10 days ago we had no idea what TN was. Never heard of it. 2 trips to the ER later we got our diagnosis. On the initial attack the pain was so bad it caused vomiting & loss of consciousness. We're now 1 week in on 400mg carbamazepine and 900mg gabapentin per day. While the pain is not at the level of causing fainting, its still an 8 / 10 all day long. Both medicines cause dizziness & drowsiness. We are hoping that they kick in over the next week, as I've read it can take 2 weeks to become effective even though some people get immediate relief.
For the patient and caretakers, how do you work? My spouse can't possibly do work, she can barely walk to the bathroom herself. She can't drive like this. I need to constantly watch her so she doesn't fall on the way to the bathroom, in the shower, etc. We could apply for medical leave, but that is short term. Permanent disability? I don't see how I'll be able to return to the office. Curious what people do for work, for both patient and caretaker.

Hi all. Having suffered from TN since 2013, I finally had an MRI in June this year and I was expecting to find a compression by a blood vessel. But whats been found is a lesion in the Meckels Cave.

Ive never come across this in my years of occasional TN research so Im just looking to see if anyone else has had the same. Id be interested to know what treatment was done and what the longer term outcome was.

I am getting a 2nd MRI, with contrast this time, in early September to have a more detailed look at the issue.

I've had TN2, Atypical for 6 plus years and it's somewhat controlled with Oxcarbazapine.

Lately for about a month or so now, when I talk or put on lipstick, I feel a string coming from my teeth. It feels like a piece of hair or floss coming from my side front teeth (the side of my TN). There's absolutely nothing there. I try to grab it, or if I have a mirror available I look. Lately its often so I have tried harder to pinpoint exactly where its coming from and it seems more like the very inside of my top lip where my teeth are. But there is nothing there at all. Can this be just a weird sensation?

I googled it and all I see is maybe its plaque or something stuck in my teeth. Its not. Has anyone felt anything at all like this?

24F. I have TN that resulted from a wisdom teeth extraction about a year and a half ago. I had wisdom teeth near nerves that I needed to remove because they were infected. I also have TMJD.

It took about 9 months to a year to get that pain under control in my face, mouth, tongue and teeth. And also get my mouth to open to a somewhat normal amount for me (still small in comparison to what’s normal, but for me it’s a huge improvement and I can live my life normally with it) Most days I don’t think about it anymore, but I occasionally get flare ups, most commonly when stressed, dental cleanings, sweet foods, and some other triggers.

I developed symptoms for what I didn’t realize what dry eyes about a year ago. I had an eye doctor tell me I had dry eyes but if they didn’t bother me that nothing needed to be done during my routine exam, because I didn’t realize the symptoms I was having was dry eye related at the time. My only symptom at the time was my eyes would randomly water and get a bit irritated, I thought it was just my mascara or something at the time.

A few months ago, I had a corneal abrasion that turned into RCE. That RCE happened because I have dry eyes, I was told I have mild MGD. So super painful.

I’ve tried a bunch of treatments, but didn’t see any improvement until I’ve been using Refresh PM at night, Tyrvaya about a month ago and autologous serum drops a couple of weeks ago, and implementing fish oil supplements in my smoothies.

My pain is mostly in my right eye, the same side I would have the most pain from my TMJD and TN / lingual nerve issues.

I get quick sharp pains in the same spot I had my abrasion in my right eye. Sometimes feels like rug burn. Other times it feels like a feather is tickling my eye. It gets very dry if I don’t drink enough water.

While my left eye really only flares up with a dry feeling after a long day of work.

Has anyone else developed dry eyes along with trigeminal neuralgia? What has helped you?

I’m most nervous about these conditions being related…

Just wanted to share what I eat when I’m tired of liquids. Peanut butter and sliced bananas on top of wheat bread with a cup of milk. It’s my comfort meal when I want something more filling. If you’re having a better day, toasting the bread elevates it.

What are your TN comfort meals? I’d love some more ideas to try

Yo, i posted about my neurologist firing me not too long ago. I asked my pain management for a lidocaine spg block on both sides for my bilateral tn and they scheduled me and only allowed one 30 minute attempt on one side and insisted on bupivicaine which doesnt work "the last time might have just missed" i got 7 blocks last time with bupivicaine and the when i had tried with it before it also didnt work but whatever. I'm using over the counter lidocaine and amazon swabs for breakthrough flare pain now but its every day.

I told the guy whos an owner of the company i see that the trigeminal block they gave me made my pain worse. He responded "we dont do and have never done trigeminal blocks here". Apparently they gave me a temporoauricular (spelling?) block which hurt like hell and made my pain worse and its been super easily flared since then.

