Hi Laureen,

Sorry to hear about the recent scare with the pain. Your TN area is similar to mine (lower branch on left side) although this year it was some place on the roof of my mouth that was triggering a "zap" when I brushed my teeth (my trigger points used to be lower). I have stopped using my electric toothbrush for awhile. There are still sore nerves behind the upper teeth, and I just don't want to feel them!

My neurologist told me when I had eye pain after the balloon compression that the meds for TN work on all nerves, not just the Trigeminal. So he had me stay on the meds for maybe 4-5 months because of the eye pain. Maybe your decreases have uncovered some other pain. My gums ache sometimes, and sometimes the side of my tongue, but it's mild.

Tuesday and Wednesday till evening were great days for me. I felt like I was getting my life back. Today I was much more tired. The weather really seems to effect me--The good days were sunny, today wasn't.

This morning I decreased the Topamax. I'd only been on that for the last month before the surgery and wasn't realizing that it was then that I stopped driving and started feeling even worse than I'd been feeling on the Tegretol alone. I'm hoping this decrease makes a big difference in how I feel. I'm sure I'm still recovering from the surgery at 4+ weeks, but even more so I'm still having all these side effects from the meds. Of course each decrease is scary. I have been having some twinges, but they still do not act like TN zaps. I just hope they don't start to get worse.

So after that recent epidosde, are you staying at a higher level of Neurontin or did you just take that one extra one?

It's really nice having you to "talk" to!