Note about my language: I call the 3-5 month long period of pain I go through an EPISODE and the 30-60 minute periods of acute pain within the episode an ATTACK. I tend to have 5-6 attacks a day.
Q: Can’t they remove/zap/cancel the nerve?
A: Oh man, I wish. The trigeminal nerve is responsible for your whole face. It controls most functions of your face. If you killed or removed it you wouldn’t have control over eating or talking, you’d bite your tongue and cheeks all the time, etc. No doctor would do this.
Q: Have you tried…..?
A: Probably. There are drugs I haven’t tried (getting there), and surgeries I am not eligible for, but alternative modalities have been explored throughly. I mean, I had rice thrown on me for Christ’s sake.
Q: What are your triggers?
A: Dental work on my lower right hand back molar is the best way to make an episode happen, a guaranteed trigger. I have had episodes without any obvious trigger. They come every year and a half to two years. I’ve never gone longer than two years without being in pain. When I’m in an episode there doesn’t seem to be triggers per se, attacks just happen every couple hours. Probably bathing my back molar in hot or cold or crunching on something would do it, but I am very protective of my teeth when I’m in an episode. Some people are triggered by wind and teeth brushing and other innocuous things and luckily I’m not one of them.
Q: Are there lasting ramifications to having Face Pain?
A: Well, hopefully not death. I brush my teeth less and floss my back teeth never - we’ll see in 20 years what that brings. I eat less and when I do eat I eat on my left side. In fact, everything I do is favored by my left side. I find myself listing to the left now. My left and right sides are living in different worlds. The nerve pain is intimately linked to my right shoulder and upper back and for reasons no one can explain, when I am in an episode I have an uncontrollable urge to crack my neck, and when I do I feel a fleeting pang of relief in my face. (When I am not in an episode I can’t crack my neck, it doesn’t work), so there are chiropractic long-term implications that I can’t care about right now. Depression, of course. The amount of stress hormones and loss of sleep I’m sure is not good.
Q: Why is it called a disease?
A: Good question. I’m not sure. I don’t think of it that way at all. I am convinced that I was damaged during a dental procedure so I think of my self as having a condition or disorder. But some people develop TN organically. Some of them have a compressed nerve that can be surgically moved around and cured, some of them don’t and never find relief. With damage other than compression I doubt my chances of permanent relief are good. There is a movement and a lot of language in the TN community about raising awareness in the hopes of finding a cure which seems really strange to me. The condition is caused by so many unknown instigators and presents so differently in its sufferers I don’t even know where you’d start.
Q: Is it really “the worst pain known to humankind”?
A: Again, thanks for researching. I mean, I think so, and I’ve given birth to a 9.2 lb baby without drugs after 36 hours of labor. The pain scale is a wonderful exercise in trying to understand the un-understandable, and everyone’s scale is different, but honestly I feel as if I have cracked the human body pain experience and I know where the edges are of it are. Probably if you were in any more pain you’d pass out, I’ve come close. I wish I would pass out actually.
Q: How can I help?
A: Thank you, I get this one a lot, thank god. I love my friends. I think having an understanding of just how disabled i am when I am in an episode is the biggest thing you can do. I can’t meet for coffee, I don’t want to talk on the phone, etc. It’s nothing personal. Please just believe me. Checking in my email or text is really nice and I’ll respond when I can. I’m not saying, “Go Away." I’m saying, “Give me a couple months and then we will party hard.” One of the worst parts of this bullshit is that I become very unreliable and I HATE being unreliable. I am a punctual person and allergic to being there when I said I would be. If I were to make a date with a friend the anxiety over whether or not I would actually be able to show up would be bad.
I really don’t need suggestions or advice, it just annoys me right now. I’m not resigning myself to this like a martyr I’m just 11 years into this and have tried most things. And if I need one of those I will ask for them. Chances are, since I’ve only sent this blog to friends and family, that I love and adore you and hold you in high esteem, so if I think you have a suggestion for me I will ask you for it.
I don’t need food; cooking, when I can, is a pleasure. And there isn’t much I can eat at this time (yay for having GERD while having TN!) so asking someone to cook with the 5 things I’m allowed to eat would be embarrassing.
Now, if you could magically transport into my apartment when I start an attack and rub my face for half and hour you are welcome to do that but if you have transport technology you should probably spend your time selling that shit. Anyway, thank you love you mean it.
Got questions? Comment or write me at sarah at smallvictoriesdesign dot com or: