Trigeminal neuralgia treatment

Posted by willow5 @willow5, Jul 24 9:04am

Has anyone done treatment beyond gabapentin for trigeminal neuralgia? The pain is horrible. I prefer not to take the gabapentin, it makes me tired. It’s also a Class V in many states, which is a little concerning.

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John, Volunteer Mentor | @johnbishop | Jul 24 10:15am

Hi @willow5, There are quite a few members who have shared their experience with trigeminal neuralgia treatment in other discussions. Another member shared there experience here - Trigeminal neuralgia worse 10 years after MVD now tentorial meningioma: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-worse-10-years-after-mvd-now-tentorial-meningioma/. @oldwal @aderaw97 @janeamartin and others may have some experience to share for treating TN.

Mayo Clinic has some information on the different medications and treatments for TN here - https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347.

You might also want to look at other TN discussions. To find all relevant TN discussion:
1. Go to the All Discussions page: https://connect.mayoclinic.org/discussions/all/
2. Enter search term "trigeminal" in the Search Discussions field. (On mobile click the magnifying glass, then enter search term.)
3. Click Enter. (On mobile, click Search.)

windyshores | @windyshores | Jul 24 5:24pm

I cannot take gabapentin. My neuro suggested baclofen, which I already had as needed. But cannot tolerate that on a regular basis. Look forward to responses. Sorry you are suffering!

dlydailyhope | @dlydailyhope | Jul 25 7:16am

@willow5
Just wanted to let you know that when I looked up class 5 (V) drugs, there is a low risk for addiction. Class 1 (I) is the most addictive. I have some TN symptoms but only take Acetyl l carnitine and alpha Lipoic acid supplements for small fiber neuropathy (helps some) and a low dose of gabapentin (100 mg every other day) which makes me dizzy.

Do you notice anything that triggers your symptoms? Have you looked up ways to avoid triggers?

1.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
2.
https://my.clevelandclinic.org/health/diseases/15671-trigeminal-neuralgia-tn
3.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/trigeminal-neuralgia

willow5 | @willow5 | Jul 25 9:56am

I’m not concerned about the addiction part, I just found it interesting since it is prescribed so frequently here in California, but Class V in the midwest

I have no idea what triggered the first episode a few months ago, I had a facial two days before this last episode, so think that’s what triggered it. It was really horrible and lasted five days. I am now back to 100 mg at night. I was trying to wean off it, every other day, and not sure if that contributed to the episode or not. I am what apparently is called pill adverse. I do try to find other ways to take care of things without medication. Being vegan and an avid runner and weight lifter wasn’t enough to stay off cholesterol meds or blood pressure meds - thank you genetics.

Mine is primarily on the top of my head with some shooting of pain through the ear and jaw. Glad to say the episode seems gone. That was pure hell! Most of what I read is it talks about face pain, which isn’t what I have, but always starts in the head and goes down.

I’ll check the links you sent. I’ve not read the Hopkins one. Thank you