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.

Liked by lauren123, annamh

Is there any other medical options to help deal with the pain? I have three boys depending on me and spending my days in bed is not what I want to do.

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I have atypical trigeminal neuralgia and have had no relief from meds. I had microvascular decompression surgery in July that helped very little. I am due to have a neurostimulator trial in December. My neurologist suggested I consider TMS, a non invasive treatment which is not covered by insurance for pain (used mostly for severe depression). Does anyone have any information about this treatment? Thank you.

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Hi, @shelley701. Welcome to Mayo Clinic Connect and for sharing some of your situation. I have moved your post to this active group discussing trigeminal neuralgia in hopes that some of the members might have some information and insights for you.

Here is some information on transcranial magnetic stimulation (TMS) that may be useful: https://www.mayoclinic.org/tests-procedures/transcranial-magnetic-stimulation/home/ovc-20163795.

We also have some members who have talked about TMS who might have some thoughts to share: @wendyw, @cowboy1997 and @hopeful33250. . @toshkana was also interested in talking about TMS.

What medications have you tried so far for your atypical trigeminal neuralgia that did not seem to help?

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@lisalucier

Hi, @shelley701. Welcome to Mayo Clinic Connect and for sharing some of your situation. I have moved your post to this active group discussing trigeminal neuralgia in hopes that some of the members might have some information and insights for you.

Here is some information on transcranial magnetic stimulation (TMS) that may be useful: https://www.mayoclinic.org/tests-procedures/transcranial-magnetic-stimulation/home/ovc-20163795.

We also have some members who have talked about TMS who might have some thoughts to share: @wendyw, @cowboy1997 and @hopeful33250. . @toshkana was also interested in talking about TMS.

What medications have you tried so far for your atypical trigeminal neuralgia that did not seem to help?

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I’ve used trileptal and lyrica and am on neuronton now.

Liked by Lisa Lucier

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I had gamma-knife on 8/3/17 and have very little pain but still have to take trileptal. Not sure I will be able to come off med. It was worth having the procedure. I feel much better even though I still have to take trileptal. Good luck!

Liked by annamh, Lisa Lucier

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That is so awesome they’re trying to change me around a meds again So I’m really considering it and my cardiologist recommended it

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I just received the mvd surgery Oct 30 2017 and was on drugs to contain my pain. My surgeon was Thomas Lovely in Latham NY. I was not a happy camper, but did my homework and found the right doctor for my condition. I have discomfort from the surgery, but no more electrical of my face and the top of my brain. Did you check into Gamma knife or a Chiropractic relief. I have much discomfort to hear about another person like your dad, I am 69 years old and wish you well in your pursuit to find relief for your dad. God bless Carmelo

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@carmelo1morrone

I just received the mvd surgery Oct 30 2017 and was on drugs to contain my pain. My surgeon was Thomas Lovely in Latham NY. I was not a happy camper, but did my homework and found the right doctor for my condition. I have discomfort from the surgery, but no more electrical of my face and the top of my brain. Did you check into Gamma knife or a Chiropractic relief. I have much discomfort to hear about another person like your dad, I am 69 years old and wish you well in your pursuit to find relief for your dad. God bless Carmelo

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Welcome to Connect, @carmelo1morrone.
You mention that you are still experiencing discomfort from the microvascular decompression (MVD) surgery. Is this discomfort remnants of the healing process?

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@carmelo1morrone

I just received the mvd surgery Oct 30 2017 and was on drugs to contain my pain. My surgeon was Thomas Lovely in Latham NY. I was not a happy camper, but did my homework and found the right doctor for my condition. I have discomfort from the surgery, but no more electrical of my face and the top of my brain. Did you check into Gamma knife or a Chiropractic relief. I have much discomfort to hear about another person like your dad, I am 69 years old and wish you well in your pursuit to find relief for your dad. God bless Carmelo

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yes I feel better, like any process it has to take time and each person is different. It only has been six weeks since the surgery, which was more intense then time was planned, due to many things that cannot be seen in a mri. Overall I am not in that pain anymore. I am not taking any drugs for pain, except ibuprofen. Don’t forget they cut through neck muscle and bore a hole in cranel area the size of a half dollar. I feel pretty good and I was expecting discomfort. I take no pills for trigeminal pain and do not have that pain, was worth it.

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@carmelo1morrone

I just received the mvd surgery Oct 30 2017 and was on drugs to contain my pain. My surgeon was Thomas Lovely in Latham NY. I was not a happy camper, but did my homework and found the right doctor for my condition. I have discomfort from the surgery, but no more electrical of my face and the top of my brain. Did you check into Gamma knife or a Chiropractic relief. I have much discomfort to hear about another person like your dad, I am 69 years old and wish you well in your pursuit to find relief for your dad. God bless Carmelo

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@carmelo1morrone

I am glad to hear that your surgery related pain is subsiding now. That is such good news that your trigeminal pain is gone.

You must be so happy that the surgery took care of that problem. Will there be physical therapy as a follow up to surgery?

Teresa

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@carmelo1morrone

I just received the mvd surgery Oct 30 2017 and was on drugs to contain my pain. My surgeon was Thomas Lovely in Latham NY. I was not a happy camper, but did my homework and found the right doctor for my condition. I have discomfort from the surgery, but no more electrical of my face and the top of my brain. Did you check into Gamma knife or a Chiropractic relief. I have much discomfort to hear about another person like your dad, I am 69 years old and wish you well in your pursuit to find relief for your dad. God bless Carmelo

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I am so glad you are pain free.

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For a few years now, on and off, I’ve had horrible nerve pain that shoots from my ear to my neck or scalp! Its like an electric shock, and no one understands!I have noticed it mostly happens when I’m out in the wind. I wonder if gabapentin would help?

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@suzeee39

For a few years now, on and off, I’ve had horrible nerve pain that shoots from my ear to my neck or scalp! Its like an electric shock, and no one understands!I have noticed it mostly happens when I’m out in the wind. I wonder if gabapentin would help?

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It helped me some, when it’s windy and cold it seems the pain is worse. I also take dilantin.
Still have frequent bouts of pain.

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I am sorry, I feel bad for anyone who has to endure this!

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@suzeee39

For a few years now, on and off, I’ve had horrible nerve pain that shoots from my ear to my neck or scalp! Its like an electric shock, and no one understands!I have noticed it mostly happens when I’m out in the wind. I wonder if gabapentin would help?

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Welcome to Connect, @suzeee39,

That sound so painful! We have a lot of members who’ve shared their experiences with Gabapentin, especially for chronic pain. From reading the posts on Connect, with regard to gabapentin, it seems to vary greatly from member to member and is really based on the individual. Here are a few discussion you may wish to view:

– Gabapentin https://connect.mayoclinic.org/discussion/gabapenten/
– Gabapentin use for neuropathy https://connect.mayoclinic.org/discussion/gabapentin-use-for-neuropathy/

@suzeee39, may I ask if you would share a few more details about your health? Have you tried other treatments or medications to get relief?

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