Hi Everyone, I am new to the message board and a recent receipient of the "you have TN" award. OK, so I was diagnosed with Trigeminal Neuralgia in November and its been quite the roller coaster since. They started me on 200 mg of Tegretol 2X a day and now I am up to 600mg 2X a day and the head aches keep coming. I have massive eye pain in my rigth eye and it seems to shoot straight back. I also get buring and pain around my eye when this happens so I can't even touch my face around my eye. It is incredibly frustrating. I hear about MVD but the idea of someone messing with my brain doesn't sound like fun. Has anyone had the same type of pain associated with TN and they are on antoehr med that seems to work? help
i also have been diagnosed with this crippling condition,and have been shoved through the system like an animal in milking barn,no name,just number.my primary care dr started me on neurontin,and with pain meds i was getting much more relief.i couldnt obtain meds from my dr. because as you know everyones a drug addict,so i found myself an online pain management dr.but now they dont serve in my state,so im once again trying to find an online dr.know any?anyway,inquire about the high dosage of neurontin,it did help,however my pain is different than yours.mine is like having an abcessed tooth,a sinus infection,and an ear infection,all at the same time,on top of the shooting pains through my cheek,into my nose and eye,filtering back through my head.good luck,i know exactly how you feel,this has been the most painful year and a half i could ever imagine.it has completely changed life as i knew it. .....................................tnp ain
There are not many doctors who are famliar enoguh with this condition to treat it properly. My sister had it several years ago and had an awful time getting a diagnosis...and then treatment was next to impossible. She did a lot of online searches and found the TN clinic at the University of Pittsburgh, Presbyterian Hospital neurology clinic. A doctor who stated that clinic, Dr. Genera (sp?), had developed a surgical repair for it - microvascular decompression (MVD). She got a referral to it and saw the man who had trained under this doc (who was only doing research then) and eventually had the surgery. It worked beautifully for her. You might try calling them and see if there is anyone in your area who trained with them. The TN association also has a list of "approved" TN docs. Good luck!