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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

carmelo1morrone | @carmelo1morrone | Dec 22, 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

Gabapentin was added to my original oxcarbazepine when it no longer worked alone. Great combo for me. Then I seeked my surgeon, knowing that from there my pain would come back and I would have to change again. I signed up for surgery when I found the right doctor and never looked back. You have to be your own doctor and decide what is best for you with the internet those decision are a lot easier today. I figured out that you have to ween off the old pain pills and did that before surgery. I saved having to take those pills a lot shorter and this worked for me. You will know what you can handle and adjust according.

REPLY
carmelo1morrone | @carmelo1morrone | Dec 22, 2017

Exactly we are all a little different and what works for me might not work for you. You have to try some things that will work for you and ask a lot of question of your nerallogy he is your avenue to knowledge, to help decide what is best for you

REPLY
1 reply
suzeee39 | @suzeee39 | Dec 22, 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'm so sorry!

REPLY
suzeee39 | @suzeee39 | Dec 22, 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

Thanks for replying! I'm happy you are doing better!

REPLY
suzeee39 | @suzeee39 | Dec 22, 2017
In reply to @carmelo1morrone "Exactly we are all a little different and what works for me might not work for..." + (show)
@carmelo1morrone

Exactly we are all a little different and what works for me might not work for you. You have to try some things that will work for you and ask a lot of question of your nerallogy he is your avenue to knowledge, to help decide what is best for you

Jump to this post

So true! I am very sensitive to meds, and the next person might not be. What works for them, might not work for me.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 23, 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

Jump to this post

@carmelo1morrone Great use of humor, thanks for the smile! Teresa

REPLY
annamh | @annamh | Jan 13, 2018
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 to keep changing my medication formula I think when I go see the neurologist on the February I'm gonna talk to about surgery because once I have the comfort of the pain pills and Lake they work there within a couple months I have to change or add more medicine and I'm kind of tired of taking pills

REPLY
pcm1957 | @pcm1957 | Jan 13, 2018

I am so sorry for the pain he is having. I understand completely. My prayers that he will get relief. No one can truly understand the pain unless they have been there themselves. Best wishes.

REPLY
carmelo1morrone | @carmelo1morrone | Jan 16, 2018
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 have never experience that kind of pain. You should speak to your doctor and experiment to find the right combination. I will say that you should address this problem with your neurologist, because that is his expertise. Your GP is not a expert and may make matters worst

REPLY
annamh | @annamh | Jan 16, 2018
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's my neurologist that keeps, changing my meds, because they work for awhile, then don't.

REPLY
View MoreView Less
Please sign in or register to post a reply.