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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annamh | @annamh | Dec 11, 2017
In reply to @carmelo1morrone "I just received the mvd surgery Oct 30 2017 and was on drugs to contain my..." + (show)
@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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suzeee39 | @suzeee39 | Dec 12, 2017

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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11 replies
annamh | @annamh | Dec 12, 2017
In reply to @suzeee39 "For a few years now, on and off, I've had horrible nerve pain that shoots from..." + (show)
@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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suzeee39 | @suzeee39 | Dec 12, 2017

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

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14 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 12, 2017
In reply to @suzeee39 "For a few years now, on and off, I've had horrible nerve pain that shoots from..." + (show)
@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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suzeee39 | @suzeee39 | Dec 12, 2017
In reply to @shelley701 "I have atypical trigeminal neuralgia and have had no relief from meds. I had microvascular decompression..." + (show)
@shelley701

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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What is this non invasive procedure that you mentioned?

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suzeee39 | @suzeee39 | Dec 12, 2017
In reply to @suzeee39 "For a few years now, on and off, I've had horrible nerve pain that shoots from..." + (show)
@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?

Jump to this post

I also have fibromyalgia, and was given gabapentin for nerve pain. I haven't tried it yet, because I am very sensitive to meds! But, this shooting pain is unbelievable! I'm not that old, and feel like I have no life!

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annamh | @annamh | Dec 13, 2017
In reply to @suzeee39 "For a few years now, on and off, I've had horrible nerve pain that shoots from..." + (show)
@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?

Jump to this post

Pain changes everything,  I fight it daily. 

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suzeee39 | @suzeee39 | Dec 13, 2017
In reply to @suzeee39 "For a few years now, on and off, I've had horrible nerve pain that shoots from..." + (show)
@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?

Jump to this post

It sure does!

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carmelo1morrone | @carmelo1morrone | Dec 22, 2017
In reply to @carmelo1morrone "I just received the mvd surgery Oct 30 2017 and was on drugs to contain my..." + (show)
@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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Teresa I hope not. I will be seeing the surgeon end of Jan and will address that question. I am feeling little better every day, sometimes you don't notice the change , but by the end of the week you can make the comparison.I hope this little comic relief I said to my family you can take on a lighter note. As you know this effects majority of women, so I tell my family I must be coming out of the closet.lol

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