Originally Posted by kimmydawn

Hi there!

I have TN, and have had on and off (what I call) sleep starts for many years. It sounds exactly like your experience.

I do it on and off and when it's on, it's a maddening experience trying to get into a deep sleep. I've tried to explain this to people and the closest explanation I could find was called "sleep starts". It DOES feel electric and scared me to death when they first started.

We share something else...my TN is due to extensive maxiallary sinus surgeries. The first one was reconstructive and necessary due to a large cyst in the right maxiallary sinus (I believe the TN began then as the pain is the same but lesser and hasn't gone away since that initial cyst that went so long the surgeon said it was the largest he'd ever removed). The second two were more clearing and reconstruction. I'm told I need another, but not happening.

When mine is acting up I usually do alright when I get past the "falling asleep" period. That can take hours though with the electric shocks.

I've used neurontin, tegratol and lyrica. I couldn't tolerate any of them due to the side affects so I stick with a mild narcotic to help the pain. Some tolerate other meds better than one, but I was unlucky there.

I wish you more than well trying it. Please let us know how it goes.

KD