What do you wish you had known when starting CPAP?
April 7, 2017 8:05 AM   Subscribe

After a year of avoidance/denial, I'm reluctantly going today to be set up to try CPAP for my sleep apnea. I have a lot of anxiety about this and get overwhelmed every time I try to look for pro tips. I'm looking for advice about both the setup appointment and my first couple weeks trying the machine.

Basically just wondering if there's anything I should ask at the setup appointment or any great tips for things I can try to make my experience better. I'm doing a one-month compliance trial (that's what my insurance requires) before I commit to this and have to actually purchase the machine. I know basically nothing about CPAP. I've tried to look at this and this but I just get super overwhelmed and don't understand what anyone is talking about. I'm freaking out about not getting any sleep for the next month during the compliance trial, having stuff touching my face all night, being uncomfortable, having side effects, etc. Yikes!!

I just want to set myself up for success here and for the best experience possible. Any advice would be appreciated, especially advice based on personal experience. Links to newbie resources would be great too. Thanks all!
posted by atruesock to Health & Fitness (30 answers total) 18 users marked this as a favorite
Response by poster: Not sure if this matters here, but I also meant to note that I did try to get a dental appliance for this, but although they told me I was a good candidate for that after examining me at the dentist's office, the trial with their temporary device didn't work, so that was a dead end. I was just looking for anything I could try before CPAP because CPAP seems super extreme to me and really annoying/hard to get used to.
posted by atruesock at 8:07 AM on April 7, 2017

Not a CPAP user but my spouse is. Ask if you can try a few different masks to see which one will work best for you. My spouse did not like the one that went over the nose, and instead uses one that goes in the nose and over the mouth.

Ask how and if you can adjust the pressure, and if your machine has a ramp up setting.
posted by notjustthefish at 8:10 AM on April 7, 2017 [4 favorites]

Same as notjustthefish, my wife uses one. It took her months to get it right. She tried different masks and different positions before she could even wear the mask all the way through the night. Be patient.
posted by bondcliff at 8:13 AM on April 7, 2017 [1 favorite]

It's not as bad as it seems it will be. Hopefully they dialed in the pressure setting when you had a sleep study (I assume you had a sleep study where they tried the CPAP on you, well at least I did).

When I went to the set up appointment, it was just that. The tech made sure the pressure was correct, showed me how to turn it on and helped fit the mask (I can't keep my mouth shut so I use a full face mask). She told me how to clean it and answered questions I had (which might have been none because she did such a great job).

I see the sleep specialist every 6 months to check compliance and how the machine is doing at night (apnea events, etc). Hopefully your insurance is better than mine. I ended up paying out of pocket for a new mask just recently because the old one wasn't working for me.

At night, I find I can't fall asleep with the mask on. But I usually sleep about 45 minutes before waking up and then I can put the mask on and fall asleep. I don't know how common that is but it's better than not wearing it at all.

In my mind, I made a big deal of it at first. But really, after the first couple of nights, it's fine.

Good luck and I hope that everything goes smoothly for you!
posted by kathrynm at 8:15 AM on April 7, 2017 [1 favorite]

Yeah it's all about the mask
You should be able to try masks until you get the right one
Give yourself 3-5 days and if mask isn't comfy get another one

The straps shouldn't be tight if you have marks on face in the morning then its too tight

The clearer your nose the easier it is so try a decongestant it helps

The blister in the blue container has a bit of menthol, under your nose a bit. it keeps your nose clear

And finally this is not a big deal it's not a catastrophe I know it's hard but try not to freak out the more you do the worse it will be its no worse than taking a pill you can do it
posted by Ftsqg at 8:20 AM on April 7, 2017 [2 favorites]

Both my husband and I prefer the nose pillows to any mask that covers the mouth. We don't have a problem keeping our mouths closed, so that mask style works for us. Wash your stuff regularly!
posted by soelo at 8:27 AM on April 7, 2017

Hosehead here! My CPAP has changed my life, and given it back. No kidding. Looking back, I hadn't had a decent night's sleep in years.

