Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the ‘strikes’ at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily ‘strikes’ again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having ‘strikes’ several times a day. The local neurosurgeons won’t consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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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:
https://connect.mayoclinic.org/search/?search=Trigeminal+Neuralgia+gamma+knife
Hoping you feel better soon.

John

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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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

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@reneewise50

Thank you Colleen for asking. I have an appointment in October with the neurologist. I am on gabapentin and Baclofen right now but may need to tweak it a little as the pain gets quite severe at times. Right now it seems to be going away but not entirely. Two days ago I was having 25 to 30 flareups with severe shooting, stabbing pains, but today I only have about 20 so far. At least it’s going in the right direction. Nothing really stops the pain, unfortunately.

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That’s so good the flare up are decreasing, mine are down, but seem to be swicthing to the other side

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@reneewise50

Thank you Colleen for asking. I have an appointment in October with the neurologist. I am on gabapentin and Baclofen right now but may need to tweak it a little as the pain gets quite severe at times. Right now it seems to be going away but not entirely. Two days ago I was having 25 to 30 flareups with severe shooting, stabbing pains, but today I only have about 20 so far. At least it’s going in the right direction. Nothing really stops the pain, unfortunately.

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How long did it take to notice the difference in pain?

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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.

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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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 ! !

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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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?

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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@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

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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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!

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@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.

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@gchildren7

Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling in mouth as if bad saliva draining from gums (like glue) as well as one eye feels horrible ( keeps eye patch over it-itchy as if something is in it & irritated).

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You are so right.

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