Atypical trigeminal neuralgia - how do you manage the condition?

[JenSCsunny]

Hello - I’ve been reading other threads on this and wondered if anyone is out there/still active who can comment.
A couple of months ago i felt a tooth move - it seemed to ‘click’ back and forth and then settled in what to me, feels like a different position. From there i had lots of weird symptoms - strong burning over my front tooth, aching over the tooth that moved and tingling around my eye socket/scalp. All on the left side. The dentist did some prep for root work and packed the affected teeth but the endodontist said due to short roots on some teeth and the treatment to prep not fixing the pain she was unwilling to do full root treatment. It was referred to the dental hospital who have asked my dentist to do a few more tests and they said they suspect I have trigeminal neuralgia and after these final tests I should see the hospital. I am seeing the GP today, i have been taking amitryptaline which helps but he said we could discuss other options.
basically, I currently find it hard to focus, the burn keeps returning around the front tooth, my bite feels like it doesn’t align, my face feels tingly around the eye socket and I am really terrified for what this all might mean with a young family.
has anyone else had this and what happened? Did you find a drug regime that helped you carry on?
a lot of online information is either geared at type 1 TN or people saying it destroyed their life and I’m really scared.

I also haven’t had blood tests as of yet so will ask the GP.

You NEED to call Helios Homeopathy and they will give you something for your nerves. Do it immediately

It does sound very similar - I also got the “nervy” pain when teeth bumped together! No pain on tapping but after a while I realised I could provoke the pain by pressing or rubbing a specific spot just below and to the side of my nose on the affected side - assume that’s where the nerve runs. I was a bit surprised by the burning mouth diagnosis tbh as it was more my teeth/face than my mouth. But perhaps it’s based more on severity - mine was painful enough to be uncomfortable and distracting but not unbearable and would come and go through the day.
Had you been stressed or anxious at all in the run up to the pain starting? I was stressed at work and also had some cosmetic issues with my front teeth that I was self conscious of, which I suspect contributed.
it was explained to me as your brain keeps a map of all the pain receptors in your body. Normally, a signal is received from injury/inflammation in the body and fires a corresponding neuron in the brain - that’s what creates the sensation of pain. Sometimes (often because of stress), the neurons in the brain get trigger happy and fire off without receiving a signal from the body - creating the sensation of pain without any actual damage.
Your face has a huge number of receptors compared to most of your body so that’s the most likely place for that type of pain to show up.

I wasn’t stressed before it all started but I’ve been really stressed since! I also have a spot exactly where you describe that if you touch it, it feels so weird and nervy but the left side feels odd and ‘numb’ although it isn’t as I can feel it all. Then burning pain for me really affects my work and I’ve been signed off as I talk all day in appointments. I’m hoping to get back soon though if medication can get on top of that, just for now talking seems to really fire it up. I can’t just stay silent forever though! This is really interesting to hear and also that it went into remission, I really have hope for getting on top of it and also a more firm diagnosis. I’m really grateful to the GP and just hope waits are not too long but the reassurance of a diagnosis and explanation clearly can have a huge effect!

Ive had TN for more than 13 years.
Started on carbamazepine but couldn't tolerate the side effects when the dose was raised. Switched to gabapentin. It took a while to get up to an effective dose but it is 95% controlled now. I get flare ups if im stressed or not well

Exercise is a trigger and gives me a freezing cold face on one side.

Ask about an MRI when you see neurology. I had one and it found the case for mine. The nerve is compressed by an artery. So that makes sense that raising my heart rate with exercise aggravates the nerve more.

Nothing over the counter will work. Def not anything like oragel. At the start they thought mine was dental. On one occasion I was completely numb from a local gum injection and STILL in agony with the TN pain.

This is really interesting as I’ve been floored until starting carbamazepine and haven’t been running but on a few long/fast walks recently I get freeze face. It runs from my front tooth up the side of my nose and also feels like it’s cold inside the nostril. As that subsides it really burns. I’ve ordered buffs that cover my face as walking in the cold seems to have a similar effect. At the moment 800g of carbamazepine is giving me decent-ish relief but as each dose wears off the burn starts, it’s frustrating. Once out of frustration I took 400g at once and the relief was great but I was wired to the moon for about 3hrs.
Were you offered any kind of surgical fix? I guess it probably would come with quite big risks involving an artery and nerve? 95% relief is good though. It’s hard as all the medication that works takes time/adjusting, no quick solution and as you say, nothing OTC touches it at all. I had prep for dental root treatment (which they ultimately didn’t do fully and referred to dental hosp instead) and they numbed my mouth and the burn wasn’t there but the tingling and the sensation that my teeth were falling out went completely out of control I was touching them constantly saying my teeth are falling out and that’s when they first said this isn’t normal at all.

It’s so good to hear you have things manageable, I’ve been referred for talking therapy too and I think it will all help. I had also been so hopeful of another baby but not on these drugs. Not the nicest condition!!!

Carbamazepine had me falling sleep in public places and while driving. It left me unable to walk in a straight line. And it gave me uncontrollable hand twitches which meant writing and typing were impossible. It left me grasping for words and not able to spell properly when writing. Not compatible with my job as a teacher!
Crazy how differently people can respond to the same medications.

There is a surgical fix where they insert a Teflon pad between the artery and the nerve.
But it can affect balance and hearing if it doesnt go 100% to plan.

I have one friend who had great results with it. Then it stopped working as the site of irritation on the nerve can shift. She had it redone.

And another acquaintance who went through an ordeal. Heart attack on the table. Contracted meningitis afterwards. Then still went through the op a second time as the meds didn't work for him.

They wont consider the op for me whilst the meds work. Which is fine. But I really wish I didnt have to take them and I'm really poor at remembering all 3 doses.

Oh my goodness I’m glad both those people are ok, the second one a nightmare! I guess I’ll need to see what transpires, those are quite daunting risks.
It’s good your meds work, but agreed it’s a pain, I’m on 4 doses a day. The relief is hit and miss and still have bad days so will just need to see and the freeze/burn face is so draining.