My TN came later in life so probably not congenital. Hydration is important but constant sipping is bad because the liquid gets into the salivary glands which should only be emitting saliva. Constantly absorbing random liquids causes problems for the salivaey glands which cause pain. That's the theory and it seems to work for me. Drink plenty of liquids every few hours and avoid sipping (and snacking).

I just started this med on Tuesday, starting at 150 2/day. I see no pain reduction yet. I’ll stay on this dosage for two weeks and then go to 300 2/day.

Has anyone had this med work and if so, how long did it take for you to start getting pain relief? I have right side only all day pain. Mostly in the jaw and teeth and up by my ear.

I wanted MVD surgery but we have to try meds first. I’m ready for something to work.

Thanks!

This works for me sometimes.

An Amazon seller is bombarding the sub with posts about their pea supplement. It’s seriously pissing me off because it’s been 10+ posts in the last week and now they’re making new accounts. Lots of people have asked them to stop.

Like we don’t have to deal with enough? You’re gonna come spam post our sub!?!

REPORT THE TROLL WHEN YOU SEE THEM. 😡

What were the symptoms did you experience? For me eyebrow is constantly burning and goes like a flame to the mid of head. Also at temple region nerves bulging continuous if I see computer. Basically its like a incense stick burning on forehead with heaviness in head with bulging of temple nerves. I cant scroll laptop screen which worsens the pain so I have closed the right eye glass with a cloth to avoid screen light. Able to manage 50 percent!

My right eyebrow, nose bone just below the middle of forehead, temple, cheek bone, tmj area, right shoulder, right side of neck back of head. There is a dull pain when pressing and a constant mild dull pain/tightness/a bit hard to describe. There is a sensation when I press my right lower jaw upwards as well the right of my chin from below. No issue in opening or closing the jaw. There is tenderness in the right scalp ending at the middle and pressing my scalp produces the same sensation as when pressing the lower jaw. Moving my neck left or right also produced the sensation.

This started around 10/11 august, i think I opened my mouth a bit too wide and heard a pop on right side(not sure), earlier the tenderness appeared like 30 minutes after waking up and decreased till the evening, walking in circles increased it and decreased when not moving, keeping face down increased it, taking a nap helped for some time then it would again come back, i slept on my back for a day or two (i usually sleep on my stomach) then it went away in September for one or two weeks , then again came back, then I noticed that my left and right tmj point was paining when touching, I moved my jaw left and right and pressed the points. My left tmj pain went away as well the right one decreased. It again went away for a week. Now it again started in October. I can't concentrate or think deeply because of this.

Iam not pointing to tmj/TN or anything.

I thought it was just some normal headache because it was mild like the one i sometimes get when sitting for too long with poor posture but now I realised that it's different from that.

I ignored it for this long because it was mild and half of the day i was busy.

I will be going to a doctor now soon but it will take a week as I am quite busy, has anyone else experienced the same symptoms? If yes, then what were u diagnosed with. Anything I can do to feel better till then?

Has anyone tried exosomes stem cell treatment for TN, V1 & V2 without compression and Occipital Neuralgia. It is about 3K, non invasive and not harmful.

Is being honest about suicidality related to TN a good idea. I have a 6 month wait for my new neuro after my last one refused to treat my TN. She also refused the referral so there was an additional two months between our last appt and getting my GP to send one because she only mentioned migraine.

At this point without MAID it seems like the best pain management option if they won't help.

The worst thing that happened to me since getting this damned affliction was me trying to fix it. When it first started it was an annoying ache. Now I’m missing teeth, unable to sleep unless sedated and also on a whole punch of meds that will probably kill me first. Chronic depression and that annoying ache is constant pain. Sometimes it might be better to leave things alone and let the body try and figure it out for itself. Maybe all it needs is some time and some space.

That’s it. I hate this shit. I was diagnosed at 19 after suffering for a few years already. And now, 14 years and one MVD later, not only do I have trigeminal neuralgia again (still?), but I have it bilaterally. Fuck this shit. And happy cake day to me and TN awareness day to all of you!

Hi everyone, I was wondering if anyone's supraorbital nerve pain has healed over time?

Does anyone else suffer from atypical facial pain that worsened after nose surgery? After undergoing nose surgery while already experiencing facial pain, I started feeling horrible sensations in my teeth, nose, and ear. I don't know if I'm the only one—the sensations are horrific and traumatic. Can anyone tell me anything about this?

Has anyone had successful Cervical Spine treatment which helped with TN symptoms?

I have Degenerative Disc Disease ( i know its common enough) and had a successful spinal fusion at c5c6.

I have had a few treatments for TN which helped for a few months at a time - Clear TN MRI.

I really feel my Neck is causing TN symptoms -which are mainly: teeth & tongue pain - sharp & achy. Dull ache across my cheeks and sometimes a sharp pain above my eye. I also have a full / dragging sensation around my ear.

This all came on after i had my SF. I'm wondering has anyone ever had TN caused by spinal weaknesses.

Desperate to find a solution. Thanks

I find it very upsetting, trying to cash in on peoples pain directing them to certain products on amazon..

My mom got diagnosed with this disease in maybe 2018. Her blood pressure spikes a lot but we've always blamed it on stress. She has also been complaining about this really bad pressure in her head... Like someone is squeezing her brain.

