Even though I am a relative newbie at all of this - it is really helpful to hear about your experience as certainly there are some similarities - including a slightly spooky one in that I went into remission in April this year and came out in August! must be the moon

I loved your poem - glad i didn't try some of your earlier meds! I hated the idea of going on medication - but in the end there didn't seem to be a choice. I tried prescribed pain killers but they don't seem to do anything. I may try acupuncture again as i reckon it helped a bit - but who can tell with remission being a feature.

I was on Tegretol and Neurontin at the same time while i was transitioning between the two and i got really quite sick - nausea, dizziness and eye twitching so i couldnt read without getting migraines. maybe it was just the amounts?

I also had the coughing and gag response - horrible. Before I was diagnosed I tried to describe the condition including the pain, eyes watering and gagging to a dr and he just looked at me as if i was a bit crazy - he could only hear the word throat and thought i was being a bit of a drama queen about a sore throat

A different dr in the same practice had come across it before and so recognised it as GPN.

I have had an MRI and it showed a bit of shading near where the 9th is located but it wasn't conclusive. The neurologist thought it probably was a blood vessel near the nerve but what i dont understand is why it goes into remission if that's what it is.

One of the things that seems to trigger it for me is turning to the right and talking or lying in bed on my right hand side. That makes me think it might be compression?

Got to go to work now but i really hope your progress towards remission continues. I am just thinking about a Christmas where the Dr has said I should only have one glass of wine during an evening! I am off alcohol all together at the moment while I am sorting out levels. i dont drink a lot anyway .. but only one over Christmas !!

Really pleased to have found someone to talk to about all of this !