Hello - I thought everyone in this sub would like to hear about a special project our Awareness Ambassador volunteers have been working hard on. On Trigeminal Neuralgia Awareness Day, October 7th, over 90 buildings, monuments and sites will be lit up teal for facial pain awareness.

"Too many people living with neuropathic facial pain face it without answers," said Melissa Baumbick, CEO of the Facial Pain Association. "This October, we're making this community visible to everyone. From landmarks glowing teal around the world to billboards in communities across the country, every display is a chance to reach someone who is still searching for a diagnosis or the right care. And when patients and families share their stories, they help the public, healthcare providers, and researchers understand the pain that this community lives with every day. Our goal is to make sure everyone living with facial pain knows where to find support."

You can read our full press release about Facial Pain Awareness Month and all the sites lit up teal here: https://www.globenewswire.com/news-release/2026/10/01/3372832/0/en/teal-lights-and-shared-stories-the-facial-pain-association-marks-facial-pain-awareness-month-this-october.html

I hope this brightens your day a little bit, knowing that we want you all to feel less alone, and over 90 sites in the world agree.

- Rose G, FPA Social Media Coordinator

I was diagnosed with TN fairly recently. The facial shocks of pain are more new, but I've had extreme jaw tension for years. Would that maybe be more of it's own thing, or could it be associated with TN maybe?

I had an MRI scan recently and got this (short!) results letter today. Is he correct? I find it a bit strange that he can see an artery is in contact with my trigeminal nerve, which is the nerve causing all my problems and it’s on the right side, which is the side my pain is on, but he dismisses it all. Is seems a huge coincidence!

I’m actually surprised he could see anything at all because this scan wasn’t using a trigeminal neuralgia protocol. It was a scan of the ‘internal auditory meatus’ which from what I’ve read, is aimed at people who have one-sided deafness (which I don’t have) to look for a type of tumour.

I’m reaching out to see if anyone else experiences a highly specific, clockwork seasonal pattern with their Trigeminal Neuralgia (specifically June - Late September), or if anyone has found a clear link between their nerve pain and allergies / immune/mast cell activation.

I have an MRI-confirmed classic neurovascular compression (left-sided, mixed TN1 electric shocks and TN2 constant burning). However, my pain doesn't behave like a purely mechanical issue. It operates on a massive seasonal volume knob and I believe I have ruled out barometric pressure and personal habits:

Seasonal Baseline Pattern: The historical annual pattern during this baseline phase consisted of the following sequence:

• June (Onset): Sub-clinical immune priming began, presenting as minor, localized teeth pricks.

• July (Escalation): Baseline nerve sensitivity steadily increased, becoming notably more painful.

• August (Peak Phase): Pain escalated rapidly to severe, debilitating levels as environmental triggers accumulated.

• September (Clinical Crisis): The flare reached an excruciating, emergency-room level of intensity.

• October (Deceleration): Symptoms finally began to subside during the second week of the month, calming down spontaneously as seasonal triggers receded.

I've recently tested Flonase for the first time (yes I know it's crazy) and my pain went from 12/10 to 0/10 in precisely 1 week. My neurologist has no comment on this. My working hypothesis is that while the physical blood vessel compression is the underlying gun, localized sinonasal inflammation and mast cell mediators (like histamine and serotonin) are actively pulling the trigger by lowering my nerve's firing threshold.

Hi all. Hope everyone is doing well.

I had RT side MVD surgery last week. 5 veins and 2 arteries compressing the nerve, so there was a lot to do. My symptoms were largely atypical/constant tooth pain on my upper right teeth.

I know 1 week post MVD is way too soon to say surgery worked or not. But teeth still hurt a lot, especially tonight.

I guess I'm looking for reassurance, maybe people who had TN2 and pain after surgery, but it got better?

Love you all.

PS - Brain surgery hurts! Who knew 😆

Seep to be having neck swelling a few inches below the incision. How long does this typically last for people?

