TN, but confused about the symptoms

My problem started ten months ago with several dentist visits for what I thought was a bad tooth. He couldn't find anything. He suggested I see a neurologist. After that I had mild, but noticeable, shocks and tingling on the left side of my face. I was diagnosed with TN and given gabapentin. The dosage progressed from 200 mg twice a day to 600 mg three times a day. A month ago I had extreme tingling on my face, much more than usual. A few days later I had my first attack. I woke with a jabbing, crushing pressure around the corner of my mouth. I knew what it was. It lasted about ten minutes and that area was sore the rest of the day. I asked my neurologist to increase my gabapentin instead of starting me on tegretol because I was afraid of the side effects. He increased it to 800 mg three times a day. I tolerated the gabapentin well. I also take baclofen three times a day. Two weeks after that I had five shocks around my face and forehead. I'm not sure what category I fall under since I had the dull, crushing pain and then the shocks two weeks later. I had my teeth cleaned three days before the first attack, but I don't know if that could have been a trigger.

Yes, dental work can trigger the attacks. I get sooooooooo nervous before dental work! I have been on tegretol since day 1 and I am up to 1200mg a day (sometimes 1400). I have done great so far except for being tired and forgetful. If your doc wants to try you on it, try it. You can always go back to gabapentin if you have bad side effects.

Hi
My pain started with the burning, boring pain intermittently for almost ten years. It became relentless and excruciating about two years ago, and the shocking started about a month later. I developed the same pains on the other side about a year later. I was diagnosed with bilateral ATN the following month by a TN expert.i had MVD on my right side in January 2013, and MVD on my left on October 14.
It sounds like you could have ATN.I was taking neurontin 600 mg 4x a day. It may help if you split your meds to 4x a day, as I found the neurontin to only work for about 4 hours or so. I am now starting to taper off the medication , and am looking forward to being pain free in the near future!
Please ask any questions you have. This is a great group that had guided a lot of us through this whole journey!

Does tegretol have to build up in your system or do you take it as needed? Being tired is one thing, but I'm really worried about the forgetfulness because I already take Aricept for my memory and it has worked wonders.

tiger4nikki said:

Yes, dental work can trigger the attacks. I get sooooooooo nervous before dental work! I have been on tegretol since day 1 and I am up to 1200mg a day (sometimes 1400). I have done great so far except for being tired and forgetful. If your doc wants to try you on it, try it. You can always go back to gabapentin if you have bad side effects.

Get prescription called in for you! Lidocaine patches for your face. Can lessen or rid face pain for many hours… Found it here!

Thanks for the information. The patches are something I hadn't considered. I started applying capsaicin cream on my cheek around where the attack occurred. It seemed to make things worse, but I still want to give it a chance. Does it get worse before getting better? I was given tegretol ER 200 mg to take one in the morning and two at night. I thought I would start with just one at night because of the drowsiness side effect. On average, how long before the side effects level off, and do you ever get feeling normal again?

tiger4nikki said:

Yes, dental work can trigger the attacks. I get sooooooooo nervous before dental work! I have been on tegretol since day 1 and I am up to 1200mg a day (sometimes 1400). I have done great so far except for being tired and forgetful. If your doc wants to try you on it, try it. You can always go back to gabapentin if you have bad side effects.