Seeking Help with Some CPAP/Apnea Issues

September 27, 2006 8:49 AM

Do you have sleep apnea and use a CPAP machine, or do you know someone who does? Help a CPAP newbie who's having a rough ride by answering a few questions and/or giving advice.

In advance, please excuse me for the length of this; I'm asking a number of questions, which is why this goes on for a bit.

My first question on Ask MeFi was about CPAP (continuous positive airway pressure) shortly after being diagnosed with sleep apnea. I very much did not want to undergo CPAP therapy, and my life underwent some traumatic twists and turns, making it easy to push the therapy to the back burner. Recently, however, my doctor has made it clear I need to go back on it, and so after work on Monday, Walgreens Home Care dropped off a Respironics REMstar plus (with humidifier) and a medium ResMed Ultra Mirage Full Face Mask, which I've used for two nights.

First, both nights, I've woken up at least three times during the night, and, moreover, woken up fully conscious and alert. (This only happened rarely in pre-CPAP times.) In order to get back to sleep, I end up needing to essentially go from full consciousness to completely asleep each time, just as I would when I first lay down for the evening. Ideally, I'd love to be able to close my eyes with the CPAP machine on and wake up to the alarm in the morning, and get the full effects of an uninterrupted night's sleep, but that's not happened so far, and I'm quite concerned it won't. Although I have felt the positive effects of CPAP therapy despite the interruptions (I awoke yesterday not feeling as if I'd drunk a million cups of coffee, but nevertheless energetic; the effect is dampened somewhat today - not quite as good, perhaps light fatigue -- but my usual sensation of heavy fatigue seems absent), this nevertheless is a definite hit to my comfort, energy, etc., and I'm wondering when it's going to pass. (As a side question, my pillows seem to be sliding around a lot more than they used to; I'm less able to find a comfortable spot with my head and the pillow.)

Second, equal in severity and possibly related, I'm not sure how to prevent air leaks while remaining comfortable. I've familiarized myself with where and how to adjust the mask, but it seems like any slight change in position causes an air leak to occur, unless I cinch the mask extremely tight to my face. The training video depicts a man adjusting the mask and then being able to turn from side to side without readjusting; with me, even if I rest my head on my hand, it seems to alter my face enough that a leak manifests and I have to cinch the straps and/or adjust. This can alter my sleep; if I adjust myself to get comfortable to fall asleep, I suddenly have to start fiddling with the mask (in the dark) in order to end the leak. I should note that since I've breathed through my mouth for nearly my entire life, the nasal pillows or nasal mask is almost certainly not the route for me. (It was a big problem during my CPAP titration.) Is it a sign that the mask is too small? Too large? And is it acceptable for a leak to exist only during the exhale? I noticed last night that sometimes a "leak" seemed to appear only when I would exhale; if I put my finger near that spot when I was inhaling or not breathing, I detected no vent air coming out.

Third, and also nearly equal in severity, my nose has swiftly and quite severely broken out. Pardon the grossness (I'm not enthused about talking about this, either), but it went from (presumably) normal skin pre-CPAP, to a cluster of whiteheads after Monday night (although, admittedly, I only saw the whiteheads after applying moisturizer to the area), to an unpleasant state of affairs after last night. I get the sense that this is due not to the physical pressure of the mask on the bridge of my nose, but due to air pressure conditions inside the mask; I may be wrong, but where I'm breaking out seems to be not so much on the actual bridge of the nose where the mask is riding, but directly beneath it. When I Googled about this, one commenter advised a questioner that their skin would toughen up within a week's time. Is this the case, or can I expect the condition to just worsen?

Fourth, what is the easiest, simplest, most low-impact way of taking care of my equipment? I'm not very household-conscious or gung-ho about cleaning. The person dropping off the equipment did go through it with me, but I'd nevertheless appreciate your own experiences as to how you wash your equipment and how frequently.

Fifth, when I wake up a few hours before I would normally awake (say, around 4:00 am), it almost feels as if I am breathing normally and without the CPAP at all. Is this normal, i.e., my breathing having grown accustomed to the CPAP by that point? Or is it a mechanical thing, such as the machine "backing off" after a certain period of time? Or is it indicative of a seal problem?

