In 1999 I started having BAD stabbing pain in one tooth every few days. Lasted a few seconds then gone. Dentist found nothing. Over time it began spreading to gums, roof of mouth. Eventually, an oral surgeon diagnosed TN and prescribed Tegritol. It worked and took away the pain – terrible stabbing pains and sometimes electric shock pains in the gums and teeth. Months later I had to up the dose as it was breaking through the Tegritol. Upping the dose to 600 mg did the trick. Later, I began slight breakthroughs and nuerologist said when I got tired of upping the doses we could go the Gamma Knife. I had read the pronosis of possible increasing doses and severity of pain so I said “do it”. Had the GK done 4/2000. Stayed on Tegritol and scaled down over 8 mos to 0 mg. Had minor numbness along the nose that went away after 18 mos or so. Went 7 years pain free. Then it started back with a vengeance. Attacks of electric shock similar to machinegun fire. Took Tegritol for 2 weeks and then tested w/o the med and the pain was gone. In 2010 it came back. Surgeon recommended the Cyber Knife. I asked about MVD. He said he did that but he recommended we do the CK because its “less invasive”. I have read on this site others’ surgeons told them the opposite. I guess it depends on the patient and his/her stats, age, etc. Did the CK Feb/2010. Scaled down off the Tegritol after 2 months. Take no meds now. Occasionally, I feel a “tremor” in front teeth…sort of like a pain with no pain if that makes sense. Like a twitching nerve. That tremor is getting less as time goes by. But the good thing is I have no pain. I had quite a bit of numbness on the face around right eye, facial tissues, and especially in the upper teeth and gums. There is now less numbness on the face, but some still there. There is still a lot of numbness in those teeth and gums (the ones that are affected). The numbness may go away, or it may get better (which it already is to some degree), or it may not ever go away completely. I can say this. It took a year and a half for the numbness to go away from the original GK treatment…which was very mild numbness compared to this time around. But even if it all does not go away completely I can live with it. It is far, far better than intolerable pains and shocks that nobody – and I mean nobody that is normal – can relate to. I can see it in their face, they have no idea because everybody has some pain. But, I can’t expect them to know since they have never undergone torture. I suppose only a former POW could relate to how bad the pain can be. But, good news…praise God…is the pain is gone. I always felt like stress possibly had some part in causing this, but the nueros tell me no. I do know that often when I got stressed attacks would come.
Jimmy,
Thanks for your update. I am glad your pain is gone. And all of us know the look that people give or when we hear a comparison with their back pain. But I know that they do hurt. I remember when my TN first happened. I thought it was bad. But it was nothing compared to what I have had or what I have now. So they can only compare the pain with the worst pain they have had. So I really just tell people it is worse or better than the week before. I have great friends and family. I hope your numbness gets better. But I agree, Praise God, your TN pain is gone.
Liz
Hi Liz. Yes – praise God. No pain. Any day without that monster is a blessing from God. Yes, I have numbness. It varies from time to time as to how numb it is but its always there, with the mildest days being a very significant numbness in lips, teeth, gums, facial tissue. I see you had the stabbing pain version. I had that too back in 1999 and 2000. Absolutely AWFUL. When I moved here from La. I sought out a new dentist and gave him a rundown so he’d know before he started messing with my teeth. He asked me how bad it was when it hit. I told him I’d kick my mother and spit on the flag for relief. He looked over at his assistant and told her “now there’s a description of TN”.
You said you thought your first TN pain was the worst, but nothing compared to what you have now. Have you developed something other than TN? Or did you mean the TN pain is worse now than the first time? I read that you went through acupuncture. I haven’t had that. I see you had MVD and it seems it was successful but I guess I’m wondering if it was why are you still hurting. I’m probably not reading something right. Wouldn’t be the first time 
LIZ, you said you didn’t have pain when you are asleep. I’ve noticed that too. I asked my neuro and the surgeon if stress could be related. I always felt it was related, especially since I was never bothered in my sleep. Others on here have felt stress was a possibility too. Anyway, my pain never bothered me during sleep either. Interesting !