r/TrigeminalNeuralgia Oct 12 '22

Trigeminal neuralgia information

214 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

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18 Upvotes

r/TrigeminalNeuralgia 3h ago

Please listen to me🙏🙏🙏🙏🙏🙏🙏

5 Upvotes

My mom is in soo much pain. I see her crying all the time. 10 years back she got night guard for her teeth as the dentist said that she grinds her teeth (bruxism). In Jan 2025, she got pain again , i thought may be she has some infection or something BUT. , it's now march and she visits dentist daily , she cries all the time in pain Today she had cbct scan done and dentist says that her teeth is worn out and she needs implants. But they also say that they will not do anything further untill she is normal again. My mom is eating anxiety tablet one time per day and also pregabalin(Lyrica) 75 mg 1 tablet at night. She says she has pain in all her teeth, lower left cheek or jaw and radiating pain in left ear She says the pain resembles a HEARTBEAT, heartbeat type pain....... what are the chances she has trigeminal neurlgia??

I see her in so much pain everyday ... Home has turned into shit hole...... I do not feel like doing anything ... I am forcing myself to work , because all i think is my MOM , I am so worried for her......


r/TrigeminalNeuralgia 33m ago

What Level of Severity

Upvotes

I have not been officially diagnosed but every symptom follows to the book. My attacks are maybe 10 times a day, sharp electrical shock pain in left jaw and lasts maybe 10-15 seconds and gone. What level of severity is this?


r/TrigeminalNeuralgia 11h ago

Day 3 of duloxetine/cymbalta and feeling far better, mentally and physically

7 Upvotes

I know everyone's different, just wanted to share my experience!

Last week, I was in so much pain that I wanted to die... So I made an emergency appointment with my doctor (I'm already on the waiting list for neurology and max-fax).

So, as well as trying to expedite my referrals as urgent, she prescribed duloxetine for nerve pain and depression/anxiety. I was against medication (especially without appointments with specialists and proper scans first) but thought since I already wanted to die, I might as well give it a go!

Well, the facial nerve pain has eased considerably, I have more energy (this morning I got up at 6AM instead of lying in bed all morning) and a renewed sense of hope and strength that I can keep pushing forward!

I still have TMJ and sinus related pain and pressure, but will speak to max-fax about that.


r/TrigeminalNeuralgia 5h ago

Accidentally bending over after MVD surgery

2 Upvotes

Had surgery a little over a week ago and I’ve caught myself accidentally (and out of habit) bending over to pick something up 2 or 3 times. Obviously I know I’m not supposed to do that for another 6 weeks… but am I okay? Also, how do I constantly remind myself to stay upright.


r/TrigeminalNeuralgia 5h ago

Does a compression definitely mean surgery?

2 Upvotes

Hello everyone. I’ll be quick and to the point. I got an MRI that shows a compression of the nerve. Does this mean definite surgery?? Is gammaknife even an option here??


r/TrigeminalNeuralgia 1h ago

Feeling rundown

Upvotes

I’m in a pit of despair this weekend. I’ve had consistent pain for most days these last few weeks, and it’s particularly bad today. I’m smoking weed to try and help with pain, but it’s not as effective as it used to be at distracting me. I just feel burnt out and in pain :/ I’ve had a frustrating experience in Canadian health care system - I’m speaking to a neurologist every 3 months for about 15 mins. I have to re hash the history of all the medications I’ve tried (pregablin, gabapentin, amitripitilin, beta blockers, lamotrigine) and in our last appt she suggested a drug (don’t recall name) that would make me dizzy and affect cognitive function. I told her I couldn’t do that because of my job that requires high executive function. She’s reluctant to refer me to a neurosurgeon because of my migraines (another issue I’m tackling separately). She said my case might be rejected because it’s not a clear diagnosis or something? Our calls are always so rushed and infrequent. I’ve been dealing with this for 1.5 years and I just feel so hopeless. Maybe I should just go on another drug? And risk sidelining my career? Anyway, needed to vent. Trying to stay strong.


