Hi @gchildren7, welcome to Connect.
I moved your message to this existing discussion about Trigeminal neuralgia so that you can meet other members talking about the condition, as well as treatments such as gamma knife. @lamerex4 @bethf5 @uncbball @Restless67 have all had experience with gamma knife treatment, and all have reported temporary or no relief from pain unfortunately. I hope they will return to share their experiences as well as others participating in this discussion.

The side effects that you are experiencing sound miserable. How long ago did you have treatment? Did your doctor tell you how long you can expect to have these side effects? Will they go away?

I had gamma-knife surgery on Aug 3. Hope to get good results. I know it takes a while to see signs of relief. Couldn't handle the pain so I feel like this is my last resort. It has been really hard working I just can't concentrate on anything. Hope to feel better.

Hello @vickylynn, welcome to Mayo Connect. We are glad you found us. It's a good place to share your story with others with similar health issues, ask questions and learn what treatments have worked for them. Did your surgeon tell you what you could expect after the surgery?

@lamerex4 @bethf5 @uncbball @Restless67 have all had experience with gamma knife treatment, and all have reported temporary or no relief from pain unfortunately. I hope they will return to share their experiences as well as others participating in this discussion.

I did a search in Mayo Connect by clicking the small search icon at the top of the window (magnifying glass) using the phrase "Trigeminal Neuralgia gamma knife" and it shows a list of all the posts that contain the search terms. You might want to read through them to see if there is any information that helps. Here is the search link:

Hoping you feel better soon.

John

I really hope it works let me know how long it took to work and what I was told it paralyzes part of your face cuz I know pains no fun

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!

You are so right.