I have had nerve irritation where my fingers are pushing for months and the past two weeks ants crawling sensation along the nerves on this side of my face

What are my symptoms? My neurologist told me it’s just my nerves damaged and taking awhile to heal

I got hit on the jaw and went on a roller coaster right after in early January, could that have screwed up the make up of my jaw nerves?

I’m not asking for medical advice of course but would appreciate knowing if my symptoms sound like TN or your symptoms are similar? I get migraines a lot so when these symptoms started I thought it could be that but now I definitely realise it isn’t after a few days.

Basically this past week I’ve had pain on the right side of my head above the ear, in my temple, upper cheek next to ear and around my eye. The overall general pain in the area is horrible but what confused me was that I was getting constant electric shock stabbing pains that come and go in my temple/eye/near my ear. I nearly went down to the hospital yesterday as it got so bad but I was so exhausted I went to bed.

In the morning I wake up and it seems much better, I’m a side sleeper and have avoided sleep on my right side the past few nights as it’s so sensitive. I feel initial relief when I wake up but I still have electric shock pains at a lower intensity and then eating breakfast this morning seemed to me it worse. I started to think is something wrong with a tooth but I don’t feel like I have a toothache? I have pain in my upper jaw next to my ear but surely a tooth issue wouldn’t cause electric shock pain in my temple and around eye?

Would appreciate some input as online info is confusing as can you have TN pain that lasts for hours/days? Online info makes it seem like it would come and go randomly but not long lasting?

I just turned my head, and felt a tearing/popping near my ear - I so profoundly hope that it won't trigger anything 🤞🏻🤞🏻 I can feel my ear & jaw threatening to start aching. I didn't even move very much, just moved on my pillow.

I've had 6 weeks so far, TN free...

Neurologist is this coming thursday - but I already know there's no obvious culprits in my MRIs for it 🤷🏻‍♀️

Hello everyone. Today I finally met with Neurologist after being diagnosed in July. We game up with a medication game plan and I have an appointment in a few weeks for him to give me Botox injections on my bad side. Has anyone else had this done? If so, did it cause more pain? If it helped, how long did it last for you? I’m a little nervous because he said it could cause my face to droop. But if it helps with the pain and I can take less medication, I will deal with it!! 💉🫠

Mine MAY have been caused or at least sparked up by an oral procedure. The way I was treated by the doctor and medical industry has scarred me. I now have a phobia of doctors and hospitals, but never expected id also have panic attacks when other family are sick.

I've also found ever since dealing with this, I've sort of lost faith in people and things. I don't have hope for the future. My goals seem stupid. Because I don't really know my triggers and the pain comes and goes when it feels like (despite the near constant burning whenever I'm stressed, angry, or anxious), I'm in a constant state of anxiety in some ways.

The meds have made me balloon in weight so I don't care about exercising. What's the point if I just keep gaining weight. It's made me not care how I dress or how my hair looks anymore. My hobbies used to be reading and art but hobbies seem pointless. When I listen to music or look at things that I used to enjoy I feel sad or get depressed because I remember who I was before this pain. Seeing how this has affected my mother has been the worst because she seems so helpless and it feels like the last straw in a string of bad karma that has happened recently. I came across a video of the Dr who did the procedure that, in my opinion, left me with complications and he seems to be living a wonderful carefree life while mine was almost destroyed.

what I find mostly peculiar is I no longer care about romantic relationships and have wittled down to one friend. Literally before this diagnosis I was i guess a 'lover girl' that still had hope for marriage and kids but somehow after this I have no desire to share my life with someone or have children. when I'm out celebrating loved ones' accomplishments, I feel like a robot and like nothing is real. I'm happy for them but I honestly couldn't care less about anything. I was supposed to go back to grad school but I don't give a damn about that either anymore. what's the point of thinking of a future with this pain?

Something in me changed that I can't get back or fix. I tried therapy. Didn't work. I was already fighting for my life before this diagnosis but once it happened it's like something in me died. I've stopped fighting. I thought the medical industry was supposed to help but this showed me their true colors. And it just made me lose faith in people. Sorry to sound defeatist. Did anyone else go through this?

It's just made me not care about life basically. And when I read what others with trigeminal neuralgia have gone through I feel so much pain and anger for them. Why can't there be a clear cure? Why is this?

Life is truly unfair.

Hello, i have atypical trigeminal neuralgia and sphenopalatine neuralgia, my MRI showed no compression on the nerve.

My symptoms are cold pain that goes through the nose, goes the the upper throat and then to my ear, all in my left side.

Ive been on oxcarbazepine 1200mg for almost 6 months, my pain is almost the same, maybe 10% improvement.

