Adventures We'd Rather Skip
Today, it's official. I have trigeminal neuralgia. Due to the elusive nature of the malady, it's taken three and a half years and two other, disproved diagnoses to get here. For those who know me, this explains all those days I would sit at my desk holding raw ice cubes to my face in a futile attempt to deaden the sensation.
The bad news is that this ailment of unknown origin, also called tic douloureux, is considered the most painful affliction known to medicine. The good news is that, unlike the erroneous diagnoses, this one is treatable. TN operates from neural triggers, which are usually very small things. In my case, it's been stepping from a cold place into a warm one, or being hit with a cool breeze whilst in a warm place. There's no cure, short of the drastic last step of severing the trigeminal nerve, but it should be possible to resume a whole range of normal activities. If the medication works (still to be seen) I can again open the driver's side window of my car, take walks or bike rides on windy fall days, resume cross-country skiing, and not sit waiting for trouble if I find myself seated under a cool air blower. The price for doing those things has been to be hammered with TN attacks which, once begun, continue once or twice daily for a couple of months.
My medical studies helped pin down the diagnosis, but the objective language of medicine really doesn't do TN justice. It's easy to understand why people once thought of such things as demonic possession. The pain of TN really does seem like an alien presence invading your body. One is at once overwhelmed by the scope of even a "moderate" attack (on a level with the worst cluster headache I ever had) and curiously detached from it. Knowing neuroanatomy helped me direct the clinicians to the exact points causing the most trouble (the trigeminal nerve rather resembles the New York Subway map). It doesn't keep me from envisioning a little fiend amok in my brain with sharp pointy things heated red-hot.
There's a twisted sort of satisfaction in that "most painful affliction" business, simply because I have managed to get on with life whilst all this has been going on. It makes one want to shout back at the Fates, "come on! Is that ALL you got?" It also says it's been OK to assume a fetal position in a darkened room, once or twice daily for a third of every year, or sit where you are, digging your nails into your palms until you leave marks. Once again, the experience makes me happy I live when and where I do. Not long ago, the only treatment for TN was rest in a darkened room and drunken oblivion (an option if alcohol wasn't your trigger). It is thought to be the explanation behind thousands of otherwise unexplained suicides over the ages. Because, when you are having a full-bore, Category 5 TN attack, death does look like a rational alternative.
Ongoing here. Evidently I have found a dose of Tegretol that works. It also leaves me in a drugged stupor that makes typing this an adventure. I wouldn't mind that except that I'm allegedly studying for an Anatomy exam. Ah well....
The bad news is that this ailment of unknown origin, also called tic douloureux, is considered the most painful affliction known to medicine. The good news is that, unlike the erroneous diagnoses, this one is treatable. TN operates from neural triggers, which are usually very small things. In my case, it's been stepping from a cold place into a warm one, or being hit with a cool breeze whilst in a warm place. There's no cure, short of the drastic last step of severing the trigeminal nerve, but it should be possible to resume a whole range of normal activities. If the medication works (still to be seen) I can again open the driver's side window of my car, take walks or bike rides on windy fall days, resume cross-country skiing, and not sit waiting for trouble if I find myself seated under a cool air blower. The price for doing those things has been to be hammered with TN attacks which, once begun, continue once or twice daily for a couple of months.
My medical studies helped pin down the diagnosis, but the objective language of medicine really doesn't do TN justice. It's easy to understand why people once thought of such things as demonic possession. The pain of TN really does seem like an alien presence invading your body. One is at once overwhelmed by the scope of even a "moderate" attack (on a level with the worst cluster headache I ever had) and curiously detached from it. Knowing neuroanatomy helped me direct the clinicians to the exact points causing the most trouble (the trigeminal nerve rather resembles the New York Subway map). It doesn't keep me from envisioning a little fiend amok in my brain with sharp pointy things heated red-hot.
There's a twisted sort of satisfaction in that "most painful affliction" business, simply because I have managed to get on with life whilst all this has been going on. It makes one want to shout back at the Fates, "come on! Is that ALL you got?" It also says it's been OK to assume a fetal position in a darkened room, once or twice daily for a third of every year, or sit where you are, digging your nails into your palms until you leave marks. Once again, the experience makes me happy I live when and where I do. Not long ago, the only treatment for TN was rest in a darkened room and drunken oblivion (an option if alcohol wasn't your trigger). It is thought to be the explanation behind thousands of otherwise unexplained suicides over the ages. Because, when you are having a full-bore, Category 5 TN attack, death does look like a rational alternative.
Ongoing here. Evidently I have found a dose of Tegretol that works. It also leaves me in a drugged stupor that makes typing this an adventure. I wouldn't mind that except that I'm allegedly studying for an Anatomy exam. Ah well....
posted by Uncle | 00:44
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