Nothing Works for Everybody

 

 

 

One more article about how much we need sleep, and I will scream until dawn. We must have, they all insist, at least seven hours every night. Or we will lose our minds and die.

There is, no doubt, some truth in this bossy advice. But I have struggled with insomnia since I was an infant, one hand on my crib rail for balance and the other conducting along with Mitch Miller for The Tonight Show opener (and midnight close). All these tips (I spit the word) only make sleep even more elusive. I must always go to bed at the same time, but I must never go to bed until I am sleepy. I should listen to calming apps, but I should not have my phone in the bedroom—so I should listen in another room, but I cannot turn on lights that might wake my circadian rhythm once I start to nod off, so I will stub my toe stumbling to bed in the dark, yet I must avoid any upsetting stimulus….

Oh, and naps are so good for you, all the great creative thinkers took naps and awoke restored, with far more mental clarity than those who got a good night’s sleep but did not nap. Yet I must not nap, because then I will not get a good night’s sleep.

What is a “good” night’s sleep, anyway? Like pornography, we know it when we experience it, waking happy and bright, stretching luxuriantly. My self-medicating alternation of cannabis gummies and my mom’s tiniest-milligram (interesting that I feel I must note that) Xanax, swiped from her deathbed, do not give me that sort of good night’s sleep. Only a three-mile walk in Arctic weather in early morning and an evening spent mindlessly will do it, and that only works if I am not reading all these friggin’ articles about how desperately I need sleep.

Darken the room? I sleep better outside in bright sunshine. Progressive relaxation? It alerts me to exactly how many muscles have tensed to resist sleep. Counting sheep? I love sheep, always wanted one as a pet, which I suppose is cruel, I would need an entire flock, and do they get along with dogs? Because a pig chased our dog, and his tiny eyes looked vicious, and…. You see what happens. As for 4-7-8 breathing, four seconds gives me half the air I need to not feel like I am suffocating, so it is hardly restful. And lavender makes me sneeze.

We are all different.

A friend emailed me yesterday in total exasperation, desperate to make that very point. A medical professional himself, he switched physicians and now, because the new one is part of a big corporation, he cannot be prescribed the only medicine that helps him. Standards of care, you know. The big medical corporations have an approved list: prescribe this for this and that for that. Which “can provide some quality,” my friend is quick to admit, “but people are enormously different—which is why there is a list of 100 possible side effects for any medication and very few people will get any of them.”

A good doctor knows the quirks of each patient. A big system cannot possibly know or be responsible for all that variation, so they turn rigid instead. In thirty years of allergy shots, I never once had a reaction, and I promised to be responsible for my death if I did have one, but to no avail—I was to wait in the office for thirty minutes regardless. On busy days, I came up with ridiculous ploys just to sneak out a few minutes early….

That is a childish game, but being denied a medicine you know will work and you have taken safely for years? “This is really preventing innovation or individualization of treatment,” my friend points out.

“Is it that insurance will not cover off-label uses?” I ask.

“Sometimes, but more often it is that doctors are afraid that their care will be monitored by the corporation and their prescription not approved by the corporation.”

“Is the corporation scared of lawsuits or just scared of coloring outside the lines? Are these corporations just so big that the only way to ensure quality is to be procrustean about the care?”

He sighs. “Everybody wants research-based decisions. But it is well known than any medication will work brilliantly for a third of the population, help somewhat for a third of the population and not help at all for a third. And 10 percent will be harmed by terrible side effects. No medication works perfectly for 100 percent of the patients it is prescribed for. There is logic to standards of care, but people just aren’t all the same.”

You would think, after years of excluding minorities and women from drug trials and medical studies, we would know that.

“Doctors need the freedom to try medications that are not the standardized treatment,” my friend continues, “especially if it can be shown that a particular medication works for this one patient.” Legally, they already have this freedom, and he has found a private-practice physician who will prescribe the medicine that helps him. But what about people who are less well off or less resourceful? And how are we ever going to learn more about alternative treatments and individual variances if treatment protocols stay so limited?

We need to land someplace between blind faith in routinized science and fly-by-night, wackadoodle cures. Someplace where we admit that treatments vary in effectiveness, and what works for most people might not work for all, and prescribing should be hard work, not just a quick, indecipherable scribble or a few taps on a laptop.

Back in 2014, researchers at Yale suggested a middle way: allow off-label use and systematically gather evidence about outcomes. It probably sounded like too much work. Methodical data-gathering could have expanded the options for all of us, though. We cannot count on the FDA, because “drug manufacturers frequently don’t try to get a new FDA approval for a medication because of the time and cost involved,” notes patient advocate Abbie Cornett. Submitting a supplemental drug application costs money and might not pay for itself in profits. Meanwhile, insurers do not like to reimburse for off-label uses. And although off-label prescribing is not in itself grounds for medical malpractice or negligence, that does not stop lawsuits from being filed if there are adverse reactions, yet another disincentive for the C-suite.

So now I have something new to keep me awake at night. I set aside the prescription research and, against my better judgment, read just one more article on sleep, this one by Alexey Guzey. He runs a nonprofit called New Science that is funding young life scientists to “think outside the box” (good God, why do we not have a less boxed cliché for that concept?). Flouting conventional wisdom, Guzey has made it a temporary practice to sleep far less than the requisite seven hours, and he is ready to nail his theses to a wooden door. If fasting and working out to the point of soreness are good for us, he argues, stressing the body with occasional sleep deprivation might be good for us, too.

It certainly will not drive us mad or kill us. I fell into the trap of sensationalized news, accepting a generalized observation as true across the board, always, for everyone. Guzey might be way off base—or wildly different in his sleep needs than whatever counts as the norm—but just knowing that someone was countering the received wisdom was enough to put me straight to sleep.

 

Read more by Jeannette Cooperman here.

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