Treat your sleep apnea, yo, for your health and my sanity

I made a joking post on Facebook a while back about sleep apnea:

Ah yes, larps. Where you learn how many people you know probably have untreated sleep apnea.

The context was that I was larping in the woods, awake at 3am, listening to someone in the next cabin gasping for breath in between thunderous snoring. This is not a new phenomenon at larps; indeed, in the bathroom the next morning, I heard several people complaining about the snoring of their cabin mates. (We even came up for an in-character term for it: “nose thunder”).

I may have been joking there, but ultimately sleep apnea is no joke. And I wanted to elaborate a little more on this, since I realized many of you don’t know me well enough to know that I too, have sleep apnea. It has made me a bit of an evangelist about the condition. I hate to see people suffering when there is a solution out there.

My history with sleep apnea

In 2009 I got diagnosed with moderate sleep apnea. I had spent the three previous years — maybe more — never feeling rested. I had serious problems staying awake at the wheel; on my commute to work, I would continually punch myself in the leg just to stay conscious. I could sleep anywhere — unfortunately, that included boring client meetings at my job. (I eventually lost that job, and that was partially why). On my rare free days, it was hard to motivate myself to do anything, and I would inevitably need a three-hour nap in the middle of the day.

I got a CPAP machine fairly quickly after my diagnosis. A CPAP applies “continuous positive airway pressure,” i.e. it fits over your nose and delivers constant air flow to keep your airway from collapsing when you sleep. It’s basically the gold standard for sleep apnea treatment; there are also surgeries, but none of them are very effective. If this sounds really annoying, well, at first, yes, it can be. But I adapted to it very quickly, perhaps because at that point I could sleep through anything 😉

After two or three nights, I wasn’t exactly convinced it was doing anything. My daytime sleepiness lingered for a while. It wasn’t until I was at a larp event a month later — and I wasn’t falling asleep on any horizontal surface — that I realized it was working.

If you snore — especially if people tell you you stop breathing — please, please, please get a sleep study. If you have unexplained daytime sleepiness, even if no one tells you you snore, please get checked.

Some of the objections and questions I hear about sleep apnea and CPAP therapy, and my answers (keeping in mind that I am not a doctor):

“But I don’t fit the profile for sleep apnea.”

Neither did I, according to the PCP who wrote my referral for a sleep study. While I was overweight at the time, I wasn’t significantly so, and heck, I didn’t even think I snored. I got checked anyway, and so should you. Even if you don’t have obstructive sleep apnea, there’s also central apnea — where your brain just stops telling your body to breathe in your sleep — which can also be treated.

“I’ve just started using a CPAP/I use it intermittently, and I don’t notice any difference.”

The thing about sleep apnea is it’s insidious. You won’t notice 1, 2, or even 3 nights of low-level sleep deprivation. But you sure as hell notice months and years of it.

And your health will, too. Spending a third of your life gasping for breath takes its toll on the body: it raises blood pressure, increases risk of stroke, and probably other stuff we haven’t even discovered yet.

“How the heck am I supposed to get used to having air shoved down my throat all night?”

It’s amazing what the human body can get used to, really. If it helps, most CPAP machines have a “ramp” function, where they start at low pressure and gradually ramp up to their full pressure over a time you set.

Additionally, durable medical equipment companies (DMEs) have really been working on the problem of making these things comfortable. There are masks that touch as little skin as possible, humidifiers, preheat functionality, leak testing, and all kinds of conveniences.

It’s all small and portable too, so you can take it with you while larping, assuming the site has power. Heck, you can even by cozies for your CPAP hose so that they look less medical. (Or, in my case, so that my cats would stop chewing on the delectable plastic).

All I have to say about this is: if my mother — in her 60s, with chronic health problems, and sensitive to anything touching her skin while she sleeps — can get used to a CPAP machine, then you can too.

“Isn’t the sound of the machine just as annoying to my bedmate as snoring?”

Not even a little. Modern CPAPs are almost silent when the mask is fitted to the face. (If the mask slips loose, you will hear a “whooshing” noise, though). It’s white noise at worst.

“But what do you do when you have no power?”

That is a problem. Depends for how long, I suppose. I can go without for a couple of nights, but my sleep apnea, as I said, is only moderate, and mostly harmful in the long term. Luckily most larp sites these days DO have power, and CPAP machines are actually a very low draw, which is a concern at some sites I’m at.

There are also DC power solutions for CPAP, to allow you to hook up to some kind of battery, though I admit I haven’t experimented with them. (They look super pricey!)

“It’s expensive!”

Without insurance, oh, definitely. Most insurances, however, will cover this stuff pretty extensively, because it’s cheaper to treat sleep apnea than it is to treat the respiratory and circulatory issues this will eventually cause.

Again, I use the example of my mother — as a self-employed person with chronic conditions, she is still able to get her paltry insurance to cover her CPAP equipment and supplies.

That said, I realize that CPAP therapy is still not accessible to all. If you can’t manage the expense of the diagnosis or treatment, one of the best self-treatments is sleeping on your side. There’s even the “tennis ball technique” to prevent back-sleeping.

