explaining a condition no one has heard of and cannot see

Dear Diary,

It's kind of fascinating to be afflicted with a condition that renders you in some of the worst pain known to humankind when it's so rare and so physically invisible that you want to stick an icepick in your jaw just to make it real for people. When it's not being fascinating, it's a brutally lonely condition.

Which is not to say there isn't sympathy, there is, but I imagine that if I could sit in the presence of a TN sufferer I would feel seen in a way not possible with healthy people. Sadly, 11 years in, I’ve still not met anyone with TN. Before you ask, yes, I've done tons of research into online communities (I don't find them helpful) and meet ups (there are none). My neurologist assures me (terrible word) that she has plenty of patients. Our paths do not cross.

Last night was really really bad. I had an attack that lasted for over 30 minutes and here is the best I can do: have you ever be woken from sleep with an urgent charlie horse in your leg or foot, the kind that makes you sit straight up and gasp for breath? Take that feeling and pick one side of your face. Wrap it around your lower jaw bone, your cheekbone, and all the tendons around them. Turn it up to 12. Then imagine a frozen ice pick is running through your bottom back teeth while canker sores erupt along the edge of your tongue. Then put a pallet of bricks on your temple. It is so painful that you can’t move. Tears stream out of your eyes but you cannot move, you cannot vocalize, you cannot sit up straight or gasp. It is every torture scene in Game of Thrones happening all at once in your face.

I don’t know the artist but I found this here. Googling Trigeminal Neuralgia Pain Art is a trip!

My attacks can be mild (4-5 on the pain scale) to extreme, like last night, which was a 10, and I have them 5-6 times a day. Those of you who have given birth vaginally without medication might think you know great pain (7-8), and I don’t want to take that away from you, you know pain, but I have given birth to a 9.2 lb baby after 36 hours of brutal labor and can say unequivocally that I would rather do that every. single. day. than go through one of my worst TN attacks. I almost asked Matthew to take me to the ER last night but knew, somewhere in the deep recesses of the part of my brain that could still function through the pain, that the attack would be over by the time anyone saw me.

You are wondering, there must be medication? Stayed tuned! Short answer: nope.