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?

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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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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Tuesday, January 26, 2016

Trigeminal Neuralgia 2016 7 & 8

Monday. a doubleheader again. The morning session blew by quickly and with great intensity, and contributed to kacking my blood platelet appointment. The evening session was equally intense, but I only missed out on things I wanted to do.

The resolution to keep taking notes on this is fading rapidly. This pain is a very private experience, and only people who have it can understand. On Sunday night, I pulled the plug just as "60 Minutes" was doing something or other on the "Make a Wish Foundation."

I'd like to make a wish. I'd like the TN to be over and stay over, but that's not going to happen.


Sunday, January 24, 2016

Trigeminal Neuralgia 2016 5 & 6

I'm including number 5 just to keep the string going, because pain levels in the 4 to 5 range hardly count any more.

It was interesting because it was followed by two entirely pain-free days. What a cheat that experience can be! It's a treat like low gas prices; you think it will last, you hope it will last, but part of you realises that it won't.

It didn't. With my triggers, running a snow blower is a roll of the dice, even the Dead Bunny bomber hat and three layers of hoods. The warning shot was kind enough to wait until I was done and inside. Then I waited to get a grip on how bad this episode was going to be. When it became clear that this was going to generate sensations above average, I popped a Clonazepam and went to bed.

Blessed be Clonazepam. Before it kicked in (tablets take about 20 minutes to dissolve and enter the bloodstream) The zaps were Mankoski 7, some up to 8, or McGill 9. This is the start of the "Holy Shit" range, if your brain could spare the energy to get your mouth to speak. The drug did what it was supposed to do, bringing the pain down to an manageable level before it got out of control.

I don't know how it is for others, but without Clonazepam, my breakthroughs can spiral up to levels that are near unconsciousness. The scariest episode I had like this hit me when I was driving, some years back. I knew the road, and I knew as the Beast rampaged, that there was a place I could pull off not far away and ride it out. I just made it. One of my oaths with all this is no matter what happens to me, I don't want to harm anyone else before I regain control. I'll put up with a great deal of pain to prevent that.

Everyone who lives with this knows that it is rare, and consequently few clinicians know how to treat it or how, exactly, it manifests. I was just reading a well-meant but hilarious piece by a neurosurgeon on the fine distinctions between idiopathic and atypical TN. Atypical, he says, is likely to point to a physical cause. Then, he said that any pain ("zaps" to the cognoscenti) lasting longer than five minutes should be investigated for that cause.

Ayah well. In breakthroughs, my zaps last from one to five seconds. But they are spaced only a few seconds apart, and one's grey matter is reeling from the assault during the time between zaps, so much so that one could be forgiven for thinking the TN pain is constant for the 30 minutes to several hours of the episode. One neurosurgeon I was sent to had heard of this manifestation, and called it the trip hammer effect.

All this is much better than it used to be, before we got the regimen that helps. Then, the zaps flashed in every half-second or so, at increasing intensity. Just leave it at that and be grateful for small blessings.

Late news. Had another breakthrough of similar intensity in the evening. This was self-inflicted: I forgot to take my meds with supper (a danger of getting wrapped up in sports). All the same, I don't know why I'm cruising on the edge. Carbamazepine is lipid-soluble and I should be building up a reserve. Going without even one dose right now is like driving with the gas gauge warning light on.


Friday, January 22, 2016

The woo! It hurts!

I'll skip the latest TN instalments, which are much the same anyway, except for moving into twice-daily episodes, to reflect on a strange phenomenon.

First, by turning my back on Facebook, I've cut myself off from the latest news on food woo and quackery. As a result, trends can fly right over my head unnoticed.

Second, I do our basic grocery shopping at a local market every Thursday morning before 8. The prices are a little higher than the mega-chains, but the variety is good, and I can get in and out in 15 to 20 minutes, because there aren't that many customers stirring at that hour

Generally. This morning, I arrived at the checkout to find one person (of the well-heeled, well clad, first world entitled variety) making a great deal of to-do over her purchase. It says much that her environmentally responsible grocery list was packed in store bags, because her social responsibility didn't extend to bringing her own bags. It was also interesting that a large portion of her purchase included bananas. I didn't think much of that until another person of the same persuasion pulled into line behind me, with bananas. Before I had checked out, a third entitled person carrying bananas pulled into  line, and before I left the store, someone equally entitled was approaching the checkout with bananas.

Have bananas become a thing?