I have been trying for months now to get real answers about my pain. I have been to 3 different neurologists (2 bad, 1 OK). The first two thought I was crazy, wanted drugs, or had migraines. Funny enough, my chiropractor is the one who diagnosed me with ATN. I am now going to a neuorlogist that "believes" me. I am on 1800mg Gabapentin, but am still experiencing ongoing burning pain each day over my eye that can move over to the bridge of my nose. I feel kind of alone since most TN sufferers have facial/jaw pain. Does anyone out there have my symptoms? Any advice? I feel my doctor doesn't really know what to do with me.
You are not alone!
My pain started out of the blue one morning when I awoke to a feeling of being punched in the nose. I expected my left eye and nostril to be blue and broken but they were fine. Touching the bridge and side of the nose or under the eye is excruciating and my own tears feel like acid. Everyone thought I was nuts or just having an infection.
It has not been until the last two months that I have begun experiencing big shocks in my jaw along with burning teeth. The first 8 months of my TN/ATN was complete nose and eye pain. When I finally saw a neuro she said "Well...it sounds like TN but kinda not really. Hmm, you are odd."
Odd maybe, but not alone ;)
funny you mention... well not "haha" funny,... but my left eye today has been doing the same.... i feel like each day there is something "new".... its almost like from the neck up... im getting EVERY type of nerve pain... its like a guessing game... which pain is it going to be today... :///
Keep looking for a doc who will listen... don't settle. Keep pushing forward! :D
I sure do have those symptoms! Not sure if yours is like this, but my eye feels like it is being burned from acid being poured in it & my nose feels like I am being made to breath in acid or bleach or something. When these symptoms first started I thought it was from allergies. But I find that this acid burning feeling is associated with the electric shocks & can be a precursor to them. (I have TN & ATN) When my dr increased my tegretol both times these symptoms seemed to disappear or get a lot less. For the increased ATN pain I am having now the pain dr just gave me more hydrocodone & methadone so we'll see.
OK, let me back up- when I got TN I was already on a combination of gabapentin, baclofen, hydrocodone & methadone for other nerve and muscle pain & cramping conditions. The addition of tegretol took care of the electric shocks of TN but the only thing I can do for ATN is more pain meds & ice on the face. Also when I get the nose pain it hurts really bad when I breathe in so I stuff that nostril with a kleenex so no air can get through it.
Do you go to a headache specialist (neurologist)? Mine is the main dr watching over my TN, but also have a pain dr & general neurologist that help with suggestions & meds.
Don't be afraid to change drs if you are not getting pain relief. I think trial & error of meds & combo of meds is the key. Good luck to you!
"its almost like from the neck up... im getting EVERY type of nerve pain... its like a guessing game... which pain is it going to be today"
Wow, I know EXACTLY what you mean!
Kay May said:
funny you mention... well not "haha" funny,... but my left eye today has been doing the same.... i feel like each day there is something "new".... its almost like from the neck up... im getting EVERY type of nerve pain... its like a guessing game... which pain is it going to be today... :///
Keep looking for a doc who will listen... don't settle. Keep pushing forward! :D