“All these people getting diagnosed with sleep apnea is just a scam by doctors/medical equipment companies/insurance to sell people equipment they don’t need!”

Yes, I have really heard this. What I will say is that given the expense of doing a sleep study — which is basically an EEG plus a bunch of other monitoring while you sleep — I guarantee you no one is making a fortune on selling you CPAP units afterward.

If anyone is making any real money off this, it’s the insurance companies, and they aren’t keen on sharing it with the doctors and the DME.

But hey, that’s the fucked up American healthcare system! Either way, your suffering isn’t going to stick it to The Man.

“Speaking of sleep studies… I can’t sleep in hospitals. Especially when there’s a bunch of stuff glued to my head.”

Sleep studies aren’t exactly super fun times, but they’re still way better than most medical procedures. I found the worst part to be trying to sleep on the schedule it enforces, which has you going to bed at 9pm, and then being kicked out of the hospital (not literally) at like 5am.

But the staff will do everything to make you comfortable — I remember mine bringing me ginger ale and asking me if there was a TV show I wanted to put on. And yeah, it took me a long time to fall asleep, but once I did they got the data they needed, which is what mattered.

(Generally they’ll do half the night just observing, and then if they see apneas they will hook you up to a CPAP to get your titration numbers, i.e. how much pressure you need. This is so you don’t have to come back for a second sleep study).

My mother told me horror stories about a sleep study where it took an hour to hook her up to the equipment. It… did not take me that long. They had it all hooked up in about fifteen minutes.

You do have to wash conductive goo out of your hair afterwards. No big deal.

Oh hey, and I’m told that in some places, you can do a sleep study at home. Like the hospital gives you a kit to hook yourself up, and then you send the data back to them the next day. That’s pretty neat, if that’s an option for you!

“I don’t want another medical condition to manage.”

If this applies to you, you probably already have a medical condition. You’re just not managing it.

Management, incidentally, is super low intensity. I have an appointment with a pulmonologist once a year (every six months for the first year), and every few months my DME calls me and says “hey do you want new supplies?” The biggest challenge I ever had was when I tried to get an auto-titrating machine two years after getting my first machine, and that was quickly resolved when they saw my compliance data. (Which lives on an SD card that you stick in the back of your machine. Some machines can send it directly to the DME/doctors, too).

In conclusion

Take care of your health, and the sanity of your fellow larpers. Please get checked ASAP if you think any of this applies to you.

If you have any questions about my experience with sleep apnea — especially as a larper with sleep apnea! — please feel free to drop a comment!

Photo credit: Jordan Whitt on Unsplash.

Author: Lise

Hi, I'm Lise Fracalossi, a web developer and writer. I live in Central Massachusetts with my husband, three Maine coon cats, and a collection of ridiculous hats.

2 thoughts on “Treat your sleep apnea, yo, for your health and my sanity”

  1. I know it’s unpopular to ask others to take care of themselves. But when it comes to causing sleep deprivation to others while slowly suffocating yourself, I’d like to think the stigma is somehow less.

  2. I agree with all you wrote, Lise Fracalossi. I was finally diagnosed back about 1991, after seeing multiple doctors who said I couldn’t possibly have sleep apnea. This was very early in the history of cpap. I was a 4+ snorer but doctors kept telling me I was a female and not fat enough to have sleep apnea.

    If you have trouble sleeping in strange places, ask your doctor for a sleeping pill for the test. I only slept for 10 minutes for my first test – I woke up when they told me I could go to sleep then.

    I did have trouble adapting to a CPAP machine – this was early 90’s. They did not make masks for the female face then, so I had lots of leakage and the machines were bulky, no heated water chamber and noisy. I had a few sleeping pills left over from my 2nd test, so I took them for 2 nights. After that, my body and I knew I could sleep with it and had no more problems.

    My spouse did have some trouble adapting to the cpap – he was really use to my snoring and had to learn to sleep with a different noise, but after the first week, he adapted. My latest machine is so quiet, he wakes me up to see if I am still breathing. Not so much now, but I didn’t get a lot of sleep the first week with the new machine.

    If you use a CPAP, BG&E will put you on a list to get priority repair of downed lines if your power goes out. Our power company in California also did that. Different companies have different rules, but most require a doctor’s signature on the form.

    If your first mask does not work, your DME supplier has to keep trying with different masks – at no additional cost to you.

    I personally know of 2 people who were diagnosed with sleep apnea and refused to use a machine, who went on to have a stroke – one was a heart surgeon. I also had an elderly friend who was afraid her husband had dementia. He would stop in the middle of the block for a stop sign at the corner along with a bunch of other stuff. When she mentioned his sleeping, I suggested getting him tested. His “dementia” disappeared once he got his cpap.

    If you live alone, try to sleep somewhere where people can hear you and tell you if you snore. If you wake up suddenly in the middle of the night and have no clue why, it may be because you stopped breathing. Get tested. If you know someone, who snores and/or stops breathing in the night, be a real friend and tell them to get tested.

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