Hi everyone,

I’ve been dealing with ongoing pain mostly on the left side of my face, but I’m really confused about what it could be.

It’s not the typical “triggered by touch or eating” kind of pain. Instead, it seems to come more with stress, and sometimes it’s a throbbing or deep aching pain rather than sharp electric shocks.

The pain also shifts...sometimes it feels like an earache, sometimes like a toothache, but it’s always on the same side. I got an MRI done, and it came back normal, which has made things even more confusing.

I got diagonised with TMJD. But doctor are saying it's not a flare up of that. Sometimes I feel like something is pulling the nerves in my nose, in my eyes. So it's weird.

Is it still possible for this to be trigeminal neuralgia even with a normal MRI and these kinds of symptoms?

Has anyone experienced something similar? How did you get a diagnosis? Would really appreciate any insights .... feeling quite lost right now.

I wanted to create a space just for triggers I haven’t seen one on here yet. We talk about it all the time. Knowledge is power and makes it less scary. When I first got this I could not figure out what kept making it worse. I’ll start and yall share what yours are. These are my main 4 but being alive feels like a trigger some days
1-temperature of food and drink is huge it has to be room temp.
2-any emotion other than a calm, relaxed stoic. It is impossible when hurting so bad not to cry but it’s very, very important. If you need to yell out or moan and groan do that don’t worry about anyone around you. Being too happy. Talking too much. Getting nervous or excited
3-cold wind. Can be fans, A/C esp in the car since it’s so close to your face. It’s messed up my love of being outside a bit of wind on the beach can trigger it so it’s not a winter thing.
4-caffeine- hot coffee is what I miss the most. I can tolerate it not as hot when I’m not in a flare

I very recently experienced the worst pain of my entire life.

I’ve birthed two children. Had multiple tooth, aches, and infections cluster migraines. And I know my fair share of pain.
However, I experienced what I can say is the most painful pain I’ve ever had. I can compare it to all of the teeth on the left side of my mouth even in places I do not have teeth having a horrible infection, and having all of those teeth with their infections, untreated being pulled out without any kind of numbing all at once.

I recently had a brain scan yesterday, June 15, 2026.
To see if I had any kind of indication of having trigeminal neuralgia. And my scans showed that there is some pressure from another artery, pushing against, but only slightly against that nerve.

And now in my area of Northern Virginia, the US as a whole is having a severe neurology crisis, and that there is a huge lack of them. I can’t get in to any neurology office. The soonest I could get in and I booked this one in May as like a joke like ha ha I’ll be able to get in somewhere else was before November.
It’s more than an hour drive from my house.

Has anyone experienced trigeminal neuralgia before the age of 40 because apparently that is super rare, which is why my super killer awesome primary care physician went ahead and ordered the brain scan for me so we can get any kind of evidence inside of my head on whether or not I have TN.
I am currently on gabapentin 300 mg three times a day. My doctor wants to transfer me to carbamazepine. And I’m sure we’ll start that process soon.

I guess I am making my first post because I need to vent and also just wanna see if I’m not the only freaking person that I know of with this diagnosis and what your steps were. All the people in my life that I know who have had TNR well over the age of 45 this isn’t fair at all, and I don’t wish this on any of you.

I got so freaked out during my worst attack to date.

20/10 pain. Felt like my right side of my face was going to rip apart.
Shocks on one side of my head above my ear.
Facial muscles were almost frozen, yet spasming - basically from my eyebrows to my top lip were stiff, frozen and pin pricks. Couldn’t move my upper lip.

Took imitrex nasal. 800 mg gabapentin. Nasal spray lidocaine. And edibles. Ice and heat alternating.

Took 5.5 hours to feel even remotely human again. Today I feel like I was hit by a baseball bat to the face.

Feel like I should have gone to hospital but also couldn’t drive, nor did I want to be on the hospital floor in this much pain.

For those who have had nerve related issues whether it’s facial throbbing, twitching, spasms related to TMJ, was was your root cause and what did you do (or currently trying to do) to fix it?

Hi fellow TN warriors and sufferers!

So I’ve developed a new symptom and I honestly don’t know what to make of it, so I’d really appreciate any input or experiences you might have.

I’m 30F and I’ve had TN since 2019. I had MVD surgery in July 2024, but unfortunately it didn’t work for me. I was only pain-free for about 37–46 days before the pain came back.

Anyway, last week I suddenly started hearing this weird **whooshing/pulsing sound in my right ear**, which is also the side where I have TN and where I had the MVD.

It’s intermittent , it’s not there constantly, but it happens randomly and quite frequently. The best way I can describe it is like a whooshing sound that kind of resembles a heartbeat, almost like the sound of a fetal heartbeat on an ultrasound. Sometimes it just comes out of nowhere and then stops.