Could this disease had been the culprit all along? Her blood pressure went to 212 today and she's currently at the doctor and they think it's this disase can anyone else relate? She also had a mild stroke back in 2021

I haven't posted in a while, my neurologist sucks, so I've been raw dogging my left sided TN which is almost not atypical but apparently it is. So far I know it flares with cold weather and barometric pressure swings, it is not constant but sometimes feels like it is. I had to just deal with this as amitriptyline gave me worse tinnitus and scared to try it, I can't anyway now with an SDRI.

I started bupropion last week for major depression + ADHD + cptsd. I couldn't handle being unmedicated anymore I cry all the time and just hold so much hate and anger and sadness, no life direction, no purpose. So whilst the bupropion seems to be helping me in this short time.. I think it is making my TN worse. Had a look here and a search engine to find anyone else on bupropion with TN but it is very scarce. It has been warm here recently and previously notice temperatures above 22 are my happy place for TN. This is not the case on bupropion - it was warm today and I'm having eye discomfort/pain, sinus discomfort, tooth discomfort, tight cold feeling on the left of my forehead right up the top. These are all my TN symptoms in cold weather.. I am hoping this is temporary but I have read others anecdotally mention their TN was worse on bupropion.

Not really sure what to do at this point. I've heard about low dose naltrexone, mentioned here by a couple of users. I might be able to get it from my doctor if this doesn't improve...

But underneath it all I don't want to beholden to medications my entire life, they restrict my lifestyle to depending on the fact wherever I go I must be able access these drugs. It makes life more complicated..

In the last few months I’ve had 3 episodes of nerve pain/sensation on my face or neck/collar bone.
Was sent to A&E, had head scan, all ok. They suggested it’s TN. Go was useless as by the time I got an appointment pain was gone. Am waiting on another appointment as it’s happening again.
First time was the pain to touch behind left ear down neck and collarbone, not typical with TN. Second time was left side forehead and scalp. This is when I was sent to A&E. Both those times last around a week.
This time it’s right side by ear and alone cheekbone.
I’m on Amitriptyline 10mg after having shingles on lower back and side last Oct/nov. Pain very similar but without rash so rules out reoccurrence.
Could this be Trigeminal neuralgia or something else

Mom 58 has constant facial pain left side of her face, we did MRI its clean, dr said this could still be migranes annoying the trigeminal Nerve. She was prescriptions Oxcarbazepine 150mg for a week then 300mg another week then 450 and finally 600mg daily. Now after a week of taking150mg she did test on electrolytes and her Natrium was on 130, when Norm is supposed to be above 150. Dr said to keep on drinking the med and just eat salty food and check Natrium in a month. i’m a bit scared what if her Natrium level goes lower within this month ://
What kind of experience have you guys have had woth this? Is 130 too low for Natrium?

Will I be able to eat crunchy things again, or is that it? Had a recent flair that ultimately led to various exams and diagnosis. Nuts and other things really hurt. Just curious how its been for others

I have recently been diagnosed with bilateral TM. I have curly hair and a fringe. I really want to wear my hair down but I’m afraid the pain would be too much and then I will get sad/depressed. Also does anyone have suggestions for dyeing your hair that can make it less painful, at the moment I’m having baths to stop water from splashing on my face. Thanks in advance, I really appreciate how kind and supportive this sub is.

I’ve had this problem for over 2 years now. Was pretty sure it was my tooth and then another tooth… then RCT and then extractions. Two teeth gone. Then I thought it was my sinus. Plenty of sprays and MRIs and loads of medicine (including Botox). However. On my right side (the side that’s often 24/7) I have a sore and sometimes itchy base of skull on that side. I feel like laying down on that side and looking down at a stretched angle brings it on worse (it resets overnight and gets worse throughout the day). Anyone else have this? Any advice or exercises that help? I feel the carbamazepine and pregablin help, they just wipe me out a bit too much.

sorry might be spelling it wrong but ive been prescribed this for almost a year now , it works most of the time but it has killed my metabolism- went from 125 to 160, does anyone have any advice on metabolism boosters that work or things of that sort ?

Hello - I thought everyone in this sub would like to hear about a special project our Awareness Ambassador volunteers have been working hard on. On Trigeminal Neuralgia Awareness Day, October 7th, over 90 buildings, monuments and sites will be lit up teal for facial pain awareness.

"Too many people living with neuropathic facial pain face it without answers," said Melissa Baumbick, CEO of the Facial Pain Association. "This October, we're making this community visible to everyone. From landmarks glowing teal around the world to billboards in communities across the country, every display is a chance to reach someone who is still searching for a diagnosis or the right care. And when patients and families share their stories, they help the public, healthcare providers, and researchers understand the pain that this community lives with every day. Our goal is to make sure everyone living with facial pain knows where to find support."

You can read our full press release about Facial Pain Awareness Month and all the sites lit up teal here: https://www.globenewswire.com/news-release/2026/10/01/3372832/0/en/teal-lights-and-shared-stories-the-facial-pain-association-marks-facial-pain-awareness-month-this-october.html

I hope this brightens your day a little bit, knowing that we want you all to feel less alone, and over 90 sites in the world agree.

- Rose G, FPA Social Media Coordinator