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June, 2018:

Hose Wars, Part 2: To Breathe, Perchance to Leak

This is a series. Start here if you haven’t already.


I’m not a good sleeper, and never have been. When my publishing company (now mostly forgotten) collapsed back in 2002, I developed severe insomnia. I was getting as little as three hours of sleep per night, often less, and sometimes none at all. After a couple of weeks of this, I started to hallucinate cute little cartoon devils doing calisthenics at the foot of my bed, along with other things I’m not sure I can describe. Sleep isn’t optional. I sometimes think we sleep in order to dream undisturbed, and that dreams are somehow where our humanity comes from. If we can’t sleep, eventually we start to dream while we’re awake.

My big fear in starting APAP therapy was that I couldn’t sleep with a mask on my face. Had I been a better sleeper, I’d probably have begun thereapy years earlier. I was given two masks: One covered my nose and mouth. This is called a “full-face” mask, even though it doesn’t cover your eyes. The other is harder to describe: It’s a little plastic thing on an elastic strap that inserts a couple of cushioned tubes into your nostrils. These are called “nasal pillow” masks, and they’re a great deal less intrusive than full-face masks.

The whole point of CPAP/APAP therapy is to push enough air into your nose to keep your airway open, and to open it if by some chance it closes. For this to work, you either need a full-face mask so that if your mouth opens it won’t matter, or with a nasal pillow mask you need some way to keep your mouth closed. There are chin straps of various sorts and other things lumped into a category called “headgear.” Yet more stuff to tie myself up in; no thanks. I did the obvious: I used that blue surgical tape you buy at Walgreen’s to tape my mouth shut.

It worked. It worked, at least, until the machine upped the pressure for some reason. The higher pressure blew the tape off one corner of my mouth, which became a massive air leak, one noisy enough to wake me up.

This is my problem in a nutshell: APAP is noisy and uncomfortable, and keeps me awake. The noise I’m getting used to, at least the fairly modest noise from the machine itself. Leaks are a separate issue. I sleep on my side, which means that both kinds of mask eventually contact my pillow. I can position myself carefully when going to sleep, and that generally works. But if I squirm around even a little while I’m asleep, my pillow nudges the mask to one side, making noise, or (with the full-face mask) spraying air into my eyes. That wakes me up in a hurry.

To keep me asleep despite masks and leaks and hoses flapping around, the doc gave me a prescrption for a sleeping pill called Belsomra (suvorexant.) It’s the first of a new class of insomnia treatments that target the orexin receptors in the brain, rather than the GABA receptors. Pills like Ambien (zolpidem) target GABA, and force you to sleep. If you take one and don’t hit the sack, you’ll start dreaming anyway, and say or do dumb things. The orexin receptors keep you awake. Interfere with their operation using an orexin antagonist like Belsomra, and the signals to stay awake go away. You drift off. I’ve taken Ambien, and it always felt like a whack to the back of my head. Boom! I’m out. Belsomra has a gentler touch, and from what I’ve read, it doesn’t affect sleep architecture (i.e., the different stages of sleep like REM) nearly as much as more preemptive pills like Ambien.

It’s expensive, but very fortunately, Medicare covers it. And so far, it’s done a pretty fair job keeping me asleep in spite of mask issues. As for mask issues, there’s a third sort of mask that I’m going to buy and try: A nose mask. This is like a smaller full-face mask that only covers your nose. It may not be any better than nasal pillows, but it’s cheap enough to do the experiment and be sure.

I’ve found that there’s a downside to blowing air up your nose. A couple downsides, actually, but there’s one big one, and that’s where I’ll start next time.

Hose Wars, Part 1: Overview

ResMed S10 AirSense 500 Wide.jpg

About a year or so ago, the bottom began to fall out of my supply of personal energy. At the time I assumed it was due to my age, or to all the effort I was pouring into our move down here from Colorado Springs, selling the Springs house, fixing up our Scottsdale house, and so on.

Now, virtually all of that stuff is done with…and my energy hasn’t come back.

I started a decent new novel at the end of 2016, and while I got off to a pretty brisk start, I’m now 42,000 words in and making little progress. I have other projects that I’ve done some work on, however, writing is the most difficult thing I do. It’s also the most important to me personally. If something starts getting in the way of my writing, I have to get to the bottom of it.

So it was that in February of this year I did a sleep study. I’d had one done at a Colorado Springs sleep clinic in 2010, but the wires and electrodes and everything kept me awake so much of the night that the pulmonologist declared the study inconclusive. To have a sleep study, well, it helps to be able to sleep.

Sleep study tech has gotten way better in the last eight years. I went down to the sleep lab and picked up a gadget that was something like a stiff but adjustable plastic headband. The part that contacted my forehead had a tacky, silicone-y feel to it, and embedded in the silicone were several electrodes and an LED oximeter. There were no wires and no separate electrodes to get tangled up in, like I had in 2010. The electrodes provided some EEG functionality, and the oximeter continuously monitored my blood oxygen, which is an issue I’ve had for some years. (It was one reason we no longer live at 6700 feet.)

The headband gadget was remarkably comfortable, at least compared to the ratsnest they trussed me up in back in 2010. I was able to sleep on my side, which I’ve done now for probably forty years. (When I sleep on my back I tend to compress the ulnar nerves in my arms, which makes them go numb and then prickly when I wake up.) I took a new-model sleeping pill (I’ll come back to that) and managed to sleep for almost the entire night while the headband gathered data.

The good news ended there. I returned the headband device to the sleep lab, where they downloaded the data and sent the reports to my pulmonologist. I had an AHI of 36, which means I stopped breathing an average of 36 times an hour across the seven hours that I slept with the thing on my head. Basically, I stopped breathing every…two…minutes.

No wonder my blood oxygen was excursing down into the low 80s.

Breathing is good, and tech steps in where nature fails. I was given a prescription for a ResMed AirSense 10 Autoset APAP device (above) and was fitted with a couple of face masks. Laying hands on the actual machine involved a surreal struggle with insurance paperwork, but I finally got it, and about ten days ago I started using it. For the first week, my average AHI was…3.67. That’s literally an order of magnitude better than what the headband reported. Last night was my best night yet, with an AHI of only 2.44.

The AirSense 10 records data on a standard SD card. There’s a clever open-source reporting utility called Sleepyhead that you can install under Windows, Mac, or Linux. There’s a Linux binary for Ubuntu 14.04, or you can rebuild from source. Here’s the wiki for the software, with a link to the user guide. (The software is written in C++, alas, or I’d be tempted to tinker it.)

Sleepyhead aggregates your data by day, week, or month (or just “always”) and presents a number of graphs for the stats gathered by the machine. There’s also a feature to report oximetry data, but I don’t have a recording oximeter yet and haven’t tried that feature, which is described as “cranky.”

I’ve read a number of people report that starting in on CPAP made them feel like ten-year-olds again. This has never been a longing I’ve had (what, go through puberty again? I think not!) and in truth the improvement I’ve felt so far has been, speaking charitably, incremental. The road has been rocky, and I’m going to have to divide the full story into several entries. Stay tuned.