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

Location: Massachusetts, United States

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

Saturday, December 24, 2016

Year something or other

Well, the Beast is here. The current trio of medications is doing an adequate job of containment When I say "adequate" I think of how my nurse supervisor was explaining TN to my co-worker. She pointed out that when I say "no pain," it means "tolerable pain."

That's about right. I measure my periods of complete remission in weeks now, in the warmest weeks of the summer. The other end of the spectrum, of course, is the breakthroughs, the part that gets the physicians' attention. The other eight or nine months are the tolerable months: hardly worth explaining, even to friends and family. Some clinicians, like my boss, get it and don't push it.

For years, I have followed the request of the physician who first diagnosed this pleasant companion, and kept a journal of episodes and pain levels.  My favourite measurement is the Mankoski Pain Scale, which is more exact than the silly faces most such scales employ. For those with Tn, indeed those with most neuropathies, it has one weakness. It measures pain in part  by tying it to conventional painkillers. Because painkillers have no effect on TN at all, I just edit that part out. Because I live on a diet of anti-convulsants, there is also no point at which "medication not needed" applies.  To use the scale, I rely on the degrees of distraction Mankoski describes.

Journals get discouraging after a dozen years. The executive summary is that I've crept upward through the middle Mankoski levels, hitting 7 yesterday. It was at the end of the day, so there was no need to test my "effort." For me, TN pain doesn't interfere with sleeping, most of the time, although the hallmark of the more intense levels is that it makes getting to sleep difficult, until the evening drug cocktail plus Klonopin kicks in.

So here we go again.

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