Anyone else out there have this combo? I have the numbness on both sides of face rather than chronic pain but it is still very bothersome and no meds are helping.
Yup, I’ve had bouts of TN off & on for over 5 yrs. - in fact it started around the time I also started having positive ANA tests (i’d had fibromyalgia for 10 years, but they never actually been sure whether I had lupus or not.) And like you, my TN was on both sides, which is apparently unusual.
My TN has ranged from the very worst pain I’ve ever had in my life to mildly annoying. When it’s at its worst it’s on it’s incredibly bad - fortunately I’ve only had a few periods like that. Once we found that the Tegretol seemed to really help, it go a lot easier to keep it under control. Now I don’t even have to take the Tegretol all time as a preventative like I used to, I just take it when I feel a TN attack coming on and it usually seems to hit it off and keep it from getting too bad.
For what it’s worth, I found that moist warm compresses seem to help, but I have to put something really soft over the compresses when it’s really bad. But because I can’t tolerate against at all rough my skin during attacks I use a silk scarf or something that heels good to my skin to wrap up the compress. (I put a slightly damp washcloth over a heating pad, but I really need to buy one of those moist heat heating pads.
The only other thing I can tell you is that I think I finally figured out that keeping both my stress levels and my my blood pressure down is another key to keeping my TN under control - when both go up, the TN is most likely to flare. I don’t know if it’s an immune system thing, or if it has to do with the actual blood pressure pressing on the trigeminal nerve, but either way it seems to make a difference. If you haven’t already, find a good neurologist, too.
I wish you luck - if you ever need someone to vent to or anything, feel free to msg me, ok? Take care, and big - gentle - hugs! <3
I have both too.....have had problems for about 7 years......it is NOT fun !!!
I find that gently rubbing in ASPERCREME on my temple and jaw line helps to relieve some of my pain when the flares hit...
Take care ....I will keep you in my prayers... BLESSINGS and GENTLE HUGS :)