileptal, and I was taking so much it concerned him, and when he wanted to not give me so much, I had to remind him I couldn’t live without it. I think a couple of days I took 1200 mg and even that was barely working.
For the next three months I had to wear a face mask like for COVID but to keep my face warm and protected from cold air, not germs. Finally I was able again to speak normally, and over the past 2 weeks I’ve been back down to a normal medication dose.
The neurology clinic told me that it might have been from inflammation of other nerves from surgery even though the surgery was on the other side of my head. My head had to be pressed on, my scalp had to be injected and cut, and maybe (probably) all that manipulation flared up everything in my head.
I was told that any kind of major stress can make the TN flare up. It’s a warning to me, let it be a warning to you to watch out for flares of pain after you have even unrelated surgery.
I’m sorry you had to go through that. I also wear a mask for warmth and usually wrap a thick scarf around as well. It’s a fine balancing act between keeping my face warm enough and not irritating it with the pressure from the mask.
Any way you look at it TN is pure hell. I had a MOHS facial surgery 2 months ago for a skin cancer on the same side as my TN so I advised the surgeon of that and he didn’t seem concerned over it. The surgery went good with no affect to the TN. TN is weird, what can affect one like in your case doesn’t affect another. I fully understand what you went through.
I was treated with Gamma Knife back in 2000. It worked extremely well in my case, then 10 yrs later it came back with a terrible vengeance. Then they gave me a Cyber Knife in 2010. I still take Lyrica 2/75mg/day, but otherwise function well. Episodes are mild compared to before and last briefly.
Major Stress are the key words. Finding ways to releave your Major Stress is what will work for you. I have found that MJ helps. I also found that Viagra also works. I have had TN for 15 years and I have tried most options (except surgery) You need to keep trying to find what works for you. If it’s warmth, then so be it. I also use a CBD oil spray in my mouth if it occurs when I am trying to go to sleep. Good luck, I hope my input helps
Michael
I have never heard of a CBD oil spray. Does it kind of numb the inside of your cheek? I have had this for 20 years and generally it is kept up be with gabapentin and Trileptal combo but occasionally like the last three weeks, it just flares up and nothing will help.
Teri,
My apology, I should have said Valium (not Viagra), MJ(vaporized), CBD Oil Spray. (no, it does not numb) it relaxes, I spray it on my upper and lower molars. (That spray is now available everywhere). The most effective is Botox injections that my neurologist now provides once every three months. I am currently also on Trileptal.
Good Luck, remember major stress are the key words.
Michael
Does the CBD oil spray have added THC in it?
I wondered about Botox, my friend and I get a couple zaps of that in the forehead and she gets it in the hairline for migraines. I go to a dermatologist tho so I will ask my neurologist about it. Reducing stress forget about it. My job is 100% stress… 
I will look for the CBD spray tho.
CBD oil can come from two places either hemp or MJ as far as I know neither one adds THC. MJ derived CBD oil does contain some THC but certainly not enough to get high. Sprouts Grocery as well as many other retail outlets sell it freely. I think reducing TN pain should be the objective.
Thank you for your reply Michael. Living in Toronto, Canada and taking a CBD oil which has 10 mg of THC, 15 mg CBD, and does nothing for any of my pain…I was just wondering about the spray.
Dianne
Thanks for the tip on the CBD spray at sprouts. I thought you had to go to one of the pet shops around here and get it… I was looking on a couple of the places for it, and all I could seem to find it was CBD oil so I will head over to sprouts. I noticed that you only took Trileptal so the CBD spray and the Botox replaced your gabapentin which I would love to do… I’m really interested in the Botox and wondering if my neurologist would have to do it or if my dermatologist could as I know she does it for my friend for her migraines. Where do they inject the Botox? I’m curious and it doesn’t interfere with any of the jaw muscles? Thank you for all the great information Michael…
Teri,
What state do you live in?
The Botox injections are once every 3 months and they are inter-muscular not skin level that a dermatologist uses for wrinkles. It is also cumulative so 6 months is needed for the real effect. Botox is only approved by Medicare for migraine headaches and as such is not approved for TN. The Botox injections are in my left side of my face in both the upper and lower molars and neck. No, it hasn’t affected my jaw.
I got my CBD oil online, I generally only use it at night, during the day if I have to use MJ vaporized or valium because the CBD oil interferes with tase of food.
I used to use Gabapentin, but I found it messed with my head.
Michael
Hi Michael
Thanks for the info. I am I Southern California.
I sure understand that. If the mask or scarf has an edge across the nerve, or if there is too much pressure, look out!
I am so glad your Mohs didn’t cause a flare. But the Gamma Knife - I’ve heard that story from more than one person. On that basis, if it is offered I will decline. I can feel your pain in my imagination; I am sorry it went that way for you. I haven’t heard much about cyber knife. It’s awful that you have even short episodes.
As soon as medical MJ became legal in this state, I got my card. Too bad, it does not work for me to relieve the face pain. That’s probably because mine is a direct result of multiple sclerosis and the nerve or the part of the brain that controls it is damaged from demyelination or degeneration. I am happy it works for you; I would much prefer something natural rather than a chemical.
“Nothing will help” - those are scary words. I just kept swallowing Trileptal until the pain wasn’t breaking through. It still hurt to talk and eat, but I could function. I hope you don’t have to go there again.
I was wondering how Viagra helps, increasing the blood flow maybe? Valium I understand, and I am thinking of asking the doc if I can try that. I’m not laughing at the mistake; on the contrary. Some women take Viagra for that very reason, to increase blood flow. Women who constantly miscarry their fetuses are sometimes given Viagra to increase blood flow to the uterus. I just thought maybe it had a place in TN treatment that I didn’t know about.
An expert friend of mine says get the CBD spray from a licensed dispensary, and stay away from the gas stations and head shops and hippie stores. You will pay more but get a better quality, he says.
RE: Gabapentin
I’m not that sharp nowadays anyway, but taking that made me just plain stupid, so I quit.