I went to an Immediate Care clinic last month because of pain in my head. It was like a horrible toothache, but it was coming from my temple down into my teeth--and which teeth were effected changed. My doctor said that it sounded like trigeminal neuralgia, and once she explained the symptoms of it, I was so relieved that she believed me. Not just understood what I was feeling, but the level of pain I was in at the time.
Normally, day to day, I get sporadic pain that is like a terrible pain in my temple that radiates into my ear, and into my upper/lower teeth.
A couple days ago, I had my first bout of the "shock-like, burning" pain people talk about. It was the scariest thing ever. It happened again today, though at a much lower "frequency"(?) than the first. It didn't hurt so horribly as the first one did. It happened while I was in the shower washing my face, and as I touched my upper palate under my nose, a jolt hit me. It makes you feel like your body is against you when it happens--like you don't know what will make it mad--as normal behavior is questioned. Can I wipe the makeup off of my face on that side? Can my partner touch me there? Can I lay on my pillow on that side?
I have an appointment on the 7th with my primary doctor, and I am nervous about it. I am nervous about having enough pain meds to make it that far, I am nervous about any exams they might do, I am nervous about what they might find out--or tell me--and I am nervous about hearing them call it "suicide disease." I have gone through suicidal ideation in the past, and I am unsettled by the nickname of this disorder because I have come so far--and because it hints at a future that could be worse pain-wise.
That is something that has frightened me in my reading. I have read that TN tends to get worse--where the pain-free intervals become non-existent and/or we build up a resistance to the pain medication we're given.
Why would anyone say that? That's so scary.
I have shared some of this with friends/family but I quickly feel like I am just scaring people, because there is nothing they can say--and it's so weird--and I don't want others to feel like I am venting to them when I just need peer support. I am hoping to find this here.
The worst though is when people hear about this diagnosis and try to arm-chair me away (or my boyfriend away) from thinking it's TN when they're not doctors, or even trained in anatomy. They'll find out general ideas about the disease and then check my symptoms, and if I say something that doesn't line up with what they've read or seen, then I must be wrong about having TN. "Does she have pain when she sleeps? Because if so then it's NOT TN!" "If the pain is THIS way instead of THIS way, then it's not TN!" "If the pain is caused by.....then...." It's just senseless and rude.
My boyfriend is the best person ever. I tend to panic after some of these pain attacks, and he is right there to tell me we are going to get to the bottom of this, and that everything is going to be okay. Even if it's just management, it would be better than not knowing when the next attack will strike.
