Living with Trigeminal Neuralgia

two years ago on mothers day weekend I was watching tv with my family eating popcorn I had a very sharp pain across my face along the lower jaw . I thought that a popcorn kernal had got in between my teeeth. I did probably the worst thing at the time I flossed and brushed my teeth . The pain continued and finally on Mothers day I went to the er because I thought that maybe I was having a heart attack at 38 years old.

the Er doc told me that it was a neuroliga [neuralgia] and gave me percocet and sent me home. The pain meds did not help .By the grace of God I got in with a neuroligist [neurologist] on tuesday and I was diagnosised and placed on trileptal. I had a reaction to that and since tegretol is in the same family I couldn’t take it.

The physician I worked for had been researching and told me about the cyberknife surgery at mission hospitals in asheville nc.In november I got in with a neurosurgeon ,everyone was great but the only complaint I have is I wish someone would have explained things in laymans terms. When you are in extreme pain you will do anything .

I had the surgery and it was not a bad experience . It was done on an outpatient basis and it did take but a few hours . The pain subsided for about six months and then I started feeling this tingling sensation . The trigeminal was back unfortunately it is in my eye area now along with the rest of my face. I am in the few percentage that it did not work on , I blame no one .

I took lyrica after that and it help but my copayment was very high and I gained alot of weight. Now I am on neurontin and it helps some but not totally I have to take a very high dose. The main thing that bothers about trigeminal is not being able to be outside in the wind or cooler tempatures . After the surgery the whole left side of my face is numb, my eye, half my tongue ,teeth there is a litle nerve damage in my ear . If you are considering the surgery remember if you have the surgery there is no going back it is forever. so think if you can live with these symptoms.