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Trigeminal Neuralgia

11 replies

SimplySteveRedux · 14/09/2021 14:29

I was assaulted (punched and kicked multiple times in the head) start of June, and Maxfax at the hospital have finally diagnosed me after three-and-a-half months of excruciating electric shock pain. They've prescribed me carbamazepine but have also said my existing oxycodone and tramadol doses need to go up. Have you found any other medication/self-care methods to work? I'm taking 800mg/day to start with. My sympathies to those of you suffering this, I thought gallstones were excruciating and needed IV morphine to deal; TN makes gallstones feel like twisting your ankle!

OP posts:
IncessantNameChanger · 14/09/2021 14:34

I'm not sure if this is any help so take with a pinch of salt. I had this suspected ( but turned out to be very weird migraine- I'm not totally convinced of that diagnosis if I'm honest).

I had amitriptyline and then epilepsy medication. A few goes of acupuncture.

I am really sure it really is such a horrific intrusive pain. My went after the epilepsy medication.

It was basically trying to shut down the noise from that nerve.

AlphabetAerobics · 14/09/2021 14:38

I manage my life very carefully and am not afraid to load up the painkillers.

I keep drinking water at room temperature and if it’s bad I stop eating, drinking and talking for a while.

I have prescription toothpaste, silicone mouthguards - and can’t tolerate “hard” brushing do use a toddler’s brush.

Billandben444 · 14/09/2021 15:22

Had it for about 6 years and it went when I had a wisdom and molar extracted. Is there a chance that you suffered nerve bruising in the attack and it might eventually heal itself? Nerve damage can take 6 months to calm down. Good luck 💐

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nothingcanhurtmewithmyeyesshut · 14/09/2021 15:24

Avoid stress.

Get regular massage of neck and shoulders. Tense muscles in the neck can trigger it.

Wear a scarf that can be pulled up over your face if it's windy.

Avoid sudden changes I temperature.

Relax your face when brushing your teeth. And clean them meticulously because you do NOT want to sit through a filling or extraction, believe me. I'm lucky to have had a fantastic student dentist who was absolutely fascinated by it as he had never actually seen a case of it and was very very careful with me so as not to provoke it unless absolutely necessary. Most dentists just shrug and say there is nothing they can do to avoid triggering it but that's bullshit, they just cba.

Don't chew your food too vigorously.

Avoid any impact to your face and any sudden impacts or jolts. No jumping off anything. Be aware that attacks may happen at any time. I've had one in the 3rd lane of the M25. Not fun.

Take the highest possible dose of painkillers before seeing a dentist and eat before the appointment because you may not be able to for a few days afterwards.

Keep painkillers on your person at all times. Good ones. Paracetamol will not cut the mustard. Keep them in your bag, in your locker, on your desk, in your car and in all rooms of your home. If you haven't eaten, take with yoghurt or a fuck ton of full fat milk. Your stomach will thank you.

Drink alcohol as little as possible. Your liver and kidneys will have quite enough to be getting on with, with all the meds.

Use a flannel when washing your face. Do NOT splash with water to rinse. Even warm water. You'll regret it. Also approach swimming with extreme caution.

MultiStorey · 14/09/2021 15:30

This reply has been deleted

Message withdrawn at poster's request.

ChicChaos · 14/09/2021 15:30

Take the carbemazepine regularly, it works by building up to an effective level in your bloodstream which then needs to be maintained - it doesn't work instantly as a painkiller. If you suffer with any side effects, ask if you can build the dose up gradually and/or try the slow-release version as well.

It is absolutely awful pain, I hope the meds work well for you.

SirenSays · 14/09/2021 15:30

I'm so sorry you were assaulted 💐💐

Willow19C · 14/09/2021 15:50

Join www.tna.org.uk if you're in the UK
Read www.thepaincorner.com
So sorry this has happened to you, it really is the worst pain Wine

Rubyupbeat · 14/09/2021 18:17

I have had tn for 5 months now and take 800mg carbamazepine and 300mg of pregabalin, the pain has just started to ease. I have been seeing a maxillo facial consultant every 3 weeks who has been amazing. My pain literally started from nowhere and then kept on, its been a nightmare. I've lost 2 stone and become a recluse. I do know if it kicks off again I will get surgery, as no one can function with such excruciating pain as this.

LookToTreblesGoingTreblesGone · 14/09/2021 18:32

Have a look at www.cefaly.co.uk/ Pricey, but you can have one to try for a couple of months at a very reasonable price.

Rubyupbeat · 14/09/2021 23:23

@LookToTreblesGoingTreblesGoneook
This is to treat migraines not tn, in fact it could end up doing more harm than good if it actually does stimulate the trigeminal nerve.

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