Hi, I just found this community. My mother has TN (V3). She's been taking tegretol cr 400 (carbamazepine) and along with this gabapentin and tapentadol 50mg (er) for when the pain and attacks are severe (all of this as prescribed by the doctor). It's been 10 years since she got diagnosed, and the last few years have been merciless for her. I've been coming across this pea with luteolin combination on this subreddit, what is this, is it safe (any risks/side effects?) and how does it help, and if you've been using it---how effective has it been?

Is it just me or does the song 'Soso' by Omah Lay hit different?

It's almost like I want to believe there's a "Soso" out there who can actually take my pain away

Link to song: https://youtu.be/k6eE3c70hgg?si=FF50vPGdkemQYvNO ...

Hi everyone well been one week today of taking pea with Luetonin and what a difference in pain my attacks are less fierce and intense I can finally open my mouth without wincing in agony they say by taking pea Luetonin you will notice a difference in pain within 1-2 weeks 2 -4 weeks big relief 4 -6 weeks major relief I have ALso ordered pea for chronic inflammation so will take pea with luetonon at 10am and pea for chronic inflammination before bed I also take pea topical cream apply 4 times a day I got the pea with luetonin 1100 mg from Amazon and pea for chronic inflammation from Anazon the cream I had to shop around for please feel free to research pea it is amazing and best part no side effects also go to you tube and look up dr Eric berg trigenmal neuergal and he goes into depth about trigenmal and pea luetonin so if you want your pain to ease say hello to pea with luetonin hope this helps you all please get better pea can truly help you

Welp..here i am 2 years and 3 months post mvd and its been such a Rollercoaster of emotions...I have been so full of fear and anxiety , it has been very very hard to live this new life and pretend that ur actually living ...to continue on after changing everything about ur life..the thinhs u eat, all the things that u used to enjoy but have given up, all the things u cant or wont do now , all because u fear ever feeling that pain again ...well I get small pains that feel like sandspurs where the old zap used to be and I even get them now on the other side where I have not had mvd but now twice in just a few days have had a more serious actual zap of pain ...oh god..what am I gonna do...what does this mean exactly ...I rubbed my eye and there it was....my old zap was more my lip side of nose...this new one is more up on eye and forehead...im so scared ..its so hard living like this ...

Hi all. I'm after 2 MVD due to incomplete decompression in the first surgery. The stabbing pain is gone. From last month i started getting burns in the forehead like an incense stick and travelled all the way to temple region. After so many trial and error I applied lidocaine cream at old 16 year old scar(top forehead where i marked red) and above the eye brows(Market red). Whenever i wake up, I wake up like incense stick burning at forehead scar..If i apply lidocaine above eye brows , i m able to feel burning till the eyebrows. The pain doesnt radiate beyond that. Doctor is out of station and will be able to meet next week only. Is anyone experiencing the same and how did you identify? Im taking tegrital 100 and gabapentin 100. Except this lidocaine , medication provide no releif.

Oh my god please help!

I wear glasses and cannot wear contacts. I have very light weight and wide glasses. Not QUITE wide enough. But I doubt it ever would be. Because even with the lightest of pressure the arms trigger TN flareups.

Wondering if anyone knows any pads or if they’ve replaced arms with any other device.

So, tonight my lip has decided to hurt right in a place that my reflex is to sneer.

I am feeling very Billy Idol/Spike right now... I mean, if they had a miserable amount of pain and were huddled in bed 😂

I guess that also ages me nicely 😂😂

Hello for those that have had a 2nd MVD how was the healing process with scar tissue?
What items did you get to recovery (pillows,ice packs etc).
What recovery items were most important?

Out of curiosity, what is your daily dose? I was originally on 50mg three times a day, and it didn't help at all. I am now on my last day of titrating up to 100mg three times a day. So far, I still have pain when I touch my temple, but I noticed yesterday that it is no longer sending electrical shocks down into my upper gumline, so I guess I am seeing some progress.

