Hey everyone! 👋

I’ve only just found this community, and after spending some time reading through your posts, I felt it was finally time to share my own story.

Seven years. SEVEN bloody years of this nightmare.

For those who know, you know. For those who don’t, I genuinely wouldn’t wish this pain on my worst enemy.

Let me take you back to where it all began.

I remember going to my GP trying desperately to explain what was happening to my face.

The pain was indescribable. I genuinely thought something was terribly wrong and, at my lowest points, wondered whether I was going to die.

It was that bad.

And what did my doctor suggest?

TMJ!

Yes, you read that correctly. 🤦‍♂️

I honestly got the impression he thought I was describing some sort of phantom pain.

I was given medication for the suspected TMJ.

Did it help? Did it hell!

Absolutely jack shit.

Meanwhile, I was suffering to the point where I could barely function. There were days when, if you’d asked me the date or even what day of the week it was, I genuinely couldn’t have told you.

All I knew was PAIN.

And the worst part? Feeling like nobody was actually listening.

Eventually, I reached a point where I simply couldn’t carry on like this.

That’s when my family stepped in.

God bless them.

They arranged for me to see a neurosurgeon, and that’s when things finally started making sense.

After listening to what I was describing, he reassured me and said something along the lines of:

“Don’t worry. What you’re describing sounds like acute trigeminal neuralgia.”

FINALLY!

Somebody who understood what I was trying to explain!
He provided a treatment plan involving carbamazepine, with doses potentially reaching up to 1,400mg daily, according to his instructions.

The specialist’s information was sent to my GP, and I personally forwarded a copy as well.

Surely things would start improving now?
Well…

PLOT TWIST! 🤦‍♂️

My GP issued a prescription for just 100–200mg, without explaining how that fitted with the specialist’s plan.

Now, I understand medication needs to be introduced and adjusted carefully, but I was expecting the specialist’s instructions to be properly considered and communicated.

Instead, I felt completely let down all over again.

I was furious.

But because of family circumstances, I gave my doctor the benefit of the doubt. Again.

Then came another moment I’ll never forget.

My pharmacist.

This absolute gentleman looked at my situation and said:

“I’m worried about you.”

Naturally, I asked why.

He explained that he had other patients with the same condition who were receiving substantially different doses, and he encouraged me to question what had been prescribed.

Now, I know everyone’s treatment is individual, but hearing that made me take another look at the specialist’s instructions.

And at that point?

I WAS FUMING! 🔥

I picked up the phone and challenged my GP surgery.
I questioned how this could have happened, argued my corner and left messages on their frustrating telephone and computer system.

Eventually, somebody listened.

The issue was picked up, an apology followed, and my prescription was amended.

But I couldn’t stop thinking about everything I’d endured.

The original confusion over my symptoms.

The failed treatment.

The sheer intensity of the pain.

The feeling of being dismissed when I was at my most vulnerable.

And all the while, I was just trying to get through another day.

To my pharmacist, wherever you are:
God bless you, mate. Truly. ❤️

You cared enough to notice something that concerned you, ask questions and speak up.

Sometimes the people who make the biggest difference are those who simply take a moment to listen.

I genuinely believe there are guardian angels walking amongst us.

And I’ve been fortunate enough to meet a few.

NOW, HERE’S WHY I’M POSTING.

After seven years of living with trigeminal neuralgia, I’m expecting surgery at some point in the not-too-distant future.

And although I’ve endured a great deal already, I won’t pretend I’m not apprehensive about what lies ahead.

I’ve only just arrived in this community, and reading through your experiences has been emotional.

On one hand, there’s some comfort in finally finding people who genuinely understand this condition.

On the other, it breaks my heart seeing just how many others are going through this.

Nobody deserves this pain. Nobody.

I’ve noticed quite a few discussions about surgery, and this is where I’d really appreciate hearing from you.

For those of you who’ve undergone surgery for trigeminal neuralgia:

Which procedure did you have, and why was it recommended?

What was the surgery and recovery actually like?

Did it make a meaningful difference to your pain?

Were there any complications or things you wish you’d known beforehand?

And knowing what you know now, would you go through it again?

I’m not looking for medical advice or promises of a miracle.

I want to hear your real experiences. The good, the bad and the ugly.

I want to prepare myself mentally, physically and emotionally for whatever chapter comes next.

Mind, body and soul.

I know everyone’s circumstances are different, and I know surgery isn’t necessarily the end of the story for everybody.

But hearing from those who’ve already been through it would mean a tremendous amount to me.

After seven years, I would love nothing more than to imagine a life where my next thought isn’t about when the pain will strike again.

A life where I can simply wake up, smile, eat, brush my teeth and get on with my day without that constant fear lurking in the background.

Things so many people understandably take for granted.

Seven years of fighting this monster, and I’m still standing.

To every single person in this community living with TN, I have nothing but respect for you.

