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?

Sunday, April 27, 2014

Conditioning for marathon viewing, 1

It has been a few years since the last time I went to watch the Boston Marathon, and after a sedentary winter, I found I was in less than ideal shape for it. There was no question of not going, because my daughter was running.

All my daughter's athletic life we have had to deal with the corrosive cynicism of other adults who assume that a) we forced her into this or b) we're bragging about whatever she does. Somehow this  cynical response doesn't come into play if one's child is a doctor, lawyer,  computer scientist, chef, ambassador or leader of a religious revival. No, only athletics. Excuse us for talking about it, but an athletic child can no more help being athletic than she/he can help breathing. It's a major part of that person's life, and often parents either talk about it or say nothing. So if you don't like it, fuck you.

In this case, our child is past 30, and has wanted to run Boston since she was 11 or 12. She is long past the point of worrying about parental approval. Like her other athletic undertakings, it's one she chose for herself and has pursued for her own satisfaction. Neither of us is a runner, and we both find the wish somewhat incomprehensible. I've done bicycle and Nordic ski races, so I have an inkling of what goes into it, without getting why someone would subject their lower limbs to 26.2 miles of constant pounding.

Em's forte isn't speed but endurance and preparation. In the language of coaches and trainers, her muscles are slow-twitch dominant. She's run half a dozen marathons over the last ten years, and more shorter races than I can easily recall, so she knew what she could count on accomplishing and what she might be able to accomplish if her luck was in. A personal qualifying time was a bit out of reach, so when she had a chance to run for a charity, she took it, prepared for months, and raised more than the necessary funds.

When she arrived, some days ahead, we were recruited as local talent, soigneurs and scouts. This included dietary planning, scouting the course, and reading everything we could find written by people who had run the course. In the course of this we all got some perspective on the event from non-New England runners. It's popular amongst area residents who aren't New England natives to disrespect any New England athletic activity as overblown and comparatively insignificant. That sentiment is greatly misplaced in the case of the Boston Marathon. Runners from every part of the world come to this race to test themselves on a course that is challenging in ways one can't appreciate without actually running it. The race lives up to its hype. Em, having run marathons in widely scattered locations, also confirmed that the crowd in Boston is more involved and supportive than what she had previously experienced.

That gets me back to spectator conditioning. Em's bus left South Boston about 0600. That meant we got up at 0415 to pack and make it downtown. The parent's plan was to go back to Wonderland, take the subway downtown, get breakfast and a rest room.

Downtown Boston is chronically short of rest rooms. It is especially so at six-something a.m. Thus we were able to get breakfast, but then had to walk to the Pru before we found open johns (all the race Porta-johns were still locked). To get there, we had to negotiate all the monuments to Boston's post-bombing (over?)reaction* until we found relief at the Pru and an open Green Line station at Hynes. By this time our old legs had walked some little distance, and we weren't even in the agreed-upon viewing location yet. Not by 'arf.

*It is worth noting that, up until 2013, Boston was one of the few marathons anywhere that didn't forbid unattended gym bags or backpacks. A little caution in advance would likely have forestalled the need for what may be an excess of caution after the horse has left the barn. Just as a little cooperation between FBI and local police might have forestalled the brothers Tsarnaev from blowing up something else.



So, yesterday I had a good day after a run of not-great days, which was spoilt by a crappy (Mankoski 8) evening. In the course of my usual right hemisphere monologue, it occurred to me that this is something like my yoga.

The objective of the exercise is not to be well. That doesn't seem to happen with TN. The purpose, an important one, is not to succumb to the pain. Remember, I mean "succumb" literally. To let the unaffected hemisphere do its work, enabling some peaceful thought and walling off the Beast, one has to banish any thought that doesn't accomplish those ends: sometimes, it's banishing one at a time. One of the irrelevant thoughts is suicide.

