Indefinite

My town's legislature is an open town meeting. When a question comes before it that the meeting, or actually its leadership, aren't quite ready to address it is "indefinitely postponed." This says that the question is a good one whose time has not yet come.

The question of my TN surgery has been indefinitely postponed.

I'm for this, and I didn't even have to argue for it. The neurosurgeon understood that as long as my TN is contained  within tolerable limits by drugs, no carrier in the US is going to cover surgery.

Contained is the word. My present trifecta of drugs is doing a good job containing the TN. I'm having to use Clonazepam very rarely, which is a good thing. Alone of my medications, Clonazepam can create clinical dependency. I didn't know that I had turned the corner into dependency until I began taking Baclofen and found that I couldn't take both at the same time. The pair of them knocks one out so fast that one barely has time to lie down. Cutting back K had to happen, which led to a fortnight of interrupted sleep and extreme crankiness. Not much of a dependency, for sure ( I hadn't increased the minimal dose), but enough to be a warning. One neurosurgeon I saw called Clonazepam "a witch." I know what he meant now, and I'm back to using it only when the neural pot is about to boil over. Trifecta + K + T=containment (where T is my absurdly increased pain threshold). 

It's all a high wire act in which every step has risks. I've hit the safe maximum on Carbamazepine and Gabapentin. It's a question for my physician whether running up the Baclofen would be any help at all. Clonazepam is addictive. My pain threshold is now so high that I run the risk of sustaining serious injuries without even noticing them.

I had the latest instance of that a couple of weeks ago when my platelet donation failed. Failure of the stick is an occupational hazard for platelet donors, because it involves needles that are nearly the diameter of the vein itself. I knew there is always a risk of a hematoma extensive enough to cause at least discomfort after any blood draw, and I knew what to do about it. 

Several days after this failed draw I noticed that I had a pretty extensive hematoma. It was big enough to cause discomfort at least. I felt nothing. Up to a point, pain can be your friend, but that friend is gone. It's hard to remember to check visually after any injury when every accident seems like an incident.

Let's not forget that people with chronic illnesses will be the first under the bus when the Trump Congress gets busy dismantling Federally subsidised health care. I don't know what my personal pharmacy costs every month. Unlike most people, I have the tools to find out, although even they are mostly linked to Federally mandated rates. When I have a moment, I should look at this.

And no, MassHealth and similar state programmes won't help for long. Once the Affordable Care Act is gone, and the Tinker Toy Trumpian "substitutes" are in place, there will be a seismic shift in coverage for care. Programmes like MassHealth are likely to be snowed under as carriers, especially from neighbouring states, dump their chronically ill  into them. (That happened before ACA to a small degree. I worked at MassHealth for a time, and screening the dumping attempts was part of my job.) There will be more on that later. 

Congress is doing magic that they don't understand. Once they have done it, neurosurgery in this country will be priced off the table, and it's unclear whether my meds will be similarly priced out.

It's a bleak future. For those who try to live with a chronic disorder, it may be bleakest of all.

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.

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!

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.

 

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?

Something old

So instead of munching chips as the AFC championship starts, I'm eating soup, courtesy of the Beast. Things haven't been quiet  lately, merely dull, but the last two have been right up there: as in take the meds, go to bed and roll with it until the Klonopin knocks you out. Make observations in the right hemisphere.

Things are definitely going as they did in the beginning, before meds.  After some prelims in the maxillary branch,  the serious pain arises in the temporal branch, as it almost always does for me. But instead of dropping to the Gasserian ganglion and spreading out, it rockets through the ganglion into the main trigeminal nerve. The pain sensations then shoot along this line every 5 to 10 seconds, with the duration increasing until they almost, but quite, blend together. This is typical and a lot of fun.

Of greater concern is that this is the second Mankoski level 7 to 8 episode in a row. Until now, the nasty thing has just been playing with me,

Tic tic tic tic...

The other official name for trigeminal neuralgia---apart from the grim "suicide disease" label---is tic douloureux. Descriptions of the tic usually get sidetracked into describing TN as a whole, so I'll fall back on my own experience. Naturally, one does not stand in front of a mirror during a pain episode, so it's hard to say what this part of the tic looks like to others.  What I had taken to be the whole of the experience was what happens when an episode is producing Mankoski level 9 pain: clinically unendurable. In those blessedly rare episodes I have felt a twitching tremor in the affected side of the face. I'm glad to be alone when this sort of thing is going on. Apart from an uncontrollable desire to moan and lie in a fetal position, it's really too much to think that one's face resembles something out of a horror movie.

Recently, I ran across an article (which I neglected to link) that offered a broader definition of the tic element. It is, this author said, not just the tremor, but a characteristic scrunching up of the face in response to the pain. In short, the effect of TN is significantly to distort the features during the periods in which it is going on.
It included an image which I immediately recognised as my face in those happy times when I'm getting whacked by the Beast two or three times a day.

Faces tell tales, they say, and apparently the tale they tell for people with TN is what's going on behind the face. When The Beast has been shoved back into its cage, for me when it's warm and pleasant and even the stray breezes are good, people often comment on how much better I look. Evidently, that happens because they are now looking at a face instead of a tic.

I'm trying to relocate this article and I'll post a link if I find it: even though the knowledge offers one more reason to run and hide.

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.

Observing steps backward

The distraction, apart from Thanksgiving (no episode until we got home, fortunately), has been a protracted feline adoption. It's not clear who adopted whom here, but we're a trial week.

Interesting developments on the TN front. The manifestations now are more like they were before the diagnosis. That is, Mankoski level 4 to 6, which by usual TN episode standards is almost wussy, but unlike the higher episodes of recent years, they last for hours and rapidly involve the main afferent nerve (that connects  the hardware to the spinal cord). This means pain around and behind the ear, which at the moment is penetrating and distracting without being excruciating. Like a combination of a bad earache with a bad neck sprain. Fun.

I think I'll have to go bother my PCP soon. This is an "atypical manifestation." Because it seems like one is moving backwards, one has to consider whether the meds aren't working as well as they should. This time of year I run up the Tegretol from 700 to 800-900 mg, but this year I'm being cautious. My PCP wrote a second scrip for this that my pharmacist won't honour, because they can't fill two scrips for the same drug. Also, the upper limit for Tegretol is 1000mg daily. After that it becomes toxic.

Who said I can't juggle three objects?

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.