I am wondering if what I am experiencing is "normal". My pain disappeared with tegretol but then I had a reaction and can't take it. So I was switched to gabapentin. Started off low then upped the dosage slowly. I was fairly pain-free for nearly a month on my current dosage (I have type 1 and 2, the type 1 was very very mild and it knocked out the type 2 pain) ... 1800mg/day.
So yesterday I had a bad type 1 attack at night that I had to breathe through and one this morning drinking my coffee. I don't mind increasing my medication if need be but am wondering how many times this is going to happen, being pain-free/at a manageable level and then bam it all starts all over again :/
Have other people been through this? I also don't want to end up on some zombie-like dose or to hit what I can't handle and still have pain. Does the TN somehow break through everything after a while?
I am the same with Neurontin. I had a migraine that set off an attack—the side of my face is still swollen. My neuro increased me to 1200mg. This is my last increase before she puts me on Tegretol and I’m worried.
Porcelina I will be watching for an answer! So bob did the surgery make it all go away? I have had a very good response to the stereotactic radio whatever surgery. Then all of a sudden lately the TN has kicked in really bad with the unseasonal wind and coolness.
yes this is how this beast acts. you are tooling along thinking okay i got this than bam!!! i have type 2. had motor cortex surgery five yrs ago. soooo glad i did. the medicine thing i could never get it under control. i can no longer take tegretol either and it really worked for me i get anxiety/panic like attacks on the lowest dose. but it helped me through now since surgery the neurotin helps but i have to take more than one thing with it. i take a narcotic and the beta blocker in my blood pressure med helps which i have to be on regardless. i also have a butrans pain patch for the bad flare ups that knock me flat.
try to document what triggers yours. mine is sunlight. i thought i was having migraines from the bright light but it was the squinting when IN sunlight or bright light that caused mine. so i always wear sunglasses out doors. i also noticed the ceiling fan or vents in public places the drafts set mine off. so some of it is avoidance of triggers.
here i had a fan on my desk for hot flashes and it was giving me such headache pain. but it was really tn pain. so write these kind of things down keep notes for your drs. it really does help. you are your own best advocate and find some dr who deals with this a lot in a bigger facility like chicago, or cleveland or pittsburgh or where ever you find an experienced phys. you will get better treatment.
I've had a pain diary since all this started earlier this year. It definately hits me most in the evening and at night. And when it was really bad in the afternoon also. Usually the morning is all good apart from maybe a small attack with cold or hot stuff for breakfast. Luckily the type 2 pain seems to still be under control on my current dose but the type 1 is rearing it's ugly head again. I had to take oxycodone during the night last night after 3 attacks woke me up, had one more attack then slept straight til the kids got up. Almost out of oxy though and my GP doesn't like prescribing anything stronger than paracetamol or tramadol. If only HE had TN then he would understand! Drafts set me off also. Lately I have been having very painful sensations in my nose (stinging) on my TN side and my gums aching like someone has brushed my teeth with a wire brush. Both of those sensations are new :(
I started out with 300mg a day of Carbitrol and within a year was up to 2000mg daily along with a cocktail of pain meds. I had Gamma done and for 8 months was 80% pain free with meds down to 300 mg a day. I had MVD done and have been pain free and med free for over a year now.
Good luck. I hope you find a solution that will work.