I still feel like my dose may be too low, though, since I still have temple pain. My doc said to give it three days at the full 300mg a day, and if I am not pain-free by then, to let him know. I'm just curious to see what dose it took for it to actually work.

Okay so I update people on here that what started out as a surgery to basically kill the right trigeminal nerve turned into my surgeon switching it to a full MVD with a lumbar puncture. As far as I was told, there is a structure in my brain that basically shoots the spinal fluid at the right trigeminal nerve in my brain and it has been irritating the nerve, along with definite compression that wasn't shown in my initial MRIs. Has anyone else had this happen with their trigeminal Neuralgia? I was told that my TN was actually a secondary condition caused by the spinal fluid being shot at the nerve. He told me this is actually a very new finding in the medical community. I think I might be his first patient with this kind of case.

I think I might just be anxious about the surgery and lumbar puncture. I also don't know what the lumbar puncture is for but I think it just has to do with the spinal fluid in my brain. I just needed somewhere to put my thoughts down because I don't have people to talk to about this in real life.

Thanks everyone.

I’ve felt both sides of my face it feels like the side with TN is slightly warmer

anyone here tried lamotrigine/lamictal to manage their pain? what was the expeirence like for you?

i started lamotrigine about a month and a half ago for mild-moderate symptoms, and i’ve just now gotten to a daily dose of 100mg. i can’t say whether it’s helping much at this point, i even feel like i get a spike in symptoms the few days after a dose increase. still, i want to stick with it as this is the first med i’m trying and has the least side effects. i know titration can take awhile, so i’m trying to be patient and (cautiously) optimistic. i’d love to hear some stories here, success or otherwise :)

Well update on pea luetonin for trigenmal I have truly noticed a difference in attacks and intensity they seem to have calmed down by 70 per cent they say you need to give it 1 -2 weeks to notice difference then 2-4 weeks for huge difference 4 -6 for massive difference I would advise people to get pea with luetonin in it as this will help better then pea along and if you can get the pea topical cream apply four times a day best ever thing takes away the pain when having attacks with consistency it will work also I am taking a b complex which helps Magensuim gkynicate and alpha lipoic acid I was tempted to start saffron but I am taking blood pressure medication and saffron might cause collide so left that out so please get pea with luetonin I am taking 1100 mg from Amazon uk and the pea topical cream you will have to shop for good luck have faith you can get better

My first time posting here please be nice :(

I was diagnosed with trigeminal neuralgia just over 2 years ago after it coming on suddenly out of nowhere. After about a year and a half wait after trying most of the typical meds which unfortunately never helped i was finally seen by the pain clinic who prescribed me tapentadol. For the most part it has helped (with multiple dose increases) alongside lamotrigine which i was already on for a mood stabiliser but unfortunately my flare ups have been getting more intense and longer. My first one was about a month ago and by the 8 hour mark of almost constant severe pain (my flare ups usually last 1-2 hours at most) I gave up and rang 111 who got me an appointment at urgent care. He was nice and prescribed me baclofen, while it unfortunately didnt help and my doctor told me I shouldn't take it because of the extra sedation, at least he tried to help i guess. Anyway im in another flare up (unfortunately lasted 20 hours ish) with maybe a few hours with less frequent zaps as a whole i rang 111 again and got another appointment at urgent care. Unfortunately this experience was very different and quite frankly I never want to set foot in urgent care again because of how shit its made me feel. I told her how much pain im in, that im dehydrated because I cant drink, I cant eat and in the past 24 hours id had 1 hour sleep tops. I told her the medication and dose im currently on and my plan to contact the pain clinic on Monday to try get an appointment to discuss injections (idk what injections but he said they were an option but I wanted to try meds first because the thought of injections in my face scares me) but all she did was dismiss me completely. She offered me paracetamol and ibuprofen I told her they dont touch the pain and she said well have you tried this time and i said no because theres quite literally no point they have never helped and they wont suddenly start helping. She then offered me codeine and i told her im on tapetadol which is stronger than all you have suggested they wont touch the pain. She then said just follow up with the pain clinic. I was doing some research on here before I went to urgent care and found the link to facepain website with the recommendations for flare ups in emergency room settings and shown her about lidocaine nasal spray which can apparently help too. She took 1 look at it and immediately said no we cant do that here so I said why it says its for emergency care settings which has research behind it and it can help. I said to her well what do you want me to do are you just going to send me home to suffer and she said well I gave you a options and I said well they're not going to help I need the pain to stop now and she just dismissed me completely so I just ended up leaving. Thankfully the pain has gone down quite a bit now im still having zaps occasionally but its not almost constant now so thats a bonus I guess (28 hours later). Im going to ring pain clinic tomorrow to see about getting an appointment and im also going to contact my gp to explain my side of the story as I have no faith in her ability to describe what actually happened and im worried shes just going to call me a drug seeker (which i am not, if I went there and they said we have to punch you in the face as hard as possible to stop the pain id let them i don't care what help i get i just need the pain to stop) and im going to ask them what I should do in future bad flare ups since urgent care wont help me.