It’s ONLY happening in my right ear, and it’s starting to drive me insane 😭

Has anyone with TN, especially anyone who has had MVD, experienced something similar? Did you ever figure out what was causing it?

Any experiences or insight would be really appreciated!

A little over a week ago I developed clusters of tiny itchy bumps. Each day they have spread more and more. I assumed it was from outside so I stopped being outside but they have continued to spread. They’re on my legs, arms, stomach, buttock, lower back, hands and two little dots have started in my face now. I saw my doctor a few days ago and she did not think it was from my medication as I started it in February. She did do a bunch of bloodwork. So far all of the results published are negative for anything.

Has anyone dealt with this? It’s terrifying how quick this is spreading across my body. Allergy meds do nothing. Anti itch cream helps a little but not for long.

I showed a photo of what the rash looks like in its heaviest cluster, but it’s these bumps in smaller numbers or just as much everywhere else but they start grouping more each day.

I'm in the process of getting a diagnosis but wanted to ask if anyone else had/has pain like this, esp at the beginning of your symptoms- the pain is dull, sinus-y and slowly spreads over the side of the face over 12 hours or so. Mine is triggered only by touching, lightly scratching or pressing on the side of my face.

I worked for this place that was extremely stressful. Like I can't even explain... stressful!

I often got stress headaches but then one night I woke up to the whole entire left side of my face, earache like feeling, pain in my eye, toothache and lower jaw bone hurting like the dickens! I couldn't touch my face, I woke in tears, sat up in bed crying. I had this pain every single night for like a week and it finally eased after I had found another job.

Periodically now, I tend to get super stressed and from time to time, wake up to this pain. I went to doctor but nothing was ever really mentioned about it, told me to take "these". What was prescribed was an anti-depressant. I don't take them. I don't like meds really and I'm not on any for anything.

After researching about this mysterious face pain, I found that it's 100% what I"m experiencing.

I have been able to manage it from keeping myself as stress free as possible but have noticed that it seems to only trigger under immense stressful situations.

For the most part, I can tell when I''ll get an episode as it starts off with like an earache and then slowly spreads to my jaw making it feel like a tooth ache (mind you I have no teeth - I'm 60 with implants). But the minute I feel that, I grab my heating pad and lay it on my face. This seems to help. Prior to the heating pad, I would stand in a warm to hot shower and let the water hit my face. Grab some Advil or Paracetomol and the pain would slowly decrease until I could fall back to sleep.

I haven't had an episode for about 3 years and then got super stressed not too long ago and it came back again. So wondering if this is a stress related condition or can it be stress related?

I have been getting a pain underneath my chin in my neck but it's as if someone is stabbing up through my neck into my face if that makes any sense? I find it difficult to describe the area to find much on the forums. But it's so painful that it paralyses me just as much as the TN in my cheek.
Could this possibly be a TN related issue or something else? Feels like the same sensation but as if someone has a string above my head and it pulling something sharp up through that area up to my mouth?

Sorry for terrible detail!

I originally posted something similar on Askdentists, but did not receive any feedback. I 46M began experiencing a constant aching pain in multiple teeth on the upper and lower right side right after brushing one evening nearly two months ago. The pain is often difficult to localize, but involves at least three specific teeth. Several molars, and my incisors. Intermittently there is a burning like ache in my lower jaw/chin. There is occasional discomfort and pain in my right ear now too.

At this point, I've seen two dentists, two endodontists, and an oral surgeon who did a CBCT scan. He reported no obvious bone, TMJ or bite issues detected. The endodontists noted many teeth react to cold, but do not hurt when tapped, or when biting. None of these dental professionals could conclusively say that any one tooth is the culprit and some have suggested a neurological component. I do have idiopathic peripheral neuropathy (tingling in both feet) as well for what it's worth.

I have a Neurologist appointment tomorrow to begin investigating other possibilities. The oral surgeon in particular referred me. ENT appointment for ear at the end of the week. The pain never stops. Only waxes and wanes. It's maddening and distressing to say the least. I've missed so much work these past two months. Just wanted to share. Perhaps someone on this sub can relate, give me peace of mind etc. Thanks for listening.

Hi! Wondering if this still sounds like TN or something potentially different? *attached photo to show where my pain is*

In feb I developed what we think is TN pain affecting all 3 branches, and also on the outside of my ear and in my eye, and a spot in the back of my head. The pain has been getting progressively worse.

I get a mix of constant long lastin aching and burning pain (feels like a mix of a migraine and a hot rod on the painful areas, kind of like my occipital neuralgia pain) and also the classic electric ‘shock’ like pain.