Off the top of my head:

- You need a heated humidifier. Don't accept a machine that doesn't have one. It makes an amazing difference as to comfort.

- Because I turn my humidifier up to rainforest levels, I use a mask liner. The liner is important, and that is something I wish I had started off with instead of learning about through trial and error. No more swamp face or mask leak farts waking me up!

- I use a nasal mask - the ResMed For Her, as I have a small face and nose. Obviously, YMMV, but brands and styles of masks vary and your face shape and size will make a difference as to what you prefer. I have a friend who uses nasal pillow masks. I don't like them as much because of the rain-out and because I have narrow nostrils which don't take the plugs well; but many people really love their nasal pillows. Some people need a full face mask, but that is a last resort in many cases because it's not as comfortable, and you really will need a mask liner if you use a full face mask (they tend to leak).

- Be sure your provider lets you try different types and brands of mask. It's a trial and error process to find the best mask and most of us need to try several different ones before we find our perfect fit.

- I use a hose cover to help reduce rainout. If I had known about heated hoses I would have got one as rainout is a real PITA when it gets cold at night. If you can get a heated hose, do so!

- Most CPAP machines are quiet and sound more like a fan than anything, but if the noise bothers you, earplugs will help. I use the Mack's silicone kind.

Good luck! I think you will find you feel so much better when you can breathe at night! I was actually able to go off a lot of my psych and sleep meds because what was "depression" and "insomnia" was really severe sleep apnea.
posted by Rosie M. Banks at 8:31 AM on April 7, 2017 [14 favorites]

I can't sleep without my CPAP, like Rosie it changed my life. I use a full face mask because I'm a mouth breather at night. Take plenty of time when trying on masks and lie down in every position you ever sleep in to make sure it doesn't leak. Unlike Rosie I can't stand the humidifier because it makes me feel like I'm drowning, so I never use it, I'm sure you'll find some setting you like between desert and rain forest. My ResMed is very quiet, quieter than the central A/C so it doesn't bother me or my wife in the least. Besides, the sound isn't much different than white noise. I took to mine like a duck to water and have been 100% compliant since the first day I had it almost 10 years ago.
posted by Grumpy old geek at 8:46 AM on April 7, 2017 [6 favorites]

My husband and I both sleep with CPAP machines - for my husband especially it was life-changing. It is a little bit of effort to get used to but it's really, really, worth it if you have sleep apnea.

CPAP machines these days are much nicer than they were 10-20 years ago. You will probably get a heated humidifier, heated hose, mask with nasal pillows, and APAP machine (automatically adjusts the pressure rather than providing a continuous set pressure). Nasal pillows look like this, just a little squishy silicone thingy that presses against the outside of your nostrils with a strap over the back of your head. It looks funny but it's not a huge deal, honestly; you can get used to it.

Wash your stuff regularly, including the humidifier chamber, mask, and hoses. We just throw our washable stuff in a clean kitchen sink, fill it up with hot water a bit of unscented dish soap, and let it soak for an hour or so. Then rinse and make sure to rub the silicone parts with your hands as you rinse - sometimes soap sort of clings to my mask and feels sticky, but running my hands over it in running water takes care of it - then set it out to air dry. If it's not all dry by bedtime, no big deal. Do this every week.

Your equipment supplier might want to set you up on a subscription plan to get a new mask and hose every 6 months or something. Do that until you get a backup mask or two, then you might find you can cancel the subscription - most parts aren't really worn out after 6 months and you can get the parts you need on Amazon very easily.

Don't be sad about this - this is a really GOOD thing that's going to make your life better. Yay for medical science!
posted by beandip at 8:54 AM on April 7, 2017 [4 favorites]

Yes, to the heated humidifier and to trying different masks. (Personally, I need a full face mask, I can't handle the nose-only ones.)

IF you are the sort of person who likes to monitor your own numbers and have as much data as possible, you will want a machine that lets you access your own data. There's a free open source program for this called SleepyHead. If that sounds interesting to you, go in prepared with knowledge about what specific model of CPAP you want, because they don't all do this. If you go on and say "I want (this model)", you can get a prescription for that specific model, and your insurance company is less likely to fight you on it.