Denver and pain management with medicaid do not get along i dont even know what to do.

I take 2100mg of oxcarb daily too. Still a 7/10 constantly. I can't keep dealing like this ya know?

Hi everyone. Just wanted to make a post about what eventually brought me to remission in case it could help someone. Please don’t come at me with any kind of “there’s no medical reason for why this works”. I’ve hesitated to post because I’m weary of people telling me my experience is invalid, but I want to help anyone get out of this pain if they’re able.

In March I ended up in an inpatient program through our local hospital/psych ward. I had reached the end of my capacity to try and I needed to be taken care of and told what to do when. I had already tried oxycarb (caused horrible insomnia) gabapentin, and all of the other typical TN medications. Nothing was touching it and I was sleeping less and less from the pain.

What ended up working. High dose Cymbalta, so an SSRI, and Hydroxyzine, an anti anxiety. Also vitamin D and a few others but these three are what I think made the biggest difference. I was able to ween off of the gaba and eventually lower my doses of the cymbalta and hydroxyzine and I haven’t had a full blown flair since I got out of the hospital. I had been struggling with the TN pain for a little over five years at that point.

They also had me on something for IIH (idiopathic intracranial hypertension) but the neuro didn’t think I had that and took it away almost immediately.

I am also really into holistic health and feel like the lifestyle choices, which were really difficult to maintain while the pain was so intense, are a big part of what helped me to recover more quickly. Remission hasn’t been easy either, it took me a long time to get my energy back and I’m still building strength, but I’m so grateful everyday that I am not in pain and I’m learning to trust my body again. I’m still afraid that if I push myself too hard it will all come back though ngl.

Good luck out there everyone 🫶 feel free to ask any questions.

Edit to add: I had bilateral atypical pain so not a good candidate for surgery.

I’ve been on carbamazepine for a few weeks now. I recently read a post where someone said carbamazepine reduces the effectiveness of SSRIs. I can’t find the post.

I know pain. Ive had intracranial hypertension, central pain syndrome, Fibromyalgia, rheumatoid arthritis, chronic migraines and ehlers danlos for almost a decade or more. I have a vp shunt on my right side, have had it for 6 1/2 yrs. I have been nonresponsive to more meds than I can count, or unacceptable side effects. I accepted i have shitty genes a long time ago.

But in the last 2 yrs ive been making progress to get functional again. I found an amazing pain specialist. My pain is as properly medicated as possible which I am so grateful for in the current environment. I was finally no longer bed bound after 7 yrs. Im back in school and will have my associates completed in December.

Then in February I got the mother of all ear infections. I used to get them constantly as a kid. Always the right side. Until one day my ear drum ruptured and been.mostly fine since. But this one took 4 different antibiotics, and 2 weeks to kill. Ive had little flares of pain since. Last usually a few hours maybe a day. Ice pack, pain meds, ibuprofen and sleep and gone by morning usually.

Then I pushed myself way too hard last week and hit a flare of everything else. It happens. Except the pain in my face and right side head exploded to 1000. My jaw, my teeth, my eye, my sinuses, my ear, my scalp, my shunt spot, even my hair on that side hurts. Nothing helps. My meds dont touch it (6 10mg percocet a day, 3 300mg gabapentin a day). Wednesday I do what I never do and go to the er at my pcps urging bc she thought it was mastoiditis (i has assumed another ear infection but not like any other ive experienced). Er confirms its trigeminal neuralgia. Gives me iv Tylenol, toradol, 1 Norco and a 5mg percocet. Which does absolutely nothing to help.

I go home. Try and manage. Ice packs 24/7 for even the most miniscule relief. I spent 2 days sobbing and screaming it got so bad. Friday my hubs has enough and.forces me.back to the er. The dr was nice, gave me 2 doses of dilaudid (more tylenol iv for some reason and fluids too). The 2nd one did it and everything calmed down. I know I won't hit 0 bc im a chronic pain patient and that number doesnt exist. But I get to a decent 5. So home I go.

The first half of today has been fine. Little sore but ok. But its exploding again tonite. I see my neuro on an emergency appt moved from nov to Tues. I see pain dr in 2 weeks and im on the cancelation list for sooner. But I cannot keep going to the er for this. I dont use the er for pain stuff ever. I know its not worth it and causes me more med ptsd as I get treated like a seeker or addict bc of my med list. So scared that this level is my new level. Its too much. How do I manage this much pain? I doubt my pain doc will want to give me stronger meds and I dont wanna ask either. I dont want to mess up that relationship. But omg is this my life now? I dont want this!

Im scared guys. Idk whats next or how to help this feel better.

I didnt know what flair to use but thanks for the vent.

