r/TrigeminalNeuralgia

i’ve been diagnosed for a few months now after ruling out everything else but it’s gotten worse the past few weeks.

i’m already diagnosed with ehlers danlos syndrome, postural orthostatic tachycardia syndrome, functional neurological disorder, lupus and complex regional pain syndrome.

i’m already in so much pain from all of that but over the years, i’ve been able to make it manageable with meds and some life style changes.

this terrifies me because it’s nothing my meds will touch. for the past 48 hours, i’ve been in a flare up and everything from eating/drinking to even air touching that side of my face makes it feel like i’ve been shot in the face and electricity has replaced my nerves.

im just such at a loss and so scared because ive gone through hell dealing with pain and finding meds to help and it feels that im just starting over again but now on hard mode.

where i live doesnt have the correct specialists to deal with this and ive been referred out to a larger hospital that can help but the thought of having to wait while dealing with this pain completely strips me down mentally.

im just genuinely so scared and in so much pain, that i, as an adult was crying to my mom about how id rather die than feel this way. even with knowing i’ll eventually get help, it doesnt help whats happening right now.

does/did anyone else feel this type of fear or despair when first being diagnosed or when first dealing with prolonged flare-ups?

i just feel so alone and like no one truly understands.

Hello, I(29M) was diagnosed with TN couple weeks ago after having my bad teeth done and my wisdom tooth removed. Ever since my last treatment(couple fillings and wisdom tooth removal), I did not have any attacks and my neurologist who is a professor seems to think that my condition could be a temporary thing. I only had zaps once which I had 2 seperate zaps that lasted maybe 1 second each other than that I had continuous pain attacks 3 or 4 times.My first pain attack was around 6 months ago after a root canal. Second one was around 3 months ago. Both attacks did not make me lose sleep or anything like that, they were more like a disturbance rather than chronic pain. But mu last attack I had zaps and one night I couldn’t sleep dur to yhe continuous pain. I hope that my doctor is right but I’m still pretty pessimistic after reading all your stories. I have seen 2 different doctors, both did not recommend drugs as of yet and were both telling me this may be temporary.

I know some are interested and this may be long because my meds cause me to ramble and it’s 7:40 am here and I haven’t slept.

I had my ketamine infusion on Thursday afternoon at 12:45, they infused over the course of 1 hour, I couldn’t tell you the dose. The infusion is absolute bliss! The most relaxed and connected with myself I have ever been. I put in noise cancelling headphones and guided meditations on self love. The experience was incredible, I went in when I had a flare (I also have continuous pain) I have never in the past 2 years known what it was like to be pain free. The feeling is like none other. I was super high

The effect wore off completely after 3 or 4 hours but I was able to walk by myself 1 hour post infusion. I was completely pain free, it was a miracle, my entire head felt like a bruise but there was no sharp pain. The next morning I feel great. At about 9 my fiancé and I took the dog for a walk and I was hit hard with wind and there it was, a real sharp stab, my eyes welled up and I tried to keep it together but it was so sharp and it stayed for about an hour. After that it was gone again. At about 4pm it started to rain and it hurt so bad I was ugly crying in the bedroom for about an hour before I just decided to take 4mg of hydromorphone which usually lowers it enough that I don’t cry.

I was in pain all night, it didn’t stop raining until 4am, I haven’t slept and it feels like a spear in my ear and the outer is burning ( Geniculate neuralgia or atypical TN the doctors haven’t agreed on a diagnosis). It’s supposed to storm today and I already know what my night looks like (hope I can keep it together through the Canada World Cup match this morning 🇨🇦). They said it can take up to a week to fully start working and I am to call them in 2 weeks if it doesn’t. We are going to try this treatment 3 times before we call it a success or fail.

We are going to try this treatment 3 times before we call it a success or fail. Hopefully it kicks in. I hope the next treatment is as blissful as the last, but it works quicker.

Here’s the thing. Since developing chronic pain, I’ve found that I’ve become a worse person.

Less patient.

More self-absorbed.

More detached.

I often catch myself zoning out in conversation because frankly, most of my mind’s real-estate is permanently tenanted by repetitive thoughts about my own state of affairs:

How bad is the pain right now?

Where does it sit on a scale of “ Huh… maybe I won’t need the backup pill today” to “Shoot me … shoot me in the head right now”?

How long ago was the last flare-up and how bad was it? What fresh hell may the next one bring this time around?

When is my next doctor appointment due? Have I scheduled it yet? Am I going to mention the flare-ups or are we doing the redacted “all good in the hood” version per usual?

Wait a minute … Did I take my morning meds?

Wait another damn minute … I think I’m running out of pill supply. How much longer do I have?

