Hi. Interesting discussions! I first noticed my TN-2 shortly after sinus surgery; however, a neurosurgeon suggested that my electric shock-type pain in my forehead and eye as well as my “cluster headaches” which I’ve had since childhood, might actually be TN 1. The pain has apparently progressed and has gone from down the base of my left nostril to my upper lip, front tooth, hard palate behind front tooth, lower left lip, across my left cheek and into my left eye, which chronic watering of that eye. I’ve been treated for dry-eye with no relief. Symptoms of TN 1 have increased in the mid and lower aspects of my face. So, I’d have to say, it has definitely progressed. When not in a flare up the upper left lip is permanently numb with tingling. If I touch my cheek or under my left eye, I feel it in my left lip. Such an odd feeling. Cannot take medications-side effects intolerable. Last week was the first time that I stayed home from work because of the TN pain, usually, I’d power through and take some Xanax just to deal with the anxiety the constant pain and discomfort causes. I am considering MVD surgery, and am looking for a neurosurgeon with whom I can place my trust for such a surgery. If anyone knows of such a surgeon, anywhere in the world, I’d appreciate the name. I had heard of someone in Michigan, but cannot remember the name. Thanks! Camia
Jane, you sound EXACTLY like me. OMG! i never thought in a million years I’d run into someone that suffers the same. (sorry don’t mean to run into you in this manner). My gpn was first diagnosed 10 years ago & I suffered for one entire year. Then it miraculously disappeared after being on Lyrica for 2 months or less. Since then, it’s been back 3 other random times. I’m currently suffering now & have been for the past 4 months. But this time the pain/burning/numbing sensation has traveled to my face. It’s horrible. Doc has taken me off of Lyrica & put me on something I yet spell or pronounce. On a scale one 1 to 10, 10 being the worse, I’m about a 5.5 with my current meds. The sensations subside a bit but I know it’s always there. I’m depressed & have lost alot of desire on ‘life’. Its just debilitating. I’m religious so i pray ALL the time. I suppose God is listening to my prayers because I could be worse. I have 2 babies I cannot enjoy right now. I wish there things I knew to do to help myself without meds. There’s gotta be…I’ve tried accupuncture with no luck 
Hi Camia, I have many of the same symptoms you have including cluster headaches. I have MVD surgery scheduled for July 12 in Michigan with Dr Kenneth Casey. He is the co author of the book Striking Back. Its the best book out there about TN, a must read book! And he is a specialist in this surgery. I’m traveling across the country to make sure I have the best qualified surgeon for this delicate surgery. I have full confidence in him!
Hi
I never thought I’d “meet” anyone with similar symptoms to mine! Best of luck on your surgery. Please keep updating on surgery and subsequent recovery. I look forward to reading about that. Take care! I’ll be sure to read the book.
Camia
Hi Redvelvet
You sound like you are suffering so much. I tried Lyrica, but it made my legs jump, uncontrollably, so I had to stop. I am unable to take any meds due to my severe reactions to side effects. I hope you can get some relief. I don’t know how raised two children as a single parent and worked full time. You are very brave. I feel cheated out of enjoying my kids’ childhoods due to the pain of chronic migraine and TN 1 (cluster headaches). Keep checking in. It helps me to communicate with people who understand.
Camia