Oh, my: there's that nasty word again. Just to repeat, for people with trigeminal neuralgia, the point comes, and comes early, when suicide is just another treatment option. The point is, when one devotes all of one's neurological resources to keeping the pain that swallows up one hemisphere of the brain from washing over into the other, suicide stops being a treatment option: it's just another distraction to be set aside.

These are inevitable reflections at the end of my fifth month at the end of my twelfth year entertaining this  creature. I once described this as hanging from a roof gutter, trying to go along it finger over finger to safety. Sometimes you just want to let go. Sometimes you keep trying for safety because you remember what safety is like.

The way my TN manifests, safety is a tease. No matter how rotten the episode is, it will be like  it never happened in 12 to 24 hours. Until the next one...and the one after that, until a nice day comes when it doesn't come back. Then for a few months there's only the odd jab and stab and you get to thinking it won't come back. You never want to think that.


Back on my own machine

Various news. First, the Beast is gone away. That is, as gone as it ever is these days. The winter I've had gives one perspective. The past couple of remissions have been punctuated with the classic paroxysmal stabs that shoot right through the left hemisphere, and are gone before I can do anything medical about them. Compared to days with the same thing running non-stop for eight to twelve hours, these sucker punches are a picnic. We take gratitude in what benefit we can achieve.

Next, I'm writing on the netbook. I'm pleased about this for a couple of reasons. I like the little thing, of course. Parts cost about a third what a new Chromebook would cost, and a tenth the cost of the average tablet. And I don't have to drag my greasy fingers over the screen to make this work. Finally, I did the repairs myself. This is no small thing for someone who spent his childhood being railed at for being awkward, clumsy, mechanically hopeless, etc.

For my next trick, I'll finish the password changes for HeartBleed defence where necessary. By "where necessary" I mean it's valuable to do some homework and identify sites that are not and never have been users of OpenSSL, and update those passwords on a less frantic schedule.

Saturday, April 05, 2014

Mad as hell

Congress and the POTUS, in their wisdom, have once again "delayed" implementation of the new diagnostic and inpatient procedure coding system, ICD-10, by a full year. The coming deadline, October 1, 2014, was sworn by CMS to be what is called in IT a "drop-dead" deadline.

The entire idea of modernising the system is anathema to certain well-funded interests in the medical industry. Evidently those interests have more clout than the interests who think it would make a great deal of sense to have the same system as the rest of the world, because they did more than kill the deadline. They turned this reform into a political bargaining chip, and made it obvious that implementation can--and probably will--be delayed indefinitely.

The other day, whilst having a beverage with friends not in health care, I alluded to the subject. This led one of them to indulge in mockery he had picked up somewhere. He had heard that the new system was full of ridiculous codes, far more than necessary.

Let us back up. This system, called the International Classification of Diseases, began as a method of keeping track of medical statistics, and broadened into one system for identifying diagnoses and another (used in the US for inpatient settings) for procedures. The details of the system vary from country to country, but the codes are much the same. When an American tells you that ICD-10 is absurdly detailed, it's a bit of American arrogance at work. To use my friend's example, why is it necessary to have a code for parrot bites? If he lived in a country with wild parrots, he might not ask. Those charged with tracking disease need to keep track of such things as psittacosis and avian influenza. The 35-year-old system America clings to only allows us to code "open wound." If the patient later presents with either of those diseases, it can be a mystery where it came from. Likewise, if you're Australian, codes that specifically identify a crocodile bite experienced whilst surfing is very important, as encounters between surfers and sea-going crocodiles appear to be on the increase in that country. Such things involve the integration of the actual diagnosis code with an entirely separate class of codes specifying where and why an injury happened or a disease was contracted. This is not new. It's been a feature of ICD coding for 50-plus years. My friend is keenly interested in statistics involving accidents between cars and bicycles. Given that cops (around here at least) are notoriously slack about reporting the details of such accidents, where does one think those statistics come from? They come from the coding of the circumstances of an accident. ICD-10 introduces a greater degree of granularity that is more and more needed in a complex world.

