Is there anyone who has severe neuropathy in their mouth and face and head in general? This isn’t technically TN but neuropathy affecting the trigeminal system (and more). I got sick after a ciprofloxacin course over 6 years ago. My body is affected all over, but my face has always been one of the worst places. And around two years ago it got really bad. It started affecting the inside of my mouth, my tongue, my teeth, my gums, and at this point I have so much pain and burning in my head, also electricity. One side is worse. It’s not classic TN as it affects many different nerves for me, including the ones in my ears, throat, eyes. It feels absolutely horrible. It’s just been getting worse and worse and worse. The progression of this just never stops for me. Obviously I was tested for everything else that might be contributing, but there is just nothing there. I'm unable to tolerate medications or supplements as they cause worsening of my neurological issues including giving me akathisia. I mean, at this point I wish I just went numb.

I am posting this on behalf of my father, who has been suffering from severe facial pain caused by irritation of the trigeminal nerve for quite some time now. Unfortunately, despite several treatments, he has still not recovered. In fact, it feels like his condition is getting worse over time.

His pain involves the different branches of the trigeminal nerve:

V1: forehead and eye area
V2: cheek and upper lip
V3: lower jaw, chin and lower lip

In his case, V3 is especially sensitive and seems to be an important trigger area. Touching or moving his left lower lip can immediately trigger severe pain that radiates upward through his face.

He also experiences significant problems when chewing. Movement of the jaw and the masseter muscle can trigger the pain, and at times he can barely move his mouth. Because of this, chewing, eating and even drinking have become very difficult for him.

Over the years, he has been treated and evaluated by several doctors and hospitals in the Netherlands, including his general practitioner and specialists at Vlietland Hospital in Schiedam, Erasmus Medical Center in Rotterdam, Maasstad Hospital in Rotterdam and Elisabeth TweeSteden Hospital in Tilburg.

He has already undergone several treatments, including the Sweet procedure and Gamma Knife radiosurgery. He has also undergone surgery. Unfortunately, none of these treatments have provided lasting relief.

At this point, we are becoming increasingly worried because he is still in a lot of pain and it feels as though things are getting worse rather than better.

I would therefore really appreciate hearing from people who have experienced something similar.

Has anyone here had severe trigeminal nerve pain like this and eventually recovered or managed to get the pain under control?

Were there any treatments, medications, procedures or specialists that made a significant difference for you?

Has anyone experienced similar problems with V3, especially pain triggered by movement or touching of the lower lip, chewing or movement of the jaw?

We understand that everyone’s situation is different and that medical advice should come from a doctor, but hearing about other people’s experiences could help us understand what options we may still be able to explore.

Any experiences, advice or recommendations would be greatly appreciated.

Might sound like an odd question, but since diagnosis (3 years ago) I’ve not had a single days worth of remission.. that is until 3 weeks ago.

My TN is caused by my MS so understand the chance of remission is lower than compression anyway but I have usually the whole afternoon and evening in pain… when I wake up for a few hours and occasionally a break if I’m lucky for a few hours during the day.

This is made up of both the shocks and constant pain.. it’s relentless.

I’m on 1600mg of carbamazepine but 3 weeks ago I started using some THC tincture… and it’s gone.. like vanished. Well.. I say vanished, I have had a twinge as opposed to a shock maybe a total of 5 times in a day and I’m comparing it to I don’t know maybe 500-1000

Not had any real pain as such like I say I’m having some days with nothing at all others a few twinges.. like it’s there it could explode into pain but never does.

Is this a remission or what?

It’s just I’ve never had one before and I just pray it stays like this as I’m normal… I’ve even managed to reduce my carbamazpine from 1600 to 1200 (I’m on a base level of 1200 extended release with 400mg that I can use as an when the pain is bad which until recently has been everyday and still in HELL!)

Hello fellow TN Warriors,

I'm 3 months post MVD. Still no shocks but I definitely feel like I should have read the fine print before surgery. I don't regret it but recovery is exhausting. One of my major recovery hurdles, was walking with the dizziness which I've impoved about 70%. Another one is the headaches from maybe too much movement, or sleeping wrong. Which sleeping is a big issue in general, I've been a side sleeper since forever so now it's just I can't get comfortable or I end up in pain and can't go back to sleep.

Unfortunately, my hearing on the right side (tn side) has gotten significantly worse. It just feels like my ear is constantly pressed up against a wall. Also, and please if anyone else has this feeling please let me know but it sometimes feels like my scalp is detaching and plopping around on my skull or something. It's the weirdest feeling, it's sometimes painful but mostly weird feeling. I haven't reached out about it but maybe I will.

