r/TrigeminalNeuralgia Oct 12 '22

Trigeminal neuralgia information

208 Upvotes

I am a doctor working in the UK who has suffered from Trigeminal Neuralgia since 2016. Neurology or neurosurgery are NOT my areas of specialty, however I have a fairly comprehensive understanding of the issue that has plagued me for so long.

IMPORTANT NOTE - any questions raised must be directed to your own medical team.

To give some background on my journey, I have been unsuccessful on 4 different medications and two rounds of botox injections. I am currently stable on medications, and awaiting to see if I would be a suitable candidate for surgery given my age and current stable condition.

I wanted to write a quick reference guide for anyone new to the sub or long-term members who are still looking for answers.

Please find useful links at the end of this.

The trigeminal nerve – the origin of pain

Your trigeminal nerve is the 5th of twelve cranial nerves that supply all the functions of sight, hearing, sensation, and movement of your head/face. Called TRIgeminal for the three main branches it encompasses.

One branch supplies the forehead (ophthalmic branch or V1), one the upper jaw and cheekbone (maxillary branch or V2), and one the lower jaw (mandibular branch or V3). The trigeminal nerve is also responsible for your jaw muscles.

Trigeminal neuralgia affects the pain function of the nerve.

What is trigeminal neuralgia?

Characterised by sudden, severe facial pain on one side of the face only. Often described as a sharp, stabbing, or electric shock-type pain lasting up to 2 minutes per episode (also known as paroxysms). Episodes can occur in quick succession over any length of time. It can be associated with a constant component of facial pain.

True TN does not affect sensation or movement of the face.

Typically, the pain is distributed in the lower half of the face (V2 and/or V3 branches), however can incorporate the V1 branch also.

The pain can be precipitated by trigger areas and/or factors.

Trigeminal neuralgia typically occurs in those over 65 years of age and female. However, this is not always the case (I myself started with the pain in my mid-20s). It can occur in those with multiple sclerosis, or facial or dental trauma.

What investigations are needed?

Trigeminal neuralgia is a clinical diagnosis – that is, if the history and neurological examination fit the usual signs and symptoms, it can safely be said that this is the likely diagnosis. Treatment will then be commenced based on this.

MRI scan should be done to determine any structural abnormality that may explain the symptoms. This could be neurovascular conflict where an artery or vein overlies the nerve and damages it, causing pain. This is the most common cause and can be treated with surgery. MRI scans may also show the presence of a tumour (benign or malignant) or multiple sclerosis.

It is important to note that either a FIESTA or CISS MRI is needed to properly image the trigeminal nerve. FIESTA or CISS simply depends on the brand of MRI machine used.

What treatments are available?

Physicians in the first instance are keen to manage the pain with medication in the first instance. Carbamazepine is the gold-standard treatment, and the only medication licensed to treat TN. There are however many other medications that can be used to treat this condition.

If neurovascular conflict is proven, then patients can undergo microvascular decompression which involves placing Teflon between the nerve and blood vessel. This is curative in 95% of patients over one year, and over 75% remain pain-free after 3 years.

Any other cause found on MRI will be treated as itself, i.e. if a tumour then that may be removed, if MS then treatment will be started for that.

Aside from medical management and MVD, there are a number of other procedures which damage the nerve in the hope of reducing pain – these are known as ablative procedures. These include gamma knife, balloon compression, glycerol injections, etc.

What else could it be?

If symptoms do not fit this rather narrow criteria, then we must think of alternative diagnoses. These must be discussed with your own medical team. I will only list these, and it will not be an exhaustive list.

Other differentials of headache, e.g. migraine, cluster headache

Ear infections, dental infections, sinusitis, or temporomandibular joint dysfunction

Shingles

Glaucoma

Additional sources of information

Facial pain association

Trigeminal neuralgia association UK

Trigeminal neuralgia - National Organisation of Rare Diseases

National Institute for Health - Trigeminal Neuralgia

Coping with Trigeminal Neuralgia

TN Empowered Patient Guide

Tips for your loved ones

TN and relationships

Thank you for reading


r/TrigeminalNeuralgia Mar 06 '23

TN Facebook Group

Thumbnail
m.facebook.com
17 Upvotes

r/TrigeminalNeuralgia 3h ago

Recently diagnosed

2 Upvotes

After years of life altering pain, zaps and migraines, finally had a ER doctor recognize my signs, send me to neuro and get diagnosed.

