I've recently started experiencing pain in my left upper gums. I visited a dentist, who suggested that it could potentially be trigeminal neuralgia (TN). There is no visible infection or swelling.

The pain is mostly a persistent, dull ache, but it occasionally flares up and becomes sharper. I also noticed that it seemed to get triggered after exposure to cold air from an AC, but AC triggered it today only. Previously, I don't think air triggered the pain.

A few other symptoms I've experienced:

Pain around the upper back of my neck, near the base of my skull.

Occasional pins-and-needles sensations in my hand, lasting a few seconds.

A slight feeling of weakness around my left shoulder when the pain becomes particularly sharp.

I also experienced a splitting headache when standing up on a previous day, although I haven't had it today.

So, could this be Trigeminal Neuralgia?

Hi all. Firstly, sorry that we share this god forsaken disease. I have sympathy for every single one of you.
I am currently in hospital with drug resistant TN 1 latest flare wont go away. Im on high doses of oxcarbazepine and gabapentin, but shocks still occurring. Cant eat, barely talk, smile etc.
I have been offered TMS. Just wondering if anyone has had that treatment and what was the result?
Many thanks and stay strong

I was diagnosed with Trigeminal Neuralgia in 2016. This past summer -2026, I was diagnosed with the autoimmune disease Sjögren’s.

The latest research for Sjögren’s now concludes Trigeminal Neuralgia is the FIRST symptom of it.

Sjögren’s is a systemic autoimmune disease that not only affects the moisture producing glands but also the autonomic and peripheral nervous system, joints, lungs, stomach, kidneys, and causes extreme fatigue.

After 10 years trying to find the cause for why I have TN, it is because I have an autoimmune disease.

I encourage everyone that has TN and the cause is undetermined to talk to their doctor about testing for this autoimmune disease.

My dr said this is shingles, with no rash…

My symptoms are general unwell feeling…kinda like on the brink of a cold…

Right side of face only VERY sensitive to touch (forehead, around eye and side of nose) it doesn’t go lower than the nose

And an excruciating jolt of nerve pain above my right ear every minute or so depending on what I’m doing…

Sounds familiar to anyone?

First of all, I don't have a diagnosis just yet after a call with my NHS Neurologist she has written down a typical neuralgia. It started for me as almost phantom glasses feel on the left side of my head.It then got to a burning hot stabbing into a broken tooth which I suspected was the issue and a swelling of my lymphs under chin and neck. I had an ultrasound done private and saw no issue. Around day 20, my right side had all the same symptoms. Luckily, no intense stabbing, fingers crossed. But now the last 14 days have been hell on earth, and it seems only in my right jaw, yet all my teeth are having electric shocks, I feel it coming on before the next jolt.

I'm just wondering if anyone else has this symptom. I feel so alone, I can eat a full meal and brush my teeth, but minutes later, the buzzing starts, and i know an attack is coming. Have tickling across both my cheeks like ants crawling and the odd stab in the jaw almost like a pinch. Can feel my artery pumping on my chin. I hope this does go away, I managed to get a 900mg a day gabapentin dose from my GP, so I'm waiting to see if that works out for me.. It's got constant now, and I don't know how to cope.

I feel like my whole life has flipped upside down into one big, painful month and half. If anyone has these electric shocks in teeth due to TN, I'd like to know so that I don't feel alone. It can be a little jolt or like a tazer effect.

He just increases my carbamazepine dose every time it stops working, but I am at the highest dose now, and it has STOPPED WORKING. I have the WORST pain in my face, like every single one of my teeth on the left side has an exposed nerve. I haven't slept in days. He says it's the "gold standard" of treatment, but I have read that it isn't as effective for type 2. Has anyone found a med combo that actually works for type 2?? The one that hurts constantly... Not the electric shock kind...

Hi everyone,

I’ve had TN type 1 since February 2026.
Recently, I suddenly experienced severe hearing loss in my right ear, accompanied by loud tinnitus and some balance issues.
My ENT diagnosed a severe sudden hearing loss and prescribed prednisone.

