Sleep ApneaCreated: Wed Feb 03 2021 11:02:07 GMT-0500 (Eastern Standard Time) Edited: Wed Feb 03 2021 Tags: sleep_apnea,cpap,children
I have debated writing about my recent sleep apnea diagnosis. I don’t want this blog to be a personal blog, per se. In the past, I’ve struggled with blogging because it’s very public, and my goal with this site has always been to keep it about hacking. However, the last few months have been transitional for me, and as I learn more about sleep apnea and its treatment, I see that it is relevant to the interests of this blog. For one, a considerable amount of attention that I used to devote to side projects is now devoted to getting some fucking sleep.
I believe I have had sleep apnea for a long time. I have always woken up alert and early, often before the sun rises, and I always pee right away. Sorry if it’s TMI, but apparently getting up to urinate and sleep apnea are very heavily correlated. Your brain, experiencing a drop in oxygen assumes you are drowning and orders your body to eliminate excess fluid. I’ve always had this morning routine, regardless of how late I stay up or what else is going on. I attributed it to having a regular internal clock, and saw it as a gift. But in light of the diagnosis, I question whether my gift was just a symptom of an ongoing problem.
After years of being a morning person, I had children. My children are amazing. Blah blah blah. They have not historically been amazing sleepers. Over the last 4 years, I have had very few mornings where I woke up naturally as I used to. Eventually you can get in a routine where 5:30 feels fine, but there is no routine where 4:30 feels fine. Not for me. I find the idea of going to bed early enough to wake up at 4:30 extremely depressing. You have to understand, I spent years in the restaurant industry, fucking around all day, working in the evenings and partying after work. So fun. Sure, I can tuck my kids into bed and take a Benedryl, but there are no lazy wakeups to be had in our home, so that sort of feels like there’s no real break in the action.
We’ve had spells where the children sleep better or worse, but I noticed myself sleeping much lighter. My wife would offer to get up, but the minute a child calls out, I just jump out of bed and run over. I can’t help it. There’s no point in us both getting up, and so that’s just how it goes. Over the last 4 years I’ve felt myself getting duller and duller. The result of sleep debt. When I can find time to record music or visit with friends, it’s hard to find the motivation. I can almost always rally, but the things that interested me are less interesting than they used to be. It comes in waves, and it’s obviously tied to sleep. The lack of motivation has gotten worse in Covid as the things I could get excited about usually involved, you know, going places and seeing people, and our focus on work and kids has heightened.
I blamed my children for my tiredness, but in the 4.5 years of being a parent, I taught myself front-end development, got a job in the industry, and I’m actually not too bad at what I do. I can almost always find the energy to get through the day, and when you can’t, well, the job has some level of flexibility with scheduling. There have been days I couldn’t focus and had to work the next morning. I was sort of proud of functioning at a high level while tired.
A New Year
Schwartz the Younger (my little daughter) has been chronically overtired for a long time now. This happened with Schwartz the Elder too. Once they get too tired, sleep becomes harder and sleep debt accumulates. She wakes up 2+ hours before most other children, so her nap time needs to be around 10:30am. Day care has trouble accommodating this, and the other kids all nap at 12:30pm. Her nap being overdue, she crashes hard and sleeps too long, resulting in a cranky, bitey mess of a child.
I took some vacation time before the holidays so I had 2 weeks of no work. That’s two whole weeks to work on side projects and write blog posts and play with my children and maybe even record a little music (ha!). Sounds a-mah-zing.
And my kid slept so shittily that I wasn’t able to do any of that. I drifted through the holidays (or what passes for holidays under the specter of Covid). Then a miracle happened.
The first 4 days of the new year, both my children slept past 6:30. This is because we were able to manage Schwartz the Younger’s sleep schedule ourselves for 2 weeks. I never thought I’d see the day. As it turns out, I saw a lot of the day, because I woke up at 3am all three days. By this point, I’ve succumbed to the necessity of turning in early, and I’m using alternately NyQuil, Benedryl and Melatonin to fall sleep, switching them off so I don’t get dependent on any one. I’d wake up at 3, try to fall back asleep, realize I had to pee and get up, then lie down again, wake up again, pee again. Noticing a pattern?