(I have and like the ResMed S9 for this, but it's several years old now, there may be newer and fancier things.)

If you find you have trouble with air leaks or don't like the mask touching your face, there are soft fabric mask liners you can get that help minimize leaks and feel nicer. I get mine from Pad-a-Cheek, but there are companies that sell disposable versions if you don't want to keep and launder reusable ones.

You may not be able to sleep with it for a full night right away. That's fine and very normal, you can work up to it. I would take mine off in my sleep at first, so for a while I added a head strap thing to hold it on - Pad a Cheek makes those, too. I don't need that anymore but it was helpful for a while.

There are entire specialized CPAP forums, if you want to really dive in to questions about particular models, strategies, etc.
posted by Stacey at 9:20 AM on April 7, 2017 [3 favorites]

I was worried about it too before I started this process, and it's really not as big a deal as I thought it would be. Here's what I learned.

After I was diagnosed with sleep apnea during a sleep study, they did a trial run of a CPAP machine. The pressure they set was way too high and I woke up in a panic with the worst dry-mouth I've ever experienced. Lesson learned: use an APAP machine with a humidifier. If your doctor doesn't already recommend using the APAP, I would bring it up and try it first. The APAP (Automatic Positive Airway Pressure) machine is different from the CPAP (Continuous Positive Airway Pressure) machine in that it's constantly adjusting the air pressure in response to your breathing, so it doesn't feel invasive. You'll probably only notice it while you're going to sleep, not at night.

If you're a stomach or side sleeper, you might occasionally experience the mask coming off your face while you sleep. If you sleep on your back, you probably won't have that problem. I used to be a 100% stomach sleeper who turned over a lot at night; now I sleep more often on my back, I think.

I use a nasal pillow - it covers just the nose only, not the mouth. It was a little odd the first time I wore it, but I quickly got used to it. After a night or two, I don't mind it at all. I can actually talk with it on, it just feels and sounds a little funny, like I'm talking while pinching my nose. The type of mask you use depends on personal preference, but make sure you get the right size or it will come off while you're asleep and wake you up.

I would get mask cleaning wipes and use them daily when you wake up - it makes a noticeable difference in the life of the masks, which you have to replace regularly. Make sure you clean the tube and reservoir (if you have a machine with a humidifier) regularly, according to the schedule they recommend.

If you move around at night, or just want to insulate the hose more, you can get a fleecy sleeve for it on amazon for about $10. My hose has ridges on the outside (I think all of them do, actually) and they would rub against the corner of my bed or nightstand and make noise whenever I moved around at night.

I used to put off replacing the headgear and masks, not wanting to spend the money on them more frequently than absolutely necessary. Now, I just replace them whenever they're starting to wear out. The cost of those items is not worth the more frequent waking up due to the mask seal not being right.
posted by hootenatty at 9:51 AM on April 7, 2017 [2 favorites]

I very much prefer the nasal pillows style mask. I hardly notice it now, and I can easily go from back sleeping to side sleeping without dislodging the mask. I was a mouth breather at night until I started using the machine--now the airflow naturally prevents me from opening my mouth while sleeping. Upside: no more sore throats in the morning!

The advice I got was to wear the mask for an hour or so before you intend to fall asleep, to get used to the feeling. That definitely helped. I'd been worried that I wouldn't be able to sleep with a hose coming off my face, but that ended up being a non-problem.

When you go to talk to the person setting you up with the machine, they should let you try on several types of mask. They should also thoroughly explain how to use the machine, and how to clean the hardware. I give mine a weekly good cleaning, with nightly quick soapy cleanings for the nose pillow part itself. The guy who set me up said good old dawn dish soap works just as well as any specialized wipes. It's also a good idea to wash your face right before putting it on--just because facial oils can affect the fit.
posted by lovecrafty at 10:10 AM on April 7, 2017

So hard to add on to all the good advice so far here. My suggestion is to try to remain relaxed about trying it while sleeping - I was really afraid that I'd never fall asleep but I passed right out.