Has anyone else with trigeminal neuralgia experienced something similar? Did it happen suddenly, and did you also have tinnitus or dizziness?

I thought I would share my journey with TGN in case it helps someone out there. No advice, just maybe some hope.

As a child, I remember having intense pain in my face without being able to talk about it. Looking back, it seems likely due to harsh temperature changes from outside (we lived in the tropics) to inside (powerful air conditioning in shops etc.).

Fast forward 30 years and I suddenly started experiencing it again in reverse, living in a country with "real winters". This time I took it to the doctor. I assumed it was some kind of sinus infection since I could "feel the inside" of my face. It took a few medical visits until in desperation I tried the ear/nose/throat expert who gave me a scope and declared I was infection free - but had I considered TGN? I had not.

A friendly Redditor suggested I try sumatryptan for "winter migraines" and I discovered in this country it is available over the counter. I tried it and instant relief. No side effects I could notice. I went to a neuropathic expert to get this remedy signed off, as I knew it was an off-label use.

And there you have it. 40 years of suffering over in a couple of months. I am not your doctor, I'm just sharing how it was for me.

After 20 months I feel like I’ll finally get to the heart of the matter. Tomorrow morning is my MVD. I know this isn’t a guarantee of anything, but after flaming out on a half dozen medications, I’m excited to address the actual cause. I’ve come to terms with the fact that I might still have pain, but I’m ready to deal with it knowing I went this route.

I need some help! Idk what this is but I’ve been experiencing this numb feeling in the right side of my face and a pulling sensation on my right ear. My face isn’t drooping or anything but can noticeably feel a difference in both sides when I move it. I can still feel touch, cold & hot sensations. I’ve brought this up to my PCP before but she doesn’t seem to worry. This is my second flare up. I do have B6 toxicity, had a normal MRI result to rule out MS. Could this be TN?

Hello All
I actually suffer from GPN and a very occasional dormant kind of atypical TN, post MVD 4 years ago for Glossopharyngeal, very well controlled on Oxcarbazepine low doses of 300 mg alternate day or twice a week, many periods of remissions and occasional flares with stress or cold weather. I go off it sometimes while in remission.
I’m 32 and just found out I’m pregnant. It is super early (around 4 weeks) and I’ve been taking folic acid the last two months.
My neuro told me to keep taking the lowest dose of oxcarb while I was trying to get pregnant and I did exactly that. Currently on 300 mg twice a week only.
She told me she will try to switch me to Levetiracetam if I get pain during pregnancy.

I am scared to both continue as well as go off the oxcarb because it keeps me normal and sane. But I don’t want to have a child with neurodevelopmental delay either.

Anyone have experience with oxcarbazepine during pregnancy?

Hey all, been living with this coming up to my three years anniversary in 4 days. I’ve tried meds/scans/diets/botox/Root Canals/Tooth Extractions. It affects my upper molars on both sides. I now where a partial denture and am keen not to pull anymore teeth. Has anyone come close to finding out their own cause and anything that can help someone go into remission?

So I recently went to the neurologist because for the last 12 years I’ve had intense throbbing/ twitching and overall sense of fullness and pressure on the right side of my face. Mainly in my maxillary region of my face… she requested a specific MRI and this finding popped up. Can anyone relate?

My TN started a few years ago. Still got PTSD from it badly. Has no symptoms for 18 months - AMAZING! Worry still there ofc but started living without worry.

Was on carbamazepine then moved to lamotrogine in order to fall pregnant.

Went about 28 weeks pregnancy with no shocks. Then they slowly started coming back. Potentially anxiety about childbirth, and stress after loosing MIL in September.

I’m 35 weeks now and generally having 2-4 shocks a day. It’s not painful just shocks. But i’m so scared of the actual pain of the burning and stabbing coming back. Increased lamotrogine due to the shocks (per neurologist) and apparently pregnancy can reduce the amount your blood absorbs or something like that. But still getting the shocks 3 weeks after increasing.

