Trigeminal neuralgia

Hello

Looking for some advice from anyone dealing with trigeminal neuralgia. Due to see my Neuro next month as latest MRI showed new lesions after being pretty stable for a number of years. I know the standard medication is carbamazepine for trigeminal neuralgia which I haven’t been prescribed yet, but I just wondered if anyone had any success with any other treatment or medication that I could try in the meantime?

Many thanks

Your GP might be happy to prescribe Carbamazepine in the meantime…mine did. There are a few things you can’t take with it - I was on Sertraline for anxiety and had to stop that to take Carbamazepine. It did help but takes a while to build up so def ask your GP before you see neuro. If you have an MS nurse, he/she may be happy to prescribe, or to email your GP. I sympathise, it is the worst pain I have ever experienced xx

Hi Vicky,
TN is the worst! Carbamazepine keeps it at bay for me, 300mg a day until, six weeks after my covid second jab, I had such bad attacks I had to increase to 1500mg. I also pop a 10mg Baclofen which I was taking in the early days of TN, before it laid me out on the floor screaming.
I know it works so I don’t want to switch and risk any of that pain ever again!
I also keep a diary of attacks and meds which my neurologist finds helpful.
Good luck! Let me know how it goes.
Jon

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It was the worst pain I have ever had - by Gavin Giovannoni (substack.com)