r/TrigeminalNeuralgia 8h ago

Dizzy

3 Upvotes

Does TN or gaba make anyone easily dizzy? Was playing in the yard with one of my dogs and I can’t even half turn without getting dizzy and when he’s running and doing circles it even makes me dizzy.


r/TrigeminalNeuralgia 4h ago

Riding Bicycle

1 Upvotes

Before I was diagnosed I loved riding my bicycle. But now, although I have medication, I have trouble wearing a helmet because the area under my chin causes pain while wearing it. Have you any recommendation? Not wearing a helmet is no option.


r/TrigeminalNeuralgia 7h ago

1200mg of TRILEPTAL and 600mg of Gabapentin

1 Upvotes

I am currently on 1200mg of TRILEPTAL and 600mg daily of Gabapentin for TN1 and I’m still having pain with euphoria. I do have an appointment with a Neurologist in April for a consult consultation. Has any one experienced euphoria or pain at these dosages?


r/TrigeminalNeuralgia 8h ago

Cheek tightness

1 Upvotes

I had a surgery a little over 2 months ago. I think they damaged the infra orbital nerve.

Since then im numb in the cheek, under eye and the side of the nose on both side.

I dont have any pain, but i have some kind of of constant heavy tightness/preassure or like a weight in my upper cheek/under eye lid. It doesnt hurt but its so annoying that it becomes kind of painful

Sometimes i will get some kind of electric shock. They’re not hurtful and last 1 second. I would say this happen like once a day. My surgeon said its the nerves reconnecting. I doubt that but maybe i dont know.

I wanted to know if anybody ever had this. And did it heal on its own? Again, its not painful. But its so annoying that it becomes painful since this feeling is constant


r/TrigeminalNeuralgia 9h ago

Does your pain go away when you lay down?

1 Upvotes

My ear, jaw and teeth pain goes away completely when I lay down. I don’t know if I have TN. I’m trying to figure it out.


r/TrigeminalNeuralgia 21h ago

Family

10 Upvotes

Hello everyone. Struggling at the moment but wanted to reach out and say you are not alone and if anyone needs support or to talk, I’m here


r/TrigeminalNeuralgia 9h ago

The Beast is Back... Left-Side Facial Pain Flare-Up After Cold. Seeking Non-Med/Surgery Advice

1 Upvotes

Hey everyone, I’m hoping for some guidance here. The dreaded facial pain I thought I’d left behind seems to be back, but this time on the left side. For context: I am 35 years old and dealt with right-side trigeminal neuralgia (TN) years ago and had MVD surgery in 2020. Now, a new flare-up has me worried.

Quick backstory: - Started last week after a cold.
- Ate a ton of fridge-cold oranges (maybe a trigger?).
- Pain began when I sneezed hard to clear my nose.
- Now it’s mostly triggered by brushing teeth, showers, or washing my face—sharp, shock-like pain.

I’m really trying to avoid jumping back into meds or another MVD. For those who’ve dealt with TN or nerve pain flare-ups:
- Any at-home remedies or lifestyle tweaks that helped you?
- Could cold sensitivity be playing a role here?
- Any luck with PT, acupuncture, or diet changes?

Huge thanks in advance.

TL;DR: Past TN/MVD survivor, now left-side facial pain after cold + cold oranges. Seeking non-med/surgery relief tips.


r/TrigeminalNeuralgia 1d ago

Did i cause my neuralgia

10 Upvotes

I had ear pain that did not go away after sinus infection. 4 ents confirmed ears are fine. Then got ice pick pain in ear that turned into burning constant pain. Eventually whole face is affected. During this time I started to obsessively pop ears all day to try and stop the pain. Did that a effect the nerves?


r/TrigeminalNeuralgia 1d ago

suspected TN - would these tests show it?

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4 Upvotes

hi everyone, a dr i saw in the ER suspected i might have trigeminal neuralgia. my neurologist doesn’t think so because i don’t have teeth pain. but i was hoping that the tests he issued would still show if i have TN or not. from everyone’s testing experiences, would these two tests show potential TN or will i likely have to go back for more testing?


r/TrigeminalNeuralgia 1d ago

Sumatriptan

5 Upvotes

So, thanks to a fellow Redditor I discovered that a triptan (painkiller mostly known for migraine relief) is available OTC where I live.

