Hi, great to hear from you.

I am much better thanks. The frequency of the attacks and the intensity is much reduced so that although i am still getting attacks, they are no longer distressing - more like having an annoying toothache level of pain to a little greater, especially if i have been late with the medications. I find i can now continue speaking through most but not all attacks. At least i can keep my face looking normal! so back to work on Monday after a week working from home.

I am taking 600 mg now 3xday. I think that's about the most my neurologist has said i can take so i will have to make a decision about whether to live with what might be a relatively manageable level of pain or to try something else to get to a state of no pain. I'll just see how i go. I find that Neurontin has less side effects for me than Tegretol, though on good days tegrotol stopped the attacks altogether. Tegretol just seemed so sensitive, i would have no pain for a few days and then have a really bad day for no apparent reason (ie i had not forgotten any medications) and then if for some reason the dose was a bit high, for example when i took one lot of tablets late and then the others as usual, I ended up getting very dizzy and nauseous.

I would be interested in hearing about your experiences with medications - and what sort of outcome you were able to achieve. I really hope you are going into a period of remission! one benefit of taking medications that only tone down the attacks is that i will know if i am entering remission.

i think my GPN started, though i didnt know it at the time, after a nasty sore throat where i ended up with a lump on the left hand side of my throat. I went to a EN&T specialist in case it was something nasty. By the time i got in to see him the lump had disappeared! But around that time I experienced a weird feeling on the left hand side of my throat from time to time that would result in a horrible cough-gag reaction. I probably had this for a couple of weeks and then it went away for probably a year. Then I started getting the terrible pain in the lhs of my throat - finally got it diagnosed, and then I had it on and off for a few months after which i went into about 6 months remission. It started again in August this year, gradually getting worse until i decided i would need to consider medication. i did try acupuncture until fairly recently when my acupuncturist moved to a difficult spot fro me to get to, but its impossible to say whether the acupuncture helped or whether i naturally went into periods of remission.

I find a number of things cause an attack, the usuals, but also if i talk with my neck turned to the left. This makes me think there is a physical reason that is aggravated by movement. I did have a MRI scan which showed a possible blood vessel around about where the 9th cranial nerve lives but it was inconclusive.

What a mystery though - why go into remission at all if there is a physical cause??

I'd be very interested in knowing the pattern your condition has followed, especially around remissions.

Sorry about the brain dump you are the first person i have communicated with who also has the condition.

I hope all goes well re going off your medications!

All the best