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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Amanda Roe | @amandajro | Sep 9, 2022
In reply to @annco2709 "Hi, I recently had a few lightening bolt type episodes of pain shoot across my face...." + (show)
@annco2709

Hi, I recently had a few lightening bolt type episodes of pain shoot across my face. It happened 2 days in a row, and then I had a terrible ear ache. I waited a week and went to my doctor. My ear was fine. I still have horrible ear pain and occasional "pressure" feeling in my check, all on the right side. I saw a neurologist who said it is Trigeminal Neuralgia, and has ordered MRI's of my brain and neck. I am also on gabapentin right now. Since the face pain I have started having all kinds of twitching in my calves, and I also have been experiencing involuntary movements like my hand will jump or my shoulder will shrug, and now I am terrified that this is something more serious, like ALS. I do not notice any weakness, and I know my anxiety is at an all time high. I am just wondering if anyone has experienced this? With it settling mostly in my ear it makes me afraid it is not Trigeminal Neuralgia.

Jump to this post

Hello @annco2709 and welcome to Mayo Clinic Connect. The sudden onset of symptoms surely has you concerned and anxious for good reason.

You will notice that I have moved your post into an existing discussion on Trigeminal Neuralgia, which you can find here: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

I did this so that you may more easily connect with others who have had a similar experience to what you described. Members such as @jmb73 @larryg333 and @paulboe may be able to come in and share more about their experience with you.

Trigeminal neuralgia is a condition characterized by pain coming from the trigeminal nerve, which starts near the top of the ear and splits in three, toward the eye, cheek and jaw, which seems to align with where you have experienced the pain.

When is your MRI? Are you getting an relief from the Gabapentin?

REPLY
1 reply
annco2709 | @annco2709 | Sep 9, 2022
In reply to @amandajro "Hello @annco2709 and welcome to Mayo Clinic Connect. The sudden onset of symptoms surely has you..." + (show)
@amandajro

Hello @annco2709 and welcome to Mayo Clinic Connect. The sudden onset of symptoms surely has you concerned and anxious for good reason.

You will notice that I have moved your post into an existing discussion on Trigeminal Neuralgia, which you can find here: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

I did this so that you may more easily connect with others who have had a similar experience to what you described. Members such as @jmb73 @larryg333 and @paulboe may be able to come in and share more about their experience with you.

Trigeminal neuralgia is a condition characterized by pain coming from the trigeminal nerve, which starts near the top of the ear and splits in three, toward the eye, cheek and jaw, which seems to align with where you have experienced the pain.

When is your MRI? Are you getting an relief from the Gabapentin?

Jump to this post

I am getting some relief from gabapentin. My mri is in a week. I hope yo get some understanding of what's going on. I feel like I'm on the border of becoming hysterical with worry.

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1 reply
Amanda Roe | @amandajro | Sep 9, 2022
In reply to @annco2709 "I am getting some relief from gabapentin. My mri is in a week. I hope yo..." + (show)
@annco2709

I am getting some relief from gabapentin. My mri is in a week. I hope yo get some understanding of what's going on. I feel like I'm on the border of becoming hysterical with worry.

Jump to this post

@annco2709 a week can feel like an eternity when you have anxiety about a situation, so I empathize with you. During this week, I would challenge you to give yourself loads of grace and focus on self-care to at least address your mental health while you wait for answers on your physical health.

What seems to work best for you for self care? Do you walk? Do you like meeting friends for coffee?

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1 reply
annco2709 | @annco2709 | Sep 9, 2022
In reply to @amandajro "@annco2709 a week can feel like an eternity when you have anxiety about a situation, so..." + (show)
@amandajro

@annco2709 a week can feel like an eternity when you have anxiety about a situation, so I empathize with you. During this week, I would challenge you to give yourself loads of grace and focus on self-care to at least address your mental health while you wait for answers on your physical health.

What seems to work best for you for self care? Do you walk? Do you like meeting friends for coffee?

Jump to this post

I do walk daily. I have a great family, but I think they feel I'm being crazy with my thoughts. I do realize how rare ALS is but I still can't shake the fear that this isn't just trigeminal neuralgia. I appreciate you thoughts!

