Transgeminal neuralgia

[YinYoga]

Does anyone else suffer from this horrible condition? I am really struggling to cope with it. It is triggered by the slightest breeze on my face and I feel completely trapped indoors. I am taking carbamazepine and slowly increasing the dose. Can anyone give me any advice or positive stories?

Not me but my cousin suffered badly until she was given botox injections.
This treatment has really improved things for her.

Thank you for posting this. Was it through an NHS neurologist or did she just go to a normal botox provider?

Through the NHS.
It really changed her life because the pain was incapacitating her.

I had this for 3 years (it was called trigeminal neuralgia though?) and coped with it by tapping an unaffected part of my face with 2 fingers, firmly and quickly, which seemed to distract the message from the relevant nerve. Mine was cured (everybody said I'd have it for life) by the removal of a deeply-rooted wisdom tooth. Came round from the GA and the pain never returned. I hope you get some relief - I remember it as the worst pain I'd ever felt.

I've had it twice for extended periods. It what was horrendous. I was on a massive dose of Carbamazepine together with a high dose of co-codamol and antidepressants. I really wanted to die. Labour just didn't compare. The episodes which would last for hours, several times, day and night eventually became less.

The last time it happened my GP said he disagreed with the previous diagnosis. He felt sure I had a sinus infection instead. He gave me a low dose of Carbamazepine and a strong antibiotic and it was gone within 5 days. That was nigh on 20 years ago.