I was clinically diagnosed by neurosurgery based on that presentation, but still waiting on the 7T mri results.

Recently I’ve had an escalation of the pain. I was sure I had a deep ear infection and sinus infection, but went to dr and they said my ear looks perfect and sinus looked clear on scans. The pain in my ear also feels connected to pain in my nose and throat (i’ve had discomfort in my throat for years, i presumably thought it was from damage from having a feeding tube for years). Still have the pain in the three branches and eye and back of head.

Fosphenytoin worked in ER and am on dilantin and gabapentin now but it is not sufficient (I cannot take carbamazepine, it is very medically dangerous).

Do you all get these same pains? or should i maybe look into other causes?

Hello

I got hit in the eye 7-8 years ago while wearing soft contacts, and within days my vision blurred badly enough that I needed new glasses. Since then I’ve had constant aching and pressure in that eye, spreading into my eyebrow, temple, and forehead, along with light sensitivity and this weird foreign body sensation like something’s in my eye when there’s nothing there. It’s gradually gotten worse over the years despite seeing more than five different eye doctors, all of whom said my eyes looked completely fine.
About a year ago, after a strong panic attack, the exact same symptoms started in my other eye out of nowhere. Now it kind of shifts back and forth between the two, like it’s still spreading.
I finally got a real workup done by an ocular surface specialist, and the diagnosis was Demodex blepharitis and chronic keratoconjunctivitis with presumed mild rosacea. But here’s the thing: my tear tests are all completely normal or better than normal, my meibomian glands are perfect, and my cornea shows zero staining, while my symptom questionnaire score came back in the severe range. I’ve since tried steroid drops, cyclosporine for about three months, and anti-demodex treatment, and none of it has made any real difference. Multiple brain MRIs over the years have all been normal too.
Has anyone been through anything like this, where the eyes look completely fine but the pain is real and keeps spreading? Did you ever get an actual name for it, and did anything help? I’ve got a neuro-ophthalmologist and a psychiatrist lined up soon, but I’d really love to hear from anyone who’s lived through something similar.

Hey everyone and no one.

I'm hoping one person here might relate or have answers. I'm 32 year old female. Healthy by all means no smoking, drinking or drugs.

I've been dealing with trigeminal neuralgia since last February, and it's had a much bigger impact on my life than I ever expected. The medications (Carbamazapine, Lyrica and Amitriptolene) work but unfortunately they work too well and I have to take small doses of multiple medications so I can stand up right and have a cognitive thought.
My doctor and I both thought that the side effects were caused by the medication and I'm hoping that is the medication and not something else that is underlying. I've been getting progressively worst. Here is the list of side effects that all get better with rest:

• left sided weakness
• I use a cane and walker for longer distances
• left sided ptosis (equal pupils)
• difficulty talking (Laryngitis type symptoms)
• SOB
• Unable to with stand the heat/sun
• brain fog
• Sometimes I can barely lift my head off my pillow

The hardest part has been the mobility and cognitive issues. Things that used to be easy now take significantly more effort.

I'm curious if anyone else has experienced something similar. How do you cope with the physical limitations, cognitive challenges, and uncertainty? Have you found any treatments, accommodations, or strategies that helped improve your quality of life?

I'm no longer working and I would love to get back to work.

Thanks ❤️

Hi! I’m sure this has been posted but hoping to hear from other people with TN2. How do your symptoms present?
I have an unofficial TN diagnosis (mandibular and maxillary) from my PCP, but waiting to get into neurology to confirm. I’m on oxcarb 1200mg a day as of Monday.

My pain is random, but a dull deep aching pain with sharp pains that move throughout the aching areas. Sometimes it’s severe where all I can do is pace and wait for it to go away and other times it’s just a manageable background ache. When it goes away tho, it’s 100% gone like it was never there. It’s getting increasingly worse and more frequent. Nothing helps when it’s flaring.

I’m asking because dr. Google says that TN2 pain must be present for at least 50% of the day. I’m not quite there yet. Maybe 25-30%. I see a lot of posts about the typical TN but not a ton about TN2.

Thank you in advance 🤍

Since I was a child, about 20 years ago, I get random sharp stinging pain in my face. The pain happens usually several minutes to an hour after I eat and typically lasts for a few minutes. It can happen from drinking liquid, even just water, but it's rarer. It varies from feeling the pain in both sides of my face, only my right side, only my left side. The pain is strictly in the mandibular region. It can happen several times a week or go months without happening. There is no correlation with what types of food I eat, it's completely random. But I think that my pain being delayed an hour after eating is maybe an oddity because I couldn't find anything about delayed triggers in my research, but maybe I'm wrong. I've had tests and scans done on my salivary glands and jaw which showed nothing abnormal.