Since it appears the forces of reaction have won this one, let us think about why they are opposed.
First, it's one more change being presented to people unable to handle change. Second, it costs actual money up front, whereas the deficiencies of the present system cost theoretical money later--as in a malpractice suit that may or may not involve deficient diagnostic records. Third, physicians and surgeons have always had a problem understanding coding. This change places much higher demands upon clinicians to put detailed description in their notes. I find it hilarious that American doctors, who are seldom deficient in ego, are tacitly admitting that they can't learn a system that millions of secondary school graduates have learnt and are using around the world. So much for their conceit.

Since the next system, ICD-11, is already in beta in other countries, and since ICD-10 is already 10 years old, there are those who ask why the US shouldn't just skip to ICD-11. Short answer is learning curve. The principles and underlying technology of ICD-10 and 11 are much the same,  although 11 takes them several steps further. Both are very different from ICD-9. Going from ICD-9 to ICD-11 is like changing, in a few weeks, from Ancient Minoan to any modern language. The present transition isn't nearly as daunting (unless you're a doctor). Keep in mind that those who oppose this change, and have now smelled blood in the water, will continue to oppose any transition.

So when you read snarky remarks about ICD-10, and are asked to pass them on, remember to ask cui bono? And don't be made a tool of reactionaries. The current decision is, as 3M Corporation says in its press release, a vote for the past.


Tuesday, March 04, 2014


One of the most formative periods of my adult thinking was Russian history during my junior year. It was brilliantly taught by a Nazi-era German emigre, who refused the then-current line that all you needed to know about the USSR was found in the Soviet rubric. He showed instead how the behaviours of the Soviet Union mainly formed a natural extension of centuries of Russian thinking.

Evidently, this is still an unpopular point of view in Washington, which is too bad. We could have avoided much of the Ukraine mess by heeding my professor's lessons. In summary, most of what Ukraine has done since 1989, and much of what we have done in support of it, touches Russian where it has been raw for 500 years or more. The only wonder here is that Putin didn't send troops sooner.

Item: Someone in Washington recently called Putin a "narcissistic autocrat." That's perfectly true, and Putin is popular in Russia despite his failings because of it. The country regularly throws up narcissistic autocrats as rulers because they are a perfect reflection of a country which is narcissistic and thoroughly paranoid about all its neighbours, but the West in particular. This viewpoint has been embedded in the culture for over 1000 years, since the days of Kyivan Rus.

Item: That's right, Kyivan Rus. Ukraine isn't some foreign entity swallowed up by Russia Cold War style: it's the original Russia. When its ruling house was conquered by upstarts from Moscow, the upstarts were at pains to assimilate into the older nation, not the other way around. Western initiatives in modern Ukraine cross a hot, red line with Russia. They feel profoundly threatened by nearly every move a tone-deaf US has made in Ukraine since 1989.

Item: Borders in Eastern Europe have long been relatively abstract, and no borders have been more abstract than Ukraine's. It has had the geographic stability of Silly Putty since the Middle Ages, chiefly because it's steppe and swamp: Perfectly flat and defensible only along its rivers, and those too became liabilities when the Vikings showed up. It's hard unless you live there to put a finger on the map and say "this is Russian and this is Ukrainian." It is that, along with the ill-feelings generated in the 20th Century, that makes dividing Ukraine much more difficult than it seems

Item: To understand why Ukraine is independent now, you have to go back to the 1917 Revolution and the expectation of emerging nationalistic groups that they would be able to form their own nation. Soviet Russia didn't see it that way and kept control (especially brutal under Stalin) until the Nazi invasion of 1941. Encouraged by the Nazis, large numbers of Ukrainians sided with the invaders, which Russians elsewhere have never forgotten nor forgiven. Collaboration was nowhere more thorough than among the Crimean Tatars, a Muslim nationality of mixed origin. After peace in 1945, the entire Tatar nation was exiled to Siberia. They have returned to Crimea in large numbers since 1989, and will not welcome Putin's Russians with open arms. Their presence, and Russia's sorry record with other Muslim nationalities, explains to some degree why Putin is walking on eggs in Crimea.