Yatta yatta yatta

It’s constant noise up there.

A rolodex of questions, calculations (and miscalculations) of recent events, attempts to forecast my entire future based on the current state of things, or straight-up agony from pain present in the moment.

And if I’m not thinking all that, I’m probably thinking “Jeez … I wish whatever they’re on about was my biggest problem…”

Which, let’s be real, is not a very charitable thought, even if kept to one’s self.

So I often find myself overcome with guilt. And fear.

Fear that my condition, apart from eviscerating any realistic hope for me to have a half-decent QoL, has also turned me into

an absolute twat

Into someone I don’t particularly like.

Have I permanently lost the ability to lock into a conversation about someone’s sick pet, dying mom, delayed promotion, failed business, love life, or money problems- all of which no less valid or real than my own experience?

Here’s the thing I didn’t know until recently.

There’s a cognitive bill to prolonged periods of suffering. And a hefty one at that

Studies have shown that people sustaining pain for long periods of time exhibit signs of impairment across a number of cognitive functions.

One recent study that induced sustained pain on a set of healthy participants and measured their brain activity revealed two distinct “alarms” misbehaving in their brains- which I will attempt to outline hereafter in layman-ish terms.

Let’s get into it. I’m going to need you to lock in for the next 2 minutes.

The first mischievous alarm is the “expectancy violation” alarm. We all have it. Think of it as a “status quo violation” alarm that goes off when we encounter setups that don’t align with our expectations - “mismatches”, if you will. A mismatch could be the convenience store down the block being shut on a Monday despite having been open every Monday for the past 10 years. Or walking into the printer room and finding a fridge instead of a printer. Or more interestingly, spotting a panda with wings (cute!).

The experiment found that this alarm is more feisty for “pain-impaired” people - as in firing up more aggressively. A pain-preoccupied brain detects more “mismatches” than a normal one.

Great, but what does that practically mean?

The practical implication of this actually reveals something deep: A pain-preoccupied brain latches onto “pain” and “suffering”-related information, and struggles to pull away from it. When something forces its attention elsewhere, the yanking-away registers a jarring mismatch.

In other words, for people with chronic pain:

Pain becomes a natural bias of the mind. A perpetual afterthought. An ever-present expectation

That is a chilling thought to wrap one’s head around.

Now, the second misbehaving alarm is the “executive emergency” alarm (fancy right?). Again, we all have it. This is the alarm that goes off when you need to redirect your focus – as fast as possible- from a task you’re actively engaged in towards something else that is suddenly demanding your immediate attention.

Picture this.

You’re knee-deep into finally cracking the perfect ending for a novel that’s been 5 years in the making and will potentially launch your career as the most revered writer of the century. Suddenly, you hear the much dreaded evermore dramatic cry of your toddler who seems to have tripped over his own shadow- again. Cue the executive emergency alarm. How fast can you drop your quillpen and sprint towards your crying toddler.

Can’t relate? Me neither. Picture this instead.

You’re driving down a residential street at 40 mph. Your foot is on the gas pedal, meaning your brain is already in “Keep. Car. Moving” mode. Suddenly, a red ball emerges seemingly out of nowhere and into your path, which, in all probability, means a kid may very well be sprinting after it.

In a healthy, free-spirited, unburdened brain, your attention snaps towards the ball instantly. Foot off the gas onto the brakes in milliseconds. Ball squishing successfully avoided.

In a pain-preoccupied brain, this snap comes slower. Your mind lingers in gas-pedal mode for a split second longer, forcing your executive alarm to shriek harder and louder “HIT THE BRAKES YOU SLUGGISH BASTARD!”

Not because you didn’t see the ball, or because you didn’t know you had to stop. But because you didn’t have as much “executive bandwidth” to begin with. Redirecting your focus costs you more effort and still takes longer. In other words:

Chronic pain keeps your brain stuck in first gear

It makes it harder for you to turn your attention towards an emergency. Because guess what … red ball / crying baby, you’re not the only emergency in the room, there’s another contender out there, a vociferous one too.

One that is not content to sit quietly in the margins - it wants center stage, and demands constant tending to.

One that has the power to fuck up your systems and jam your alarms by pulling off one of the most sophisticated, most expensive heists of all time (forget the Antwerp Diamond Heist)

The Brain Heist

Our cognitive resources are limited, and pain is the ultimate resource hogger. It competes for our brain’s attention. In fact, if attention-seeking was an Olympic sport, pain would bag the gold medal every time, followed closely by people who claim matcha tastes good.

Chronic pain, in particular, turns the better part of your brain into a full-time surveillance department. You’re not choosing to not be present in the moment, your nervous system keeps dragging your attention back there.