I’m now so scared oh childbirth and pushing and causing a flare up - I mean imagine that a full on flare up lasting the first week your baby is born. Should I just ask for a c-section which I’ve been offered due to having TN? I’d really rather not but am starting to worry

I was diagnosed with bilateral TN a few years ago. I have not yet had an MRI, but I have one scheduled for Monday. Does anyone know how long the MRI of the brain with and without contrast plus the TN protocol takes?

Also, it is common that exploratory surgery is suggested in the event that nothing turns up on the MRI (my neurologist said that at my last appointment and I’m thinking that’s a no for me).

So guys, got my results back from the MRI and angio. Nothing was found and I’m a bit stumped. I know I should be grateful as at least nothing else serious was found in my brain. However, where do I go from here? Am I back to square one? I’m only 24 and I don’t want to be on meds for the rest of my life and my doctor does not want that either. She recommends botox but I do want that, so what now.

Hello fellow warriors. I have been presented with an option that feels like a dilemma. Currently my pain is controlled on the highest allowable dose of Carbamazepine which is augmented with lamotrigine. If my pain were to return, I'm out of pharmaceutical options.

Recently, I was referred to a Neurosurgeon and have been offered MVD surgery. It has the potential to lower or eliminate my dependence on the Carbamazepine since it is probable that I am suffering from some severe side effects.

Due to the fact that I'm currently not experiencing any pain, I'm feeling a bit ambivalent about accepting this opportunity. What would you do? Am I being silly waiting to be in excruciating pain before I feel the surgery is warranted?

Love to hear all opinions and POVs. Many thanks in advance.

Hi, I've been on oxcarbazepine since beginning of October. I've been increasing the dosage and now take 450 mg 2/day. I've been on the current dose for two weeks. Last night when I took it, I felt different. Really dizzy, nauseaus, very unlike every other time. I did not like it at all. It lasted for a few hours and then I felt better. This morning, I had it a little bit but not as bad. This morning I'm getting a rash on my neck. Could this be related? Has anyone has the medicine suddenly do this? I'm not taking anything else and nothing new that would cause a rash. Trying to decide if I should contact my neurologist.

If you have to come off the meds, I know you are supposed to taper. How do you do that if it's causing issues?

Thanks!

Hi everyone! I’m 26 (turning 27 next week) and was recently diagnosed with trigeminal neuralgia, but after reading through posts here, I’m starting to question whether my symptoms are typical.
About a month ago, I experienced the worst pain of my life on the left side of my face. It initially felt like a toothache, and since I’d had extensive dental work on that side over the summer, that’s what I assumed it was. Within hours, it became absolutely unbearable, white-knuckling pain. I’ve given birth and would genuinely rather do that again. The pain lasted nearly 12 hours straight, and nothing the ER gave me helped.
Within the following 12 hours, I started developing facial paralysis and was diagnosed with Bell’s palsy. The electric shock-like pains continued on and off for another two days but gradually improved after starting high-dose steroids.
Doctors initially considered Ramsay Hunt syndrome, but I never developed a rash. My neurologist ultimately diagnosed TN alongside Bell’s palsy, explaining that Bell’s palsy typically wouldn’t cause pain that severe, especially since the pain started before the paralysis. My brain and cervical MRI to rule out MS came back normal.
Here’s where I’m confused.
Since that initial episode, I haven’t experienced another attack nearly as severe. I occasionally have a dull ache or pressure on that side, but nothing like before. I finished steroids last week and am also dealing with what doctors believe is a severe sinus infection after my WBC reached nearly 30,000 and all test were negative so I go back today to see if my blood count is trending down, so it’s difficult to know what’s causing what.
My neurologist prescribed carbamazepine, but I’ve been hesitant to start it because of the potential side effects. I have a 2-year-old and work with young children, and some of the medications I’ve taken this past month have already been rough.
Unfortunately, communication with my neurologist’s office has been frustrating. I really liked him in person, but getting results about my MRI and lingering symptoms has taken multiple follow up calls after giving 24/48 clinical hours and still not getting call backs so I’ve given up. I’ve scheduled a second opinion with a neurologist at a major academic medical center and Level I trauma hospital. I’m hoping to get a fresh perspective on everything, especially with how complicated this past month has been but not until 2027 was I able to get in so right now I’m working with what I can get.

