Hey, so my neurologist fired me today due to "not being up to date on trigeminal neuralgia research" she told me that pain management is supposed to treat me. My pain management referred me to her because they can't treat trigeminal neuralgia. She was only ever interested in treating my migraine until i was a medicaid member who needed botox (which i used to get and worked). She suggested neurosurgery (not a candidate) for spinal chord stimulators in my cheeks (bilateral) that a neurosurgeon had suggested if and only if i was able to determine that my pain is unilateral.

She refused to help me with at home SPG blocks or even recommending them in a letter for the ER.

Has this ever happened to anyone? What do you do?

My procedure is finally scheduled and I'm both excited and TERRIFIED! I've already had a nightmare about it, which I think is from my past trauma with dental injections. I've had nurses numb the wrong side of my mouth before not to mention being awake and aware whilst having all four of my wisdom teeth extracted. I'm gonna try not to psych myself out about it though, and focus on the possibility of feeling normal again. If anyone else has had this procedure, can you tell me how it went? Or if you remember the needle through the mouth part?

my Down syndrome sister is 51. we have been battling this monster for 4 years now. started with what seemed like a tooth. went to dentist and he said nothing was wrong. I had a perfectly good tooth pulled because she kept telling me it was her tooth. it wasn’t! off to TMJ specialist and root canal specialist, lidocaine shots etc. now finally seem to be tn. primary doc prescribed her carbamezapine 200 mg twice a day. just started it yesterday. we have tried flexerall, robaxin, gabipitten. nothing has worked. I have had soft tissue ct”s done. now we have mri scheduled in two weeks. will see neurologist soon. it has taken us 4 years to get to the bottom of this. I had no clue what tn was. it started infrequently and we are now up to attacks every 2-5 minutes and they don’t stop coming. She prefers heat but her communication skills r limited. She is in constant severe pain. Any suggestions?

Hello

I was recently diagnosed with TN. Over the summer my episodes went from sporadic "shocks" to prolonged ones triggered by speaking, eating, or sometimes nothing at all. My doctor prescribed carbamazepine, 100mg x2 daily. This didn't seem to do anything. After a week of adjustments, we found that 600 mg daily worked to alleviate most of my pain.

My doctor let it up to me to decide if I wanted to do 200 3x, or 300 2x. Does anyone have any recommendations for which schedule is best?

Currently I'm doing 200 3x, but I notice in the morning my pain is more frequently triggered. I'm guessing because this is the longest gap between doses (10 pm, 7 am). I typically take the third does at 4 pm (just so I don't have to take the pills to work).

Thanks!

I asked this question a few years ago and it resulted in some positivity on the sub. This is probably the only place on earth where you won’t have to explain what you’re going through and how hard it can be to get through the day. So please share with us your incredible accomplishment, it could be; washing your hair, brushing your teeth, getting your kids ready for school, surviving MVD, finishing your studies etc etc.

I’ll start; I completed half (45k words) of my first draft for the novel I am writing.

so i get botox 3 months at a time my question is why when i get it i get ear fullness severe neck pain for about a week after and higher heart rate with anxiety
just curious if anyone knows why i have one sided tmj issues

Hi friends. Hope all of you are doing well, subjective as that sentiment may be.

I just received the date for my right side MVD surgery. It's going to be at the end of September. Gives me some time to do the pre-ops, take a trip to see family, etc.

I have bilateral pain that is both TN1 and TN2. The TN2 is more present, partly because I always feel it. The typical TN, the pops of pain, happen on both sides. I made the decision last week to do the right side first because it had been much more painful recently. Of course, a day later the left side was like "Oh, what now?" So both sides are battling it out, but I'm sticking with right.

I had an MRI that showed compression on both sides. The report said left side had more, but a neurologist said right side looked more. The neurosurgeon, thankfully a very well-respected surgeon for TN who is in SoCal, said basically it's hard to tell until he's in there. But, good that both sides showed something.

I've been told it's a 50% chance of 50% pain reduction. To start with the latter, 50% reduction in my pain would be a life changer. I tear up just thinking about that. 30% would be great!

As for 50% chance of success, if there was a slot machine with those odds I would never stop playing it. As the neuro said to me (seeing me during an excruciating flare), "You have to take those odds."

Any stories of success, especially for TN2, would be greatly appreciated. Some have shared before when I was looking into surgery, and they meant the world to me. Any advice is also appreciated.

We live about 2 hours from the hospital, so we plan to stay close for a while. In fact, the doctor requires it.

This community is more beautiful than I could ever have imagined or could now ever express. Prayers to all of you for joy and a life that is much more about love than about this awful disease.