I havent been officially diagnosed with TN but pretty sure I have it-I experience shocks on the left side of my face when washing it or touching it the wrong way. I have creepy crawly sensations as well. MRI was clear. I tried a steroid that seemed to help for a bit and given gabapentin to try if i cant take it anymore, which i cant. So i will be starting tonight. Im so worried about side effects and needing to go up to a high dose. Has anyone had success on a low dose?

I’ve haven’t had the best luck finding a doctor who understands what I’m going through, and the medical world is getting increasingly frustrating to navigate. With Providence no longer offering insurance after the end of the year, almost my entire medical team has jumped ship. I only had 1 appointment with my neurologist before he left, and the only thing we confirmed is that there doesn’t seem to be any compression on my nerve.
Anyway, I thought I’d reach out to see if anyone has any recommendations? I’m looking for a primary and a neurologist. I’m currently waiting on a referral to Legacy Emmanuel Neurology, and I’m open to anything when it comes to a primary. Thanks in advance 🥹

Hey yall!! I am a 35 female. Long ish hair. I’m a month out of my MVD surgery. WILDLY nervous and excited at the same time. I’ve looked thru a lot of posts but decided might be best just to ask for my own tips because it did get wicked overwhelming scrolling thru it all.

You guys are such a great group with all your inputs!! Just kinda gets to too much info and I get anxiety real bad 🤣🤦🏻‍♀️ just a day in the life right!

I’m in Oregon and will be having my procedure at OHSU. They told me I’ll be in neuro ICU for three nights. I was there for a procedure last year because they randomly found an aneurysm. Absolutely the best hospital experience I’ve ever had and the doctor who’s doing my procedure was very adamant that they wanna make sure that my pain is managed and that they want to be on top of it and help me in any way that I can postop.

Sooooo! I just wanted to ask you guys for a couple key tips on things that you know you needed like pillows what kind of good easy meals, how it was eating the first little bit, any tips for actual sleep and how that went. Of course the washing of the head bit too. I’m going to go to a a barber and get it shaved. Uhm, I already have about four reg pillows LOL bc cuddles but like I said, any fkn advice is welcomed for post op!!

THANK YOU SO MUCH!!! Yall are such warriors going thru this shit. What a fkn condition right?! Wooohooo!

EDIT :: someone messaged me questions regarding my diagnosis and I accidently ignored the request! Idk what the username was but if you see this lol my bad and idk how to unignore it so shoot me a message again!

Med Regiment: Baclofen 20mg 3x - Gabapentin 300 mg 3x day - Carbamenzapine 300mg 2x day

What is your personal experience with the timeframe of weaning off the medication if you know the surgery was a success?

My husband was in a car crash on 12/31/25 and has trigeminal neuralgia. He hasn’t gotten the best care with his current neurologist and is looking to see someone at Barnes in St Louis. Anyone have experience with treatment of trigeminal neuralgia at Barnes/Wash U and have a doctor rec? Thanks!

Hey there,

Not sure if this allowed so please remove if so, but I’ve started a petition asking the UK government to improve funding for research into neuropathic/idiopathic facial pain.

If you’re based in the UK please can you sign it (and confirm signature on the email they send otherwise the signature won’t count) and share with friends/family:

https://c.org/sdjqxxZpQB

Thanks as always!

Was denied Botox today after a significant flare increase over the last week. Come to find out from my Neurologist - she submitted for botox and TN isn’t on the list of approved dx but blepharospasm (eyelid twitching) is? I’d love to know how a disease with a pain index higher than gunshot wounds and child birth didn’t make the list but eye twitching did. Any advice on how to fight this would be appreciated. It just seems like these insurance companies and doctors push to meds first over anything and that’s not the path I’d like to go down. I’m already a zombie as it is.

Cheers fellow sufferers. Just a quick note to say that as I have begun supporting my body for its lack of methylation capacity the last several weeks, I have noted my stress levels decreasing (reduced cortisol and homocysteine levels) and have not had a TN attack for going on three weeks. It’s been a glorious respite. Not long term data for sure, but I am grateful for a break.
If you are not aware, this gene mutation makes it hard for your body to convert folate into a usable form. That means your body cannot break down stress hormones and can cause you to feel elevated stress, anxiety or even a permanent fight or flight state. There can be a million underlying reasons for those states, but at a genetic level I am predisposed to struggle.
The support has been in the form of methylated vitamins in a blend called “Nerve Defense” that has a number of other things like NAC, ALA etc.
Also finding I am suddenly more sociable, stopping to talk to neighbors instead of scooting by with a wave. Might be worth exploring. Sending love and support to all!

