I saw a friend mention on Twitter today that he was about to embark on the wonderful journey that is treating Sleep Apnea.

Welcome to CPAP.

I’ve been using CPAP to treat sleep apnea myself for over a decade now, so I know there can be a lot to wonder about in the early weeks.

I didn’t know I had sleep apnea myself. I went in to be checked out because I snore. Like a hibernating bear. We had heard that some treatments for sleep apnea could help reduce or eliminate snoring, so I went in to have a sleep study done.

It was either I do that, or one fine morning Cassie would have had enough and slit my throat in my sleep.

As an amusing anecdote, my snoring was bad enough that one night while we were vacationing in a hotel up in the north woods, Cassie fled the room, went to the bathroom and fell asleep in the empty hot tub, huddled in blankets to try and escape the racket.

Sometimes, sleep apnea can be more life threatening than you realize. I’m telling you, she was gonna shank me for real.

Anyway, so I had a sleep study done and sure enough, I was diagnosed with fairly severe sleep apnea, and the use of a CPAP machine was prescribed.

I sat down and this was the conversation I had about my options afterwards.

“So here are two machines you can choose from, and here is the durable medical provider you will be using for everything, and here are a few mask styles, pick one.”
“But… how do I know what kind of mask I should use?”
“Just pick one.”
“How do I know what size to get?”
“Just pick one, try it, and if it doesn’t fit you’ll have to buy a different size.”
“Can’t I try some different sizes? Or get fitted or something… like, scientific?”
“No, if you put a mask on your face it can’t be resold so you have to buy it before you can try it on.”
“But… that’s got to cost a fortune.”
“That’s okay, your insurance company is paying for it.”
“But what about the machine, isn’t that expensive too?”
“Oh, you’ll be renting that and your insurance company will be paying the monthly rental fee.”
“For how long?”
“For however long you’re on the treatment.”

I’m not joking. And it hasn’t gotten much better, since it’s in the interest of durable medical equipment providers to do this, because hey, it’s not you that’s paying so what should you care if the rental fee for a CPAP machine, for three months, is more than it would cost you to BUY your own machine outright. Right?

Well, some of us do care.

The first thing you should know is, so long as you have your prescription for your CPAP equipment, specifying the pressure settings, you do not have to use any of the equipment providers most clinics try to guide you to. You can be a smart consumer.

I started with a small company called Midwest Medical, and they made a LOT of money off of my insurance company before I switched to a different one called Apria, which also got ridiculous amounts of money until I finally did my research and bought my own machine.

Since then, I use two online retailers of durable medical equipment, CPAP.com and CPAPxchange.com. I have most recently been using CPAPxchange for my equipment, masks, mask repair parts, hose covers, mask wipes, and I just bought a new machine last October from them, because they’ve been pretty outstanding in both price and service. I had one water reservoir arrived with the seal not quite right, and they shipped me a replacement instantly.

I don’t get any kickbacks from them, by the way. This isn’t a paid advertisement. I’m telling you about them because the Auto-CPAP machine with heated humidity I purchased last October cost me, total, $510, the Icon+. It’s been very good, except it’s loud. And I have to unplug it every morning, because the power supply transformer is under the water reservoir, so it heats the water in the chamber up just enough for condensation to form in the hose during the day. But I wanted an Auto-CPAP that was small, cheap, and had a heated humidifier with heated hose. All things considered, it’s outstanding.

Anyway, so for both those websites you can upload your prescription, they keep it on file, and you can purchase your equipment from them.

Also, while even to this day local medical equipment providers refuse to let you try on masks, these website stores have a policy where you can try it and return it if it doesn’t fit. You’re not stuck with a big bill on equipment you can’t use.

The online stores also have resources for many of their masks for fitting charts you can download, print out, cut out of paper and hold up to your face to figure out the right size before you order.

So, buy your gear wherever you want, but be smart. If someone tells you to rent for three months, and it’s going to be more than $500, why not just buy the damn thing? Then you’ve got it for years.

Now, CPAP fixed level or Auto.

Simple answer… auto CPAP will adjust to your pressure needs, and as long as you MAKE DAMN SURE your prescription specifies a high enough top level pressure range to suit your needs… even if your prescription changes over the next few years, it will adjust to you and keep your treatment at the right level. If you get a fixed pressure system and your prescription changes over time you’ll need to take the machine in for maintenance.