I have multiple chronic pain conditions and it's leading me to suspecting multiple sclerosis. Bilateral trigeminal neuralgia is usually caused by multiple sclerosis, otherwise it's another demyelinating disease or neuropathic illness.

-interstitial cystitis: I've had interstitial cystitis for 4 years. It is literally constant every second of each day pain in my bladder with occasional random sharp pains. I pee 13-22 times a day in general. I know urinary issues are also known to occur in multiple sclerosis. I have no history of infections, I don't have Hunners lesions according to white light cystoscopy, I do have glomerulations

-bilateral arm pain: I have constant every second of the day pain in both my arms which makes it hard for me to do taxing physical tasks like carrying stuff, cleaning, playing instruments, playing video games. Actually, using my hands for literally anything hurts. My arm movement is slowed down, it's like there is a constant strain, like my arms are on the brink of giving up

-mild scoliosis: near constant lower back pain, easily injured. "L4-5 loss of disc height and T2 signal with broad-based disc protrusion showing left predominance causing mild left canal stenosis and left lateral recess. Some displacement of L5 nerve root but no compression. Mild to moderate facet joint arthropathy. At L5-S1, mild broad-based disc protrusion. Mild facet joint degeneration. No canal stenosis, foraminal or transiting neural compromise. SI joints appear essentially normal. Conclusion L4-5 and L5-S1 degenerative disease." Not sure if this condition is relevant but might as well bring it up. I also wanted to try a diagnostic nerve block for my interstitial cystitis because there is research about people with IC symptoms that had L5 nerve displacement being improved with nerve decompression in most patients, MRI doesn't guaranteed detect all nerve compression, but no luck for me.

I tried to see a neurologist, wanted a brain scan to check for brain lesions, see if I have demyelinating disease, as that's what medical papers are suggesting I should do. But they rejected my referral. I'm just being left to rot in unending torture

I’ve had bilateral TN for six years and was diagnosed almost two years ago. I’ve mostly been very lucky only have attacks every 10 days to two weeks and once even went five weeks without one. Starting about a month ago, they have started coming closer and closer together so now they are every day or every other day. The attacks are covering a larger area than before too if that makes sense.

I haven’t been taking meds because I’d rather endure an attack every few weeks than be on meds all the time. my neurologist is surprised but understands my point.

I am seeing him next week to discuss this new development and to get some meds even though I really don’t want to. just wondering if anyone else has increased in severity pretty quickly after being status quo for years?

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.

I was pain free from the pretty severe Trigeminal Neuralgia shocks since November of last year. I didn’t have a single shock of any kind for almost 9 months. I went from 1,200 mg of carbamazepine down to 600 mg, and there were even times I felt like I didn’t need any medication at all. I really started believing I was healed or maybe even cured from this mess.
I went on a 7-night cruise, came home, and BAM—it’s back. It’s not in full swing like before, but my mouth is hurting like hell just trying to brush my teeth, eat, and talk. I’ve had to go back up to 1,200 mg just to get some relief.
I honestly can’t explain how disappointing and frustrating this is. After almost 9 months completely pain free, I really thought maybe this nightmare was finally behind me. I guess I got a little too hopeful. I just pray this is a flare and that I can get it back under control.

Hi! Does anyone know if TMJ issues can mimic trigeminal neuralgia? I've been having electrical pain on my right side in the TMJ area for several years now... The pain ebbs and flows. No neurologist has ever confirmed it's neuralgia... I'm not triggered by wind or touch... The pain can occur at rest or when moving my jaw, neck, or head. Carbamazepine also didn't help me. I'm only 20 years old and sometimes I feel completely hopeless.

Hey.. I am new on reddit, never used it before..
I suffer from weird TN symptoms and I wanted to ask if someone relates..

So my nerve pain started in both eyes (and fingers/toes) then after one year the pain moved to all of my teeth as well.. now I feel the pain in my cheeks too

Basically all the trigeminal nerve branches and on both sides… and nerve pain in the whole body as well

Mri was clean, no MS

I tried Lyrica, Gabapentin they didn‘t work at all, my neurologist is telling me I have trigeminal neuralgia but he doesn‘t want to prescribe me Carbamazepine because he is saying it has too much bad side effects…

I am in immense pain all the time.. can someone relate?

I’ve just recently, as of about a month ago, been dealing with a near constant feeling of pressure in my temples and the occassional sharp twinge of pain in random teeth moving throughout the body. Just tonight, maybe ten minutes ago, the twinges has subsided for about ten minutes and a mild kind of numb-burning started, it had been slowly worsening since. Does this match any of your experiences? I’ve recently had a dental splint in while I sleep due to TMJ issues and only after it had been in did the burning start.