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.

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.

Continuing the pain diaries

More to and fro between this establishment and the Harrumpher, who recounted his late experiences in the demimonde of emergency rooms. I have the sort of job that allows me to say yea or nay to various hospital actions (as in yea you can do that; nay, we won't pay you what you want) I have to have more than a passing acquaintance with evidence-based medicine to do this. A number of medical actions or phenomena have passed across Mr. H's bows in the last fortnight, seeming strange or indefensible, as no doubt they do to most medical consumers. On the other hand I see them almost every week, I don't know nuthin' 'bout birthin' no babies, but I see a fair amount of orthopaedics in action.

Patients are likely to lose a lot of weight after trauma, mainly because the body is set up to repair major injuries as well and as quickly as possible. You’re in metabolic warp drive; the repair functions make very high demands on your resources. There is related evidence that otherwise healthy people may suffer from malnutrition during recovery from physical trauma, perhaps because the demands of the repair functions are so far ahead of supply.

Hospitals give patients (especially fracture patients) Tums or the like for a couple of reasons. Acid stomach from the meds is one of them, for sure. Another is that the repair function is diving deeply into your calcium resources, and Tums are a good, cheap and readily absorbable source of calcium. Blood loss and replenishment can also throw your calcium balance out of whack. One thing that can happen if your calcium is low is acid stomach; another is that you’ll sneeze a lot. Believe me, H, someone with broken ribs does not want to do that. I deal with the blood part of the business every three weeks when I donate platelets. The Red Cross wants its donors comfortable. It also doesn't want them having paroxysmal sneezes whilst their entire blood supply is being pumped in and out of them.

Hospitals administer laxatives because opiates, even in small amounts, slow or stop the wave action (called peristalsis) that moves food and waste through the gut. This contributes to lack of appetite, but it also causes constipation, and constipation from this cause can lead to impaction and more serious problems. Those of a certain age will remember getting tincture of paregoric for diarrhea as a kid: it's the same principle, and the opiate content of paregoric is low compared to some of the opiates bandied about today.

Relations between patients and clinicians would be far better if the latter would explain why patients should do this or that. Unfortunately, both time pressure and a clubbiness that goes with medical training usually preclude that. The lack of communication has many regrettable consequences.

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Pain dynamics, like those of waves at sea, ought to include duration. Many of us with trigeminal neuralgia (TN) live sizeable parts of our lives with little or no pain. We learn to focus on those times, because it helps us to endure the times when the Beast comes to call. Also, most TN patients have a unilateral condition, affecting one side of the brain. It is possible, even in a severe breakthrough, to perform a sort of meditation in which one retreats to the unaffected hemisphere of the brain and dwells there until the breakthrough episode subsides. It doesn't eliminate pain: it just makes endurable the unendurable. Clinical knowledge also helps. In my safe hemisphere I can note the manifestations of the episode as they happen and so concentrate on something besides the pain.

People getting through such things as orthopaedic trauma, heart surgery or cancer treatment are hard put to find such a "happy place." These conditions affect everything one does. In addition to pain, these patients have to put up with roadblocks to almost every activity of daily living: to such an extent that the roadblocks can equal the pain as a challenge.

Every working day, I deal with providers who seem to miss this point, and devote large parts of their treatment plan to throwing opiates at their patients.
The study I cited recently would be especially helpful if it put the brakes on providers who do this, and motivated them to more holistic treatment.

Don't forget: when it comes to dealing with pain, we are all wusses, compared to the generations who lived before anaesthesia and analgesics. Not everyone was heroic, of course, but there was a deeper acceptance of pain, perhaps because there wasn't much choice. One of my favourite reminders (and the historical record is full of them) is the story of a British officer wounded at the Battle of Waterloo. Needing his arm amputated, he endured the operation (they lasted 30-45 seconds) without a sound. At the end, all he said was "bring my arm back. There's a ring my wife gave me on the finger."

I could not do that: could you?