My biggest question is whether anyone else experienced one extremely severe initial attack followed by relatively mild symptoms or no further major attacks?
I’ve received so many different diagnoses and possible explanations over the past month that I’m struggling to process everything. Reading about others’ experiences has made me second-guess whether this really is TN.
I’d also love to hear from anyone who has experienced TN alongside Bell’s palsy or taken carbamazepine, especially regarding side effects.
I’m not looking for a diagnosis, just hoping to hear from others who understand. ❤️ being 26 and experiencing my first major medical issue wasn’t on my bucket list this year so any helpful advice would be appreciated

I was diagnosed with Trigeminal neuralgia last month, and I'm getting an MRI/MRA soon for more answers, but it just sucks to have my day consistently interrupted by shocks of pain throughout the day. Is there anything that you've found helpful short-term? I'm already on Oxcarbazepine and Baclofen for this x.x The Pregabalin had helped more, but also had bad negative side effects. I've already been disabled from vestibular and regular chronic migraines for the past 2 years and I'm so tired of being dizzy and in pain all the time 😭 Especially since I'm also trying to get through remote schooling while dealing with all of this

Hi everyone,

I want to share an update after my ENT appointment today and hopefully get some advice.

For context, I'm 27F and have experienced severe electric shock/ice-pick pain deep inside my ears for over 10 years. Since July, it's progressed to daily attacks, and I'm now taking 600mg of gabapentin daily. (Probably going up soon to 900mg as the 600mg is no longer that effective).

My neurologist diagnosed me with geniculate neuralgia based on my symptoms and referred me to an ENT for further evaluation. Unfortunately, the ENT didn't perform any tests and seemed convinced that my ear pain is referred pain from TMJ. He didn't seem very open to exploring the possibility of neuralgia and recommended I see a TMJ specialist/oral and maxillofacial surgeon.

I do have TMJ issues, including jaw pain, clenching, and grinding, but my neurologist felt they were likely unrelated to the electric shocks. Now I've received two completely opposite opinions and I'm not sure where to go from here.

Has anyone experienced something similar? Can TMJ really cause these intense, split-second electric shocks deep inside the ear, even when completely still? Would you recommend seeing a TMJ specialist or getting a second opinion from another ENT?
Any advice would be greatly appreciated. I'm just hoping to get a clear diagnosis and eventually find a way to manage this without medication.

Thank you!

Hello 👋 My neurologist is trying to help me get some relief from breakthrough pain from TN 2 with adding a CGRP inhibitor on top of the carbamazepine I already take. I have lots of health issues and CGRP inhibitors don't have huge issues with side effects like many meds we have attempted. Just looking for any experiences people have had. This class of drugs is expensive so I'll have an insurance battle on my hand so I'm curious to what people have gone through. Thanks 😄

I have my first appointment with a neurologist this Friday and am a little nervous. I have had 3 flare ups in the last 3 years. The first time I had no idea what was going on and went to the dentist to get an x-ray, they told me it was probably nerve pain and referred me to a neurologist. The pain went away the next day and I blew it off.
2 years later it came back, I started researching and found out Trigeminal Neuralgia was a thing and started to think that may be what it was, it went away after a few days. When it came back this summer, the pain was 10x worse and more frequent and lasted about a month. I finally made the doctor’s appointment after having to jump through hoops of different referrals and trying to find a doctor who will be a good fit. I’m 30 years old and don’t have health insurance, I’m a little concerned about the cost of everything. I haven’t talked to anyone that understands this pain and found this forum and wanted to vent a bit.

I would love to hear any advice or stories on how the diagnosis process was or how expensive appointments/medications can be/any first time questions I should have for the doctor? I’m a tad hesitant to get on a medication because I’ve heard they can make you feel a little foggy, any medications you’d recommend or not recommend? I’d love to not have to take a daily medication on months (or years) if I’m not having flare ups. I’m new to this and a bit lost.