New to here

Hi there.

I have just joined the site and found your page. I have just been diagnosed by my GP as having TN which I believe is V1 from what I have read.

It first happened in about May and was so bad I actually passed out with the pain. It only happened the once and thought nothing else about it.

I then had nothing else until mid October. It happens on my right side from my nose over to my ear and the top of my head. I have a constant headache and get unbearable stabbing behind my eye but also my eye burns. I was first give Tegretol (carbamazapine) but had a very bad reaction to it (itchy and the skin in my mouth blistering and peeling). I have since been given Neurontin (Gabapentin) I am currently taking 600mg a day (200mg 3 times a day) but it doesn't seem to be doing anything to really help just makes me sleepy and tired.

I am not to bad in my house (a couple of attacks a day) but the slightest breeze/cold/draft (we have just ended a British winter so this is constant outside) near my eye or washing my hair or rubbing my eye and it kicks it all off again for days. I am stuck in my house!

I have also been reading up on it and apparently it is rare in people under 40 but I am only 29. Is this right?

People vary in their sensitivity to all of the anti-seizure drugs. 600 mg per day of Neurontin in divided doses is on the low side of the effective range. You may need to taper up to the 1200-1800 range. Many people acclimate to this and other medications over periods of a few weeks. My wife is on 2700 mg/day of Neurontin and has managed with few side effects for over 13 years.

TN isn't that rare in people under 40. In a demographic study reported under our Face Pain Info tab (Who Gets TN), we studied 1200+ of our members and found that something like a quarter of them were 30 or less. Half of all our members are under age 43. We have a mixed population of face pain patients, with some of them dealing with neuropathic pain due to dental injury in root canals or anesthesia directly injected into the Lingual nerve. Onset of "classic" (Type I) volleys of stabbing electric shock pain is generally a bit older.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN