Trigeminal Neuralgia

[Strawblue]

If you have been diagnosed with this what are your triggers please? I have read that caffeine, bananas and stress can be triggers or make it worse.

I have been diagnosed a few weeks ago but not at the point that I need pain medication.

Please don’t give me any horror stories though. I’ve read enough about this condition to be petrified as it is 🙁

How horrible I’ve had nerve pain in my head/neck and it’s the worst pain I’ve ever experienced so much sympathy.

Do check out the Curable app and Nicole Sachs as both have stories of people recovering from TN through their methods.

Cold/ wind

brushing teeth

my long hair falling on my face

eating food such us crusty bread that requires chewing.

my tn is in 3rd branch - mandibular

I find the concept of food triggers an odd one.

I've been diagnosed with this for 7 years. The cause for mine is an artery rubbing on a nerve in my face. My triggers are the cold, stress and exercise (due to a higher heart rate meaning the pulse in my artery rubs more on my damaged nerve).

No horror stories here - once I got my diagnosis and onto the right medication (my first one gave me lots of side effects) I've had really good pain relief for 95% of the time and it's still working.

Before my medication, actually eating or drinking ANYTHING, or brushing my teeth or anything touching my face, inc a gentle breeze was a trigger.

Stress is definitely my trigger. But yes bananas and the cold too lol.
With stress though I find I get the pain so frequently and for months at a time
I haven't had any pain for a while now and I haven't been taking my tablets. My doctor is happy for me only to take them if I need to. I just don't feel comfortable with taking the tablets long term if I don't need to. Not that I've had any so far but the side effects did concern me a little

Sleeping with my hand under my face. It pushes my jaw at an angle that triggers the TN. Also rheumatoid arthritis- a flare was so bad my jaw was partially dislocated and I told my rheumatologist I wanted to chop my own head off due to the pain.

My sympathies, it is a bastard condition. My consolations were a fuck tonne of opiates and one of the heated pads from aldi/lidl which helped keep a lid on the pain. The good news is that while I've had periods of pain, it hasn't been permanent. My rheumatologist or the dental hospital will see me as an emergency if it flares again. (it has, but only part of a day, not long term like it was before)

I wasn't going to reply; but thought I might have a bit to add.

I suddenly got TGN about 7 years ago, out of the blue. I had the dental referrals, a filling or 3 replaced; perplexed dentist; then facial-maxillary referral etc. I can't remember which is the first 'go to' drug; then the next; if the first doesn't work? So I had Gabapentine and Carbomazipine. Can't recall which order! Or the correct spelling. Horrible, exhausting drugs, with my face often buried in a hot water bottle. It was hideous.

But. More or less as suddenly as it arrived, it disappeared. I live in fear (mild anxiety) that it may reappear and floor me again. But, the odd twinge; otherwise gone.

It's a horrible condition. There's a reason it's called the suicide disease. But- mine- just- went away.

Hope yours all will.

I have occipital - so similar as it affects part of my forehead down to my eye

anything which rubs on the affected area, hats, headbands - even rubbing in moisturiser too vigorously. Tying hair back too tightly, brushing hair. Outside the worst is when it’s windy - seems to be common with nerve pain.

I found ice works better than heat for me - I have a couple of ice packs with covers that are designed for knees.

Stress and tiredness can flare me up badly - which can end up in a bit of a vicious circle as the pain can stop me from sleeping.

Nerve block injections have helped me so far, but my neurologist won’t do any more as they’re not a long term solution - I got around 3 months relief each time so I’d try them if offered. They’re not pleasant by any means - but those months without pain were amazing

Cold on my face seems to be my trigger - particularly cold winds.

I was on carbamazepine which gave me horrible side effects at first but seemed to do the trick. I gradually came off it after about six months and haven’t had any attacks now for two years though I do get some gentle twinges and ‘normal’ headaches on that side sometimes.

Outside of the TN sugar can sometimes trigger headaches for me though by no means always.

I was diagnosed with this about 10 + years ago after it suddenly coming on at work - definitely triggered by stress
had to take quite strong medication but as another poster said as randomly as it appeared one day it just went away and (touch wood) hadn’t been an issue ever again
I hope yours dissapears it ok it’s an awful Illness don’t think I’ve ever felt as poorly xx