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?

Monday, October 31, 2016

A disorderly focus

Thanks to the Harrumpher guy, who has provided the missing focus for this thing, the adventures of life with trigeminal neuralgia  (TN). It's been a periodic motif here for several years and, aside from the material that an uncommon chronic disorder provides, it may serve as a useful springboard into other topics. So then.

The adventures left off with the joys of Gabapentin, one of the staples of medicated life with TN. I've added a third staple: Baclofen. Best-known as a muscle relaxant, it also has anti-seizure properties,  the same properties that make Carbamazepine and Gabapentin useful for TN. I've been on it for just under eight weeks, and adding it seems to have done one very important thing. My breakthroughs are now contained in hours, at most a couple of days. In the ten years or so that I've been doing Carbamazepine plus Gabapentin, breakthroughs have been the horror that is always lurking around the corner. My primary trigger, to repeat, is temperature changes: that can mean cool or cold breezes, going from a warm space into a cold one, or vice versa. My secondary one, developed over the last four or five years, is dental work on my affected (left) side. At this point, with heavy meds and a ridiculously increased pain tolerance, the brief episodes these stimuli bring on are bupkis. The problem is that any of them, with very little warning, can break through the curtain of medication and bring on a global-scale episode, pain that not only repeats, but escalates. Thus the Clonazepam, which can come out  as soon as an episode shows signs of getting out of hand. Even Clonazepam can only contain each episode, because once breakthroughs are established, they go on. In my case, they go on for six to eight weeks, two or three episodes a day lasting one to three hours each, of pain ranging from barely tolerable to extraordinary. Since one rarely has episodes in sleep, you can do the math. During a breakthrough I may waste half my waking hours hosting the Beast's rambles, and the same amount of time after the episode recovering from having my brain kicked about like a soccer ball.

With Baclofen, so far, episodes sputter out in a short time with little or no resort to Clonazepam. So far. When one lives with this Beast, one grows highly sceptical of any treatment. Many of them work for some people. Some work for all people. For a while: until the Beast finds a way around the treatment and comes back. It's a good thing that Baclofen works, but so far it makes me so drowsy that I only dare take it before bedtime. That may have to change if there's a breakthrough, because "before bedtime" is when I least need help. And oh yes: it's very tough for me to take Baclofen and Clonazepam together. Clonazepam alone can make me disoriented and reckless, as well as drowsy.
I find that both together put me down altogether for six to seven hours.

Is the game worth the candle? We'll see. Next, we take another tour of the great surgical solution question.