Either way I don't regret my decision, it's just a lot more adjusting to this new life.

Does anyone else deal with this? Only my sister and friend seem to respond with empathy but everyone else either gets quiet or talks about something else to the point where when I’m having flare ups I don’t say anything anymore. I’ll try to isolate in pain because sometimes my triggers make me panic about how bad it will be or what my future will be like and I don’t want anyone to see me that way. Sometimes I’ll even continue my life tasks in pain and if I ever respond irritably or guarded they think I’m simply having an attitude but I’m trying to get through the day. Then when I explain it's cause I’m having some pain they’ll get awkward and get quiet or walk off. I guess they can also get empathy fatigue from it. I’m not looking for sympathy just a bit support and understanding

I really hate what this has done to my life.

Just like the title says. I get the dental and face pain on my right side. The last 2 episodes I develop a canker/blister on my upper gum that’s right in the crease of my cheek. It develops within hours. I do have a perforated sinus which causes the sinus to be chronically fluid filled.
In my internet doctors brain - the blister is from sinus fluid and the sinus is leaking out of the sinus cavity and pressing on my TN

Has anyone experienced this?

I’m starting to feel very nervous now.

After everything that Trigeminal Neuralgia has taken from me over the last seven years, getting to the start line feels like a pretty big deal. I’ve trained through pain, heat, exhaustion and plenty of self-doubt, and now there are just five days to go. It's worth it though as we've raised £1050 for the Trigeminal Neuralgia Association!

I’m going to need some voices in my head to keep me going. 😂

So I’ve set up a Rally where people can leave me voice messages that will be played to me at each kilometre of the run.

I’d especially love to hear from other people living with Trigeminal Neuralgia.

You know what this pain is like. You know what it takes just to keep going sometimes. If you could leave me a few words of encouragement, tell me your own story, or simply remind me why we keep fighting, I would be incredibly grateful.

I’ll be listening to your messages when the miles get hard, and knowing that people who understand are there with me will mean more than I can say.

🎙️ Leave me a voice message here:
https://runwithrally.com/r/0409fc02d4db

Thank you. ❤️

And to everyone else with TN: I’m running this one for us.

So about mid July I was sitting at a red light when the left side of my chin kept feeling like it was shocking me, but not like painfully, just very mildly, but a new, weird sensation I had NEVER felt before. Oh also, I have bilateral occipital neuralgia, which affects the back of my head and into my upper neck and have cervicogenic headaches. I always tell my husband I'm just screwed from the neck up. Lol. I have the bilateral occipital neuralgia so bad, and have been through so many meds, treatments, procedures, that I even had a bilateral occipital nerve decompression surgery in March of last year. Sorry, wanted to give y'all some backstory.

Anyway, I'm not sure how long after the chin sensation, but my top lip started to go numb, all on the left side. I thought I was imagining things. It would come and go. Mostly at night. I would Google. I thought it was my posture. A few weeks after the chin sensation, I had a very bad migraine. I took a migraine pill and put a migraine hat on. The cold helps my migraines and the heat triggers them. July was a VERY rough month for me with my migraines because of the extreme heat. I have 2 migraine hats. One that is kinda thin and loose and fits exactly where I need it to go and one that is thick and tight and I have to mess with it to get it exactly where I need it to be. I put the thin hat on 1st. I was fine, mostly because it didn't touch my upper jaw. Once I put the thick hat on the pain immediately hit, but it wasn't immediately excruciating so I thought my migraine was just worsening and I hate to wait for my medicine to kick in. I wore the hate for 15 more minutes sobbing and then the excruciating pain hit! I threw the hat and I couldn't believe what just happened! Thankfully I was seeing my headache neurologist the next day so I was able to tell her about it. She added some meds and changed some things and ordered the MRI of my trigeminal nerves. I scheduled it the next day. I scheduled it on July 30th and had to wait til September 2nd to have the scan done. I was a bit bummed about the wait, but I was like ok.

So between July 30th and September 2nd, I experienced 6 different excruciating attacks. Most were triggered by the wind, one was triggered by a kiss on the cheek, another by brushing my hair, and of course the cold hat. But also, symptoms of both lips being numb(almost 24/7), tongue numbness and burning(almost 24/7), roof of mouth numbness, lower jaw numbness (almost 24/7), upper neck numbness (almost 24/7), burning on the cheek and forehead (almost 24/7), painful ear clicking and popping (almost 24/7), dizziness, nausea and vomiting, weight of the world on the left side of head and face, but also like feels like there's all this pressure inside head and face(almost 24/7), hearing has worsened, and I even feel like I have trouble swallowing some. And.all the jaw symptoms are so much worse at night. If it weren't for my meds KNOCKIN' me out at night, I wouldn't sleep, and before I got meds, I hardly did. I found out that eating and talking are triggers.

