Hi, is there anyone else who has symptoms of gpn?
i was told i have it by my doc 10 years ago. it comes and goes and when it comes back it is very debilitating
I have GPN.
See Klawans Toscanninis Fumble. “The Hounds of Hell” TN story. Don’t miss!
I had GPN in 2010-2011. My symptoms were searing electrical shocks down my tongue. Eventually (18 mos) taking tegretol, Neurontin and lyrica is went into remission. I was told it was gone for good. Last year I was under extreme stress, the symptoms came back only a bit differently. The shock likes to come down into my two front bottom teeth. I was put back on the 3 meds plus Prozac. Unfortunately for me we have a different medical insurance who refuses to cover the lyrica because, it said, is not FDA approved for this disease. Seriously?! Although my shocks aren’t as severe as last time (more burning last time) they are multiple times a day and the meds aren’t working as well as last time. It’s been a year and I’m frustrated and getting desperate!! I don’t want the surgery. Are there any other options?
I find this article here is the most comprehensive and seems most up to date.
One of the issues is the illness is rare enough it doesn’t get much attention, so some of the information people are dealing with is many decades old.
I have both constant pain (electric, aching) and attacks (shock like, piercing, cramping). I spent five years as a mute as speaking would trigger attacks, and was on an all liquid diet before finding some medications that helped dial it down.
I still occasionally go mute, and have constant pain, but dialed down to a level I can eat and speak.
I have had it for 13+ yrs. Diagnosed only 2 yrs ago (finally and by myself with doctor & neurologist in agreement). It comes and goes… I currently am suffering the symptoms. All I can do is take 800mg Taro-Carbamazepine throughout the day to dull the pain of seizures. Nothing but time makes it go away.
What meds do you take and what dosage?