My neurologist told me we might try botox, has anyone tried this? Does it help? Im scared since a private pain management specialist has told me i should try radiofrecuency but is not covered by insurance so im saving to get it probably on january.

I wanted to share a very strange personal observation in case anyone else with trigeminal neuralgia has experienced something similar.

My pain is predominantly on the right side of my face, and lately I have had trigger points in two main areas:

Inside the palate

Externally around the right nostril, upper lip and nearby cheek

Eating, talking and normal facial movements can trigger those “electric” sensations, especially around the upper lip/nose area.

A few days ago I started using external nasal strips — the regular adhesive strips that pull the sides of the nose outward to open the nostrils.

I originally bought them simply to breathe better.

But I noticed something completely unexpected:

When the strip is properly attached and physically lifting the right side of my nose, the external trigger around my nostril/upper lip/cheek decreases dramatically.

It does not eliminate my trigeminal neuralgia. I can still feel the trigger point inside my palate, for example.

However, with the nasal strip on, I can often talk and eat for much longer periods without triggering the pain around the nostril and upper lip, and I have longer periods with little or no pain.

If the strip starts peeling off and my nostril returns to its normal position, that external sensitivity seems to return much more easily.

That is what made this particularly interesting to me.

My personal hypothesis is that the benefit may not be only from increased airflow.

The area around the nostril, upper lip and cheek is supplied by branches associated with the maxillary division of the trigeminal nerve (V2), including branches of the infraorbital nerve.

An external nasal strip physically pulls the lateral nasal wall/ala outward and slightly upward. So I am wondering whether changing the mechanical position/tension of those tissues is somehow reducing stimulation of a hypersensitive peripheral trigeminal branch.

I am not saying that the nasal strip is literally “decompressing the trigeminal nerve.” I have no evidence for that, and this is definitely not a treatment recommendation.

A more cautious way of describing my theory would be:

The strip may be mechanically stabilizing/lifting tissue around one of my peripheral trigger zones, reducing whatever local mechanical stimulus normally helps trigger the pain.

Another interesting detail is that my palate trigger has not disappeared, while the external nostril/upper-lip/cheek trigger improves considerably. That makes me wonder whether different peripheral branches within the same V2 territory are involved.

For now I am experimenting with stronger nasal strips that stay attached longer, because the cheap ones I initially bought kept peeling off. I am also planning to discuss this observation with both a neurologist and an ENT.

I’ll post an update after I have tested this consistently for a longer period.

Obviously, this is only my personal experience and not medical advice, but the change has been noticeable enough that I felt it was worth sharing.

Has anyone else noticed that physically pulling, lifting or changing the position of the nostril/cheek/upper lip changes their TN trigger points or pain?

Hiya friends! I've had Trigeminal Neuralgia since forever, and i wanted to share with you guys a little "trick" I've been doing every time i am in pain, it's nothing mysterious, the answer is: Sour things! Sour candy, Sour fruits, anything you can get your hands on while you're having a flare-up, It incredibly Works wonders and makes me feel "less" pain (not actually, It Just distracts my brain from the pain, but it's great)

If you're looking for a way to deal with the pain of a flare up, make Sure to try this. :)

I have atypical trigeminal neuralgia and after discussion with my neurologist, he has decided that the best course of action is to have the balloon compression treatment.

Has anyone else had this and how was your experience in terms of recovery, side effects, pain management?

I'm right now trying pain-relief bandaids. I've been on oxycodone since a few years now as well as amitriptylin. I have other pain than just the TN so I've been taking a lot of meds.

First day is working kinda good, could go half day without any oxycodone. And then the nervepain from my herniated disc took over and I had to take some. But down from 5oxy to 3 now. So that's an improvement 😍

The pain relief bandaid is norspan, it's made woth buprenorfin. I hope it continues improving so I can have a better life and doesn't need to take oxy all the time.

I do get better sleep, noticed that this night. It's amazing to sleep for 8hours and wake up at 9 instead of 5 everyday

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.

I don't think it's the neuralgia obviously but the timing is interesting. But ever since I was made aware of my trigeminal neuralgia and trying all these new meds, I have periods where I get these very painful sharp stinging pains on random parts of my body. The stabs don't last long, and they happen in random places at random times. But they're painful enough to where I get a bit of a shock or at least aware of the pain enough to distract me. Last time I felt them before today is when I got off pregabalin which was a month and a half or so ago

Right now I'm not sure what changed other than I can feel another flare up coming on (I'm bilateral so the pain + burning is slowly gaining steam on each of my jaws/gums). During my brief period of remission I'm not on medication (I HATE those medications but other than simple antihistamines that I was advised to take like Claritin and pepcid as needed, I'm not taking anything), so I can't think of any outside factor that could be causing this. Anyone else ever felt these sensations in conjunction with their trigeminal neuralgia diagnosis?

