When did you know something wasn't right? For me, it was one day when my husband and I were driving home from grocery shopping. Suddenly, without warning, I felt as though I had been struck by lightening on the left side of my face.

More later on my journey, tell me yours.

We were traveling west from Pennsylvania to a conference and stayed for the night at a motel. In the morning we ate breakfast before getting on the road again, and while chewing a bagel, I had a lightning bolt of pain hit me on the left side. Over the next few days I got more of them while eating, so I started to chew very slowly and carefully. Shortly after that we were camping in an RV at a music festival. I was still having trouble when I ate and was choosing food that didn't require hard chewing. One night I was reading in bed and suddenly had a series of lightning bolts for no apparent reason - later I realized it was because a breeze was hitting my face, but at the time I had no clue what was causing it. That was very scary because I could control chewing but I had no control over this unknown cause. I think I had already seen my dentist for a routine cleaning and he had said it wasn't my teeth causing this occasional problem but he didn't know what the problem was (he hadn't heard of TN). So after the camping trip I saw my internist. He suspected it was TN right away but needed to run some tests to rule out other possibilities. By the end of that week, the pain had escalated to constant, excruciating pain and a late night trip to the emergency room for pain meds. The next morning he put me on Tegretol but I had to build up the dose. The first pill took away the pain within a few minutes but maybe 8 hours later it would be back full force in an instant and I couldn't even finish what I was doing - all I could do was to go to bed. Amazingly I was able to sleep. The second I'd wake up in the morning the constant pain would be back - till I took another dose of medicine. Once I was able to built up to the dose I needed, I was out of pain.

That was 20 years ago, in the spring. After many years of meds and two outpatient surgeries, 3 years ago I had a MVD and have been pain free and off all TN meds since then.

Dear Jean,
What a remarkable and blessed story and I am especially glad that the MVD worked for you,,it didn't for me but I am still very pro having the surgery done under the right circumstances......

For me.... I noticed it while putting on make up,,there was one place on my nose that just kept getting more and more painful...no reason why....then the roof of my mouth began to hurt to the point where I would tear up in the morning if I swallowed without knowing it....and then the lightning bolt pain started,,,by then I was already seeing an Endodontist who did some minimal work and then said to me..."there is nothing wrong with your teeth and I will not do any procedure on a healthy tooth,,,you have TN" then he asked me if I had ever looked it up before and I gazed at him as if he were speaking another language....who the hell googles TN unless someone says to....I mean it's not like googling how to care for begonias!!! What the hell is TN???
A decade later I well know what TN is and I wish all who have it the hope and sense of humor to survive it.....Love to all...Beth