I would strongly advise you get a system that has a heated humidifier built in. A CPAP machine is going to be blowing air under pressure down your passages all night long. A heated humidifier will keep you from drying out, and that is very important. If your gums get too dry consistently, it can cause serious dental problems. Not to mention feeling like someone is sandpapering your throat.

I personally use a heated humidifier, and I also have a hose with a heating coil running through it, and I have a hose cover (an insulating blankie) wrapped around my hose. I’ve found that it all helps prevent the humidity from condensing in a cold room and becoming water once it reaches you. Yes, in Minnesota on cold winter nights, it has been known to get cold in a bedroom and condensation in your face sucks.

Your mileage, of course, may vary. I think I could do without the heated hose, since I’m using the hose cover.

All of this stuff can be bought online, by the way. I LOVE the hose cover, because it also helps protect the hose from getting kinked/crimped/crushed. Cheap too.

Okay, so mask sizing, online buying, know where you can find options, heated humidty, check.

Now the quality of life stuff.

I hate having stuff shoved up my nose. Some masks are designed with nasal pillows, a fancy way of saying they’re gonna shove stuff up your nose. I hate those things, so I use a full face mask. Also, that way if my mouth falls open while I’m sleeping, I still get my treatment. And I mostly don’t snore. I like a full face mask, but you should try what seems good for you. My personal favorite is the Quattro. Great cushioning, good headgear, and the mask itself is very quiet. believe it or not, the air leaving the vent holes/exhaust holes can get quite loud on some masks.

But the machine… what do you do if your machine is noisy? My current machine sounds like a jet turbine on takeoff.

What I did was make a sound chamber.

soundbox-closed

soundbox-open

It’s stupid simple to make one.

You need a cardboard box, a knife, and a box of sound absorbing acoustic panels from a home improvement store. They sell them in tile sizes so you can mount them on walls to absorb echoes. And you should be able to find them in a store for cheaper than most of the online places I saw that wanted an arm, a leg, and the mortgage to your house for some foam. I think the box of foam tiles I bought was around $30, the link above is to the pack I bought at the time. What price silence?

I cut a hole in the front of the cardboard box, cut the acoustic tiles to line every surface (with a matching hole in the front, of course) and made sure there was plenty of space all around the machine on the inside of the box for air flow. Air comes in through the hole in the front, has to move around the machine to the intake at the rear, and then into the machine and up through the hose. There are so many acoustic absorbing surfaces any noise would have to pass through, the thing runs dead silent.

None of it is glued, by the way. I trimmed the tiles so they all just fit together fine. The foam is stiff enough not to flop around.

It’s perfect, as long as you don’t mind having a machine in a cardboard box.

Oh, and since it’s just loose panels and a box, I can take it apart and stick it all flat in a suitcase when we travel. This box has been all over the place.

Then there is hose management.

One thing that always drove me crazy was having the hose pulling at the mask on my face.

So, I built a little handy-dandy hose hangar.

hosestand-placed

hosestand

It’s as simple as can be. A piece of wood big enough to slide between mattress and box spring. Some standard pipe pieces from a hardware store. I believe that’s a 1/2″ flange at the bottom with a threaded socket mounted on the board, 1/2″ pipe up to a reducer, a 1/2″ to 3/8″ reducer, then 3/8″ pipe up to a 45 degree bend and a T fitting. I started with 1/2″ for strength at the base and went to 3/8″ cause CHEAPER. And I used a S-carabiner that fit into the T fitting, that happened to have a big enough hook for the hose to slide in, but you could use rope or any sort of thing you cobble together as a hammock or sling for the CPAP hose to rest in.

The key thing for this is, the hose is hanging directly over my head, so no matter which way I turn in the night, nothing gets tangled, and nothing pulls on the mask.

Hmm. I think that’s all the tips I can think of for now. If you have questions, please by all means ask. This stuff is expensive, and you’re going to be spending a LOT of time sleeping with it on your face. It’s best if the stuff works for you.

Thanks for your time.

8 Responses to “Tips about CPAP Gear from a Long Time User”
  1. Nyctenice says:

    Long-time reader of your blog here. Thanks for posting this!

    My story is a bit different. I was living overseas in Asia and was diagnosed with sleep apnea there. Got my prescription just before moving back to the USA. Once back here in the USA, I simply went online and bought a CPAP machine.

    That was over a year ago. So far so good. Working fairly well — BUT I am SO glad to learn about auto-adjusting from your blog post! I didn’t know about that and will ask.