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melrg | @melrg | Sep 10, 2022

Hello Annco,
First, I offer a hug and a cup of whatever warms you - this is hard stuff! And harder especially because no-one else can see it, or name it clearly as of yet. I well remember when I had my first Trigeminal Neuralgia 'attacks' - so painful I found myself on the floor, and being scared of what was going on, and what it might or might not be. It IS hard. Put your hand over your heart - apparently this has actual physiological calming effects - and press in slightly, just being with yourself in this difficult thing. If I could sit with you in your living room, I would. Whatever this is, you will learn how to be with yourself in it. And this great Connect site will bring people alongside. The unknown road will slowly slowly become a known road, and there will be others who walk it. I have come to learn this to be true. I don't know if this helps at all, but it is what I think I will have wanted to hear back in those early days of this condition.
After I'd had 3 'lightning-strike' painful TGN episodes that increased in intensity and length, and had received Carbamazepine and also taking Gabapentin, I headed over to a most sympathetic and compassionate friend's house, and stayed there for several days. Their gentle company was like a hand over my heart, soothing the frightened part of me, so I could begin to catch up with myself, with whatever was going on. I will be mindful of you on your road...

REPLY
1 reply
annco2709 | @annco2709 | Sep 10, 2022
In reply to @melrg "Hello Annco, First, I offer a hug and a cup of whatever warms you - this..." + (show)
@melrg

Hello Annco,
First, I offer a hug and a cup of whatever warms you - this is hard stuff! And harder especially because no-one else can see it, or name it clearly as of yet. I well remember when I had my first Trigeminal Neuralgia 'attacks' - so painful I found myself on the floor, and being scared of what was going on, and what it might or might not be. It IS hard. Put your hand over your heart - apparently this has actual physiological calming effects - and press in slightly, just being with yourself in this difficult thing. If I could sit with you in your living room, I would. Whatever this is, you will learn how to be with yourself in it. And this great Connect site will bring people alongside. The unknown road will slowly slowly become a known road, and there will be others who walk it. I have come to learn this to be true. I don't know if this helps at all, but it is what I think I will have wanted to hear back in those early days of this condition.
After I'd had 3 'lightning-strike' painful TGN episodes that increased in intensity and length, and had received Carbamazepine and also taking Gabapentin, I headed over to a most sympathetic and compassionate friend's house, and stayed there for several days. Their gentle company was like a hand over my heart, soothing the frightened part of me, so I could begin to catch up with myself, with whatever was going on. I will be mindful of you on your road...

Jump to this post

Thank you for your kind words. It's heartwarming to hear from someone who has experienced this.

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sdgoddard10 | @sdgoddard10 | Sep 18, 2022

I have been diagnosed with type 2 trigeminal neuralgia. I’m having a radio frequency ablation on September 20. Has anyone had this procedure done, and if so, what were the results.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 18, 2022
In reply to @sdgoddard10 "I have been diagnosed with type 2 trigeminal neuralgia. I’m having a radio frequency ablation on..." + (show)
@sdgoddard10

I have been diagnosed with type 2 trigeminal neuralgia. I’m having a radio frequency ablation on September 20. Has anyone had this procedure done, and if so, what were the results.

Jump to this post

Hi @sdgoddard10, There is an older discussion from 2017 on the topic here with some info posted in 2021:

-- Experience with Radio Frequency Ablation procedures?
https://connect.mayoclinic.org/discussion/experience-with-radio-frequency-ablation-procedures/

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jimliberty | @jimliberty | Sep 27, 2023

So sorry about your dad’s pain with TN. I’ve used carbamazepine with some success at times. Others not. It’s a horror for all this pain touch’s directly and their loved ones.

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Utah0114 | @simmons78 | Apr 4 11:56am

I take CarBAMaziphine 2× daily for my Trigeminal neuralgia. It's an anti seizure medication/anti convulsant. Before I was prescribed these I was having multiple attacks every day. It did take a little bit of time before they started working but when I take them on a regular basis I have no attacks.

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