I need some help getting started with "DIY" CPAP therapy for sleep apnea
February 18, 2019 2:27 AM   Subscribe

Can anyone give me any advice for getting started with DIY CPAP therapy for sleep apnea? For reasons explained within, I won't be getting this equipment through an insurance company or a Sleep Center, though I will have competent and willing medical supervision available.

I have a slowly progressive, systemic illness that keeps me mostly homebound. I'm getting great care from a primary doctor who makes home visits, and I travel to see an appropriate specialist a couple times a year. I have a lot of sleep-adjacent symptoms that have been worsening this year, and a home sleep study confirmed moderate obstructive sleep apnea. My Docs + I agree that it's time to give CPAP (actually BiPAP) a try.

For various reasons, including the extreme difficulty of getting myself to appointments out of the house, and the apparent extreme crappiness of insurance coverage for this treatment, I want to buy the equipment directly, out-of-pocket. My primary doc has committed to give me as much help as is needed to figure out settings and adjustments.

The company that provided the home sleep study only provides the testing, and wasn't able to give any advice about how or where to acquire the equipment (which is probably good, as that would be the sort of conflict of interest I try to avoid in health care). The standard next step would be to go to a sleep medicine center to have them handle all the folderol of selecting the machine, mask, and whatever else, and adjusting the air flow properly. But I'm not able to do it that way. And my doctors, not being sleep doctors, don't know the nitty-gritty of how to do it either. So I need to figure out the logistical stuff, and they'll keep me on track medically.

I know this is a thing that some people do, so I figured I'd find the info I need on the internet. I've started looking around, but I quickly got stuck in a muddle (fatigue, no sleep, foggy brain). So I hope you guys can help:

What machine do I want? I'm pretty sure I'll do best with BiPAP, as opposed to CPAP, and I expect to need heated, humidified air (doctors' recommendations). Beyond that, what to choose? It should be small(ish), quiet, *USER FRIENDLY * and easy to adjust. Is data privacy a concern?

Can anyone recommend a reliable site to shop from, with real-old-fashioned helpful customer service from people who know and support the product they sell? (I must be sleeping OK, I'm already dreaming...) Decent warranty and return policies would be extra nice.

How do I figure out what mask to try? Fit and comfort will be important -- can I do any better than just guessing?

Any useful forums out there, for people making their own way with CPAP? YouTube channels maybe?

I hope you can help me get focused. Thanks, and happy zzzzzzzzzz's to all.
posted by Corvid to Health & Fitness (11 answers total) 8 users marked this as a favorite
Start at cpap.com and cpaptalk.com - that's where a good friend of mine has said they had found the best information. They've mentioned that the info they got by searching the forums and asking questions educated them the most. Also, apparently a few of the members there have also done fairly detailed blogs of their journey / experiences. Maybe one of them also uses bipap. One tidbit I remember, is you want a data-capable machine, so you can actually see some measurements of how well the therapy is working, plus finding out on the forum how to download the manual so you can tweak the settings. Good friend didn't have insurance and is both somewhat money-conscious and risk-averse and said the prices and reputability of that site were the best option for them.

You can also look for equipment on craigslist, not sure about ebay, but being almost housebound might make that difficult - I don't think I'd buy such equipment without examining it in person first.

If you want to memail me, I can probably put you in touch with my friend (have to ask them first, but they've talked very freely with me about their trials and tribulations (and eventual success)). I am hoping you have great success with it too!
posted by dancing leaves at 4:30 AM on February 18, 2019 [3 favorites]

I've been using a CPAP for about 8 years. I am not an expert. These are just my thoughts.

Data privacy
I was led to believe that the data collected by my CPAP was used by my insurance company to determine if I was actually using it. If I wasn't actually using it as prescribed, they weren't going to pay for it. I also chose not to return to my sleep doctor for followup visits where they would have used that data to make adjustments. (I didn't return because it worked nicely for me right away, and I didn't see the need for adjustments.) So unless you plan to use that data yourself, or send it to your PCP, you don't need that kind of machine, imo.

My sleep clinic only carried two styles of masks anyway, so it wasn't like I had a huge choice. Either one seemed fine, so I just picked the cheaper one, and it worked out. Honestly, I was getting the best sleep I'd been getting in 20 years, and I could have been wearing a hockey goalie's mask on my face - I was dead to the world. So maybe just the act of using a CPAP or BiPAP will be enough, and it won't really matter which mask you use. I use this kind, that fits over your nose. I like to sleep on my side, so it works great. I don't think a larger one would work as well for a side-sleeper.

The noise from my machine didn't bother me at all (because I was finally ASLEEP oh god glorious sleep). It did bother my husband a little at first, but he got used to it. He describes it as sounding like a pleasant waterfall.