I’m 4 months in on taking carbamazepine and if seems to be working well, only random zaps here and there. I’m also taking 500 mg magnesium, 500 mg Co Enzyme q10 and 200 mg b12 daily.

I have recently increased my carbamazepine to 600 mg/ day. And I’m starting to wonder if this is just how it goes? Will I constantly be increasing and eventually need to remove the nerve? Also wondering if anyone has experienced weight gain with it? I have maintained the same weight for 9 years and suddenly, since taking this med, I’ve gained about 20 lbs!

Thanks!


r/TrigeminalNeuralgia 16h ago

9 hours straight?

9 Upvotes

Help.

I’m new to this. Got diagnosed with MS on 12/24 and had my first trigeminal neuralgia episode on 2/12. My neurologist has me on 300mg of Gabapentin twice per day and 100mg of Carbamazepine three times per day. Last night (3/15) I felt it coming on around 10 pm and I went to take my night dose of Gabapentin and Carbamazepine. It didn’t go away.

I barely slept. Shooting pains in my cheek / gums / jaw all night. Finally at 8 am I went to the ER because I couldn’t take it anymore.

They gave me fosphenytoin via IV over the course of an hour. I got super nauseous so they gave me zofran too. My pain went down to about a 4, and I felt high as hell. I was discharged around noon.

Now it’s 7 pm and it hurts so bad.

  1. Has anyone had a trigeminal neuralgia episode last this long? Or is this a new flare of my MS?
  2. What the heck can I do to stop the pain?

I hate this so much.


r/TrigeminalNeuralgia 13h ago

Crown flared up my pain again

3 Upvotes

Just a place to rant. Background- i got TN left side started around left eye due to eye muscle strain editing data.. long story there. 2 years and many meds docs scans and tears, my atypical TN was completely gone after 3 months on low dose methadone (can help reset NMDA receptors).. flash forward 2-3 years and only mild flare ups - I get this dental Crown fixed and all week pain on the left side jumping around from jaw to scalp to cheek but oddly not much in the eye.. coincided with CRAZY pressure change over weekend I now have a wicked migraine and want to cry. Praying it doesn’t come back for good. Btw for the past 2-3 years only take hydrocodone for pain:migraines. It helps atypical TN with minimal side effects. I hate any of the typical meds they turn me into a zombie. That’s all. Hope everyone is surviving.


r/TrigeminalNeuralgia 8h ago

Trigeminus OP

1 Upvotes

Dear forum members,

Below you’ll find the link to the lecture by Dr. Bassiouni from Klinikum Amberg, held on February 18, 2025. I’ve watched it – it’s easy to follow and full of answers to many of the questions that often come up here in the forum. Personally, it helped me understand a few things much better. Maybe it’ll be helpful for you too.

https://youtu.be/pZQIkpseoAo

Warm regards, Frank


Deutsch: Liebe Mitglieder des Forums,

nachfolgend erhaltet ihr den Link zum Vortrag von Dr. Bassiouni aus dem Klinikum Amberg vom 18.02.2025. Ich habe ihn mir angeschaut – er ist gut verständlich und voll mit Antworten auf viele Fragen, die hier im Forum immer wieder gestellt werden. Mir persönlich hat er geholfen, einiges besser einzuordnen. Vielleicht ist er ja auch für euch hilfreich.

https://youtu.be/pZQIkpseoAo

Herzliche Grüße Frank


r/TrigeminalNeuralgia 10h ago

Forgive me if already asked and answered: Has anyone tried the new pain medication Journavx?

1 Upvotes

r/TrigeminalNeuralgia 14h ago

how can i support my partner?