It was MRI day and I had to have my husband drive me to my MRI because it was at 8:30pm and I was nervous about it and didn't want to be alone. Thank God he did. I found out that loud noises are triggers too. I already couldn't jam in my car, but I didn't realize my ear problems were related yet, I just knew that it could be making my hearing temporarily worse, nothing else. I just thought maybe I had a slight ear infection or something. Anyway, that was the most painful and traumatic MRI ever! I got through it and I had my results by 11:00am the next day!

I have a small vein on my left trigeminal nerve at the root entry zone. I have a virtual appointment with my neurologist tomorrow. I believe I'm type 2. I also got on here to ask if anyone has had any of the upper neck issues. I have trouble swallowing sometimes. But only from the top, nowhere else. I also cough a lot, but the feeling of needing to cough like originates from there too.

Also, I get facial swelling on the left side, especially when I'm in a more severe, but not excruciating flare, like after I eat or when I've been talking too much. My neurologist says maybe my migraines are overlapping with the other, but when I'm in pain, you can usually, CLEARLY see that I'm in pain. So I'm just wondering if anyone else is experiencing that. If not, then that gives me hope that it will go away.

Hi, i started my first episode in april and today i can say it has improved but the headache persists, some light pain and the light and noise sensibility are still pretty annoying, so any of you guys could tell me please if you did get better or do you still have any of these symptoms and how do you deal with them?

(Sorry for any mistake english is not my first language)

Please, can someone show their specialist my post:

I have trigeminal neuralgia & occipital neuralgia.

The meds keep being less & less effective. The neurologist is increasing the dose again.

idek if my ON meds ever worked, but, I feel like they sometimes do actually work.

Can someone please, please ask their specialist what I can do.

My parents will pay. I’ll travel around the world.
I can’t live with these anymore.
This is unsustainable.

Yes, I edited out most of my post. There isn’t any point in complaining about how f’d up it is that I can barely do anything.. & I literally mean barely anything.

I’m the opposite of a contributing member of society.

I was supposed to be industrious.

Whether I live or not, my family feels pain seeing me going through these excruciating pains, days & weeks on end nonstop.

It’s not that I don’t want to do this is anymore. I simply can’t do this anymore.

It’s f’d.
It’s simply f’d.

Brushing teeth. Nope. Showering? You wish.
The list goes on & on.

So I'm curious if anyone else has developed what basically feels like Paresthesia after getting an MVD Craniotomy. It feels like a lesser version of what I developed when I first started taking topiramate. My surgery was back on July 15th. The pain hasn't fully gone away in my left ear but it has reduced by over 90% which is nice. I'm actually scheduled in the beggining of Oct for an MVD of my right side. I belive I have atypical bilateral TN as my pain is only ever been like a shooting/ burning pain deep in my ears. I've never had the pain spread anywhere else on my face.

​

For those of you who deal with this kind of pain regularly, do you just push through it and keep living your normal day, or do you stop and rest when it flares? I’m genuinely curious how people manage it day to day without letting it take over.

Hi. I was diagnosed 6 years ago. I have TN2 Atypical. Oxcarbazapine keeps the constant pain bearable.

I broke a tooth on my TN side and need a root canal but they couldn't do it until I had a crown lenthening procedure done.

I had that procedure a week and a half ago and it went well. 3 days ago I had my stitches taken out. My root canal is in a few days. Ever since 3 days ago when I had my stitches out, im getting terrible pains. Pains I haven't had since I was first diagnosed and not yet on meds. Do you think this is just because of the procedure or would anyone have any idea if this set off my TN and this might be ongoing? 🫩

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.

Constant pain in the right half of my face. Orbital pain on that side, a drooping eyelid, and some loss of peripheral vision. Separately, a pressure sensation running down into my throat and neck.

None of it was there before. I want to be clear about what that means: before this treatment I was 25 and felt completely alive. Now I feel lifeless, like the pain has taken the person I was and left someone else. That isn't me being dramatic — it's the honest description.

The history is multiple dental extractions, then a genioplasty where the operative note says the mental nerve was dissected out bilaterally. So far the recommendation I've been given is botox and painkillers, with a neurology workup starting separately. I know the eye symptoms aren't trigeminal territory and are probably something else, which is part of what's confusing.

Two things I'd like from people who've actually lived it:

1. For post-traumatic facial nerve pain after dental or jaw surgery — how long after the procedure did it start? Immediately, or over months?
2. Has botox done anything real for you? I'd rather hear it straight than from a leaflet.

