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, February 20, 2016


It says a lot about both pain tolerance and the effects of anti-convulsants that the modest zaps of the past eight days don't really count to me at all. Some have reached the level of distraction, but it's up in the air whether these zaps, or the effects of what are now monster doses of both carbamazapine and gabapentin, are more distracting. Things have thus improved. This is quite a nice day and I've been able to go outside a bit. Still need to be cautious about vigourous chewing and drinking more than a token bit of alcohol.

I haven't yet asked my PCP about the Botox. Due diligence suggests it's a plan. I'm expecting some argument because my summer experience remains modest. But my counter-argument will be based on quality of life, and the many things Botox would let me do in winter that are off the board now.

Stay tuned.


Friday, February 12, 2016

Or not...

The following has been written over the last five days, here and there. I'm keeping it for myself, with very little editing, as a document of several days with extreme TN episodes plus medical side effects. It is time to take seriously the medical suggestions that I might be a candidate for the relatively new use of Botox as a TN treatment. This business of increasing medications to near-toxic levels has been unsettling. I'm taking a short breather from the run-up, which I can afford because it's at a level which appears to offer some relief. I have a few days  in which I can do this and find out about the Botox. Then I may have to see what the final level brings.

I was rash enough to call Sunday' episode a culmination. It wasn't. Monday through Tuesday beat  it all hollow. In 36 hours I ate successfully once, through a combination of TN and the struggle to run up the meds. When my PCP suggested that step, I hesitantly agreed. I forgot that when I had done the run-up before, it was one drug at at time.

What's been going on is a combination of every side effect in the litany for each anti-convulsant, along with breakthrough pain at at very high level: high as in I stopped counting. This is the stuff of which suicide is made. Had the whole business not subsided yesterday mid-morning, I'm truly not sure what I would have done. There are limits to endurance.

Stopping the run-up isn't an option, really. I could call it quits where I am and see if that's enough, but going backwards is only slightly less amusing. As I mentioned, quitting the meds entirely is a potential method of suicide, but nothing else. If what's been going on is a sample of what sudden change of meds can bring, I'd rather throw myself under a bus. In addition, the dosages mean that I can go on at intermediate levels only so long. I have just enough of lower doses to enable the transition (from my old scrips). Since pharmacists today are anal about filling two different dosages of the same scrip, it's push ahead a little more or go back where we started, with nothing to show for all that crap. Gotta go ahead.

This does creep out the spousal unit. Evidently I've been tossing and moaning enough to call attention to myself. Not good. At the low point Tuesday evening,  I just solved the pain problem by gulping a handful of Clonazepam. If you're wondering what happens then, you wake up six hours later with several kinds of headache, persistent nausea and an inability to sleep. And so on.

Things did get back to normal by Wednesday night, and have remained no more than an average level of pain a couple of times a day. As I mentioned a few days back, that hardly counts anymore.

Monday, February 08, 2016

Keeping my sort-of promise.

Last Monday, my day to have platelets, I had not Tn pain worth mentioning. As usual, that means "no pain that I would consider worthy of notice." Others might not think so. The rest of the week has been less lucky, culminating with a 13-hour marathon that followed a brunch at which I was a little careless, and a social gathering that included a fair amount of walking--also careless.

One of my diversions in a time like that is thinking about what I might eat when this settles down. Right now, I think it might be peanuts or cashews. The other, as always, is keeping score. The average of the marathon was probably Mankoski 7, with a few 8-plus jabs thrown in for variety. Usually, Once I've drugged up I sleep through a lot of this, and know it's still on when I wake up in pain. This time there was no sleep until early in the evening. Yes, I increased my Clonazepam dose. So would you, in the same place. It brought four or five hours of sleep, and when I woke up, the pain was gone.

I have to explain that waking up to no pain, in situations like this, brings confusion and surprise before it brings pleasure. When one lives with TN for so long, even with my extended summer remissions, pain gets to be so normal that at first one doesn't quite  know what to do when it stops.


Monday, February 01, 2016

The price of obstinacy

On Saturday, determined not to let the Beast have all the shots, I drove to Manchester, NH for an SCA event. Since this one is indoors, I figured I had an even chance to seeing something. I lasted about three hours before Beastliness. I finished my last errand quickly, and beat it before the tic got out of hand, I hate the tic almost more than the pain, because one begins to look like a refugee from a horror film. This can alarm misinformed people, which can lead to restraint, and ambulances, and EDs, all of which are unnecessary.

As usual, once things set in in earnest, eating is a trigger. The exception is breakfast. I don't eat a big breakfast, which may be why. However, I'm otherwise living on soup, and scrabbling to dig up soft recipes that offer a little culinary challenge while having a mush-like consistency. Tonight was curried rice with (bought'n) Punjab eggplant. I've found a recipe for African peanut soup that I can prepare quickly, which is important when one can only count on a few healthy hours a day.

Here, without naming names, I must point out that any chronic illness brings in its train the well-intentioned but ill-informed friend or relative, who is sure to have something that will keep you healthy and happy and have nothing to do with the problem, The latest was "well, last year you weren't sick, and you went out a lot to shovel snow, so why don't you start taking nice outdoor walks."

Item: last year I was out a lot because I had to be out, and much of the time I was sick but our seven-foot drifts gave us other worries. I was not as sick as this year because TN plays with you.

That's the simple answer. The more complex one is that treatment of TN and other neuropathies calls for a delicate balance of meds in the blood and liver that will suppress the symptoms. Sometimes, the liver reserve falls, the blood reserve follows it, and shit happens.

The game is trying to regain the balance while avoiding as many pain stimuli as possible. This isn't easy with a progressive disorder, especially one that has stolen a march on you. Go for a walk? Sure. Why the hell not, when I can now get sick sitting at my desk in a warm office. Let's go back 200 years, treat like with like, and do the thing most likely to cause pain. How about a nice chewy three course dinner afterwards.

The best thing to do, if you know someone with TN or another neuropathy, is to be helpfully
sympathetic. Keep your sovereign remedies to yourself. Don't provide links to the latest bit of woo you picked up on Google. Those of us who have dealt with this for a long time (15 years next April, in my case) try to be partners with our clinicians in the treatment of the disorder. We read up peer-reviewed studies of the latest treatments, weigh the pros and cons, and try to enjoy the times when we have little or no pain. Amateur doctors don't help.

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