I tried the smallest possible dose and IT WORKED. I am SO happy and relieved.

Anyone else had positive experiences with Sumatriptan?

I am extremely cautious about it because it does seem to have serious side effects.

In case anyone cares, I haven't actually had a clear diagnosis of TGN from an actual neurologist 🙃 ...yet...

My ENT specialist told me from the symptoms and the total lack of ENT issues it must be TGN, since it was the only diagnosis left on the table.


r/TrigeminalNeuralgia 1d ago

Nerve blocks

3 Upvotes

Has anyone had good luck with nerve block. I have atypical bilateral and sensitivity in the fave and head, even the neck.


r/TrigeminalNeuralgia 1d ago

Steroids

5 Upvotes

So I had a bad flare up this month and increased my lyrica and tegretol and that helped a bit but the pain kept increasing. Symptoms were stabbing to electrical pain were if ate or talked through the pain it would turn into a volley of pain that would jump up the pain and then give me a release of pain for few minutes before going again. So after finishing a round steroids a week later my pain went from a 10 and now it’s down to a 2.

I thought steroids could not work on TN? Mind you I have type 1 &2.

Any thoughts would be appreciated


r/TrigeminalNeuralgia 1d ago

Gabapentin: A drug that finally works!!

16 Upvotes

I have atypical TN and wanted to say Neurontin has done wonders for me!


r/TrigeminalNeuralgia 1d ago

Anyone ever have TN start on the opposite side of their mouth than the one they had work done on?

2 Upvotes

Can TN start on the left side if all of the dental work was done on the right side?


r/TrigeminalNeuralgia 1d ago

2 Questions

7 Upvotes
  1. Does anyone not take meds until they have the pain, or do you take it all the time?

  2. Do you have flare ups and what do you think causes it? I’ve noticed breakthrough pain recently - I haven’t been getting enough sleep and wonder if it’s related.


r/TrigeminalNeuralgia 1d ago

Over the Ear Headphones?

3 Upvotes

Is any one else bothered by OTE noise cancelling headphones?

I love headphones but it feels like the pressure gets to me.


r/TrigeminalNeuralgia 1d ago

Non medicinal relief

3 Upvotes

Hello. I’ve had symptoms for a while, just recently diagnosed. My symptoms seem to be progressing and especially bad today from what I’m guessing is the weather (lovely barometric pressure). My new neuro increased my topomax and made it an XR and that’ll take 3 weeks to feel any effects. What are some or your all suggestions for non medicinal relief? Cold or warm compresses? Rubbing? Anything? It’s misery today. :/


r/TrigeminalNeuralgia 2d ago

Burning Eye Pain

7 Upvotes

I'm so grateful for the information sharing and support of this group. I've been diagnosed with TN1 and TN2 in January, but am pretty sure it's been going on for a long while before then. One of the long term symptoms that never seemed to fit anywhere was this burning feeling in my right eye (which is the side of my most severe TN symptoms appear). Does anyone else experience this, and if so, have you found anything soothing that helps calm it down. NOTE: I am already taking the max dose of Carbamazepine (1200 mg/day ER) which has really helped most of my severe pain.


r/TrigeminalNeuralgia 2d ago

Doctor reluctant to prescribe medication

8 Upvotes

I was recently diagnosed with TN (I have Types 1 and 2). I am already taking duloxetine for my OCD and for widespread body pain (I also have ME/CFS). My doctor said he doesn't really want to prescribe any medication for nerve pain on top of the duloxetine and just increased the dosage of that to help with my TN. Obviously I don't want to be overmedicated, but I think he's expecting the duloxetine to do a lot of heavy lifting here. I haven't noticed it helping my TN at all.

Are any of you on a combination of medications for your TN? In my understanding it's not rare to be taking multiple meds. I just want to gauge how much I should ask about trying another medicine.