What do you do to help your TN pain?

I don’t do well with medications. This is a new diagnosis for me even though I’ve had severe migraines since I was a young child. (57 yrs old) My neurologist put me on gabapentin. (She wanted me on carbamazepine.) I only agreed to take the gabapentin when I couldn’t handle the pain any longer, so not an every day med. I haven’t tried it yet out of fear of reacting to the med on top of the TN episode. I mostly just use gel ice packs on days my scalp, face and eye pain will allow it and take Tylenol around the clock. Then lots of sleep in a totally dark room. Zofran for nausea. I can’t take ibuprofen due to my ISM. I wear a day splint and a different type of jaw splint at night for my TMJ. I couldn’t stand the jaw pain if it wasn’t for the splints stabilizing my jaw during these episodes.

My episodes typically last 24-48 hrs with the first 24 being excruciating pain. The 2nd day I can at least function some around the house but still having to wear my sunglasses inside to protect my eyes from the lights, tv glare, etc. After that, it just seems to take my fried brain days to recover from the pain. It’s just like I’m in a zone where just trying to multitask or follow a recipe is a challenge. The electrical shocks (head and eyes) and what feels like bug bites or wasp stings to my body (arms, upper thighs and back) are much better after the head pain lets up. Does anyone else get these “wasp sting” feelings? This is increasing in frequency for me too.

Also, my TN is seemingly getting worse over the past couple of years to where I feel like I have dementia. Does anyone else with TN feel like they can’t remember what they did 10 mins ago but can still remember things you did 20-30-40 yrs ago? I’m trying to figure out if this is being caused by the TN or my mastocytosis.

My main triggers are changes of temperature of any kind to my head/face. For example, being in a hotel room where the a/c unit is going off and on all night is almost a guaranteed flare. Same with going from an air conditioned or heated room to outside on a hot or cold day. Standing, bright lights inside and out, cleaning house due to the physical exertion, bending over and wind on my head/face! Possibly some foods but still trying to figure that out.

Thank you

Neuropathic Facial Pain

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