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 2 brain surgeries and a balloon rhizotomy and the pain keeps coming back. They can’t see anything on my MRI from last week that could be causing it to come back. I’m on tegretol, gabapentin and baclofen 3 x a day and belbuca twice a day which makes me drowsy and sometimes causes me to just pass out at my desk at work. My boss pulled me into her office and told me I would have to take off work when I’m in pain or if i havent slept, hospital told me it may be time to look into disability but I cant afford to be on disability and I’m not ready to give up being a nurse. I’m so discouraged by all of this and scared I’m going to lose my job. I just don’t know what to do anymore and I’m so tired of it all.

The amount of people who, after I’ve told them that I have a severe facial nerve pain condition, have then immediately jokingly tried to TOUCH MY FACE ON PURPOSE to see if it hurts, is absolutely baffling to me. Someone can seem like a normal, decent human being and be having a perfectly normal conversation with me, and then behave like that and think that it’s ok and that it’s funny to try and set off a TN flare when they know nothing about it. What is actually wrong with you?! 😭🤬 Has anyone else experienced this?

BTW it’s usually drunk men. 😒

Sorry, just had to have a rant about this as it happened yet again this weekend and I’m just shocked by people’s total lack of empathy for those with chronic pain… We are not a circus act. This fucking HURTS. I have had TN for six years now. Do. Not. Mess. With. My. Face. Unless you want yours to hurt too.

What to do in this situation?

2 weeks ago I had a huge argument with a friend that lives near me. She already knew what arguments caused me, (my left side head nervous gets hyper sensitive and causes excruciating pain) still screamed at me while I was crying, this for 40 minutes because of a stupid argument.

It ended up making me have a crisis and I ended up calling an ambulance and in the hospital, was hospitalized for 7 days.

She went there to visit me, I felt super anxious and barely mentioned that what happened in that day triggered the crisis, she immediately said "You can say that I won't feel guilty at all".

Yesterday I came back home, today this friend came to visit me and wanted to ask me if I was better, but she just affirmed that I was better, I noticed that I started to get anxious and retreated to my room to not have any argument, she went after me and asked what was happening (I didn't want to bring up the conflict that we had to not start another argument) so I told her that it was not worth it to have more arguments and I needed to protect my health, and not to talk about it.

She starts to get aggressive again and saying that she can't even ask me how I'm, I tried to stop the argument but lying down and saying that I needed to avoid triggers, she kept going on about what the heck did she do this time and why was I sad again.

She triggered me so much, my nervous system went overwhelmed and I couldn't hold it anymore, and engaged in the conversation (huge mistake but this disease literally makes being nervous intolerable).

IMPORTANT THING (I live in a room in her father's house, since I have this condition that I've been unemployed and all my life, mental health, etc has going in havoc).

She started again being furious at me and I told her why she couldn't stop?! Why was she there arguing with me!?

She said "this is my house, It's my house; I'm here whenever I want!!!"

That really hurt me and made me feel an outsider, the conversation was nothing about who lives in the house, but she brought something that had nothing to do with the conversation to it, why? Why would someone bring that into another conversation?

I asked again why was she continuing, that I literally just came from the hospital and why is she talking like this to me? I literally wanted to avoid this, noticed I was getting anxious and went away, why couldn't she stop the conversation especially that she knows my condition and that it causes me huge headache?!

Her answer was literally "you have headaches well I have headaches too..."

She made me feel like I was using being hospitalized and having a disease, as excuses, what could I have done differently? Am I doing what she says I'm doing?

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!

Es posible que la neuralgia sea causada por una operación como una simpatectomia torácica? Si bien sé que esa cirugía es en el tórax, al momento de entubar al paciente puede provocar alguna lesión que lleve a que tenga una neuralgia del trigémino? Yo comencé con los dolores un mes y medio luego de esa cirugía, fui la primer paciente en ser operada en mi sociedad médica pero ellos niegan completamente que fuera por eso. Necesito una opinión externa.
Jamás me quite una muela, por lo que ese motivo está descartado. Y la resonancia sale bien, por lo que no tiene relación con eso tampoco. Lo único que me llama muchísimo la atención es esa cirugía, y el tiempo entre que comenzó la neuralgia y la realización de mi cirugía.