Item:  Ever since the Princes of Moscow began running the show, one standing obsession of Russian foreign policy has been securing of warm-water ports. Although Russia now controls most of the northern coast of the Black Sea east of Crimea, the obsession originally focused on this peninsula, and Russia's naval presence on the Black Sea centres there. It's hard to imagine what possessed Russia to make even the compromises they did with Ukraine over Crimea.

A commentator I heard this morning was astonished by the anti-Western feeling he encountered in his recent trips to Moscow. I'd say that's the rule, not the exception. The West has been dense about this since the days of Peter the Great, and remains dense. Any Western policy that doesn't take this and other Russian sore spots into account is likely either to complicate matters or make them much worse. We'd do better to make a bigger effort to listen to both sides.

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Saturday, March 01, 2014

Lost afternoons and such.

Those who examine the Mankoski pain scale will note that level 10 is simply "unconsciousness." The difficulty with defining something like this is, of course, that one is unconscious. It is not really possible to distinguish between falling into blessed sleep from your meds when you are marching through Mankoski #9, and losing consciousness due to pain. You are out like a light and not taking notes. At any rate, that's what I did with my afternoon.

Either way, you pay for your relief with the notorious pain hangover. For those who haven't been around here before, or experienced it, this is what it says it is. After you have been shaken around like a puppy toy by whatever your chronic pain is, and you fall asleep/pass out, when you wake up you feel exactly like you have a hangover without having had the pleasure (however dubious) of having been drunk. That's what I'm doing with my evening.

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Thursday, February 27, 2014

Good stuff and debates

Maybe we'll deal with Zohydro in a bit. But remember, the chronic pain I address most is my own. It happens that you might as well treat TN with M&Ms as with opiates, and you'd enjoy yourself more. So we're coming back first to anti-convulsants.

The default medication for trigeminal neuralgia is Tegretol (R), aka carbamazepine: for good reason. It works. Maybe a third of patients who present with TN actually achieve an indefinite remission. It has some benefits for most of the others.

Like most wonder drugs, it has down sides. The first is that it has a discouragingly long learning curve, so to speak. That is, it takes a lot of time to develop tolerance and find the right dose. The maximum dose most often cited is 1200 mg daily, although some clinicians take it to 1600. Most physicians would like their patients on less than the maximum because of the second down side: it can cause permanent liver damage. To find the sweet spot,  the dose that works but causes the fewest side effects, the patient must willingly reduce the dose, knowing that the outcome will be breakthrough pain, the increase it until you find the dose that contains the pain. That is not a fun exercise.

I've been on a maintenance dose of 700mg for years, increasing to 900 during breakthrough periods. As an "involved patient," I have licence from my PCP to experiment when things don't work. During the latest breakthrough, neither the 900mg nor the crisis dose of 1mg of clonazepam got the job done. However, 1000mg will, along with the clonazepam. I also have taken a maintenance dose of 1500mg of gabapentin daily for some years. My PCP wanted it to be 1800mg, but at first I found that gave me the trots, so we cut it back. I guess I've been on it long enough, because I've found that I can tolerate the 1800mg dose now.

Experimentation means that I don't have to run to potentially addictive doses of clonazepam, but can put the burden back on the safer anticonvulsants. It also shows that the maintenance doses likely need to increase by these relatively small increments permanently: at least until that doesn't work any more.

The debate part of the title lies ahead. There's a clear connection (at least to me) between the worst breakthroughs and dental work. To the clinical people I work with, the mechanism is obvious. Dental work = severe stimulation of the trigeminal branches innervating the jaws=breakthrough. My dentist's hygenist did her best, knowing the problem, but it still happened.

