1. < Brain & Nervous System

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.

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scarlettkittaen | @scarlettkittaen | Jun 19, 2017
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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Hello, ladyjane85,
I'm sorry for your pain. I encountered TN 21 years ago before & after a root canal procedure. Then, I was using 800mgs. of Ibuprophen, every 4 hrs. . . . .which only took the edge off. Eventually, it seemed to disappear on its own. Now, having had another root canal, last March, seems to have ended the remission. I now am using 600mgs. of ibuprophen, every 6 hrs. & 10mgs. of Rx Flexeril every 8 hours. This dosen't eradicate the pain, but, hopefully, diminishes its severity. At times I feel hopeless; perhaps this Group can offer remedies, as well as support. NSAIDS can cause internal bleeding, so we can't take large doses.

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scarlettkittaen | @scarlettkittaen | Jun 19, 2017
In reply to @reneewise50 "I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg..." + (show)
@reneewise50

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

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Hello, Reneewise50,
I am your age & suffer from TN. It began @ age 45, with a needed root canal, and continued for awhile afterwards. Accupuncture made the pain worse; was on Ibuprophen, 800mgs., every 4 hous, with the result of only slightly taking off the edge of the pain. Now, @ 66, I had another root canal procedure, and, TN has returned. I now take 600mgs. of Ibuprophen, every 6 hrs., with Rx Flexeril, 10mgs., every 8 hours. Don't know that it helps much, as the pain isn't gone. The only relief is lying down, & sleep. Am trying AccuPressure. Let me know of any help you discover, even in home remedies.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 20, 2017
In reply to @reneewise50 "I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg..." + (show)
@reneewise50

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

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Welcome to Connect, @scarlettkittaen.
I'm glad you found us. Please meet @lamerex4 @trigeminalwoman38 @mooneagle @reneewise50 @bigred80 and others sharing in the TN group. As you read through the messages, you'll see a number of ways people have successfully reduced the pain as well as things that didn't work for them.

ScarlettKittaen, have you started accupressure treatments already? Are they helping?

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Gchildren7 | @gchildren7 | Jun 23, 2017

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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10 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 23, 2017
In reply to @gchildren7 "Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling..." + (show)
@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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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?

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vickylynn | @vickylynn | Aug 5, 2017
In reply to @gchildren7 "Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling..." + (show)
@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 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.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 5, 2017
In reply to @gchildren7 "Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling..." + (show)
@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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annamh | @annamh | Aug 5, 2017
In reply to @gchildren7 "Bad results from gamma knife to treat trigeminal neuralgia. Pain is gone but has horrible feeling..." + (show)
@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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annamh | @annamh | Aug 6, 2017
In reply to @reneewise50 "Thank you Colleen for asking. I have an appointment in October with the neurologist. I am..." + (show)
@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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vickylynn | @vickylynn | Aug 6, 2017
In reply to @reneewise50 "Thank you Colleen for asking. I have an appointment in October with the neurologist. I am..." + (show)
@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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