Good luck to you. You will be amazed at how much better you feel after using it for a bit.
posted by SuperSquirrel at 4:44 AM on February 18, 2019 [1 favorite]

I started using a CPAP in October - seconding checking out the forums.

One thing that might work for you is that in my case, I saw my sleep doctor (office at a local hospital), and they have a relationship with a particular supplier. (Sometimes these are not great. In my case, it's been fantastic so far.) =

That DME set up an appointment for someone to come see me at home (rather than my going to their offices, which were an annoying drive.) I got the impression they actually prefer the home visits, because they can then make suggestions about location of the machine or some other aspects much more easily. He turned up with a large bag with the machine and a couple of mask options in different sizes for me to try, did a mask fitting, talked a bit about some options, and showed me how to use and clean the machine (it's pretty straightforward.)

The prices through the DME I use are comparable to the online sites, but I have a very easy time getting a response if I have a question. (I've heard through the forums this is not always the case with DME suppliers, but I figured it was worth starting there, and if it was a problem, look at other options.)

You will need a prescription for a machine whether to order from the online stores or local DME (that's where the forums can help you figure out what one makes sense for you to talk to your main doctor about what to prescribe).

In terms of masks: there's a wide variety, people have different preferences, depending partly on sleep position and partly on other factors. I have TMJ issues, and periodic migraines, so I was really wary of any mask that might put pressure on my jaw (as the full face masks do, since they seal below your mouth). I went with the P10, which fits under your nose with pillows that go into your nostrils, and it's worked fantastically for me. However the nasal masks (whatever the fitting) mean you need to be able to breathe through your nose - if that's iffy for you, you want a full face mask.

One of the reasons to have an in-person visit with someone about the mask fitting is that they can help with sizes (there are rulers/measurement things, but if you have multiple options on hand, obviously it's easier than having to try something and send it back.) On a lot of the full face masks, one of the tricks is that you don't actually want to pull the mask tight against your face (you'll get leaks) but instead have it loosely resting, and the air pressure will seal it the rest of the way.

I did have to retrain myself to sleep with my mouth closed (after many years of not, because I'd stop getting enough air...). Some people use a chin strap to keep their mouth closed, I found that using removable medical tape (small strip vertically across my lips) was enough reminder. I did it for about a month, then tried without the tape, and have been fine ever since.

The current generation of machines is very quiet - I have a fan in my room, and barely hear that the CPAP is working. Maintenance involves filling the humidifier with water (basically every day), and cleaning out the hose/tubing/mask regularly. (Weekly is what's recommended, a lot of the people on the forums go longer unless they've had something contagious) but that is mostly just running water and mild soap through it and letting it dry. You do want to have distilled water on hand for the humidifier.

Data: the most recent generation of machines do send data, and it can be tricky to disable that. The CPAP forums have a lot more information. (I needed to do data sharing to get my insurance to cover it. I am not thrilled about it, but most of it's automated except if my doctor wants to look at things. Insurance wants to make sure I'm using it, but the compliance requirements are quite generous.)

It's made a really significant improvement in my stamina and ability to go do things without falling over in exhaustion afterwards, even though my actual apnea was mild (and I was tired, but not really the kind of daytime sleepiness the evaluation tests ask about.) I hope it does really great things for you.
posted by jenettsilver at 6:25 AM on February 18, 2019 [2 favorites]

I had to have the pressure setting on my machine (the prescription) continually adjusted over the course of a year and a dozen visits, to the maximum allowed by law in my country, before I could keep it on without feeling like I was suffocating. There wasn't any evident way I could alter the pressure setting myself, which was changed by inserting a "smart card" like a chip-based credit card, supposedly because someone who doesn't need the higher pressure can blow out their eardrums and stuff like that if they crank it up.

There are also two different diameters of mask tubing available for the machines I've used and I can't use the smaller one because it restricts the airflow too much.
posted by XMLicious at 8:58 AM on February 18, 2019

cpaptalk was a really helpful forum when I was getting up and running. If you are a person who wants to be able to dig into your machine and pull out the detailed clinical data, and/or adjust our own settings, the forums can help you figure out how to do that. (Assuming it's still possible with the new models; it's eminently possible on my Resmed machine but that machine is a model or two behind the curve, and no smart cards are required.)

I had a good experience buying a travel CPAP from easybreathe.com recently, but I did not need to deal with their customer service so I can't speak to how that might go.