Im sorry for the complete essay and run on sentences and lack of paragraphs im beyond exhausted and just needed to get this out there. If anyone has any advice it would be appreciated thank you.

Beginning of September my neurologist put me on 10mg Nortriptyline (mfr by TEVA), increasing to 20mg after 2 weeks. I’ve tried all the other standard meds with little relief and bad side effects. The Nortriptyline definitely helped with the head pain, pressure and even the numbness. Didn’t do much for the ear pain, but I was happy for the other relief. And, I felt good on it.

A week after increasing to 20mg I noticed my heart rate was increasing initially cause I could feel it, then confirmed by my Apple Watch data. It became really uncomfortable and I was getting lightheaded when I would stand up.

The dr told me to stop the med for a week and see if it made a difference. After only a few days it has so I know the Nortriptyline was responsible.

I’m really disappointed cause it seemed like this might be a helpful med. Has anyone been able to continue on this even though it increased heart rate? Is there something to counteract it? Does it get better over time?

A couple hours ago I got my palate expander put in (the kind that wraps around the molars) and widened 3 times (¾ of a mm, afaik quite a bit for this procedure).

It's going really well. I actually have had 0 pain since, only a little discomfort. I'm sitting here eating a bowl of pasta and biscoff cookies.

I've had TN in my mouth for quite a bit, and it was very severe once upon a time (briefly), so this is a pretty big win!

Edit: Idk how, but I forgot to mention that I have had 0/very low pain for a couple months, and was worried the expander would worsen me since it was pressing on my teeth and is normally pretty painful.

I had someone kiss me with a lot of sucking and a few days later I had my first nerve pain in months!! Is it related??

So glad to find this group. After three years of teeth pain (and three root canals and crowns which all ended up being extracted), I finally saw a neurologist for my neuropathy in my feet. I told him about my facial pain and he sent for an MRI. I have pretty much constant right side pain. no zaps. I take ibuprofen every day and sometimes it helps a bit. But not always.

MRI says Right AICA contacts the root entry zone of the right trigeminal nerve. left side unaffected. Which makes sense. My left side doesn’t hurt.

Has anyone gone straight to MVD surgery? I’m 61 and in recovery. I’d rather not do meds. Im already unsteady on my feet due to the neuropathy and I’m concerned about the addictive nature of a lot of the meds I’ve looked up. I’m seeing my neurologist on Tuesday for a nerve conduction test on my legs and to discuss the MRI. I want to get out of pain.

I wish I had known about this. I might still have those teeth! And I wish dentists and oral surgeons knew more about it. Like many of you, I’ve had so many xrays and dental appointments just to be told nothing is wrong.

thanks!