Any Trigeminal neuralgia sufferers out there?

[TheWalkingTalkingRed]

Sorry, I know I should have posted in General Health but thought they'd be more traffic on here!
Newly diagnosed and had never really heard of this until recently, I can honestly say I've never known a pain like it. I've suffered with acute sinusitis for years, and also saw a dentist regularly with tooth pain that turned out, well not to be tooth pain! Until finally seeing. GP recently who diagnosed me with this condition.

At its worst I would have done anything to take the pain away, and even now on meds that's I've just started, I'm in constant state of anxiety over another attack.
I've been online and it's got some scary stories on there...

Is their anyone else whose living with this condition? You have my sympathy for a start!

@TheWalkingTalkingRed how are you now ?
Going through the same :( xxx

Hello OP here I am so sorry to hear you're going through the same when were you diagnosed? How are you feeling now?

If I am being pefectly honest I've not been good at all over the last few weeks sorry to say

I had a couple of small flare-ups in the usual place that the doctor put down to a sinus infection and not my TN and then stupidly got talked into an apparently absolutely necessary deep clean at the dentist 2 days before Christmas which I think made everything worse

Again dentist said the pain I was experiencing was sensitivity from the teeth and the sinus infection and didn't believe it was my TN either

So it's all been a bit frustrating
TN is very often often confused with dental or sinus pain

Muddled through Christmas and I'm coming through the other end though fingers crossed!

I've also been having terrible side effects from the antidepressants I've been put on so I've been pretty miserable anyway
Gosh aren't I a barrel of fun!

I can say on a positive side since my diagnosis in 2020 the flare ups have been mostly kept at bay which I'm incredibly grateful for

It's the most agonizing pain I have ever experienced so you have my every sympathy as it's difficult to talk about to people that have never gone through it

There is a Facebook group trigeminal neuralgia UK that you can join
I find I have to limit the X I go on there though as I can find it all a bit overwhelming but it can be a really good source of information

Best of luck feel free to DM me if you ever need to talk

I feel for you. I started getting TN in 2003 - initially thought it was because of tooth pain and suffered several root canals - I’m not proud of the fact I tried to kill myself - I tried all the different meds and in the end only morphine patches helped me. My saving grace was the TN organisation www.tna.org.uk/
I had several MRI scans that didn’t show up anything but then found information to ask for a THIN CUT MRI as this shows the veins and nerves much more. Sure enough I had a vein touching a nerve in my brain. I found a fab surgeon at Southampton Hospital and he performed a MVD operation on me in 2007. Touch wood I have been well since - not a day goes by though when I don’t think of it - I hope this helps to show that something can be done. Big hugs x