There is medical debate about whether major dental work can initiate TN, so here's where the involve patient may have to administer a dope slap to a neurologist. We're not talking about initiating TN. It's been there for 13 years, and this year it's been hanging around at a barely tolerable level since October. We're talking about the likelihood that messing around the teeth has caused the current outbreaks, which are, objectively, intolerable until the various jolts of medication take effect. In treatment of any chronic pain, it's important for the patient to be patient, to make sure that you and the physician are not talking past each other. Physicians are busy people and often accept the easiest explanation. I doubt I'll have trouble with my PCP, who has been on this case for a long time, but I'll have to be on my A game if a new neurologist comes on board.

Ah, tis an adventure!

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Saturday, February 22, 2014

Ringing the chimes

The following is the description of Mankoski pain scale levels 8 and 9:

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

I was  en route  to a modest libation in Boston when the Beast came to call.  It started about halfway to Wonderland station,  and I was stupidly deluding myself that it wouldn't get worse. It did. I pulled over, sent my regrets to my fellow quaffers and headed home. By that time I was blowing through level 8 and heading for 9, with about 25 minutes to go to get home.

The trouble with this, aside from pain that speaks for itself, is the agreement I made with myself several years ago. As I've said here before, when you have TN, none of the horrible labels people put on suicide really matter. It's just a treatment option. But my agreement is never, if possible, to put myself in a position where I might take someone else with me. It is a very short step from level 9 to level 10, which is unconsciousness. While most of my functioning right-brain consciousness was bearing down on just getting home, a small part was reproving myself for breaking the agreement. I could have-should have-turned around sooner. Too late for that, brain said: just keep enough concentration going to get home safely.

The wise head might say, "just stop and get help." I refer you to the description above: at 9, one can't talk, only moan involuntarily from a face contorted in the famous tic. From experience I can tell you that scares the crap out of laypeople. It's likely to get you a trip to the drunk tank, not the ER, from the cops. I should probably get a bracelet.

The self-reproach was enough of a distraction to get me nearly home, where the delirium almost caused me to miss my street. Five hours later I could take soup, lemonade and a heavy dose of anti-convulsants. Now, by the next morning, I can eat a little and write this.

Lesson learned. The current breakthrough, which seems to be courtesy of the dentist, is the worst I've had in several years. That means no non-essential driving during the six to eight weeks it will take to get this under control. That sucks, because I'm already fed up with semi-shut-in life. TN's remissions encourage false optimisim, and that makes us feel like this sort of thing won't happen again: but it always does.

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Monday, February 17, 2014

Ungentle dental

Not going so far as to retire the Zombie Bunny hat, but air changes are taking second place to dental triggers in my TN tale. This is a classic trigger and a grim one. Before medicine discovered the value of anticonvulsants in controlling trigeminal neuralgia, people with this problem commonly starved to death. That gives the uninitiated an idea of the kind of pain we're dealing with: untreated, one would rather starve than take on the pain.

Just now, I wish I could get that reaction going, because I have an over-abundance of reserve calories to work through.

This isn't entirely new to me. It has shown up several times in the aftermath of breakthroughs started by temperature. This year, for the second time, it has started following a trip to the dentist. I've always found the "electric shock" analogy a bit inaccurate when describing triggers in the nerve's temporal branch.* It is very accurate when discussing TN in the maxillary and mandibular branches.*

The other day, during my usual mental retreat in an episode, another unwelcome analogy occurred to me. I recalled seeing some sword and sandal epic as a kid in which the unhappy inmates of a dungeon were tortured by having hot lead dripped onto them. This came to mind because something very similar happens along the part of the mandibular branch that descends from the Gasserian ganglion*: drips of red-hot pain every few seconds. This sensation is new to me and obviously very disagreeable. It's enough to distract one from the trick of retreating into the unaffected hemisphere for relief.

Dental triggers carry with them the possibility of year-round entertainment by the the Beast.  Oh joy.


*This stuff is for people up on their medical terminology. If you aren't, google it.