    But, who do I ask? I have heard that one should go to sleep doctors to have the CPAP adjusted or undergo titration? Is this correct? Although I have health insurance now, I am concerned that a new sleep clinic here in the USA will try to over-sell stuff…

    • bigbearbutt says:

      The machine itself has to be designed for auto adjusting pressure levels. If your current machine is fixed pressure, it can’t be changed to auto.

  2. Kirk says:

    Good stuff. If I may chime in (having about as much time as you)…

    I have used both mask and pillows (aka things stuffed up your nose). The pillows are more uncomfortable for a while. It’s easy to get stupidly afraid they’re going to come off and pull the mount straps too tight so they’re crushed up against the nostrils, in turn making everything sore. The mask can have that problem but it’s less likely. That noted, I use the pillows.

    See, when I use a mask my mouth sometimes drops open a bit and I breathe through it. That’s because I have some minor sinus issues and they tend to be blocked. Well, tended to be blocked but I’ll get to that in a second. Anyway, if my mouth drops open a bit then I wind up ‘gently’ snoring. Not near as bad as with no mask, but some, till I close my mouth again because my wife got awakened and gave me a nudge. And let’s face it, the snoring is a precursor to the blockage that is the reason for the CPAP in the first place. Pillows don’t let me ‘cheat’.

    In a fun feedback cycle, if I’m forced to breath through my nose the air passing through helps keep the sinus problems under control. Which means that once the air is going for a while I quit being plugged and don’t need to open my mouth.

    But as I said I have sinus problems and sometimes it’s hard to get air going through. er, used to be hard. See, I did some additional learning and ran across a solution.

    I put 3-4 drops of peppermint extract into the reservoir every night. The menthol opens the nasal passages and I can breath. The extract only lasts a couple of hours but again once I’m breathing I’m fine. Enjoyable side effect: I haven’t had a sinus infection since I started doing this with my CPAP. I used to have an average of two per year – for about 25 years. (since when I tried the mask for about six months, actually.)

    If you can afford to try both, try the pillows for about six months. It’ll take one month just to get used to them. It may take more if you can’t talk to someone about how to fit them so they’re snug enough without jamming the nostrils. And while you’re trying the pillows, if your sinuses are plugged and it’s initially hard to breath try the peppermint extract.

  3. alburet says:

    My father has started treating sleep apnea I will have him look at this thread now. Thank you BBB.

  4. Zy says:

    Very interesting!

    Bit off topic but I chuckled to myself a bit about the sound chamber because I bought a couple of fans and a white noise machine earlier this week (baby #2 on the way, small house, the six year old is going to have to share her room when the baby starts sleeping thru the night, ect). Everything has to be just right, just enough of the right kind of noise but not to much and so on. Yeah, my sense of humor is weird right now.

  5. Yorgi says:

    I suffered from sleep apnea most of my life and had no idea why I was so tired all the time. It got to the stage that I felt like I was permanently walking through mud as I was s screwed up from lack of sleep.

    When I finally got diagnosed and received my machine (free, thank god for the NHS) I finally see why these sleep apnea sites say that sufferers have 2 lives, one before they got the machine and one after. The crazy thing is that my case was only classed as average with me ‘waking up’ once every five minutes or so through the night, I really feel for those people who have to put up with worse cases.

    I have to send off a data card to the company that supplies my CPAP machine, they send the results to a consultant who sees me every 6 months or so and checks that everything is okay.

    Oh and just for the record, I was probably at my lowest every just before I got my machine and I know that it saved my life. =)

  6. Jem says:

    I can totally relate to your wife wanting to end you over snoring. I take ages to fall asleep, and when our first baby was born she wasn’t a great sleeper. So I’d be up and down with her and would only be just falling back asleep when she’d wake up and want me again.

    My hubby falls asleep in 5mins flat and snores loudly. I couldn’t get any sleep due to the noise he was making and the only thing that stopped me smothering him with a pillow was that I didn’t want to be a single parent.

    Although I think we should probably get him assessed for sleep apnea, it wouldnt’ surprise me if he suffered from it.

  7. laura says:

    Thanks for posting this. I started CPAP in Nov, but then got bronchitis twice and haven’t gotten back on the bus yet.
    Even when I wasn’t sick I was fighting the CPAP all night. I’ve changed masks and ramp up time and yada yada yada, and it’s always a struggle, but I plan to keep pursuing it.

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