I'll second that if you tend to have issues breathing through your nose, a nasal mask may not work for you - I absolutely cannot tolerate them. I'm not sure about other companies, but ResMed has some mask templates you can print and mess around with here, which might be helpful to check out and see if it gives you any hints about what's going to work well for you or not.
posted by Stacey at 9:33 AM on February 18, 2019

A couple of notes from my own experience:

* The three major types of mask are full-face, nasal mask, and nasal cushions. See here for explanations. I tried full-face, couldn't stand it, had lots of leaks (failure to seal properly). Nasal cushions have worked great for me. I started out wearing a chin strap along with the nasal cushions, to force me to breath through the nose instead of the mouth, but stopped needing it after a few months when my body got into the habit of breathing through the nose while sleeping. My machine hasn't reported any large leaks for years, which would happen if I started breathing through my mouth.

* Additional advantage of the nasal cushions: I'm prone to congestion, but sleeping with them keeps my nostrils clear when I wake up in the morning. Much better than the rare occasions when I sleep without the machine. I've had a Philips System One machine for a few years now, with the heated hose and the humidifier, so those probably help with clearing the nasal passages.

* I wound up preferring the Philips Dreamwear mask system with the gel cushions. Very comfortable, and has the advantage of routing the hose from the top of the head, unlike the one I had before which went down in the front. This makes it easier to sleep on your side or back without getting tangled up in the hose or blocking it.

* For software, there's an open-source option that I haven't tried but seems well-regarded: SleepyHead. My machine doesn't have Internet connectivity, thankfully, but it reads the pressure settings and writes usage data to an SD card that I take with me when I have my annual sleep-doctor checkup. I could use SleepyHead to read and tweak the card, but haven't had any need to.

CPAP has not been a panacea for my sleep problems, but it's been a huge help and I've been using it religiously for a few years now. (I probably only miss 2-3 nights a year.) Good luck with trying it out!
posted by McCoy Pauley at 10:39 AM on February 18, 2019 [1 favorite]

I know several people who got a CPAP through insurance and didn't use it, or got a different model. You could ask on freecycle.net, local Buy Nothing group or craigslist/free to see if someone will give you one.
posted by theora55 at 11:59 AM on February 18, 2019

People are giving you answers, but, frankly, at least IMO, they shouldn't. A CPAP level needs to be done by a somnologist medical professional. Too much CPAP can be injurious to your body; too little won't do the trick. I understand, given the circumstances you describe above, your intention, but perhaps under those circumstances a somnologist would be willing to prescribe you an APAP (more expensive machine that automatically adjusts more easily), and the machine could then e-mail your readings (as many do automatically), or, perhaps they might make an exception and do a home visit. It's my understanding that trying to "do it yourself" as you outline above -- or even via a doctor untrained in the specialty -- is medically dangerous.

Perhaps I'm mistaken in this. But I would counsel caution. I use an APAP myself.
posted by WCityMike at 12:02 PM on February 18, 2019 [2 favorites]

I’d watch this sleep therapist’s videos and maybe pay for him to review your data at some point. NB on his website he sells used masks at a significant discount if you want to try different styles (or just want to own a couple styles...I tried the Dreamwear and it was SO NOISY but many people love it). You can find the consumable parts (e.g.cushions) on eBay or amazon. The Dreamstation can be found online for reasonable prices and it auto adjusts. You can review your data in the app and change settings (max and min pressure) if needed; my sleep doc showed me how to do this and it isn’t a big deal. The supplies last far longer than insurance companies will have you believe if you clean them regularly. It’s doable. Don’t set the pressure too high. If you get a good machine, it will increase as needed to prevent apneas and hypopneas. You can buy morgue quality disinfectant if you get something used and want to be sure it’s clean.
posted by OneSmartMonkey at 5:52 PM on February 18, 2019

I'm about six months into my use of a CPAP, and if it was doing me much good I wouldn't be posting this comment at 4:00 AM. I wish you the best of luck in finding a solution that works for you, and wish I were one of the fortunate people in this thread who know what it feels like to wake up in the morning and not be exhausted.
posted by The Card Cheat at 1:08 AM on February 19, 2019 [1 favorite]

After my mother was diagnosed we did some math, and it turned out that it would be cheaper to just buy a CPAP outright than to keep paying the DME's monthly rent until the insurance "covered" the cost of a machine.

I've purchased two machines for my mother from Second Wind CPAP. They don't spend their money on website design. Both machines were new, but they sell used ones. Best prices I could find on machines. They don't seem to do set up, but in your case I'd expect that you'd want it set for auto-titration anyway. I found the technician's manuals for both machines on one of the forums and got them set up for my mother very easily.

The DeVilbiss was cheaper and made for a good travel machine, and it will run directly off of DC in case of power outage, but she prefers the Respironics for comfort.

You will need a prescription to purchase a machine from any retail outlet.

I did a lot of research in forums. Apnea Board is very helpful.
posted by monopas at 2:16 PM on February 19, 2019 [2 favorites]

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