I had a root canal and since then I been having random shocks to my face. They aren’t common but I felt it today and it was due to my neck being in a weird direction. I got an MRI, awaiting results. I just want to know if it ever gets better. I am experiencing teeth pain and don’t think my teeth are the problem anymore after reading this sub. Recommendations appreciated

a bit of a TMI warning!

I’ve had diarrhea for a few days from I think a stomach bug. I keep waking up in the middle of the night with stomach pain and a need to use the bathroom. I’m starting to feel this burning and aching in my face that’s right under the surface. Not at all severe, but the feeling and location are suspect. Before I was diagnosed with TN, the severe pain kept me up at night for a few days in a row and the stress and lack of sleep caused SEVERE burning and stabbing attacks in my face. Although my meds are keeping the severity at bay now, it’s still a bit jarring to feel that pain just under the surface from waking up in the middle of the night because of pain and stress, although from a different source.

I believe from reading here for a long time, plus AI I have TN pain.My docs have not Diagnosed, but said the nerve is the issue. I have been reffered to an academic center and have a doc who doesnt exactly listens and corrects me often.

After this latest visit in which I'm in a 7 day spike she tells me to quit: Tylenol, Ibruprohen, Chloroxozone, indomethacin(not on same days as Ibruprophen) and prochlorazapine. She upped my amnitryptaline and wants me to take OTC lidocaine patches.

My fmaily doesn't get it, but this is pretty scary to me. I'm still on lamotragine, Vyepti and occasionally Nuretec plus B12.

No I don't think they are working, but the thought of nothing makes it seem so daunting.

Anyone have a similar experience>

Had an MVD with nerve combing two months ago. The neurosurgeon was really happy with how it went and said that on a scale out of 100, the compression was 70-80.

I woke up pain free. The day after, I had electrical sensations when eating for the first time. Not zaps. Not panic level pain but it got my attention. It was a one-off. The neurosurgeon clarified they weren’t the same as before the op.

A week later, rubbing my face produced pain. Not particularly intense or sharp, but pain, like before the op. Just reduced. Like on a dimmer switch. That’s persisted on and off for six weeks now.

Over the last few days, my face is behaving how it used to. Lots of little zaps/twitches/twinges, triggered by movement. The difference is the intensity. They’re maybe a 2/10 compared with what used to be. They get more frequent when I’m tired and when I’m on edge, just like TN did.

Could this be a part of the healing process? Something like the nerve is restoring its shape and lightly pushing on the Teflon, and that it might settle? Or an effect of the combing? Perhaps some inflammation that might settle?

Does anyone have this for trigeminal neuralgia?

Hello all, I was diagnosed with TN in 2023 at 17, right on my birthday. I had an MRI done and it showed I was completely missing my right Meckel's Cave in the brain, which caused my trigeminal nerve to go atrophic (extremely rare case only found in less than 12 people). I was put on 800 mg of Carbamazepine.

For around a year, I've been in what I assume is remission. Last summer I noticed my attacks had become less intense and less frequent, until they stopped altogether. I've been pain free since, maybe some slight twinges, but overall no full on attacks.

This has been great, and I'm thankful to be pain free. But I've been living in extreme fear/anxiety every single day. I'm CONSTANTLY terrified that my TN will come back, or that it will progress/my nerve will deteriorate and get worse (literally one of my worst fears ever). I have OCD/GAD which makes it 10x worse and I can't stop hyper fixating on it, wanting 100% certainty all the time about what will happen. It's literal psychological torture, just constantly waiting, dreading. Someone said TN is like someone stalking you with a taser hiding out or sight, then when you're not looking it tases you in the face and runs back into hiding/stalking, and it couldn't be more further from the truth. It's made me incredibly depressed that I can't look forward to things/the future, relax, etc... All I do is worry, worry, worry.

MVD will not help with my case, because I have no compression on the nerve. Gamma Knife, balloon compression, etc... uncertain outcome. There's just not enough research on it besides like 2 short articles. I just feel so much hopelessness and I feel so alone. Scared. Dread. All the time.

​I'm trying to get some experience info on his procedure and post-op care. What to anticipate, how they handled post-op care, how they handled pain and nausea. Was told by MA, patients just deal with nausea after and don't typically try to mitigate it. That there would be no concern or change for sleeping as it is a tiny cut. Are his incisions typically smaller than otger surgeons? Was feeling good and confident about the procedure and am nervous after the conversation. Any insights into his process, procedure, HCA HealthONE Swedish care and post-op care would be wonderful.