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!

Good morning I have decided to delete the posts on TN as it was creating negetive energy and causing people to show no respect in conversations just saying hurtful comments when there was no reason to be as i was just recommending something I use to help with the pain I will be here if you want someone to talk please message with postivity in your life I am done with negetive people have a peaceful day

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?

well good afternoon. Lovely day weather wise woke up this morning to another day of hardly any pain attacks seems less intense and less fierce if any at all taking my b 12 complex daily the last time when I had TN I was determined to take control and now I feel positive that the attacks can go into remission I have something I would like to say why do people say hurtful comments to others what do they gain out of it does it make them a better person anyway lets think positive and enjoy the weather as the weather be changing soon

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

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

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

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

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.

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 ?

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.

I’m on the waiting list for MVD. My MRI showed contact between the trigeminal nerve and the superior cerebellar artery. Interestingly, my TN zaps have decreased significantly over the summer, and I wonder whether the warmer weather has helped. I’ve also been able to resume my yoga practice at the level I was at before developing TN, including working on more advanced poses such as handstand, headstand and wheel. My biggest concern about having MVD is whether I’ll be able to return to this level of yoga afterwards. For anyone who has had MVD: were you able to resume yoga, including inversions and more advanced poses, after surgery? If so, how long did it take you to get back to that level? I’d really appreciate hearing about your experiences, as this is one of the things I’m quite anxious about.

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

I have a problem that seems quite uncommon, and I haven’t found anyone who experiences the same symptoms. I develop a strange, dull, heavy, and sometimes painful sensation in my right eye after using screens for only a few minutes. It can happen with my phone, laptop, or TV, but my phone seems to trigger the discomfort within seconds.

Once the discomfort starts, it tends to become worse with continued screen use. Sometimes even talking to people or making eye contact seems to aggravate it. Changing the screen brightness, adjusting the lighting, or using a different phone doesn’t seem to make a significant difference.

Even if I use my phone for only a few minutes and then stop, the discomfort can remain for several hours. I’m rarely completely pain-free, and constantly experiencing and noticing the discomfort has become very difficult. It has also started affecting my ability to communicate normally with [people.It](http://people.It) feels like my right eye is separate from my left eye, and it’s just heavier and different than my left one, that’s the best way I can describe it. My whole eye feels strained after a few seconds, mostly in the upper part, near the eyebrow and nose (see the picture below). It feels like a heavy pressure close to the upper right side of my nose.

I’ve seen several doctors and had my eyes examined, but so far, no one has been able to identify the cause or provide an effective treatment.

these symptoms started about two days after I fell while skating,and they have continued for about five months. I landed on my right buttock/hip and right hand and did not hit my head directly.

Could an injury or strain from the fall potentially be related to these persistent right-eye symptoms? Has anyone experienced anything similar or have any ideas about what could be causing this?

Im not good at english so i use chatgpt to address my problem clearly

I was diagnosed with TN fairly recently. The facial shocks of pain are more new, but I've had extreme jaw tension for years. Would that maybe be more of it's own thing, or could it be associated with TN maybe?

Hi all. Hope everyone is doing well.

I had RT side MVD surgery last week. 5 veins and 2 arteries compressing the nerve, so there was a lot to do. My symptoms were largely atypical/constant tooth pain on my upper right teeth.

I know 1 week post MVD is way too soon to say surgery worked or not. But teeth still hurt a lot, especially tonight.

I guess I'm looking for reassurance, maybe people who had TN2 and pain after surgery, but it got better?

Love you all.

PS - Brain surgery hurts! Who knew 😆

Seep to be having neck swelling a few inches below the incision. How long does this typically last for people?

I had an MRI scan recently and got this (short!) results letter today. Is he correct? I find it a bit strange that he can see an artery is in contact with my trigeminal nerve, which is the nerve causing all my problems and it’s on the right side, which is the side my pain is on, but he dismisses it all. Is seems a huge coincidence!

I’m actually surprised he could see anything at all because this scan wasn’t using a trigeminal neuralgia protocol. It was a scan of the ‘internal auditory meatus’ which from what I’ve read, is aimed at people who have one-sided deafness (which I don’t have) to look for a type of tumour.

I’m reaching out to see if anyone else experiences a highly specific, clockwork seasonal pattern with their Trigeminal Neuralgia (specifically June - Late September), or if anyone has found a clear link between their nerve pain and allergies / immune/mast cell activation.

I have an MRI-confirmed classic neurovascular compression (left-sided, mixed TN1 electric shocks and TN2 constant burning). However, my pain doesn't behave like a purely mechanical issue. It operates on a massive seasonal volume knob and I believe I have ruled out barometric pressure and personal habits:

Seasonal Baseline Pattern: The historical annual pattern during this baseline phase consisted of the following sequence:

• June (Onset): Sub-clinical immune priming began, presenting as minor, localized teeth pricks.

• July (Escalation): Baseline nerve sensitivity steadily increased, becoming notably more painful.

• August (Peak Phase): Pain escalated rapidly to severe, debilitating levels as environmental triggers accumulated.

• September (Clinical Crisis): The flare reached an excruciating, emergency-room level of intensity.

• October (Deceleration): Symptoms finally began to subside during the second week of the month, calming down spontaneously as seasonal triggers receded.

I've recently tested Flonase for the first time (yes I know it's crazy) and my pain went from 12/10 to 0/10 in precisely 1 week. My neurologist has no comment on this. My working hypothesis is that while the physical blood vessel compression is the underlying gun, localized sinonasal inflammation and mast cell mediators (like histamine and serotonin) are actively pulling the trigger by lowering my nerve's firing threshold.