Hi
I am in Kettering, UK. I have had TN for a year now. I am not used to discussing my condition as most people don’t understand although they are supportive. I find it is difficult having an “invisible” condition that strikes without warning and makes me check the speed of the wind in the morning rather than the news.
Hi Claire, this is a very late reply, but to say hello, and if you would like to reply sometime… I suffer with GN, TN and ON - so if you would like to chat on here, drop me a line. I am a little intermittent on here, as like so many others, poorly, but I will look out on my computer for a reply. Good night and hope you get some sleep, bw jane…
Some what late in replying. Within five minutes… your neuro confirmed TN and GN, what took him so long? Bit like saying I’ve a pain in my head, and someone diagnosing you with a headache.He has not given you a diagnosis- and to be fair to him/ her it is not easy. The number of times I read/ hear this gets depressing. TN/ GN is NOT a diagnosis but a description of symptoms, when you next meet, ask them what they think is causing your pain. It is the same as going to your Doc with low back pain and him diagnosing you with lumbago- fancy term for low back pain. Your doc says you have TN/ GN all he has told you, is what you told him with a flowery name, he can then prescribe medication, which sure might help pain. Demand any potential tests for a diagnosis, then you might hit on the cause. You get TN on the opposite side to your herpes and conclude " So I really don’t think this is all due to any neck problems I’m afraid." Can’t not help myself, but you make no sense, I don’t like you suffering … you make no sense. You don’t even have a diagnosis beyond your face and ear hurt.
Hey, it’s a nightmare! This summer had an MRI( given all clear) and been diagnosed with cluster headaches very similar symptoms to yours. Have been given options of pure oxygen during an attack, self injection, blood pressure tabs and if severe injection in the back of head. He told me tregertol won’t work. How’s things with you ? Do you find it’s dependant in weather, stress etc? Be really helpful to know if you know what triggers it? Woke me at 4 am today after nothing for two days, had faceache all day and bam 530 this afternoon! Over four hours later only just subsiding! 
Hi I’m from Manchester I’m 36 Iv got occipital and TN atypical. I’m in so much pain on the left side.