Trigeminal Neuralgia*

Didn't see your other post. I will let you know. I don't have pain on the other side. But the side with TN has been horrible. I haven't been able to go to the dentist because of pain. I have trouble with my vision. Constant pain.

God Bless you ! ! Hope you will be TOTALLY PAIN-FREE FOREVER ! ! Despite the pain, we often appear that we are fine, despite our suffering . . . . there are seldom any exterior "tells". Know that others truly understand ! !

You are so right. It is so hard to describe what I go through to family and friends because they don't see any signs of illness. So happy to find a support group with people who are experiencing the same symptoms. Hope to get better. Did you have Gamma-Knife also?

@vickilynn1959 , I hope things with the pain is getting better. I am now having the pain on both sides of my face, my teeth hurt most of the time. The weather seems to affect it also. My meds keep changing to help with the pain, I now take 400mg of Dilantin daily, cut down on the Neurontin from 2400mg daily to 1200mg in the am and add 600mg if needed. And lately I have had to add more. At times it even hurts to eat. Dentist said nothing is wrong with my mouth that he can see. I wonder if it is worth it to do the GammaKnife.
Anna

@scarlettkitten, I totally agree, but at other times it sure brings me to tears.

I have had all of your symptoms for about a year. I went to an ENT because I knew something just wasn't right and he sent me to my Neurologist. It has been really hard to work. I take Trileptal 300mg three times a day. It helped for about a month and then symptoms got worse. I felt gamma-knife was my only option. I Want my life back. Will keep you posted on my progress. Keep positive!

@vickylynn, when trileptal was in my med cocktail, had more pain free days than now, but my sodium kept dropping to a critical level and ended up in the hospital, just would like to be pain free. I sometimes catch myself taking the frustration out on my family. That's not good.

You are so right.

never thought of it affecting my vision

I get blood work every three months. So far no problem. I have to take it three times a day. I get pain about six hours after taking a pill. The only problem with this is it doesn't carry me through the night. I wake up with pain and a halo feeling in my right eye. My best friend doesn't get it that I am not as social anymore. I just don't feel like shopping or dinner with our friends. I feel lucky to make it through a day of work. My friends at my job can tell when things are bad because they are with me more than my husband or my best friend. Hard to have patience and enjoy life with so much pain. It has helped me to find people with the same problem I felt like no one ever understood what I go through.