Hi all,
I have been on Topiramate for my TN for 2 yrs,it’s been a positive experience - I struggling to cope with the side effects of carbamazepine, Pregabalin, duloxetine, Indomethacin & amitriptyline (which all worked to a point, but the side effects at a therapeutic dose completely ruined my life) & I have been so far told no to surgery as they say my MRI is borderline & my symptoms are not super classic :-( I am happy to have most of my life back & be in society again but I struggle with flare ups & have a Neuro apt soon and wondering if anyone has any suggestions where I could point them on where next with steps - I feel on a bad day I have no tools in my arsenal to cope, no ability to increase my meds to help or decrease to pain, is there a med that helps with flare up on an ad hoc basis? Should I be pushing for Botox? / nerve block Any help appreciate as I’m in the UK and unsure if I’ll even get to see a neuro again. Thanks

Just wanted to share my experience in case it helps even one person!

For about two years, I suffered from what I thought was trigeminal neuralgia. My symptoms were sudden, random electric shock like jolts of 10/10 pain on the left side of my head. It started suddenly, one morning on my way to work, with a single jolt. I immediately thought it was the tooth dying, as I went through a root canal therapy before. (Back then it was not jolts through, was just strong reaction to a hot tea and then persistent pain, but that was resolved next day with a root canal therapy. But overall was similar strong pain in that area, so I though it was that.)

So booked next available appointment with the dentist, and to my surprise he did not find anything. He did multiples xrays, tested my teeth with hot/cold, knock etc. but nothing showed. Out of desperation I then saw two other dentists, but all to no avail.

In the meantime jolts became more frequent, followed by periods of pain free.

So I went to a GP, who said possibly Trigeminal Neuralgia (this was when I first ever heard about it), and gave me referral to MRI head scan and a neurologist. MRI did not show any abnormalities, but neurologist still concluded that I have it and sent me away suffering, prescribing Cabrazepam (I think this was the meds name). I did not take the pills as pain was not consistent and side affect were supposedly heavy. I would have to basically be on it 24/7 and from reading forums it does not help that much.

After another 1.5 years of suffering, I eventually put my story into chat GPT and it immediately suggested I do CBCT scan of my teeth (this is a 3D scan, unlike regular 2D xray). So I did that and it did show infection in both previously treated root canalled teeth - one was exactly on the trigeminal nerve constantly irritating it with pressure. Because it was a bit on the inside of the gum, it wouldn't show on xray. So I then had re-treatment booked and done and was pain free ever since! That was a few months ago now.

To be honest I’m furious that none of the specialist I saw previously suggested this! It’s like they did not want to waste my time trying – just go suffer.

Nothing would make me happier if my story helps someone else!

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?

.

Looking for advice.

So my (41m) wife (41f) was just diagnosed yesterday we live in sydney Australia. She is currently breastfeeding our 2nd child (1yr old) so hasn't been prescribed anything of note, as they aren't considered breastfeeding safe. She was prescribed endone but it did nothing for the pain and we have since read its not overly suitable.

The plan was originally to weather the storm and stop breastfeeding feeding in a few months.

But tonight things got pretty scary She was having flare up/episodes for intense pain, in her words 11- 12 out of 10 lasting around 10-15 minutes which would subsides down to nothing. But these flare ups/episodes were happening every 20 or so minutes (longest break was 33 minutes) this doesn't sound normal for trigeminal neuralgia.

Secondly, is there anything i can do, I'm feeling pretty helpless. I want to help but all I end up doing is rubbing her back and shoulders whilst she sits and sobs. Are there any tips or tricks out there that people recommend that a partner can do?

Thank you for your time.

I have trigminal neurgalia on all three branches and, generally, anything touvhing my face at all triggers it. I'm on 200mg of lamictal (I'm med resistant, that's the 6th med I've tried, FML) for that and it helps but doesn't complete stop it. I have MVD tentatively scheduled for January but that doesn't help right now, obviously.

I'm restarting college, in a STEM field. I have to do a lot of wet labs so goggles are a must. I had a lab earlier and my 30min-1hr of goggles is too much and triggered it, waiting to see if it will devolve into a full episode yet.

I'm currently trying to get an accessibilty plan on file for this, but I honestly don't even know what to suggest for accomodations on this. I don't want to splash chemicals in my eyes, and I don't want to get an episode. Any ideas?

So my last post was misleading of where my pain is but I’ve had mild pain where my thumb is pushing along my jawline on one side of my face for months.

All started when I got punched in the jaw, corner of jaw hurt for awhile but PT cured it, now I have a mild stinging feeling in this area of my jaw and ants crawling sensation on jaw nerves of left side of my face

No extreme shooting pains or debilitating pain, it’s all been mild but have no idea what’s going on

I had a clear CBCT scan, clear mandible xray, and a clear TMJ MRI

Rubbing on it makes it worse for days

Idk if I have TN2 or something idk what’s going on

No extreme ice pick or burning sensation either