This is exactly what our brains have evolved to do over millions of years, detecting threats and keeping us alive.

Unfortunately, it can’t always tell the difference between a threat that requires immediate action and one that has become a permanent resident.

So it keeps checking.

Is it still there?

How bad is it now?

Has it spread?

Has something changed?

Over. And over. And over.

So what’s the moral here? Simple:

Give yourself grace

Give yourself grace if your pain has made you more “self-centered”.

Give yourself grace if your pain has made you a more irritable, less patient person.

Give yourself grace if the pain has forced you to slow down, squish a red ball, take a second longer to attend to your crying toddler, cancel plans, cut people off, or drift-off mid-conversation.

Pain consumes more mental bandwidth than you’d like. That’s not evidence of weakness, nor is it evidence of moral failure.

Trying to keep focused with a “chronic pain brain” is like attempting to read a book while someone keeps calling out your name in the background. Nearly impossible.

And whatever narrow slither of brain resources the pain has spared you … only you can decide what do with it. So do it selfishly, do it with conviction, and do it without letting anyone (including yourself) give you grief about it.

Does any one find that if they stay consistent with a routine that u get less flair?...like dont change anything or try anything new but do the same exact thing daily ...nothing new that u havent had before..same drink, same food, a swallow of coffee at the same time every morning..the same supplement at the same time every day ...if u stay on a pattern ur fine but does it seem if u change things up a little bit some where that u get snaps

Hi everyone,

I'm currently waiting for a diagnosis and had an MRI last week. My GP has said my symptoms are not typical of classical trigeminal neuralgia, but they're investigating because of the nerve pain I'm experiencing.

I'm wondering if anyone here has experienced anything similar.

My symptoms are all strictly left-sided and have gradually developed over several years.

History:

- Longstanding TMJ disorder (around 7 years of headaches.)

- Intermittent jaw locking for several years before progressing to permanent locking around 4 years ago

- MRI has previously shown disc displacement and mild osteoarthritic changes

- Severe nocturnal bruxism (teeth grinding/clenching)

- I wear a Michigan splint every night and take low dose amitriptyline

- I receive masseter and temporalis Botox 3 times a year (100 units with majority in my left side).

- Left side feels much more affected than the right in terms of joint pain, muscle tension and facial symptoms

- The left side of my face is visibly bulkier than the right due to chronic muscle overactivity

Current symptoms:

- Burning sensation in the mid-cheek

- Tingling and pins and needles

- Pulsing sensations

- Symptoms affecting:

- Mid and low cheek

- upper lip

- corner of mouth

- upper gums

- upper teeth

- roof of mouth/palate

- Symptoms are always confined to the left side

- No facial weakness

- stiff aching jaw joint which I know is obv TMD. Also tinnitus is left ear

- feeling if muscle spasms in left cheek

- Cranial nerve exam was normal according to my GP

Pattern of pain:

- Symptoms tend to start mid morning

- They fluctuate throughout the day

- Evenings and nights are usually the worst

- Some days the symptoms are like a background discomfort that is still very distracting, and some days it is agony.

Things that seem to HELP (which I know isn't typical for TN):

- Eating

- Chewing gum

- Talking

- Massaging or touching my face

- Exercise like walking and running

- Hot water from the shower

- Cool breeze on a walk

Things that seem to make it worse:

- Sitting still

- Resting

- periods of rest where my face isn't moving much

- Later in the day/evenings and nights

I know this doesn't sound like classical TN because I don't get electric shock attacks or typical triggers such as chewing, talking or touching my face. In fact, those things usually improve my symptoms. Mine is constant though and I don't get a relapse where my symptoms disappear.

Has anyone here experienced something similar, particularly if they also have chronic TMJ dysfunction or severe bruxism? Did you eventually receive a diagnosis such as trigeminal neuropathy, atypical TN, persistent idiopathic facial pain, or something else?

Thank you for reading.

I’ve had this condition for over two years now and have tried cleanings, periodontal treatments, fillings, root canals and extractions. All dentists say my teeth are fine. My NHS GP said not to touch the teeth, I thought I knew better and could swear blind it was my teeth. Why does it feel so real in the teeth? Even after extractions it feels like the teeth. I’m desperate for any suggestions of relief.

