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

Deep sympathy.
Hospital dentist told me I probably have non-painful neuralgia as I have a numb sensation across my face. I wasn't there for that though he was just investigating a potential filling under my gun line for my own dentist.
It doesn't hurt but I am constantly aware of it and some days it drives me slightly mad.

Thank you, I feel the same, the medication is definitely helping with the pain which is incredible but I still have really odd sensations like loose teeth. Still to see specialists but for now it feels like it’s half a mental battle to accept it. I hope yours is mainly manageable, it’s such a frustrating thing.

I have TN and carbomazepine is the only med that works for me. That or surgery. Speak to your GP snd get a referral to Neurology asap. I would recommend Nic Patel in Bristol. Brilliant man and knows his stuff. Good luck 🤞

Thank you. I’m waiting on a referral to both neurology and the dental hospital coming through and hope they won’t be too far off and will see where I go from there, the carbamazepine definitely is good and still working up the dosage but I’m open to anything.

You may need to up the dose until you get to a level of no pain. Mine fluctuates. But you can work with your GP on this. I hope it all works out for you.

Essentially the meds are the thing to take - and it's not a quick fix. The nerves are 'sensitised' (and often no cause found - that's ok! ) and you need the meds to retrain them. Nerves last a long time so it takes a while - 6 months.
Lots of meds to try but don't give up on them unless you've tried for a month at least.
MRI trigeminal just to check blood vessel proximity to nerves in case this is a cause.

Do make sure it's not the teeth though. The dental hospital should help with that. Oral med will be fine if that's already in the pipeline. Doesn't need to be neurology per se.

it feels like it’s half a mental battle to accept it

Have you considered hypnotherapy? It can be very effective for pain management.

Yes, I’m 3 weeks in and the GP has said this isn’t a quick fix, first 1.5 weeks nothing really but now it’s slowly taking effect so I have hope. The GP has been an excellent support and I’m glad I have the two referrals. I do have some dental issues and some teeth with short roots from bad orthodontic treatment so I’m ruling nothing out (I would prefer if there was a dental cause, even if it was an expensive fix!). Will see what transpires and just adjusting and pleased to hear people have success with the meds. The GP said sometimes there’s a cause sometimes there isn’t but there isn’t anyone he’s worked with who doesn’t have it under control one way or another, I was really panicking initially.

Yes - I’d like to settle on the meds first and then I really would be open to trying different things! I know people who have had success with hypnotherapy for various issues.

Earlier this year I worked with someone who'd had 'burning mouth syndrome' for 4 years (and no, I'd never heard of it either!). It died down after one session and they were able to manage it themselves after three. But it's important to have finished any medical treatment first.

I have TN on my right side for about 20 years. I started on carbamazepine initially and it worked for a while.

When it stopped being effective, my GP moved me to Neurontin (gabapentin) which keeps it to a manageable level.
I did have a radio frequency procedure a few years ago, but unfortunately it went wrong and left me with a numb area adjacent to the painful area- I have TN in maxillary branch of the trigeminal nerve and now have numbness and paresthesia on the mandibular branch 🤦‍♀️

I think the surgical procedures all seem to come with risks, sorry you’ve had this! Waiting to see specialist and will see what’s what from there but medication definitely the way forward for now.

They offered to do it again - I don’t think so!

I had what sounds like quite similar pain - a dull burning ache in the top front teeth on one side, spreading up beside my nose/into my sinuses, and feeling like my teeth were clicking. But no pain when the dentist tapped the teeth.
Dentist referred me to an oral pain clinic, who diagnosed me with burning mouth syndrome. I spoke to a clinical psychiatrist there - she explained what was happening biologically (basically neurons in the brain misfiring) and for me that understanding seemed to largely resolve the pain (the brain is a powerful thing!). So if they offer you any talking therapy I would definitely take it, or try to find some specialist therapy privately.
I’ve only had one very brief flare up since then (10+ years ago) so there is definitely hope for facial pain to improve or even resolve over time, although I appreciate TN is a different condition to burning mouth.
At the clinic they mentioned B vitamin deficiencies can be linked to facial pain so it may not hurt to ask for a blood test for those if you’ve not had one?

Yes! What you describe is EXACTLY what I’m feeling, the tooth clicking too. When the dentist taps the teeth I also get nothing and they seem to think the teeth must be dead. I do also get ‘nervy’ feelings when the top teeth bump the lower teeth and it burns just behind the front teeth. The dentist dismissed burning mouth as my tongue and cheeks feel fine but I’m just really desperate to see a specialist as I feel I may get better answers.
I am completely open to all avenues, at the moment. I did also have crawling sensations on my cheek and behind my eye and they seemed to have resolved since starting the carbamazepine but the ache and sensations are not clearing yet. It’s good to hear a positive outcome, thank you, and I’ll ask more about this when I get to see the dental hospital.