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.

Hey. I had this after a wisdom tooth was removed, they prescribed me carbomezapine? Not sure how to spell it. It’s epilepsy meds, but it worked and is switched the flashes of pain off. Stopped taking it after a year or two and it never came back. Seriously painful! I feel for you.

Have you tried a Cefaly device? They can help apparently.

I was just prescribed this today and have started taking it tonight. The doctor said might be a couple of days till full effects are felt then can up the dose if needed. That’s amazing to hear that you came off meds and it was ok! The pain is horrible, the burning sensation has been really grinding me down. I also was referred to neurology to check if there is a cause and I’m pleased about that although imagine the wait might be a while. Thank you for replying!

I hadn’t heard of these, I’ll look into it! Willing to try anything at this stage, it feels like it could be trial and error.

Have you tried orajel? It has numbing agent in it for pain x

I haven’t tried it - I don’t know if it would reach to nerves? but will give anything a go!

Dentist here. Orajel won’t touch it sadly.
carbamazepine or amytriptaline are what you need to manage this. You need to get your GP or dentist to refer you to oral medicine to discuss and diagnose.

Thank you - I started the carbamazepine today and have a referral to the dental hospital and neurology so even if it’s a wait I feel like I can manage in the interim if the meds work. The GP was very supportive which was good!

Yes my husband says the Mynd version helps his a bit but Cefaly has a lot more evidence. It’s just out of our price range or we’d have got it.

It's fabulous stuff. Rub it on the gums of where it hurts and it numbs it for a good 2/3hrs. It's fabulous. Only £3 something xx