Hello everyone,

I'm 26 years old and have had trigeminal neuralgia for about 5 years now. Up until Christmas time I have been able to take tegretol and it got me through my pain. I also have had 2 remissions, one lasting for over a year. A month before Christmas I had an attack that let me experience a level of pain I didn't even know existed with neuralgia. The first time I experienced it I was just sitting in my computer chair and it felt like something grabbed my nerve and wouldn't let it go, it was paralysing! I literally couldn't move for about half the month, and this included laying down. I had to prop my head up with a pillow in a chair sitting up. I had to go to the docotor and get tylenol three and then demerol since my tegretol was not working at all. Since I work at a daycare sitting still and not moving or talking was not an option for me so I ended up missing quite a few days of work.

Just before Christmas my neurologist rearranged my medication (God love him) so I took 500mg of tegretol in the morning and then 500mg at night. This was great up until the end of January. It was like my tegretol wasn't working again but it still wasn't at that level of pain like before but I couldn't talk, or eat which again made it hard to do my job.

I was sent to a neurosurgeon who I really like and he has suggested for me to get an MVD surgery. I am now on 1600 mg of tegretol the max and no other meds that my doctor has tried work for me. Once again I've had break through pain and there isn't much else to do but wait until I go for my surgery.

My neurosurgeon is cheif of staff for neurosurgery in our children's hospital as well as "one of the best" according to my neurologist. The surgeon said since my neuralgia is genetic he's not sure if he can do the MVD but he won't know until he gets in there and if he can't he's going to cut the nerve. I have read on here some bad things about nerve cutting but I'm hoping he knows what he's talking about. All I know is that I'm scared out of my mind!!!

Thanks a lot for your help/suggestions/prayers,

Amy