Trigeminal neuralgia: What helps stop the pain?

Hi, I've had TN since 2018, it effects my eyelid and forehead,
My first pain did go away on its own in 4 months but it came back in 2021 and I had a major extreme hit of pain. I was perscribed gabapentin and it helped. Pain went away until December 2022.
I've had it 7 months now. I've been on 6 gabapentin pills a day. The pain is mild but I am in fear of a major flare up. I avoid touching my eyelid.
I can only tell you that the TM comes and goes on its own. It's a strange disease.
I do have an appointment in July with a TM doctor.

I’m very pro Vaccines but apparently people with some underlying conditions of bad reactions and I believe that the vaccine might caused me my neuropathy. Yes, I do do I believe the vaccine still help millions of people yes I do.

I have had trigeminal neuralgia for 15 years. At year 5 it came on like a freight train. Went to neurologist at advice of GP. Was put on Oxcarbazapine which worked like a charm but after 3 years started affecting my liver and also blood sodium dropped dangerously. At that point saw Neurosurgeon at Penn Medicine Dr John YK Lee and ended up getting a Laparoscopic MVD. This surgeon gave me my life back but now 6 years later it's back. I'm back on oxcarbazapine but only 300 mgs a day and next step MRI and hopefully appointment with Dr Lee. I am 70 and my neurologist told me there are other non invasive procedures one being Gamma knife. We shall see.

Hello @valarino, Welcome to Connect. It must be difficult to say the least to have the symptoms come back after 6 years of having your life back. It sounds like you have a great neurosurgeon and hopefully will find out more at your appointment. There are other discussions you might also find helpful for trigeminal neuralgia. Here is a search results link to the other discussions - https://connect.mayoclinic.org/search/discussions/?search=Trigemial%20Neuralgia%20%20%20.

How soon is your appointment?

First need MRI. That is scheduled for July 22nd. They wont make an appointment without that.

There are so many types of neuropathy. I am stunned. Docs just gave me the regular old name of Peripheral Neuropathy (PN).
I take 2700mg of Gabapentin for two months. Helps but I'm loopy. Cat's Claw is a new natural remedy. Marijuana also helps from the natural world.

Cheers all!
Jill the Pill

I have had some episodes with trigeminal neuralgia. But the most excruciating and scary one happened last week! I truly could not stop wishing I could reach my phone or the fall alert button. I could not even move enough to talk! I thought I was having a stroke! Or that I would wake up with severely belspalsey. I finally was able to relax enough to fall asleep after a couple hours. The pain didn’t go away completely until I had surgery Monday July first. But my orthopedic surgeon and his pa told me that the facial nerve pain was not a part of the cervical pain I was having surgery for. Even though I was experiencing myelopathy. The nerve was from behind my ear then the pain came along the bottom of my jaw up under the base of my cheek bone across to the inner side of the bridge of my nose and ended about the middle of the upper eyebrow! It was worse then the very first time I had an injury which. Herniated L3/4/&5 all because I stiff up from buckling a car seat my 2 year old climbed into. It was hosnestly the scariest thing I had experienced medically ever! I just started the pregabalin about 2 months ago after being on gabapentin for several years. The neurologist suggested that it was just enough of a chemical difference that it could help with some of the nerve pain and more with some neuropathy that seems to be starting in my hands as well as my feet for a long time. They told my the neuropathy was caused from the lumbar stenosis and that the hands started with the same thing from cervical stenosis. But the neurologist said it could be from small fiber neuropathy which might be the underlying cause of a diagnosis of fibromyalgia that I quit talking about years ago. However I have had end plate bone spurs in both lumbar and cervical spine many time. And the 3 that were a big problem were at least 3 years before I had been given an authorization for lyrica. There was never a solution other that walking but with the arthritis in both lumbar and cervical spine for longer that the fibromyalgia, walking wasn’t exactly something I could do much of for many years. Then when I came back to the states after have 30 days of intense medical treatment outside of the us I walked a lot! But still had a lot of the neuropathy and mayo facial pain syndrome in 4 different parts of my body, so I still didn’t discuss the fibromyalgia diagnosis. I do now. It’s been over 20 years and there seems to be more understanding about it being real not hysteria or attention seeking. I will be very grateful to have that part of my personal medical history no longer affect how I speak to doctors, of all genders, about my sensations and degree of pain levels.
Thank goodness for therapy and my ability to see where I made the wrong choices to stay quiet and perpetuate that narrative. I have learned to speak with the compassionate understanding that we are all learning and things will always continue to grow in different ways. Today we have a choice , mostly, of who we want to be deeply intimate with our experiences.

I have trigeminal neuralgia have been on gabapentin since 2013take 1200m 3times a day. I can't go off of it anymore. My last attack was horrible and now I have to stay on all the time. I can't have an Mri due to having stainless steel in my ears. As far as I have been told there's really nothing else they can do.
The med is working for now I just pray it will continue since I can't increase anymore. If anyone knows of something new please let me know. Thank you

Do you have Tn2? How did the doctors finally figure it out? My daughter is in so much pain having facial pain and headaches that don’t stop.

What about surgery to put in a cushion?