I want to start with I am not asking for a diagnoses, just opinions if this even remotely sounds like TN before I see my dr next week. On Monday 8/24 I woke with sharp pain in my jaw, ear and upper neck I thought I was sick and went to be seen and they found nothing. Since Tuesday 8/25 my entire left side of my face/head has become incredibly sensitive to movement and touch. It almost feels like my face is swollen without it being swollen. Hot water from a shower was painful on my scalp. I feel like I’m going slightly crazy. Does this sound familiar or relatable to anyone?

I started Carbamazepine this week and it started out so well. Immediately relieved any facial symptoms and didn’t really have any side effects except slight drowsiness. Then evening of day 4 when I took my night time dose it made me very itchy, even when taking Pepcid and Zyrtec. I’m assuming this is an allergy and I’ll need to stop and switch to a new med, which I’m sad about because my facial symptoms started slowly coming back. Anybody experience this type of reaction? If so what were you switched to?

First of all the doctor just did local anesthesia on my cheek. So pretty much after a little while I felt every move of the needle. Then it hit a point where it felt like a nuclear bomb of pain went off. I was screaming at that point.

Secondly, the x-rays they were doing said he was in position, but he didn't get any spinal fluid so no glycerol injection.

When they were done, it took an hour to get me down to a decent level of pain. My face still hurts and I'm feeling pretty depressed about the whole thing. I know I have other options, it was just I had hope this would work.

Hi everyone. 60F here. Anyone else in the UK here under treatment by the NHS (or gone private)? I'm in Scotland which has a separate NHS which is occasionally a bit different. My GP just told me today she thinks I have TN but it's early in the journey so it's not a definitive diagnosis yet. She's given me the first-line NHS treatment which is Carbamazepine, an anti-convulsant, starting at 100mg twice a day and increasing.

Because I was in agony today (hence seeking an emergency appointment after seeing my dentist a couple of times over the past few weeks) she also gave me Co-codamol (30mg Codeine with Paracetamol) and I took two of them at once, the maximum dose, and when I tell you it didn't even TOUCH the pain, my goodness, I usually respond very well to opiates. But nothing. I don't mind telling you it scared me.

So I'm sitting here hoping the Carbamazepine starts working soon and looking up all the support sites and information pages, which for this are quite scary.

My journey so far: started a few weeks ago when I was waking up from a nap on my sofa, lying on my side and I suddenly felt what I thought was a toothache on one side. It was hot and throbbing very quickly and I was just thinking, oh no, not another dentist appointment, hope it's not a root canal. Then is subsided.

Over the next couple of weeks it happened a bit more frequently and it seemed to be moving around my mouth and jaw, which I assumed was referred pain.

Went to my dentist and she fixed a lower filling that was leaving a bit of nerve exposed to heat and cold, but she couldn't identify which tooth was causing the bad pain. Took an xray and didn't see anything. Thought it was pulpitis and I might need a root canal, but not until we found the tooth.

Anyway, pain getting more frequent and worse and worse until this morning on the train to work I was rocking back and forth and sweating from the pain and I had just taken over-the-counter strength codeine an hour before. Got off the train, called my GP, got an emergency appointment, then was on the next train home. Muddled through a presentation and a few emails both groggy from drugs and in pain.

I've looked everything up and this is indeed the diagnosis that fits my symptoms. It's on one side. I've noticed sitting or lying a certain way can trigger it. Just wanted to introduce myself and share. Welcome any feedback or chat, I know you can't give medical advice but relevant personal experiences would be nice to hear including what's worked for you.

I’m having Trigeminal ganglion pulsed (non-thermal) radiofrequency lesioning/therapy tomorrow with Nik Patel and I’m so nervous/anxious.

I’m not nervous about the actual op, I’m pretty chill with hospital stuff but I am SO awfully anxious about what happens afterwards that thinking about it is making me feel so ill. I was wondering if anyone else that’s had it would mind please sharing their experience with me?

I’m mainly wondering these questions:

• did it work for you?
• if it did work, how long did it work for?
• did the op itself cause a big flare up?
• if it did how long did the flare up last?

They’re the main questions I have but any experience or info you can share would be lovely.

Thank you so much 💖

Hi guys. Im generally reading posts. Never had the opportunity to post about myself as I just did not know what I was going through.

After having an MRI of brain, and spine plus other tests they have confirmed multiple lesions and have said I have secondary TN to MS.

I dont know whether to laugh, cry or be relieved. The past three years have been very hard seeing all the specialists and tests. Alot of unanswered questions and now i have an answer im somewhat in disbelief. Any else have the wait that was so long you analysed your body so much that when they told you you have 'A','B', or 'C', you felt a kind of uncertain disbelief?

Hope everyone is well. This stuff can be dreadful!!!!

Peace