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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 |
Wow, I have TN from a herpes outbreak on and around my mouth last year. But, I have had those electric jolts when falling asleep for much longer. I think they may have started after having 3 ECT treatments(electro-convulsive therapy) That was a horrible experience. When you get the electric jolts, do you have different parts of your body move too? I get that plus my mouth including my teeth clamp down so I always have sores on my tongue from biting it. I take neurontin and Cymbalta for the pain(Cymbalta also for my depression and neurontin for my seizures too) I also have RLS and take mirapex for that at night. I am on a lot of meds due to these problems plus having FMS/CFIDS etc. I also am on an extended release narcotic as well as a fast acting one for breakthrough pain. I have been wondering how to even explain these "electric jolts". It can be maddening, but I also take trazodone at night for sleeping, which helps a great deal. but, when trying to nap during the day it can be frustrating. I still do wake up many times during the night from these jolts and the subsequent biting of my tongue.