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.

Cures worse than the disease? Depends

The AARP is always anxious to look out for its members. The other day they posted the linked information about drugs that can cause memory loss. No surprise (I read this stuff too, and for a living), the Big Two for TN (carbamazepine and gabapentin) are right there. So is clonazepam (Klonopin). AARP lists this with its antianxiety meds, but it is prescribed also for its potent anticonvulsant properties.

Nice advice from AARP, but beware: the article is loaded with weasel words: "many patients" is prominent in the discussion of TN meds. I also take a statin and a beta-blocker, without which I wouldn't be around to write this.  Considering that I ring the chimes for five of these medications, it's a wonder I can remember my name.

Now, what was I saying?

The ski area business model

A Reddit follower has been shocked, truly shocked, to find out that the overall sticker price for his emergency appendectomy was over $55,000, and that his (presumably) bargain-basement health insurance left him with a tab of about $11,000. He says he never before realised how much health care in the US of A cost. No doubt it didn't help to hear, from the provider and other sources, that his piece of the action is negotiable and that hardly anyone pays full price. This is why ski area lift tickets cost so much: the sticker price paid by the innocent minority has to bear the cost of the discounts given to the well-informed minority. Our hero was essentially invited to dicker instead of posting his original bill on Reddit, and of course he didn't know he could do this until after the hospital sent the bill.

This is the reality of my working life. In fact, before the holidays I was working something similar. Except that the payer was a client who was shocked that a spine procedure came with a sticker price in the same price range as that Reddit naif's appendectomy. After all, the client said, didn't we just negotiate a much lower price with the surgeon?

We did. But if you need a medical procedure and you settle up with the physician or surgeon, or with the hospital, you're no more than halfway there. In the land of the free the hospital and the physician bill, and get paid, separately, with very few exceptions. I fear that startled Redditor is in for another shock when he gets the surgeon's bill.

Now, consider how all this plays out for the chronic pain sufferer. It's no longer about one emergency procedure. It can often be about a lifetime of physician visits, punctuated by elective surgery procedures. This is the sort of person that pre-ACA insurers did not want to cover. The only benefit is that if you deal with chronic pain, your naivete goes out the window fast. You're obliged to become actively involved in your treatment, studying what ails you and querying your clinicians at every step. Instead of being shocked by an invoice, you anticipate the grand larceny that is American healthcare, work out in advance what you can pay, and shop around for the best deal.

Is all this necessary? No. Especially it should not be necessary for patients who may be spending much of their lives distracted by pain. Will the ACA fix it? Not entirely, because what we've done so far is only a tentative step toward a system that removes all the incentives for charges that are completely out of line with actual costs.

In the meantime, one can only hope that more people get the outrage.

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).

More tiresome TN shit

O bliss, oh rapture! We have definitely made a trigger transition from cold as primary to eating as primary. That's not to say cold plays no part. I was out with the snowblower a couple of hours ago and have spent most of the time since paying for that necessary indiscretion. That's not much compared with episodes after half or more of my recent attempts at consuming anything.

No cloud without a silver lining, though. I could stand to drop a few pounds and I could stand to reboot some of my less productive eating habits. When one can't eat anything without risk, a reboot is gonna happen.

There's a good deal of me between now and starvation, so there are opportunities to figure out if there are things one can eat successfully. I do have better luck with breakfast than other meals.  Today we went out and I managed a veggy omelette, which is an encouraging sign. Unfortunately, some of us find oatmeal, cream of wheat and like rather tedious as a regular diet. It would be a very good thing if one outcome of this breakthrough is a shift to a larger, healthier and less frantic breakfast and a humble (if varied, puh-leeze!) supper.

Oh and yes, I've probably heard all the Internet woo there is on the subject. One works, says I, and that is treating the trigger areas with strong capsaicin solutions. A neurologist I consulted believes it offers an actual pain centre to a nerve that is running itself ragged looking for a stimulus that isn't there. Eventually, one burns the skin off the face and it's necessary to change tactics.

As for the rest, whether surgery or woo, show me the Carfax: clinically tested evidence that a treatment not only works, but keeps working indefinitely, doesn't create conditions worse than TN, and doesn't drive away the rest of the human race. (I know of one very effective orally-administered treatment that can be smelt 50 metres away, making noses run and eyes water.)

That's all the news from the front lines. Be kind to people with chronic pain: we are all very busy staying sane.

More proof

All of us who have not made a career out of spending vast amounts of money to conclude the obvious have clearly wasted our lives.

What...there's a link between chronic pain and suicide? No, really? How much did it cost to figure that out? And, having figured it out, why is it that these Einsteins can't figure out why chronically ill people kill themselves?

With the Beast knocking on the door again, this topic gets to be a staple of my daily introspection. Medicine does not want to fix many forms of chronic pain, but it does want to prevent people with chronic pain from fixing it for themselves. Medicine offers medication that turns them into marionettish travesties of the human beings they were. This supposedly makes them better, and adds another half dozen pills to the daily regimen. I take 18 a day, which seems like quite enough.

For people with intractable chronic pain, suicide is just a treatment option. If you want to think of suicide as something to prevent, more pills don't help: only taking away the pain helps.

Giving the chronically ill their lives back seems like a solution to me...but I don't make my living off grants, so what do I know?