So sadly what is real and what i want to be real is not going to ever happen again ..I dont want pain and I dont want to have ever heard the word trigeminal neuralgia, but thats not the case...the truth is that no matter how much I wish the pain would go away and never happen the pain is going to happen and thats what I need to get in my thick skull,..that we are no longer living carefree and normal, we live under a black cloud of fear and we never know when that lightning is going to strike ..it is not realistic to think that the pain will not happen ...the pain is going to happen ...accept the pain , accept the fact that u are broken and nothing can fix u...now u need to learn how to accept the broken and how do deal with the pain ....and thats heartbreaking , my heart, my soul and my physical body is broken 💔 😢

Around Christmas 2025 my husband woke up with a sore throat and assumed it was allergies due to cedar pollen. But then the pain spread to his jaw where he fractured it in an accident as a teen 30 years ago. after searching trusty AI, we figured it could be TMJ, so we saw a specialist in January who took 3D CT scans and found a hole under the repaired fracture line. he shrugged his shoulders, and said he’d never seen that before and sent us on our way. Since then we have seen an ENT, had CT scan with contrast, ENT thought it was tonsillitis and prescribed steroids and antibiotics - neither helped. Now the pain was flaring in his entire jaw, inner cheek and throat. So we went to our regular dentist. She saw nothing wrong, took X-rays and shrugged. He tried acupuncture and that made it worse so then the pain spread to his eye. By mid February his pain was 24/7 level 8/10 so we went to a pain clinic who prescribed Lyrica, hydrocodone and Celebrex plus referred him to get medical marijuana as THC helps him sleep and ironically work out at the gym. We then saw a top maxiofacialist in our area who took more 3D scans and said his jaw was perfect but it does look like the nerve may be pinched in the hole in his jaw, so she referred us to a facial pain neurologist. Unfortunately the neurologist has a two month wait due to moving offices and waiting for city permitting. It’s now July and we have no solutions. Lyrica 200 Mg three times a day doesn’t help, Celebrex helps for an hour, hydrocodone for an hour and the pain comes racing back. It is gut wrenching to watch my 6’5 athletic husband writhing in pain and now spending his days with a heating pad or ice pack on the sofa most of the day. We have basically cancelled life as we once knew it. He is going into deep depression and is very angry and he Is transforming into an understandably bitter person though he is doing his best to still go to the gym, take care of things about the house such as lawn care, etc because he refuses to give up his routine. He is a gifted artist who hasn’t been to his studio in months, which is soul crushing. We will see the facial pain neurologist in a week and I am hoping anyone who has experienced this Fresh hell has suggestions for what works for them. He also had a nerve block done last week which gave him relief for 10 hours and then the pain was 12/10 the next two days. if Anyone who is living through this and has found relief, I’d be ever so grateful. My husband can barely function anymore and it’s frightening to witness.

Hi everyone! My name is Laura, and I was diagnosed with TN almost six years ago. I had MVD surgery four years ago. My remission comes and goes.

I'd love to hear your thoughts on starting a monthly TN support group over Zoom.

One of the things I appreciate most about this community is how we show up for each other. Trigeminal neuralgia is such a unique condition that it's hard for others to truly understand unless they've lived it. This subreddit is a wonderful place to connect, and maybe some people would like to have a little more time to talk, vent, ask questions, and support one another.

I'm trying to gauge interest in a recurring meeting. Perhaps something like the 4th Wednesday of every month. My vision is a 60–90 minute Zoom session with a structured but relaxed format so everyone has a chance to share.

In the meantime, I'm reading up on best practices for facilitating virtual chronic pain support groups so we can create a supportive, non judgmental place for all!

If this is something you'd be interested in, please let me know in the comments! I'd also love to hear your thoughts on:

-Would you attend?

-What day/time works best?

-What would you hope to get out of a support group like this?

Holy moly. I developed a tooth abscess sight on the nerve. 10/10 pain. Zero stars, do not recommend.

Does any one have pain like me ...I like to describe my cheek pain as if someone shot a rubber band right at my face...a snap sting pain some call it electric zap ....I also get the needle in the eye feeling ...like a sharp pin prick ...and I get those stings all over my face randomly from time to time,..they move around...could be my forehead..could be my eyebrow, eyelid, under eye,...but the big one is the cheek pop.....any one else feel these?

I developed a nerve irritation 8 months back on the right side of my face and it’s triggered by movement of my facial muscles, the triggers are smiling a lot, laughing, and talking loudly or for longer period of time. The pain start from my nose to my ears and upper lips and then spreads, nose and upper lips are common, but other areas depends on how much the nerve is irritated. Also if something hits my nose the pain gets triggered. Has anyone ever experienced this? If yes please help a girl out. My doctors can’t figure out a cause
I was on pregabalin for months but stopped it because I felt as if it wasn’t helping me as much

I feel like if im in the position of head tilted looking down it causes a little sting of pain and just today im really getting stings, I guess its official for me and it has gone bilateral, im now feeling these stings on the left side ...I had right side mvd but these stings are on the left now...and im in a full on downward spiral into fear and depression and wonder what am I going to do now...its been 2 years since right side mvd..I havent even been in contact with the neurosurgeon and I had never even really established a neurologist...and my primary has no clue about this...ughh..I dont know where to start again or what to do

I'm not sure exactly when my pain started, but it was last friday to the day that I realised I needed to get help. I thought it was my wisdom teeth and went to the dentist. I feel awful; I was definitely rude to the receptionist when I refused to fill out the updated patient form: I don't know how relevant it is, but I also have ADHD, and I struggled to barely write my name before I probably too assertively just refused to fill it out. I literally just couldn't.