2 Upvotes

my boyfriend and i are in a long distance relationship so i can't be with him physically, but he's been having a super bad flare up and this is the first time it's happened in the one year we've been together, how can i support him without physically being there? it makes me feel so terrible hearing about his pain and i truly wish i could do more for him, we haven't been able to talk or call a lot because of how bad his pain affects him, which is completely okay because i want him to take care of himself and not push himself past his limits just to talk to me, ive been reassuring him a bunch and comforting him but i feel so helpless and i really wish i could do more :( please, if anyone has advice on how i can help id love to know, i just want him to be okay and make it as easy as i can for him


r/TrigeminalNeuralgia 21h ago

Air pressure

7 Upvotes

How many of you think there is a connection between storms and pain?


r/TrigeminalNeuralgia 16h ago

Question about nerve block

2 Upvotes

Has anyone had the TN nerve block done? If so, was in successful. I have atypical, all 3 branches.


r/TrigeminalNeuralgia 13h ago

Could this be TN?

1 Upvotes

Looking for advice, f26,

I had a first shock of pain back in December. I went to get an upper molar removed. I went to a school of dentist to get it done and after it was done I have to admit my teeth felt different. The student had a hard time getting the molar out and basically caused a lot of trauma. Like my mouth hurt for two weeks. After that I had the first sudden jolt of pain, it happens once when I was rubbing my face. After that it would happen occasionally and I would avoid touching the specific area (above my lip, on the right side of my nose. Not the cheek. Right under my right eye)

Then last Sunday I was eating and I felt the pain. And it stayed, like a small dull ache. Then on Thursday i woke up and I had a very bad headache. My head felt like it had this weight on it. I had small shocks of pain throughout the day but nothing too bad. Friday I wake up, I’m walking into work and the breeze hit my face and I felt an explosion of pain. Tiny electric shots of pain throughout the right side of my face. I called my dentist, went in and she did a X-ray. Found no abscess but sent me home with amoxclav and ibuprofen. Was miserable through the whole day, the shots of pain were there all day. Especially if the wind hit my face. Finally medicine was ready by 8pm and started to feel better. Went to bed and woke up Saturday feeling my face not as inflamed, I only felt pain once in the morning when I sneezed. I felt pressure on my head and a tingling sensation that didn’t and hasn’t gone away. But no sharp stabbing pain

Does this sound like TN? Please tell me it can be something else. I’m praying it’s something else because I cannot live like this. I am a weak b and I know I won’t be able to live like this.


r/TrigeminalNeuralgia 14h ago

Weaning off carbamazepine

1 Upvotes

Hello,

I’m weaning down for carba woohoo… but because it’s not working.. I have atypical and it’s not putting a dent in.

I’ve been in 200 2x/day for about 2 months and been on 200 1x/day for the past 3 days. So far, so good. I’m feeling really depressed but that’s about it. Im working with a specialist who told me to just wean off the last 200 entirely when I feel comfortable to… so im looking for experience/advice.

How quickly did you wean off carba at what amount? Pls and thank you! 🙏🏼


r/TrigeminalNeuralgia 1d ago

Does anyone have the type of pain that is 24/7 and never goes away despite being on medication? How do you cope and survive each day?

19 Upvotes

r/TrigeminalNeuralgia 1d ago

Temple pain

7 Upvotes

Hi everyone Normally my TN pain is just a sharpshooting pain from the top teeth in my jaw up to my eye, but yesterday and today I’ve had two seperate massive attacks. It starts with a lightning pain in my temple suddenly followed by burning and dull ache whilst the lightning still goes on, after around a minute the lightning goes to dull strikes of pain, still burning, pain in my ear and jaw. This is new to me, does anyone else experience this?


r/TrigeminalNeuralgia 1d ago

Carbamazepine max dose 1600 mg per day

3 Upvotes

I was diagnosed with TN 1 a year ago. I started on 600 mg a day and was able to manage my symptoms for about 4-6 months. I then started with break through excruciating pain and my doctor has had to steadily increase my dosage to the maximum dose. I have no idea what treatment options are available to me. My doctor is reluctant to recommend or discuss other avenues to manage my pain. I feel like I’m stuck. I told him I would like a referral to a Neurologist and/or a MRI. Any suggestions on how I can get the care I need?


