I have just joined the site and found your page. I have just been diagnosed by my GP as having TN which I believe is V1 from what I have read.
It first happened in about May and was so bad I actually passed out with the pain. It only happened the once and thought nothing else about it.
I then had nothing else until mid October. It happens on my right side from my nose over to my ear and the top of my head. I have a constant headache and get unbearable stabbing behind my eye but also my eye burns. I was first give Tegretol (carbamazapine) but had a very bad reaction to it (itchy and the skin in my mouth blistering and peeling). I have since been given Neurontin (Gabapentin) I am currently taking 600mg a day (200mg 3 times a day) but it doesn't seem to be doing anything to really help just makes me sleepy and tired.
I am not to bad in my house (a couple of attacks a day) but the slightest breeze/cold/draft (we have just ended a British winter so this is constant outside) near my eye or washing my hair or rubbing my eye and it kicks it all off again for days. I am stuck in my house!
I have also been reading up on it and apparently it is rare in people under 40 but I am only 29. Is this right?
Yeah, it is supposed to be rare in youth, but I was only 33 when I was diagnosed. Good luck with the meds...it is very much a case of trial & error I'm afraid! Welcome to the group...it does help to chat with fellow sufferers! :-)
Hi Sashangel, I was diagnosed age 35 with TN Type 2, I originally thought is was dental pain and had several extractions. Now 6 years on age 41 I'm still suffering the constant pain, seems here in the UK there is not much help or support from the NHS regarding Trigeminal Neuralgia.
My father and grandfather suffers TN Type 2 pain, my Auntie and Uncle on my mothers side suffer with cluster headaches. I mention cluster headaches as some of your symptoms sounded like cluster headaches, maybe due a google search.
Hi your symptoms sound so similar to me but I get pain indoors and outdoors. As Deanne said it is trial and error with medication. I was 34 when I first got TN and I have had it for nearly 13yrs, during this time I have tried lots of didn't medication. My advice is to get referred to a Neurologist who specializes in TN so they can help you with the correct medication. Good luck and we all help each other.