For keeping the mask clean I've found washing every night with Cetaphil works best and I actually don't clean the mask itself every day, which sounds kind of gross, but it irritates my skin less that way. You'll have to see what kind of mask cleaning regime works best for you. I still tend to get redness where the mask rests and I've found that Cetaphil Redness Relieving Night Moisturizer really works wonders. Like, a huge difference.

And try to get as compact a machine as possible as I tried to skip bringing my machine on business trips a few times and that was a huge mistake. For better or worse you're sleeping with that thing every night from now on.
posted by GuyZero at 10:36 AM on April 7, 2017

whatever you do don't get the surgery associated with apnea/snoring. it almost never helps and often makes things worse. ask your doctor about BiPap instead of Cpap, which is bidirectional and users report an easier time falling asleep.
posted by evilmonk at 11:26 AM on April 7, 2017

The guy at Kaiser had a good suggestion: try it out for an hour or two just sitting and reading before you try it in bed. It helps ramp down the "oh god am I going to be able to sleep" anxiety.
posted by ottereroticist at 11:35 AM on April 7, 2017 [2 favorites]

Mask. Get /make the fuzzy cover to prevent rainout.

Figure out how to deal with the damn hose! I went on line, looked, and made my own hose stand out of PVC pipe. Keeps mei from thrashing with the hose at night.

Get a bipap machine if that's what is called for. Big difference. Don't use Norco as your provider.
posted by BlueHorse at 12:23 PM on April 7, 2017 [1 favorite]

Getting a CPAP has been an overwhelmingly positive experience for me. I didn't think I'd be able to sleep with a hose to wrangle (I move around a lot at night) and stuff touching my face because I was such a light sleeper - but I was a light sleeper because of the OSA.

During the first month trial, mine was set to ramp from 4 (the lowest) all the way to like 20, to see where I needed to be so some nights it felt like it was going to blow me away...that part isn't forever so don't worry about it.

I snore/mouth-breathe at night so I have a full mask but there's nothing touching my forehead and I never have marks in the morning. I suffered through silicone-to-skin for about 9 months before I tried a fabric liner and I love it, it's SO much better (those are expensive, I'm going to try to make more myself).

One thing I didn't see mentioned, actually...if you're a side sleeper, there can be issues with the pillow pushing the mask off-kilter and causing leaks. There are special pillows you can use but I just use a (shredded) memory foam pillow - I took off the compression cover and let the chunks of memory foam spread out, then I can beat it into submission and arrange a "hole" for my mask to rest in.

If you have any questions here or as you get started, I'd be happy to try to help, feel free to mail me here :)
posted by kattyann at 12:36 PM on April 7, 2017 [2 favorites]

I'm not the best to be giving advice because I despise my APAP (adjustable CPAP), but here are some things I've tried.

I started out with the nose pillows, but I have a deviated septum and one nostril seemed to always be stuffed up. I now use a full nasal mask, which works better. I still have to use Flonase often to keep things open. I also played around with my settings. Condensation in the mask means your humidity is too high. Sometimes I've turned the humidity levels up or down, depending on the weather or having a cold. Explore your other settings, too, and read up on what they mean.

Many people swear by CPAPs, but I have yet to experience the big life-changing boost in restfulness, energy, weight loss, etc. It's there, I sleep OK with it, the mask still bugs me because I'm a side sleeper, and I get stuffy/wheezy easily. Other than that, it's cool!
posted by jhope71 at 1:41 PM on April 7, 2017 [1 favorite]

please delete if this is too much of a threadjack: but can you not wear moisturizer/acne cream/etc. when you have one of these things? i'm on schedule to get one in may.
posted by misanthropicsarah at 1:43 PM on April 7, 2017

please delete if this is too much of a threadjack: but can you not wear moisturizer/acne cream/etc. when you have one of these things? i'm on schedule to get one in may.