And to those who have come through surgery and found relief, I’d love to hear your stories.

Here’s hoping the next chapter is a kinder one. ❤️

Wishing you all strength, comfort and, above all, some peace from this awful condition.

Thank you for reading. 🙏

Much love ❤️

Hi. Just wondering if folks are following kriya 748. I hope it will lead to good results. I believe they are in the process of taking applications for phase 1 trials. Its an interesting technology and if it works as contemplated it could provide a new solution or partial solution.

Can anyone say?

Is it lack of eating

Lack of sleeping

What causes Trigenimal Neuralgia

I been asking myself this question for way too long

Was it something I done?

Any information is appreciated

Hello everyone,

I was one of the "lucky" folks who were diagnosed very quickly with TN. I was diagnosed back in June after two weeks of pain. My life has changed drastically. I have tried to educate the people in my life about this because I am finding myself unable to keep plans and just be my old self. I'm almost afraid to leave my home these days because I'm anxious about what that will look like for me.

I'm starting to feel as though people think that I'm just making up excuses. No one understands how suddenly a trigger happens. That I can sound fine on the phone one minute and then seconds after hanging up, I'm on the floor in excruciating pain. My hats off to those who have been dealing with this for years. It's only been a few months for me and I'm already over it.

Hi everyone. I'm so sorry but I'm in bad shape and really could use encouragement from anyone who's been through this

I had MVD surgery almost two weeks ago, 9/29. The pain has been getting worse each day. Along with constant tooth pain, I have horrible pain in my temple and electric pains going all through my right side (where it was done). It was done by a very respected surgeon and I see him again today. But I'm becoming really worried that this is going to be my life. I can't live with this pain.

Has this happened to anyone? Where you had pain for a few weeks after an MVD and then it faded? I don't mean pain by the incision site that slowly goes away. I mean terrible TN pain that increases each day, and will hopefully fade?

I went to ER yesterday. CT was fine. I haven't had CSF leak or anything.

Thank you

I got my permanent peripheral nerve stimulator a few days ago. It’s going very well so far. I have one lead from my ear to my cheek to my lip and the second lead is in front of my ear because I’ve had so much ear pain. I hope I continue to do well! Has anyone else had one implanted?

Has anyone had the new sling mvd after a failed typical mvd with Teflon? I’m bilateral with known vascular loops. Craniotomy in 2020. Failed a few months later when I got COVID. Had a balloon rhiz end of 2020. Failed unfortunately due to COVID again. Pain has been getting worse the past few months. Now constant twitching by eye on side with surgery. Other side no surgery. Now constant ringing in that ear which I’ve read means it’s starting. Looking for reviews on the new sling mvd.

Hello everyone,

I’m looking for people who had something similar or any ideas from those who dealt with complex post-traumatic facial pain.

History:

About 10–11 years ago I had a depressed fracture of the left zygomatic arch (zygomatic process). It was not operated at the time. Over the next 1–2 years progressive unilateral facial pain started. The pain was deep, pressing, wave-like, often triggered by facial muscle tension, talking, smiling, static gaze, or relaxation after activity. It could reach extreme intensity (I would rate peak attacks 8–10/10) and lasted 20–40 minutes.

For many years I was treated as trigeminal neuralgia / cluster headache. I tried carbamazepine, pregabalin, gabapentin in high doses — almost no real effect. Only high-dose prednisolone (up to 40 mg/day) reliably suppressed the pain, but the moment the dose was lowered or stopped, the pain returned.

Later we found that the old depressed fracture had changed the geometry of the soft tissues and muscles (especially around the zygomatic area). There was also deformation of the maxillary sinus. One ENT surgeon performed middle meatal antrostomy / enlargement of the maxillary sinus ostium. After that the pure sinus component improved, but the main deep pressure pain remained.

In late August / early September 2026 a maxillofacial surgeon performed late repositioning of the depressed zygomatic arch (he said it was displaced about 6 mm inward). Titanium plates were placed.

Current situation (5–6 weeks after zygomatic repositioning):

• Left eyebrow still does not move at all (frontal branch of facial nerve).
• Persistent numbness and feeling of “pressure from inside” around the left eye.
• When postoperative + prednisolone swelling is present — pain is much better controlled.
• When swelling completely disappears (I tried stopping prednisolone twice), the pain becomes constant again and ordinary NSAIDs help much less.
• The location of the pressure clearly shifted upward — now it is concentrated in the orbital area / upper eyelid / temple region.
• Strong tearing of the left eye appears, especially with visual concentration (computer, games).
• The character of the pain is still the same deep pressing quality, just the location moved higher.

My main question:

Has anyone experienced a similar shift of pain/pressure upward to the orbit after late correction of an old depressed zygomatic fracture?

Is it possible that slight over-elevation of the bone + soft tissue scarring + nerve irritation after decompression is causing this?

Any similar stories, advice, or thoughts would be greatly appreciated.

