Hi, yes it is a bit hard finding anyone else with this experience. I have had it for about 18 months but probably 9 of those months have been periods of remission. Only fairly recently have i jumped on the medication roundabout and have just transitioned from Tegretol to Neurtonin <sp>. I have had a tough 2 weeks going from horrible side effects while i was on both for a while to now having continuous attacks while hoping to get to a level of mediation that will work. Talking brings on an attack which never happened before so things are pretty quiet around our place! very frustrating!

I would be very interested in hearing how you and others are getting on, well i hope?

i take tegretol and neurontin on a daily basis while it does not work 100% of course it makes my life functionable. it is a Godsend. when i find that missed a dose i can immediately tell and it just reaffirms that they are working! i think they are the 2 common drugs they basically use. you could ask if they could keep you on both.

Hello everyone,

I have just "kind" of been diagnosed with GN and placed on 100gm of Tegratol. I have self increased to 200mg as the initial dose was ineffective. No effect with 200 mg. My neurologist is not sure if I really have GN as my symptoms are atypical --- constant pain to throat, back of head, shoulder with sporadic tingling in throat which is very localized, lasting a few seconds. He says I should have sharp, electric pains that last a few seconds. My pain is not like this. I have been scoped, twice and there is nothing in my throat or esophagus. I am now in pain on the daily basis which feels like a hot iron on the back of my head. This all started close to 2 yrs now and I initially went through 4 months of hot flashes. They have now mostly stopped. MY MRI was negative but it was only done after reports of headaches, they did not necessarily suspect GN or have been advised of throat pain. At the time I did not connect the two and didn't report the throat pain (thinking it was gastric reflux). Could they have missed GN? is there something else I am possibly missing.

Really looking for someone with a similar experience.

Thank you!!!

Hi I have had pain when talking for almost 4 years and have only renetly been diagnosed with Glossopharangeal neuralgia. How are you getting along now ?