Adventures in meds

Being in the trade, when I start a new medication I read the list of side effects and apply what I read with discretion.  For people on anti-convulsants, this isn't light reading. When I started Gabapentin (aka Neurontin), for example, I found the list very nearly filled one side of a sheet of paper: single-spaced.  Much the same is true of Carbamazepine (aka Tegretol), the default drug for TN, except that the list is a bit shorter. After several years on these rather useful drugs, it's easy to forget that volume of precautions, until the stuff turns on you.

Last Friday I went for my frequent Friday ritual of sharing a beverage with the regular crew. The weather was vile and my face began to show signs of annoyance, so I took a sliver of the Klonopin, trusting to past experience that such a small dose would get on well with a social quantity of refreshment.

Klonopin, yes: the others, not so much. By the time I got home I was feeling most unpleasant. The  token Klonopin had merely postponed and modified the episode, which is a risk at low doses. But also,  I got blindsided by the most-discussed side effect of Gabapentin, a form of vertigo unique to this drug and widely called "the goofies." This may or may not have been associated with my socialising, since the goofies can occur at random.  That's one reason they're such a regular topic of conversation. The other is that abusers of this drug actually want to feel this way: go figure.)  Better to err on the side of caution, though. This would have been a very different business if I had not got home when the goofies arrived.

Adjusting to this new world of enhanced TN is somewhat trial and error, I'm finding. Henceforth, if I pub-crawl, it'll have to be on shandies, Arnold Palmers and wine spritzers, max. Or I could belly up to the bar and order a sarsaparilla, just to see the bartender's reaction.

Chronic geezerism

These days, I make my living as a medical coder. Whilst most coders work for healthcare providers, trying to come up with the most accurate possible description of diagnoses and procedures, in order to earn the provider the most money, I do the opposite: read their claims and pick them apart, in order to save the payer the most money possible.

All that is back story. The result is that I see a good many treatments in an average week, some again and again. At 60-something, I figure I've earned the privilege of offering unsolicited advice, especially to younger people.

Today's unsolicited advice, based on my work, is: take care of your back. This is especially true if you have a physically demanding occupation. Why? Because regardless of what anyone tells you, once you've sustained a serious neck or spine injury, you'll never be the same again.

Brain injuries get the headlines, and with good reason. However, it takes much less to damage that slim line of bone and neural tissue that connects your brain to your pelvic girdle. Despite  more, and more costly, measures to repair damage along that line, few of those measures have lasting benefits. Your spine has a lot of parts and it carries an enormous amount of neural traffic. That means that no matter how skilful your surgeons, no matter how sophisticated the parts implanted in there, things can go wrong. And they do: more often than not.

When they do, spinal injury patients are quick to fall into the worst trap of modern medicine. Physicians and surgeons exist to heal, to cure, but they are mortal and fallible. One of their fallibilities is a resentment when they are unable to heal their  patients. Those who cannot be healed can be seen as a rebuke to the entire  profession, and it is very difficult to educate that attitude out of medicine.

There are now specialists in the management of pain. Many are dedicated and sincere. Others are simply making a living out of people with chronic pain; a living that depends on dependency. Oddly enough, sullen surgeons angry that their treatments haven't cured a patient, and the less ethical sort of pain management specialist, have one thing in common. Both will happily pump the patient full of opioids, convincing themselves and the patient that there has been a cure.And the curve of the patient's dependency goes up, and up, and up.

We get a few of that sort in the TN world, but I prefer the approach I've gotten. (It's one I've probably elicited by showing clinical knowledge.) Opioids, as I've pointed out before, are useless for TN; the physician can't hide behind that screen. I'd rather hear that what I've got can be managed, but not cured, at this stage of things. I'd rather be reminded that abusing the drugs that can help me will compromise the management of my pain, and that the list of drugs that can help me is disturbingly short. I'd rather be encouraged with the knowledge that what I have won't kill me, unless I do it myself.

All too often, people with chronic pain from orthopaedic trauma don't get this treatment. Opioids work, then it takes more to work. Often, it isn't until the patient  is clinically addicted that the physician tries to put the brakes on the habit they have helped to enable. Grumble grumble damn grumble. The blandishments of marginally acceptable therapies and outright woo are better only because they don't make the patient clinically addicted.

Respecting your spine is a small price to pay for missing out on this part of the adventures of clinical pain. If I've missed your piece of the party, don't worry: we'll get there sooner or later. Ramble done.

More truth...

Back in my high school Honours English class, Miss Kendrick did her damnedest to get us to dig into the deeper levels of literature, from Beowulf to Faulkner. It's the former that's on my mind today, a leap from the Harrumpher's comment.

Anyone who has encountered Beowulf, whether in translation or in Anglo-Saxon, has also encountered its literary studies. Chief among those is the debate over the symbolism that goes with slaying Grendel only to be attacked by Grendel's mother. I found it odd that my friend chose that particular analogy, because living with many forms of chronic pain is a lot like that. (Not to say that Anglo-Saxon literary studies are a chronic pain, but never mind.)