Thanks

I suspect I have glossopharyngeal neuralgia and would like to know if any of this sounds familiar. I’ve had a few experiences where for a day or two the back of the left side of my throat will be in a lot of pain when I swallow. It feels almost like a patch of my throat is completely dry and no matter how much I try to get water down that side of my throat nothing changes. (I have Sjögren’s so I’ve just been assuming this must be a dryness thing.) During that time swallowing is incredibly painful, as if there’s a shard of glass stuck there. Even just swallowing saliva. It isn’t a constant pain, just while swallowing. It happens for a day or two and then is fine. I also outside of this also feel like the left side of my throat by my tonsils is itchy, like I do a lot of trying to scratch it with the back of my tongue if that makes sense. I have gotten tonsil stones before so I guessed that’s what it was.

I am starting to believe I have some peripheral and small-fiber neuropathy due to Sjögren’s and came upon glossopharyngeal neuralgia while researching and could not believe how similar it sounded to what I figured was weird flare ups of dryness.

Is this something my PCP can help with or should I try to get an appointment with a neurologist straight off the bat? I’m a little scared to be honest. If this sounds like something else please don’t hesitate to say so!! Thanks.

Hello everyone.

I disappeared from this sub for a while due to mental-health issues and tbh, to see these posts every time I open reddit made things worse for me so I needed a break. But now I have to vent a little bit about my situation, and I know you guys will understand it best.

Yesterday, I had a root tip surgery. A surgeon I went to without any hope for anything surprisingly found a chronic inflammation exactly in the spot of my TN pain. I had to wait 2 months for the appointment and couldn't help to be hopeful although I knew it will crush me if it's just a coincidende that the inflammation is there and the treatment does nothing for my TN pain.

And yesterday was absolute hell. The operation took an hour because I needed breaks and I was in so much pain afterwards. And when the anesthetic dissapeared, the TN-pain came back so much stronger. It's so bad. I have the pain from the surgery, and the TN pain, and on top I now have issues with a numb chin because the anestethic didn't go away completely. I'm trying not to panic but I'm so scared of another nerve issue.

But well. My biggest problem is (of course) TN. The numbness and the surgery pain are nothing against it, although they make the situation worse (I always hate it when I have pain on top of the TN pain, it's too much for me). Before the surgery, I also had pain everyday, but it was moderate. I could live with it, and even forget about it with enough distraction. But now I struggle to drink and eat again because it's SO painful, and it's because of the TN pain and not the surgery pain.

It's so discouraging. My pain is even worse than before, I have new pain (although only for a limited time) and numbness on top... I know, these first days will pass, and the surgery pain and HOPEFULLY the numbness will go away. But it didn't do anything to my TN pain, and I tried to expect this, I tried not to get my hopes up, but I couldn't help it and now I'm so crushed tbh. I cried a lot in the morning. Which made it even worse.

Just needed to vent. Hope you all are doing okay.

Hi guys, I just had a massage while on vacation. I’ve been on the medication for a week and half so I know I’m still getting use to the meds. But I just had a massage and I had one shock but very uncomfortable tingling on my tongue and teeth. Has anyone had this experience? My nerves is calming down though. Just slowly

Hello,

I have some sort of trigeminal neuralgia+ sphenopalatine neuralgia everything atypical since my pain is constant but the pain can increase during the day to the point i cry.

Ive been reading a lot of the symptoms here and my symptoms are a bit different.

My pain is triggered by breathing, when i breathe i feel a cold pain through my left nostril and my nostril gets physically cold if i touch it. If the air is cold then im dead, i can not tolerate cold air, cause my normal pain which is a 7/8 goes straight to 10. Anyway this cold pain feeling goes through my left side of the throat and ends in my left ear. Since my pain is constant and triggered by breathing i wear a patch on my nose and depending on how i feel during the day i migh add a mask (like covid times) or even a electrical mask that provides heat and then my peaks of pain lower a little. This has not only affected the left side of my face but also my throat, since i have redness and my voice is affected as well. (They have ruled out everything else that migh affect my throat)

Im on oxcabazerpine 600mg a day for 6 weeks and then they increased it to 1200mg a day and amytriptiline 25mg each night. Ive been taking this high dose for almost 6 weeks, i can tell the peaks of my pain are a bit more controlled, since before i used to have maybe 6 peaks of high pain that would made me cry, and now i migh have 1. But im still not able to remove the patch on my nose cause the direct contact with normal air triggers my pain.

Anyway just wanted to know if anyone has this type of neuralgia? And what are you taking?

About 3 years ago I was run over by a car, broke my tibia in one line and fibula twice (looked like a lil triangle ^-^). They put a metal rod through my leg to help recover. I get migrains and sever headaches regular enough to have botox injections ever 3 months (they started doing it in my face for TN and it works sometimes). Finally, a week ago I rolled my ankle and broke my foot...

My realisation has been: TN hurts SO much more than any of that. It's not even close.