I can't speak to the moisturizer part, but when I get a zit that's right where my mask touches my face, I usually apply acne cream and then put a Band-Aid over it. The upside is that having the Band-Aid there seems to really help my skin absorb the cream, which makes the zit go away more quickly.

On a related note, be sure to wash your face every evening, if you don't already. I didn't at first and I developed acne in the areas where my mask touched my face.

I also had the damnedest time falling asleep with my machine, until I started running a fan to mask the noise. YMMV, because I'm extra sensitive to noise, but having some sort of white noise might help you if you run into the same problem.

Good luck!
posted by dean_deen at 6:25 PM on April 7, 2017

My spouse wears a nasal mask. It tends to vibrate just enough that, while it doesn't leak, it did cause his skin to darken in the spots where it rubbed. So now he uses medical tape to protect those spots - cheap and works perfectly. Basically, it's trial and error for the masks. Don't give up if your mask sucks, just try another style or brand. There are accessories and products to fix almost any issue you can think of. My husband hates the hose dragging against his shoulder so we have a hose hook that extends from the bed and up over his head that the heated hose is velcroed to- it swivels so he can turn side to side and the hose will follow. It's been life changing for him and I hope you also get relief.
posted by PorcineWithMe at 7:12 PM on April 7, 2017 [2 favorites]

I am three weeks in. Just do it!

At the cpaptalk forums, they will critique your progress/results based on graphs drawn by the free sleepyHead software. Make sure to put an SD card in your machine to gather full data.

Good luck!
posted by wenestvedt at 7:37 PM on April 7, 2017

Just dropping in to say that if the first week isn't successful, don't give up. There are many different masks and techniques. You will be an expert in the lingo soon enough! If you feel at all like you're not getting enough air through the mask, you should either contact your device provider or adjust the pressure during a daytime test to see if it feels better. CPAP machines typically have "locked" clinician modes for settings like air pressure. The discussion board you linked to will be able to help you unlock your machine (like control - alt - delete for cpap). Write down all of the settings in case you change something you don't like and can't revert! You'll also be able to remove the data card from the machine and look at basic sleep stats by date, so make a note of settings that you change and try to only change one thing at a time. That way you can see what effect the change had on your sleep.

(Also there are multiple kinds of dental devices for sleep apnea. Several of them are custom made. If your dentist only works with one kind, it may be worth looking for another dentist. YMMV.)
posted by Kalatraz at 2:10 AM on April 8, 2017

I feel so much better with CPAP. But it took a while to get used to it. I use nasal pillows with a chinstrap. Mouth unit caused too much swallowing of air.
posted by persona au gratin at 3:13 AM on April 8, 2017

After about a week of CPAP I dreaded it. I stuck with it. After two months I felt so much better.
posted by persona au gratin at 3:16 AM on April 8, 2017 [1 favorite]

Apologies if this is a little stream of consciousness but hopefully some of this will be useful.

First, I was worried about how well I'd be able to sleep with CPAP. It wasn't a problem at all and I was sleeping normally with it after a couple nights.

The best CPAP forum I've found is apneaboard.com. Take a look there before your appointment. It will be overwhelming because there's a lot of information, but it's worth it.

This part is important - you'll want a data capable machine so you can monitor your own therapy using the program SleepyHead. There are many more details about this at apneaboards.com. This is the single best way to know that the CPAP is working for you, and also the best way to get data to adjust things if it's not. Don't worry if it seems confusing now and you don't look at the data, but you need a data capable machine if you ever want to use it in the future.

Be willing to experiment, especially with masks (including sizes of masks). My supplier said a small mask fit, but it turned out a medium was much better. You can't really tell if a mask is comfortable in the couple minutes they give you at their office. Also experiment with the comfort settings like ramp and humidity. I personally find the ramp settings uncomfortable so I start at my therapeutic pressure (which is only 7, so ymmv especially if you need more pressure).

Regarding masks, cpap.com has a very generous return policy that's ultimately funded by the manufacturers. I've gotten and returned several masks (and also kept several) from there.

The ResMed P10 is probably one of the most comfortable masks I've used. It's so comfortable a couple times I've had to check that my machine is actually on and blowing.

