Trigeminal neuralgia support

[Lushmetender]

There have been a few threads on this but opening a new one. Would like to speak with people with atypical face pain as I’m really struggling with it. Had something similar after birth of child and had it for 6 months and spontaneously went. 11 years on and I started with pain around 21 jan 2022. Went to drs who said I had Bell’s palsy. Had steroids but pain has slowly come back and got really bad on Saturday with shooting pains across face, in jaw and head. Dr thinks I have 2 things going on and the other nerves have come out to play. I have started taking amitriptyline and on day 2 of that. It has got rid of the shooting pain but now feel as though been hit on cheek and jaw. Having problems with chewing and swallowing was sore today. Did anyone still need to take
Other painkillers even when taking amitriptyline until you got the dosage correct. I have one tooth also that is more sensitive than the others so wondering if there is something there that is causing the irritation or is it simply the nerve fooling me into that thought? Going to dentist again tomorrow as I’d love to get to root cause. I think I also banged my cheek on boot door before Christmas but not sure if that is coincidence as pain didn’t start until a month later. Any positive stories out there! Not sure I can face this for rest of my dsys

I'm sorry. It's a horrible diagnosis. I've had episodes now for over 30 years which sounds dreadful but I have long periods of remission lasting many years so as you've already had a long period I hope it'll be the same for you. Mine also started soon after the birth of my first child.

Carbamazepine is the usual drug of choice. I don't take it as I find the side effects to be worse than my usual occasional attacks. Ordinary painkillers generally make no difference to nerve pain so if they work for you then you may have something else going on.

I find heat packs help me and I'm careful about avoiding my triggers if I am having a flare. Cold wind is my major one so I'm big on scarves.

There is an excellent UK facebook group which I have found very helpful when going through a bad flare up, if only for moral support and the feeling that you are not alone.

www.facebook.com/groups/558857264148050

So sorry you’re suffering from this. I’ve been Googling it and it sounds horrific.
I’m actually wondering if it’s what I have. Currently awaiting a wisdom tooth extraction but am having episodes of extreme pain, almost referred from the dodgy tooth. A pain unlike anything that’s in my neck, Jaw, head and ear. Painkillers do very little. Have the dentist next week to establish if I have more going on with my teeth than just the wisdom.

How long do your attacks last?

Well the pain has got steadily worse. Thought I’d turned a corner yesterday with day 3 of low
Dose amitriptyline but woke up at 2 am in pain. Shooting pains are fewer but my jaw feels like I’ve been hit and I have real problems chewing. I had to take more painkillers in night to help me get a bit more sleep. One tooth in particular is sore. Dentist a few weeks ago said there might be an exposed root and to use sensitivity toothpaste but it’s got a lot worse than that. I’m now wondering if there’s swelling in that side of jaw but I might be wishful thinking and the nerves are still the issue. I don’t really have a fever but I’m been taking the drugs like sweets. Going to dentist in an hour to get his verdict.

The dentist said he can’t see Anything in X-ray but can only see one side of tooth so we’ve agreed to take out the filling and check from cracks or splits. I’m sure my jaw is swollen so will try the antibiotics he’s given me to rule out infection in the jaw. This attack if you can call I that started mid January but would say only for unmanageably painful since last Saturday. The amytriptyline has reduced the shooting pains but the jaw/ tooth/swallowing is really sore!

My mam suffered with trigeminal neuralgia for a few years and had no relief with any medication, in the end she had nuerosurgery and she’s never looked back. Hers was caused by a blood vessel being coiled around the trigeminal nerve. It’s such an awful condition you have my sympathy.