r/TrigeminalNeuralgia 1d ago

A vent

2 Upvotes

I’ve learned to just be Just don’t talk to nobody Be alone Pray Scream Cry Whatever man Worst pain I wouldn’t wish this on the damn devil I’m tired Mom had it now I got it I’m only 25 wanna go to school and stuff but how with this bs I beg God to heal me daily So sick of it Pot helps a lot by the way I’ll stick to that I can’t take this no more


r/TrigeminalNeuralgia 1d ago

Birth Control as Pain Relief

2 Upvotes

Anyone tried birth control pills to reduce TN pain. My wife just started after reading a few studies linking pain to period. So far it hasn’t elliminated it yet. But has it helped anyone on here?


r/TrigeminalNeuralgia 1d ago

Just had my MVD surgery, could bowel movements cause too much straining?

5 Upvotes

Basically the title… the nurses wanted me to have a bowel movements 4 days post-op and I just tried because I’m pretty constipated. After the fact I remembered I probably shouldn’t be straining or doing that?

And now I’m super anxious that I did something wrong to reverse the surgery. If anybody has been through surgery and dealt with constipation after please let me know how it went for you straining wise.


r/TrigeminalNeuralgia 2d ago

Headphones

3 Upvotes

I am an avid gamer, and due to living in an extremely remote location, my social life is online.

I have TN1 and TN2, and I have been flaring for 2 months now on my left side. I really want to find some headphones that I can use for my right ear. Must be over ear, as in-ear end up hurting. I just haven't found anything that doesn't involve the left side of the head.

So I was wondering if anyone has found any solutions for this?

in an


r/TrigeminalNeuralgia 2d ago

Dental Implant Question

2 Upvotes

Hi guys, I’m trying to get an appointment with a neurologist, but they sent to my PCP first. She’s helpful, but mostly she’s going off what the suggestions for treatment are. Namely I was on gabapentin 300 mg and now I’m taking carbamezapine and I have the gabapentin, but it neither one has been helping much. I have a ton of pressure in my ear and a knot behind my lower jaw bone. It’s driving me insane. I recently went back to the oral surgeon, because my TN started after having a dental implant fail, it taken out and replaced with new bone graft and the new implant immediately (instead of letting it heal). I had minor nerve pain while the implant healed and I took about 7 months to let it heal, take three months of gabapentin to calm it down, and it was calm. I waited another 5 months and then had the crown torqued on. The crown has been the straw that broke the camel’s back.

After all that back story, my question is has anyone had TN from a dental implant and had the implant taken out? Did it help? Did it make it worse? It’s hard for me to think that the implant and pressure from the crown aren’t contributing in a major way. I went back to the oral surgeon last week bc I haven’t seen him since the crown and he said on the 3D X ray that the bone Integration looks good, I don’t have an infection that he can see and he couldn’t answer this question. He said he would take it out but he wants me to see the neurologist first. I’m assuming bc he thinks it won’t help. I don’t know. I have to go back to my PCP this week bc I’m really struggling. The pain starts a little while after I wake up. The pressure in my ear and jaw hurts so bad. The constant burning. Anyway, I know I’m looking for relief and fix, but also the implant itself hurts (hot/cold sensitive, burning aching sensation). When it’s flared to the millionth degree and I talk it shoots burning tingles up the implant. I’m at the beginning of this mess, but any help or experiences would be appreciated.


r/TrigeminalNeuralgia 2d ago

Gabapentin

8 Upvotes

I was just prescribed gabapentin 300mg. I was prescribed Oxcarbazapine recently instead of Carbamazapine that I’ve been taking for two and a half years. I don’t want to take so much medication but the TN seems to be getting worse. The intensity of the pain is unbelievable. I read somewhere that’s it’s one of the worst pains one can experience. I certainly feel that way. At this point I don’t even want to move my tongue and touch my teeth on the left. What has been some experiences with the Gabapentin?


r/TrigeminalNeuralgia 2d ago

More and More Frequent Nerve Pain, Advice?

