My mom just got diagnosed with this and the nerontin is not really helping.
She takes 100mg once a day. But we bumped it to 200mg. She is not having really bad episodes as before neurontin, but still in agony. She had a stroke in 2006, and cannot communicate or walk on her own. What worked for you as far as meds.? I don't know if her DR. @ Vanderbilt Medical Center will consider surgery because of her brainstem stroke. They said it would take a couple of days but this is the 3rd day on this medication. I know it is helping, as far as easing the pain a little. Her attacks are fewer. But she still has them. I just wish I could take the pain for her!!!!

I am sorry to learn your mom is still having so many attack. The only drug that ever worked for me was Tegretol. Sadly I had a severe allergic reaction to it. It is generally the first drug of choice for TN, but does carry risks that the Neurontin doesn't.

I am on 3600mgs of Neurontin....... 200 mgs is a very low dose and maybe she needs a gradual increase. Surgery, IMHO should be considered as a last resort after all other avenues have been explored.

Many fortunate people do find relief from surgery. But there are also those like myself, that the surgeries failed and left us with not only constant TN but other complications as well.

Talk to the doctor about changing and or adjusting her medication to try to help her with the pain.
Best wishes, Nikki

Hi, momof3girls.

I'm sorry your mother is in pain, but that she's been diagnosed is at least a step in the right direction! I have glossopharyngeal neuralgia (same thing, different nerve) and I take Neurontin for it.

200 mg/day is a *very* low dose. If your mother is older and pretty light weight, this may be part of the reason the neurologist started off slowly. I'm an otherwise healthy 23 y.o. and I currently take 900 mg of neurontin a day (300 mg per pill, 3 times daily). I know there are people who take 1800 mg of neurontin a day or more (like Nik-key, here), and I'm actually hoping to get my dosage increased to 1200 mg/day soon.

I would definitely talk to the doctor about having the dosage increased, especially since you are seeing some beneficial effects. Neurontin typically carries fewer risks and side effects than Tegretol, so people often start out on that. It is important, though, that dosage not be increased or decreased too rapidly, and the neurologist will know what is safe.

I am in Nashville, too, if I can do anything to help. Also, I know that the department of radiation oncology at Vanderbilt has treated TN before using stereotactic radiosurgery, which is similar to gammaknife, if you're interested in that. It provides an option to those who are unable to undergo surgery.

Keep us updated, and good luck!