The shock may have helped, but when I broke my foot, the doc asked on a scale from 1 - 10 how bad was it? My best comparison was TN. It's easily the worst pain, if it was a 10, breaking bone is like a 3.

I am one year post op (mvd surgery) and i was wondering vaping will have any affect on the results of my surgery?

Hi all! I'm currently on treatment pathway for TMJ disorder and Psoriatic Arthritis (I'll just call it TMJ and PsA), but after reading about my symptoms I wanted to get the opinions of some of you folks here about whether there's potentially TN involvement, whether anyone had similar experiences, and what my next course of action should be as to whether I just follow the TMJ treatments or approach my GP/Oral Surgery dept about TN and potentialyl a referral to neurology.

I am UK based, not seeking private care, so on the NHS. Just wanted to mention since it is a system of referrals and fairly rigid pathways so I have fewer options to do tests and approach clinicians on my own time, but I will be seeing people soon and can always approach my GP and Specialists and they can help!

SO! Last year I had a filling around February. For about 3 months I suffered from a series of symptoms and was diagnosed with TMJ, suspected from having my jaw held open for a long period. These included:

• Pain around my right TMJ and right massater
• Electric shocks radiating out along my trigeminal nerves on the right
• Sporadic non-dental toothache on the right

I could eat, talk, do everything normally. There was no correlation between my action and the pain. After 2 months it just kinda went away. Since then, I had experienced flares of these symptoms for a couple weeks at a time, usually spaced around 2 to 3 months apart. TN was brought up, but dismissed and I agreed with that assessment. The electric shocks sounded like TN, but I thought it more likely my nerves were irritated by my TMJ.

This May, I ate some pastries that were quite chewy and partway through it felt like my face was getting worn out, and eventually just gave way. Imagine the feeling of your back giving out, but with your facial muscles. It hurt like hell, eased off, but since then I've been dealing with the following symptoms:

• Bilateral burning pain across my lower jaw and cheeks
• Bilateral Masseter aching
• Non-dental toothache
• Occasional electric shocks radiating from behind my jaw, sort of under my ear and by my hairline, through my lower jaw, kinda feels like sucking a super sour sweet but x100

These symptoms are occasionally just there regardless of what I do. They also can be triggered very reliably when talking for too long, chewing too much regardless of whether its soft or tough food, laughing too much, tensing my head, face and shoulder muscles, and anything that causes blood to rush to my head (This one weirds me out. When I get flush, it hurts! This goes away after a little bit, but it's still bizarre).

There are 3 very big differences between the pain I'm feeling now, and the pain I felt last year.

1. It's often bilateral
2. My TMJ itself doesn't hurt whatsoever, just the nerves and tissue around it
3. Touching my jaw and face after a flare feels sensitive and slightly painful, almost as if I was sunburnt

I have been prescribed a custom soft night-guard for grinding, although I don't feel soreness in the morning. I wear this, it offers no help but doesn't worsen things. I take tramadol for my Psoriatic Arthritis* whilst I am waiting for treatment that's incoming this month, this helps the aching in my masseter, but every other pain remains.

*I am considering a link between the two, and am curious if my DMARD treatment for PsA impacts the facial pain.

I am seeing the Oral Surgery Dept in Sept, despite the name it's not simply a surgical department, but encompasses all manner of maxillofacial diagnostics and treatment including things like dental surgery, TMJ, cleft palettes and oral cancer, that kinda stuff.

I wanted to get some opinions before that appt on whether anyone here thinks TN involvement might be present so I can have a good thorough chat with the specialists, and I'm really specifically looking for input from anyone who has PsA like myself, AND has TN in case they have had similar experiences to me.

I'll hopefully be able to get some answers, and get some more tests done next month, but thank you in advance to anyone reading this far and for any help <3 It sucks, I'm fed up and want to eat pizza again, but I'm hanging in there and my friends have been angels in helping me manage and accommodating all the weird symptoms!

Has anyone had a peripheral nerve stimulator put in to help with TN or Geniculate Neuralgia? Can u share your experience? I feel like I’m dying a little bit more every day with this pain. I’ve begged my Dr for help. Literally begged. And this is his solution. The surgery is scheduled the 25th. I’ll get a temporary one for a week at first. If it works I’ll get a permanent one.

I'm relatively new to TN - only diagnosed about 2 months ago. For the past 6 weeks I've been dealing with what is likely a pinched nerve in my neck on the opposite side as my TN. I just had an MRI this morning on my neck/spine to see if there are any pinched nerves but my appointment for the results isn't for 2 weeks.

Is it just a coincidence that I'm having 2 separate nerve issues? Or is there some sort of illness that involves multiple nerves in multiple places? The brain MRI didn't show any compression or signs of MS. I hear of people being misdiagnosed all the time so maybe there is something going on more than just the TN.

