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I started with what in thought was toothache over Christmas. it got progressively worse. I went to the dentist but my teeth were all fine. Ended up at the doctors which they said was trigeminal neuralgia. I'm on epilepsy pain killers but its getting so much worse. I end up having an attack in the middle of the night, its awful.
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RachRoux Dolly25671
Posted
Really sorry you are struggling, I too have trigeminal neuralgia so understand the pain you are going through.
Anti seizure meds are definitely the best meds for trigeminal neuralgia but it can take a while to find the right dose and the right ones for yourself.
I ended up on carbamazepine 400mg and it took a while to get to where i felt my pain was managed.
It definitely it a process but don't give up, there will be hiccups for sure but you will get there. The process is difficult and starting meds and increasing them can come with side effects that make you feel worse but they are generally temporary whilst them medication is settling.
Make sure you are discussing any concerns with your neurologist and if you have not yet seen one ask for a referral as they are the only people who can properly diagnose and treat this illness so you will be in the best hands with them.
Heat pads are an absolute life saver for me as pain meds don't work for nerve pain. I find heat helps to ease the pain so much. I use a brand called wheaty bags you can order online amd just pop in the microwave. If you get triggered by weight on your face them maybe opt for something like a warm washcloth.
It's good to look at triggers you may have and keep a diary. A few examples for me are any type of cold or cool air, brushing my teeth, chewing on my left side, putting my makeup on. You might not realise until you start to keep track but it helps once you know your triggers and then looking at how to avoid them. I now cover my face most of the time especially when i leave the house, i use a baby toothbrush for my teeth as it is very soft, and i don't chew on my left side.
I hope this helps
Rachael