The dentist got me to go a couple of blocks to get an X-ray of my wisdom teeth, which was also extremely difficult in what was at this point four days in to the attack that led to me being diagnostically prescribed carbamazepine by a doctor who did not stop googling for one second when I spoke to him. Thank god for that, I guess.

Once the dentist gave me the all-clear without putting any effort whatsoever into understanding what was going on besides what he decided was his very narrow health mandate in this situation, I went straight to the ER at St Vincent's hospital in Melbourne (I'm Australian).

After waiting for maybe an hour and a half, I was assessed by a nurse who at first gave me oxycodone while I sat back in the waiting area for my blood test results, which showed nothing. Two hours later I went up, and a new nurse took me inside to be more comfortable, and eventually a doctor came and assessed me (without using Google, which means he was literally clueless). At the hospital I was given the option of either staying late and waiting to do a CT scan or going home and coming back to do an ultrasound of my face and neck the next morning. I chose the latter option, but I had to take the ultrasound back to the ER and wait for hours until someone could read it.

The next day, the idea of going back to the ER with a blank slate overwhelmed my executive function, and instead I just made a regular appointment with a GP later that day.

That GP immediately started theorising about my jaw joint and mentioned TN quite early on in our discussion as he busily googled and read Google Gemini's summaries of his search queries. He prescribed me carbamazepine almost on a whim right at the end of the appointment after finally ruling out a competing theory he developed about a connection between my jaw and my antipsychotics (which amazingly was a real thing according to Google Gemini).

I'm not exactly sure how diagnosis officially works or whether I've been formally diagnosed, and I just told my adhd doctor that I had it, and he just believed me after hearing my symptoms and how they responded to the carpa (which was very well!).

Carbamazepine is a pretty intense medication. I took two 100mg and was worried that it wasn't working when the feeling of needing to pass out and the miraculous disappearing buzzing from my jaw occurred at the same time about two hours in. I quite literally had a panic attack because of how the medication shut down my central nervous system that first night; as much as I felt enormous pain relief, I don't like being forced to pass out. I called my sister and rode it out. My cat helped too by climbing onto the bed at a convenient time for anti-panic-attack snuggles.

I've adjusted to the drowsiness impact of the medication quickly, but I'm having trouble with dosing. My attack is ongoing and severe. I feel the very earliest stages of the nerve coming back to life and firing off warning signals that it wants to cause me pain, and the initial dosage schedule set out by the doctor who accurately guessed tm was nowhere near sufficient at 1 to 2 100mg pills every twelve hours. The morning after I first went on the medication, I woke up at 4 am with a near full attack back in my face, and went about the usual coping mechanisms I'd developed for the better part of the past week to accept it for a couple of hours until the carpa kicked back in.

Now I'm over the stage of having initially responded to the *worst fucking pain* I've felt since I snapped the growth plate in my ankle in two when I was nine years old and onto a new stage. That stage naturally led me to find a reddit group of people who suffer from TN as I now do. I'm neurodivergent, and I've long identified as having a disability, but now I have to come to terms with the fact that I have a chronic illness, and a famously painful one that isn't easy to treat. Fuck, it sucks. It really is shit. For me, and for all of you.

For all of us speaking, I guess, to mother nature herself, what the **actual fuck**, bro, is this bullshit?

*FUCK*

I've really realised I need to talk to people about this because when I talk to AI, it *freaks out* and makes me feel like I should be freaking out more. My mum is in total denial still. Anthropic's Claude (which *really* needs to improve its bedside manner) told me what this condition was traditionally called before treatment was available, and I looked it up, and it's true, though I won't repeat it here because it's so upsetting.

I took the week off work; I literally cannot afford to do that again next week.

It might not surprise you coming to the end of this self-indulgent story rant that I could literally go on forever right now. I actually tried to make this sort of entertaining, which was an uphill battle given the subject matter. Anyway, last week my face hurt, and this week I'm one of you, and my face would hurt if it wasn't for epilepsy medication!

Literally.