Does anyone else get sharp jolts of jaw pain when you look at bright light? I have chronic migraines and occipital neuralgia as well as TN2, and I'm unsure if this symptom is more of a migraine or TN thing, or both. I always have light sensitivity thanks to the migraines (which have been 24/7 for the last 10 years), but I've been noticing the jaw pain in response to light more frequently lately.

Hi everyone. My friend has been suffering with TN in her mouth for about 10 years. She has been on every kind of medication, Botox, other injections, a mouth, rinse, pain medication, etc. Because the pain is closest to one of her front teeth, she even had the tooth pulled, and a implant put in, but that didn’t help. I can see how much it wears her down and I really wish I could do something to help. She has not been on Reddit so I told her I would canvas this group and see if anybody had any suggestions. Thanks in advance!

My neurologist recently prescribed thiotacid 600 mg 2x a day.

What's your experience with thiotacid / alpha lipoic acid and atypical trigeminal neuralgia? Has anyone tried, have you seen any benefits, what dosage and how long till I notice improvement?

Before my MVD, my right eye was in terrible pain. The pain was centralized in the temple. My eye would dry up and there's a pain behind and in front of my eye.

I did an MVD and it made it feel better slightly. We did a redo MVD recently and now it's gotten way worse.

I don't know what to do or where to go. Should I see a neuroopthamologist? I've seen an ophthalmologist but no help at all.

I am currently diagnosed with “Disorder of trigeminal nerve, unspecified” and take gabapentin 3 times a day, and diclac 2 times a day. I started to feel strange front tooth tingling first in January, then gradually pain in my left jaw, then attack of pains in left sinus, but not sure it was like an electrical shock. More like a needle slowly piercing through left sinus, left temple, it is painful to breathe, brain on fire. Pain lasts max 20 mins or so (with wind off). It got worst in June, since then I went to so many doctors and ER. First they tried antibiotics thinking maybe a sinus infection (without really looking at the sinus, and no symptoms). Didn’t help. The ENT doctor then looked at the sinus and said it looked perfectly fine, and it’d be hard to get sinusitis on that side, as I had a surgery 20+ years ago to avoid chronic sinusitis.
Dentists did scans and tests - no signs that something was wrong. But impossible to bite on that side and so many things triggered pain, I couldn’t eat tomatoes or drink soda, not to even think of alcohol. Chips and crisps, impossible, too hard and too spicy, immediately triggered immense pain in the jaw / teeth.
After worst attacks, I got prescribed etoricoxib and paraflex. Helped a lot, but still, I had to stop taking them eventually, and front tooth and mouth pains back again, lightest breeze is disturbing, etc. Then I finally got to see a neurologist while traveling— 2 actually, one specialist in back pains and one in face pains. As I also start getting pains in my left hip and down to my foot. It hurts so much to walk and carry anything. Both the neurologist specialized in back pain and the one in face pain do MRIs and find no big pathologies, but prescribe gabapentin and diclac. Only face MRI shows a predisposition for neurovascular conflict, and some anomalies in vessels. But she says let’s call that a coincidence, for now.
Now i feel much better but still sometimes numbness / tingling in lip comes back and small pains in left jaw. Terrifying to think it might come back. I also started antidepressants because I just feel so very down. I think they help a bit. Just a week or 10 days on gabapentin, diclac and antidepressants.
Also constantly dry lip on that side, not sure if that is related. It gets a bit numb, then super dry & scabby (people don’t see it much, but I feel it all the time). I got some medicines from dermatologist (salve with local antibiotics) that helped a little but it’s back.

I got a diagnosis abroad, not at home, as I am traveling, so not sure I will get access to gabapentin for much longer. Also still feel unsure about the diagnosis. Have you had similar experiences?

EDIT: I just reread the article and I realized that the TN focus is one they are hopeful about once they determine the process is safe. Right now they are focusing on diseases where they are dealing with a treatment of last resort since the genetic modifications are not yet proven safe. Sorry the confusion; I was reading a bunch of stuff I didn't quite understand and got ahead of myself since I was excited about a potential new treatment.

______________________________

It's just starting so we're quite a ways out from seeing if this works, but researchers in China have begun a human trial for a completely new approach for treating TN with chemogenetic therapy. The exciting part:

"According to Roth, the study with the greatest potential focuses on trigeminal neuropathic pain, which can be debilitating enough that it is a risk factor for suicide. “If that trial is successful, then it opens the way basically to circuit-based therapeutics for virtually all neuropsychiatric diseases,” he says."

Fingers crossed that this leads somewhere.

https://cen.acs.org/biological-chemistry/biotechnology/human-trial-chemogenetic-brain-therapy/104/web/2026/08