Trigeminal neuralgia

[DionDublinsVoiceofReason]

Does anyone have this? My period of remission is over and it's back and more awful than before!! I have amitriptyline for it but the pain is really messing up my quality of life.

Mainly in my face and around my eye

Yes it's utterly miserable. Carbamazepine is usually the drug of choice for most people.

Have you asked for a referral to a neurosurgeon?

Thanks for your reply. I'll have a look into that one.

Yes I've been under neurology for years. I'm seeing him in 2 days but he usually just shrugs at it when mentioned.

He says he's more concerned my migraines and potential MS. So I feel relatively alone with it all.

My mum had this. It was cured by surgery.

@Elphame I'm wondering if I can't have Carbamazepine due being on Topiramate but I'll definitely ask.

I actually think my neurologist has left and the one I'm seeing in 2 days is new - so hopefully he's a bit more helpful!

@Catch21 did it work? My GP mentioned there was surgical option. Hope your mum is better

Neurology are finally taking MS seriously for me - there have been a series of “relapses” over the years and TN was until this one the biggest.

the dental hospital who investigated the TN were pretty sure it was indicative of MS.

I take pregabalin and the second I get a twinge I double the dose. Not sure if that’s placebo or not!

It worked for approx 15 years and she was completely pain free. It started to return recently and she is looking at options (surgery has more risks now she's older).

Gabapentin is usually the treatment of choice these days. I knew someone who had the surgery and there were losses of sensation and movement but he did not care - he was so grateful to be relieved of the pain.

I wish you lots of good luck in finding the right treatment for you.

Mine has been controlled by carbamazapene for 10+ years, though when I had to come off it to allow me to take antivirals when I caught covid I remembered how painful it was! You have my sympathy, going back onto carbamazapene brought mine back under control

I didn't even know they were so strongly linked!

@Confuzzlediddled OK ill definitely ask about it, it sounds effective! Very difficult to be at work and randomly screaming in pain.

I wish I could retrain myself to not yelp. But the pain is so intense x

Hubby has Gabapentin, has been in remission for a few years but when under stress, he gets a tingling feeling so pops a pill, it seems to work

www.tna.org.uk

I had this for a few months last year. I was prescribed pregabalin and it worked wonders. The pain was completely gone within a day or two. I stayed on the medication for about 6 months and then gradually weaned myself off it by reducing the dose over a number of weeks. I haven’t had it since.

My son has just been diagnosed provisionally with this and prescribed Amitriptyline 10mg by our lovely GP. She has suggested a MRI to be sure its nothing else. He is 21 and young for this she says. He hasn't eaten or really slept since it kicked off. He looks awful. Reading up on it is distressing. It sounds so dreadfully debilitating.

Any words of wisdom or advice, gratefully received.

My father in law has it and when it’s bad it is horrendous for him, you have my sympathy in spades. Have you looked into the surgery for it?

There is young people's support available at www.tna.org.uk for members x

@CB98xx thank you.

I'm having my second bout if TN - the first was 6 years ago. This time it's worse, like red hot pokers in my head. Doc has put me on amitripyline as I can't take the epileptic drugs. It's so debilitating.