Hi, my name is Sue. I have had TN since 2009. I had a tumor removed from the orbit of my eye and they hit a nerve which has caused me to be in severe pain for 10 years. I know why they call it the suicide disease now. Some days the pain will stay around a 5-7 which is painful, but tolerable. When the pain gets to a 9-10 you just want it to end. It’s horrible!
It’s like a knife jabbing you, it’s a burning like a hot charcoal is sitting on your face. Or even broken pieces of glass constantly feeling like they are cutting you. The pains keep coming out of nowhere with no rhyme or reason.
It’s hard to eat, sleep, talk, brush your teeth, wash your face, go out in the cold and wind. If my hair hits my face it’s like an electrical shocks hitting me in the face.
What gets me through all this is my family and friends. I try to keep busy so I don’t think about the pain. You also need a good support system. I know I have all of that so I keep going.
My life changed in a flash when I was 19. I was having lunch with my parents when, out of nowhere, I felt the most intense pain I’d ever experienced. My head felt like I’d been struck by lightning, stabbed with an ice pick, slammed into a brick wall and hit by a truck, all at the same time.
It took 20 years to finally get a proper diagnosis, but once I had a name for this monster, I knew I’d do anything I could to help fight for a cure so that, one day, no one else would ever have to suffer like I have.
With the constant love and support of my family, I battle trigeminal, occipital and geniculate neuralgias. I’m only here today because they give me a reason to live. This pain is the most unrelenting, profound and sinister force I’ve ever known. And I want it gone for all of us.
Thank you for supporting the Facial Pain Research Foundation and their critical work to find a cure for all of us.
My journey with the beast of a disease started almost 7 years ago this summer. I suspect it is due to a fall and hard hit to the forehead.
One morning I woke up and it was Occipital Neuralgia, intense itch, then burning all over. 4 weeks later I had extreme burning in right side of face. I went to a general practitioner, he told me he suspected it was Trigeminal Neuralgia. So I went to a neurologist, he confirmed I had ATN. I felt like I’d been gut punched when I googled it. Terrifying info for sure.
I take seizure meds, antidepressants and CBD. I also get Botox treatments every 3 month. For me the Botox and the CBD are what works best.