Trigeminal neuralgia- anyone know it have it?

[TheMightyMing]

I started at weekend with horrific facial pain which I put down to a dodgy tooth. The dentist treated it yesterday but said on x ray and exam that it looked fine, and even removed the filling and checked underneath. I'm on anti biotics and double dose painkillers, but the pain has returned worse than ever. It comes in waves and it's in my face jaw and head, even my arms a bit numb. It's absolutely unbearable.

Having googled my symptoms, it sounds exactly like the above. The description also references a link to ms, which worries me as I had a severe visual disturbance last Tuesday and was diagnosed with a bout of optic neuritis , albeit 26 years ago now with no reoccurance since.

I'm not being dramatic when I say the pain is worth than child birth. If anyone knows anything about it , I'd be very interested and grateful.

TN can come and go. For some people, they have periods of attacks and then periods of remission. For others, TN only hits with particular triggers. Mine is just there. Every day. Worse if I miss a dose of my gabapentin and worse in the cold weather. I have tooth ache/ear ache/ jaw ache every day. And feelings that someone is touching my face or that my face is twitching.

It's important to get onto meds for TN asap as they take time to build up in your system and you have to start on a low dose and work your way up to one that keeps your symptoms at bay. I once asked my GP how long I should carry on taking my gaba for if I felt I had gone into remission. "Oh, ages" he replied as it has a nasty habit of coming back and when it does, if you haven't got the right level of pain relief in your system, then you are starting from scratch again.

It is always possible that there was something going on with the tooth they drilled and that has now cracked and that was aggravating the nerve. See if you get any symptoms after getting the tooth filled. Personally, if there's anything along the path of the nerve then it triggers my pain. So a normal spot on my face (thanks contraceptive pill!) will mean that my face is super sensitive until it's gone.

Above all, don't let the dentist plough ahead with treatment after treatment on your teeth if what they are doing isn't helping and you suspect TN. I had a tooth filled, then root canal, then extracted. When that didn't help they thought it was dry socket and were confused when I didn't have it. So they drilled and filled the neighbouring tooth. I really think that if I didn't spot that things were way off (while in massive pain while at the same time being numb from a dental injection) that more and more treatment would have followed and I would have fewer teeth in my head!

I also suffered with this and had a few weeks where it was pretty bad. I was given strong anti inflammatorys which relieved itquite quickly and there had been no return in three years. I an concerned to read that flare ups are common.

For me the pain related to changes in temperature to the extent that I no longer exercise as I can't get to hot.

Still listening ! All great advice thanks so much xxx

I find exercise triggers mine too. For me it's because I then sweat and it cools my skin, which makes my face cold and then gives me my pain. Luckily, the anit epilepsy meds keep the pain dampened down so it's only irritating and not too bad.

Mind you, what I consider irritating and liveable with is pain I'd have gone running to the GP with 3 years ago, before my diagnosis.

Anti inflammatories don't usually work, so perhaps they worked on something that was aggravating your nerve and your pain won't return, rememberthetime. (Hopes)

I've read that you can be lucky and have periods of remission. My GP told me I wouldn't have this for long. 2 and a half years and counting..... My friend has been in remission for 2 years though (lucky cow!). I've read that it can come and go and, most worryingly for me, that the medications can become less effective over time. My gaba works brilliantly really, as far as I'm concerned and I'm somewhat scared that at some point it will stop working and I will be in full pain again.