Scratches

Comments on life, the universe and everything from an aging Sixties survivor.

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Location: Massachusetts, United States

Ummm, isn't "about me" part of the point of the blog?

Friday, January 29, 2016

Disagreeable firsts

It hasn't taken long to lose track of the numbers, but on Wednesday I had two firsts with the Beast. For the first time I had an episode at work so severe that I had to leave the office. The other first was the reason for the severity. For the first time  Clonazepam had no effect at all on the symptoms. It is understatement to say this was disturbing: it led pretty quickly to panic. Level? Mankoski 9+, McGill over 10: that's to say concentration for more than a minute or so was impossible, I was dizzy and disoriented, and feeling some nausea. Being absurdly self-conscious, I apply what little self -control I have left in these situations to repressing an almost irresistible urge to moan. If I'm alone in bed at times like this, I don't mind so much

I have a new PCP, who hasn't seen the symptoms, so that was my first stop. One is extra careful driving even on a low dose of Clonazepam, but also I found my sense of time was completely fucked up. It's less than 15 minutes from my office to theirs, but it seemed like three hours. Fortunately, she would be available as soon as possible. Again, I'm not exactly sure how long that was. My face was beginning to tic in the waiting room, I remember that. I don't like frightening the villagers, so I mostly hid my face behind clenched fists during the wait.

The perky medical assistant who took my vitals had clearly never seen TN in full cry before. I think I took her aback when she routinely asked "how are you?" With what voice I could muster I said " I feel like hell," and went over the symptoms. One trouble with a full-on breakthrough is how hard it is to communicate more than the simplest thoughts. Kept it brief, impressed the MA with the gravity of the situation, and begged her to turn off the light in the examining room (the Google experts don't tell you how much light can hurt). Sitting in the dark did so much to relieve the worst: it has done so since Hippocrates,

My young physician was all one could ask for. It must say somewhere in my chart that I'm an "informed patient." As my voice came back I described what had been happening for the last two weeks. It's my personal and professional policy never to tell a physician anything; rather to inform them what I have experienced. That's how you get along with M.D.s, and it is a fine line. Mine picked up quickly on the background questions that have been growing in my mind these last two weeks. She proposed some changes in my meds: some small, some pretty substantial that went at first a bit beyond my comfort zone. We talked those through and in the end I agreed, and we agreed how how to ramp up the dosages. One should not go jumping up rapidly in doses of anti-convulsants, nor cut them down rapidly. Either can make one very miserable or even very dead.

That was two days ago. Yesterday was less rotten than the day before, having applied only the small changes. Today is the start of the larger changes. One is never exactly well when a TN breakthrough is on, but there are degrees of pain, and for us many of those are tolerable.

In this, and in my work life, I have to deal with the fundamental problem of pain management, which is that pain experiences are subjective. It does little good, for instance, to explain to people that the only pain equal to or greater than the upper levels of TN is inoperable brain cancer. Most people will be lucky enough to be unable to make the comparison. But I read a better analogy the other day, for the moderate levels anyway. It is like experiencing childbirth. With a broken leg.

On Wednesday, I blew past that level about an hour into the episode...or so I'd say. Let's hope the revised meds do the job.

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