The fourth night, I woke up even earlier than usual at 1am, and I took some NyQuil. This had the desired effect of making me nod off, but I kept waking up. I would later describe it to my doctor as
bouncing. I felt like I’d fall into sleep and then forget to breathe and bounce back awake. I could control my breathing to relax but as soon as I fell asleep, I’d bounce back up. It was terrible. I ran out of bed after the 5th bounce and had a full-on panic attack in my kitchen. Hyperventilating, yelling at myself, why can’t I just breathe!?!?
My wife calmed me down and helped me relax. I made an appointment with a cardiologist, which is what you get when you search through your insurance provider listings for
sleep. Nothing scary about that. I became hyper aware of the stoppages night after night, and although I cut out alcohol and sleep aids, I still couldn’t sleep. I became convinced I had sleep apnea, and while I waited to speak with the doctor, I tried home remedies like Breathe Right strips (helped a little), sleeping on your side (couldn’t do it). I started staying up a little later and tried to make the most of being awake to read or watch videos. I couldn’t sleep, but I could stop giving myself anxiety by trying so hard.
The Home Test
After meeting with the doctor, she ordered a home sleep study, which I was told was famously inaccurate, but required by insurance. “It’s probably not going to give us a conclusive diagnosis,” she told me. “If it is not enough, we will order a study in a sleep center.” Later, the technician who called to walk me through the whole rigamarole would reiterate that home tests are pointless, and would not be administered were they not an insurance requirement.
The home test consisted of a pulse oximiter, a chest strap and a nasal cannula. It monitored breathing and O2 levels. I pulled mine off 2 hours into the night and put it back on again 3 hours later. Interestingly, doctors are not allowed to consider this when interpreting the results, so officially my chest was moving up and down while I held my breath for 3 hours. If this makes no sense to you, congrats on being rational. That aside, I was told I had mild-to-moderate sleep apnea, and to get on a CPAP machine.
2021: The Year Of Mask Wearing Redux
So, at this point the challenge has been acclimating to the mask. Bane would be embarrassed at my performance, although I haven’t seen that movie.
CPAP is challenging because you have to get used to doing something while you’re asleep. I got used to falling asleep with the mask on, but making it through the night is a different story. There is pressure on you because insurance won’t cover your machine unless you are
compliant, which is to say you have to wear the mask for more than 4 hours per day, on at least 63 of the first 90 days. Other therapies won’t be covered either, unless this target is met. The result has been that I end up wearing the mask for up to an hour in the afternoon or evening to make it easier on myself, as they don’t care how you get to 4 hours.
So why can’t I make it to 4 hours most nights?
The CPAP I was sent is really remarkable, but it has a fatal design flaw. There are only two buttons, and they click louder than any other button in my house. This means that fiddling with the machine at night wakes up my partner. There’s no reason the button and click-wheel couldn’t have used capacitive touch for clicking. So once I take it off, I try not to put it back on until a logical point in the night, like when Schwartz the Younger wakes us up anyway.
Stubble is Bad
I’ve been in the
shave once every two weeks club for decades now. Full-face masks leak a lot more if you aren’t clean shaven. I don’t like it, but I even less don’t like the feeling of air rushing down my chin all night.
Are My Nostrils Too Small?
I tried a
nasal pillow style mask, which was more beard tolerant, but inevitably I wind up waking up because the nostril holes have become misaligned, and I’m not getting air. Also if you open your mouth, the pressure causes the air to rush out. It’s weird.
Leaks Are Noisy
If your mask isn’t fit right, you will experience leaks which can vary from a noisy rush of air on your face, all the way to a teeny-tiny fart sound. There’s nothing like having a mouse-on-a-motorcycle in your bed.
I assume all these points will improve with time. Which brings us to the one fun thing about sleep apnea, and the reason I am going to write about it on the blog from time to time:
The Most Hackable Diagnosis
It turns out The Machine has an SD card slot, and there is open source software you can use to visualize and work with the data. You get a detailed report of your breathing patterns, approximate O2 levels, any incidents you are having in the night, mask seal, etc. Ultimately learning to live with The Machine requires finding the right combination of mask style and settings. Having access to that granular data means that I can tweak and fiddle to my heart’s content. Maybe I’ll even find a way to make that stupid button quieter.
I’m very motivated because I would like to not feel like a tired piece of shit every second of the day, and get back to the things I love: writing, music, running. Also because the list of side effects for untreated apnea are very scary.
Stay tuned for more about my night breathing than you probably wanted to know in future installments.