I also haven't found a single mask that works all the time - unfortunately they irritate my nose. But switching occasionally between a nasal and pillows mask works well for me. I also have a full face mask that's useful when I have a cold or extremely stuff up nose.

Depending on your insurance benefits it may be cheaper to order online at places like cpap.com rather than through a local DME. My insurance coverage is good so I only order new masks to try from cpap.com and then get them at my next resupply with my insurance.

I'm a huge fan of a hose cozy (I use a SnuggleHose). It helps with rainout but the biggest advantage is it makes it so I don't have a plastic feeling hose on top of me all night.
posted by unix at 10:22 AM on April 8, 2017 [3 favorites]

Nthing getting used to your mask and machine while you're awake and reading, watching tv, reading Metafilter, etc. For the first month I had my BIPAP (with supplemental oxygen), that was the only way I could get anywhere near compliance, because I kept taking the mask off in my sleep.

I was terrified I'd feel claustrophobic, or like I was suffocating, both from the mask and from the air pressure variability. In case you don't know, BIPAP machines blow harder when you inhale and softer when you exhale. I had a really hard time adjusting to that at first. But now that I'm used to it, it doesn't feel oppressive at all.
posted by The Almighty Mommy Goddess at 12:34 PM on April 8, 2017

I toss and turn a fair amount when sleeping and got tired of getting tangled in my hose and having to untangle myself in the middle of the night. This year I had some "use it or lose it" money in my Flexible Spending Account that had to be spent before it expired and so I ordered a device called a Hose Buddy and I recommend considering it or a similar hose-management system.

When I started using CPAP it took me several weeks to get acclimated and even now I rarely sleep with the mask on for the whole night. But it definitely has helped my sleep quality and my health has substantially improved. One thing that I never even suspected was connected to apnea was that I previously used to suffer quite frequently from sinus congestion and related problems. I always assumed these problems were due to allergies, though allergen tests never revealed the cause. Once I started sleeping with CPAP the constant chronic sinus problems largely disappeared and I now believe they were a side-effect of irritation from the constant closing and re-opening of my airways during the night.
posted by Nerd of the North at 2:23 PM on April 8, 2017

Many people swear by CPAPs, but I have yet to experience the big life-changing boost in restfulness, energy, weight loss, etc. It's there, I sleep OK with it, the mask still bugs me...

I don't swear by mine, but I do swear at occasionally. No big life-changer, but I can sleep OK most of the time. After having had a stroke, if this is what I need to do to avoid another, then I'll pull up my socks and get on with it.

I use lotion with my CPAP. I know they say don't, unless it's the redonkulasly expensive stuff you get "specially designed for use with a CPAP" but I think that's unnecessary. I use the DreamWear nasal mask, and I have the fuzzy cheek covers that keep the mask from contacting most of my face. I don't put any lotion under my nose. You may have to find what lotion works best for you if the mask breaks you out, but I'm good with unscented Aveeno. I make it a point to wipe my mask daily, and I replace it on the suggested schedule.

One another thing, if you live with pets or in a dusty area, make sure you replace the filter on the suggested schedule, if not weekly. And don't let the water reservoir run dry--it stinks like a tea kettle that's boiled dry!
posted by BlueHorse at 10:41 PM on April 8, 2017

Response by poster: Hello everyone, just wanted to follow up and say thank you all so much for your advice and support. I was really freaking out and this thread helped a lot in pushing through that. I've been on CPAP for one week and I survived. I did go back today to try a different mask so we'll see how that goes. I've been able to stick with it and the physical part has been basically fine. Emotionally it is more of a struggle for me but I'm doing the best I can with that and just continuing on with doing this regardless of all my mental resistance because it seems this is the correct decision for my future health. Again, I really appreciate everyone's help. Thank you.
posted by atruesock at 11:13 AM on April 14, 2017 [1 favorite]

« Older Make a to-do list? It's on my to do list   |   Last minute bachelorette ideas! Newer »
This thread is closed to new comments.