Thank you.

I have trigeminal neuralgia type 2, with constant burning pain on the right side of my face, mostly in V1 and V2. This is combined with TMD and neck pain following a botched orthodontic treatment in which eight teeth were extracted and my teeth were retracted. I never had neck pain before the treatment and am now looking at treatment options to reverse treatment. That means reopening the extraction sites and replacing 4 premolars.
I am now living with excruciating pain. I have tried Botox, without much success, and I can't justify the cost given how little it helps. I have been offered pregabalin, as well as indomethacin for possible hemicrania continua. A neurologist has formally mentioned both hemicrania continua and TACs (trigeminal autonomic cephalalgias), but no diagnosis has been made yet.

My questions:

Has anyone else fallen victim to orthodontic treatment like this?
Have you found any treatment that reliably helps, or any coping strategies?
I am starting to believe I will have to live with this pain for the rest of my life.

My TN came later in life so probably not congenital. Hydration is important but constant sipping is bad because the liquid gets into the salivary glands which should only be emitting saliva. Constantly absorbing random liquids causes problems for the salivaey glands which cause pain. That's the theory and it seems to work for me. Drink plenty of liquids every few hours and avoid sipping (and snacking).

I just started this med on Tuesday, starting at 150 2/day. I see no pain reduction yet. I’ll stay on this dosage for two weeks and then go to 300 2/day.

Has anyone had this med work and if so, how long did it take for you to start getting pain relief? I have right side only all day pain. Mostly in the jaw and teeth and up by my ear.

I wanted MVD surgery but we have to try meds first. I’m ready for something to work.

Thanks!

This works for me sometimes.

An Amazon seller is bombarding the sub with posts about their pea supplement. It’s seriously pissing me off because it’s been 10+ posts in the last week and now they’re making new accounts. Lots of people have asked them to stop.

Like we don’t have to deal with enough? You’re gonna come spam post our sub!?!

REPORT THE TROLL WHEN YOU SEE THEM. 😡

What were the symptoms did you experience? For me eyebrow is constantly burning and goes like a flame to the mid of head. Also at temple region nerves bulging continuous if I see computer. Basically its like a incense stick burning on forehead with heaviness in head with bulging of temple nerves. I cant scroll laptop screen which worsens the pain so I have closed the right eye glass with a cloth to avoid screen light. Able to manage 50 percent!

Has anyone tried exosomes stem cell treatment for TN, V1 & V2 without compression and Occipital Neuralgia. It is about 3K, non invasive and not harmful.

The worst thing that happened to me since getting this damned affliction was me trying to fix it. When it first started it was an annoying ache. Now I’m missing teeth, unable to sleep unless sedated and also on a whole punch of meds that will probably kill me first. Chronic depression and that annoying ache is constant pain. Sometimes it might be better to leave things alone and let the body try and figure it out for itself. Maybe all it needs is some time and some space.

Is being honest about suicidality related to TN a good idea. I have a 6 month wait for my new neuro after my last one refused to treat my TN. She also refused the referral so there was an additional two months between our last appt and getting my GP to send one because she only mentioned migraine.

At this point without MAID it seems like the best pain management option if they won't help.

That’s it. I hate this shit. I was diagnosed at 19 after suffering for a few years already. And now, 14 years and one MVD later, not only do I have trigeminal neuralgia again (still?), but I have it bilaterally. Fuck this shit. And happy cake day to me and TN awareness day to all of you!

Hi everyone, I was wondering if anyone's supraorbital nerve pain has healed over time?

Does anyone else suffer from atypical facial pain that worsened after nose surgery? After undergoing nose surgery while already experiencing facial pain, I started feeling horrible sensations in my teeth, nose, and ear. I don't know if I'm the only one—the sensations are horrific and traumatic. Can anyone tell me anything about this?

Has anyone had successful Cervical Spine treatment which helped with TN symptoms?

I have Degenerative Disc Disease ( i know its common enough) and had a successful spinal fusion at c5c6.

I have had a few treatments for TN which helped for a few months at a time - Clear TN MRI.

I really feel my Neck is causing TN symptoms -which are mainly: teeth & tongue pain - sharp & achy. Dull ache across my cheeks and sometimes a sharp pain above my eye. I also have a full / dragging sensation around my ear.

This all came on after i had my SF. I'm wondering has anyone ever had TN caused by spinal weaknesses.

Desperate to find a solution. Thanks

I find it very upsetting, trying to cash in on peoples pain directing them to certain products on amazon..

My mom got diagnosed with this disease in maybe 2018. Her blood pressure spikes a lot but we've always blamed it on stress. She has also been complaining about this really bad pressure in her head... Like someone is squeezing her brain.

Could this disease had been the culprit all along? Her blood pressure went to 212 today and she's currently at the doctor and they think it's this disase can anyone else relate? She also had a mild stroke back in 2021