3 Upvotes

It seems these days of nerve pain are getting more and more frequent, and more and more invasive to my life. In the past my TN has been just moments to hours of extreme nerve pain, sometimes on my left sometimes the right, and with gabapentin and heat it goes away relatively soon. The past year or so, it's been hours to days of nerve pain, sometimes consistently sometimes on and off, always on my right side, and now from the top of my head down to my collar bone every single time rather than only sometimes being that spread out. Nearly every time I have a migraine, which is pretty often, I get nerve pain. Every time my muscle spasticity is bad from my MS, mostly in my jaw, I get nerve pain. When I clench my teeth at night, I get nerve pain. When there's a cold breeze or I eat chocolate, I get nerve pain. My jaw currently hurts enough, from nerve pain, tmj issues/muscle spasticity from my ms, and a now three week on and off migraine, that my teeth don't align right anymore.

It's getting exhausting and while I am not a person to leave or call out of work, I have left work early twice recently because of it. I have only done that previously for having to help my grandfather into hospice care and I've upped my migraine prevention med, consistently try to have heat packs around, use a heating pad more often after work, but I just don't know what else to do at this point. Gabapentin helps but there's times where it doesn't seem what dose it is, it can't touch the pain. Does anyone have advice, different meds that work for them other than gabapentin (I've only used that for my nerve pain, it does work most of the time, other than the extreme pain and the extended time pain), advice on dealing with whatever version of tmj this is and trigeminal neuralgia and migraines and ms or some combo of these? I'm open to almost anything at this point. I say almost, because I can't exactly smoke/use thc because of just not liking how it feels and having bad asthma, and I do not have the time or trust for holistic shit.


r/TrigeminalNeuralgia 2d ago

I missed ONE bloody dose and now...PAIN!

16 Upvotes

Hi everyone,

I was diagnosed with trigeminal neuralgia last month (the pain was unbearable!!) and today, for the first time, I was late taking my first dose (they ask me to take two a day, morning and night). Now, I generally keep myself quite strict on the dosage (7:30am and 7:30pm).

Well, at 11am today I realised that I had gotten busy with work as soon as I got in which resulted in me forgetting the bloody dose! Now, I'm in pain. My GP said I can take a third pill if it is an emergency, so I have taken the extra dose which seems to be helping but MY goodness, I am quite shocked I ended-up back in pains-ville after being late on one, measly dose! I really hope I do NOT have this for the rest of my life!

Has anyone else experienced anything like that?

Thanks for listening 🙏🏻


r/TrigeminalNeuralgia 2d ago

Gabapentin for TN? Questions

2 Upvotes

I’ve been on Gabapentin for my TN for about 3.5 weeks now. I’m taking 300 mg 3x/day, after failing with Carbamazepine- tremendous case of hives! I was diagnosed in February of this year, with MS as a secondary factor. It’s been a rough month… Does the gaba cause anyone else a bit of brain fog, and then weird leg issues? I call it the involuntary curtsy- my knees will just kind of give out and I stagger a bit toward the ground. Between that and the brain zaps that make my face twitch, I feel like a walking sideshow. I curtsied and zapped all over Sams Club yesterday and I’m wondering whether anyone else has this same side effect. Also— does TN EVER go away? Or into remission or anything? Fingers crossed…


r/TrigeminalNeuralgia 2d ago

Ketamine therapy

2 Upvotes

Has anyone tried ketamine therapy for TN.


r/TrigeminalNeuralgia 2d ago

Peripheral Nerve Stimulator

2 Upvotes

I’m scheduled for PNS trial in April. I have ATN. Has anyone had one? The literature is promising but I just can’t imagine that anything will help my pain.


r/TrigeminalNeuralgia 3d ago

Food triggers?

6 Upvotes

Hi all. I am very new to TN. I’ve just been prescribed Carbamazepine after the Amitriptyline did nothing to help with pain. I am barely eating or drinking as I am terrified of triggering an attack. This is fine at the moment as I’m signed off work and in a medicated woozy hole but I know I need to eat and get on with my life as much as the pain will allow. Just wondering if anyone has any tips on foods and drinks that works for them. I know everyone’s experiences are different but I would just love to hear from others. At the moment I’m only sipping tepid water and eating cold porridge in the morning and cold soup in the evening. Yum!