People with chronic pain have to choose among the options of:

• Feeding a warrior or two to the monster every night and having an otherwise normal kingdom
• Bringing in a hero to kill the creature without thinking out the possible consequences
• Then killing the progenitor of the monster, again without contemplating the outcome.

It's a three-way Hobson's choice.I think I'll revisit this when I've had a chance to poke around those literary studies and draw clearer parallels, but there is something there.

Just when I thought my beast was off on a new tack, I had my usual sort of visitation last evening, up to Mankoski level 7 or more. Trust me: if you're going to deal with a chronic pain episode at that level, by choice you do want to do it just before bed, so that your heavy meds plus the distraction don't make you a danger to yourself and others. This was the first really intense one of this season, and I had to refocus on management tactics I'd neglected for a few months. I did fall asleep (I think, as opposed to passing out) and by the time I woke up, three or four hours later, things were under control.

I believe I've mentioned here before that the sole blessing of TN is that it seldom interferes with sleep. That's seldom: when it does creep in, stab you and wake you up, the experience feels like a real cheat.

And now for something completely different

For years, the course of my TN episodes was perfectly predictable. Stimulus, followed by a brief period in which one knew the thing was starting, followed by the episode with the lancinating pain every half-second to ten seconds, followed by the hours of "pain hangover." This went on for six weeks to three months, then went into remission, usually when the weather got better.

Over the past year, I've had brief, noticeable  pain episodes  more or less  at random. Taken individually they have been just as acute as the previous episodes, but I've long believed that frequency and duration was what made TN such an interesting guest.

Today (11/19/13) I had two very acute pain episodes about 20 minutes apart. There was no warning save the dull roiling in the nerve that I live with most of the time, except when the weather is especially nice. Both spoilt my hypothesis, because they struck with exceptional  intensity, BAM! and were gone. This is much more in line with typical TN experiences than where I've been.

Thus far it's no different, save in intensity, than my random episodes, except that these two left me with the pain hangover...still have it 13 hours later as I write.

I've spoken with a number of clinicians who are aware of the hangover phenomenon, and agree with my description that it is exactly like having a hangover without the previous pleasure of getting drunk. Nausea, not so much, but one is groggy, all-over head-achy, sensitive to sound and light, and one finds it hard to concentrate. It seems to be a pretty general feature of the disorder, and one which undermines quality of life nearly as much as the episodes themselves.

Seems like a suitable topic for a study. Meanwhile, back to the special K.

Welcoming myself back

Well, here's a singular occasion to renew this business: the return of the Beast. If anyone's keeping score, that's two significant breakthroughs within a week. Not too much, considering the creature's batting average has run to one or two breakthroughs a day in recent winters. It's still odd to me that this nasty visitor prompts me to document its progress, considering that another nasty (depression) has kept me quiet.

We'll see where this goes. One of the side effects of this circus is that, when this isn't going on, it's peering over your shoulder, reminding you that there will be more visits. However, for the past couple of years my nasty friend has never entirely gone away. I believe this is called progression. One feels adrift in a medicated lifeboat.  (Consider that my two default medications would knock most people off their feet in the doses I take. And when I'm on my breakthrough drug, I can't legally drive.)

This brings us to another side effect, that of people peddling positive thinking, nostrums, woo and snake oil to people with chronic pain, people who are ready to try and believe anything if it will just make it stop. Even if one knows that all they have to sell is the placebo effect, that can seem pretty damn good at times.

Anyone with chronic pain will tell you that everybody has a "cure" for you, not just the snake oil salespeople. If one provides a home for chronic pain and is thoughtful about it, one learns to distinguish between treatments. There are many so-called cures that can be helpful in managing pain, which isn't the same as a cure. It would be easier to take these treatments seriously if those pushing them would be more modest about the possibilities.

Ideally, life with chronic pain disorders means being realistic, being an involved and informed patient, prepared to cross-examine physicians and surgeons, and prepared to take what comes with good or bad grace.

Not everyone is cut out for that. Americans have developed a cult of dependency upon caregivers that I think is more troubling than controlled dependency on medications. People who have had their balloon popped when dealing with a physician may have no trouble transferring their dependency to much less qualified caregivers willing to feed that dependency. This equals harvest time for the woo peddlers: more so when they latch onto disorders which have spontaneous (and impermanent) remissions that can seem to vindicate their "cures."

I'm no hero about this. Up to the time this began, I loved winter sports and was outdoors in winter as much as I was in. All that is extreme high-risk now and I resent it. This winter, I'm at least attempting occasional steps outdoors, as long as what I do doesn't maroon me or inflict sometimes troubling episodes on others.  One has to do something.

Hereafter, I think I'll concentrate on chronic pain matters here, rather than rambling. I deal with this stuff for a living now, so I have more than my own adventures for fodder. Suggestions for topics are welcome (which shows there's someone out there).