Finally, and still quite importantly, I'm finding myself concerned that the CPAP machine will be a real blow against my attractiveness as a sexual and romantic partner for a woman. I understand that women do have an ability to look past things, but certainly there is also a surface assessment; I'm concerned that the idea of sleeping next to a man with CPAP equipment on his face is such a turn-off that I'll have great difficulty with romantic and sexual relationships in the future. Now, if you already loved the man in question, that would be one state of affairs - for example, if your husband or boyfriend was set up with CPAP after you began dating him, then the romance and the feelings were established first. But has anyone dealt with a situation where the CPAP was established prior to the relationship, and you had to deal with, at some point in the relationship, discussing the apnea and getting the partner acclimated to the idea of sleeping next to someone with equipment on their face?

To recount:

1. Waking up alert and conscious;
2. Preventing air leaks during casual movement;
3. Swift and severe acne outbreak on nose;
4. Taking care of equipment;
5. Feeling as if breathing is 'normal' after several hours of sleep; and
6. Sexual/romantic attractiveness. Thanks, everyone.

posted by WCityMike to health & fitness (24 answers total)

I was never able to get used to all of the things you mention about the CPAP. I just could not sleep AT ALL with that thing on my face and even when I tried to power through the night I noticed no difference in my energy or over all health in the morning. I still felt like hell. Plus, the ordeal of keeping my mouth closed all night was a task that only Sisyphus could relate to.

As far as the female thing, I was a little worried about that, but I didn't live with my girlfriend so on the nights I stayed at her place I just didn't use the CPAP. So really she only had to deal with it a couple of nights a week. Plus, since it was really more of a pain in my ass than anything, I was more than willing to forgo it for her.

I have heard that once you get past all of the annoying little things about having a mask on your face all night, that the CPAP can be effective in some cases. However, I was not willing to sacrifice what little sleep I do get for a three to four or who knows how many months of absolute hell to get through the annoyances. I hope you have much better luck. Me, I'm still searching for a way out of this hell.
posted by spicynuts at 9:01 AM on September 27, 2006

My partner has been using a BiPAP (blows and sucks!) for well over 10 years. She cleans it with vinegar once a week. She sleeps on her face, to help keep it on (and her cat and I both wake up if it starts to leak, and wake her). There are a bunch of different masky things, and you should be able to find one that works pretty well for you.

She says the most important thing is a _heated_ humidifier.

It doesn't bother me at all. Rhythmic white noise. Never has bothered me. Beats the hell out of waking up next to a corpse, or dealing with an irrational, grumpy, hallucinating person.

My e-mail is in my profile, if you want me to put you in contact with her. She's always willing to talk about it, and is a long-term survivor.
posted by QIbHom at 9:12 AM on September 27, 2006

Spicynuts, I can't say I'm pleased with the problems I describe above, but I'm determined to stay with the therapy, as the alternative are some rather serious health consequences for me, and the difference in my demeanor, although not cosmically stellar, is nevertheless appreciable.

My hope is that the apnea is entirely related to my obesity, and that I'll lose sufficient weight over the next 18-24 months to result in no longer having to use this anymore. Failing that, I have heard of some alternatives in the works that I would hope would displace CPAP therapy as the methodology of choice, given enough time.

Just to clarify, I too can't keep my mouth closed (when unconscious, it'd fall back open), so using a face mask that encompasses my nose and mouth takes care of that problem for me.

It sounds like CPAP wasn't the right therapy for you, but I sincerely hope that you are not just letting your apnea go untreated; my understanding is that apnea if left untreated can lead to congestive heart failure in your early forties.
posted by WCityMike at 9:12 AM on September 27, 2006

I've been on C-PAP for about fifteen months now. It hasn't given me the radical change in lifestyle that I'd hoped for, but I stick with it. I, too, realize that if I'd just lose some damn weight the problem would probably go away.

I have no idea how to fix the leaks. They drive me nuts. They drive my wife nuts. My old mask fit better and leaks were less frequent. But I have a new larger adjustable mask (the place I get my equipment was out of the old model and didn't have my size), and it leaks all the frickin' time. I've found it best to sleep on my side, curling the hose next to me so that it's not tugging the mask away from the face. Even so, the hissing and humming of the equipment drives me to distraction. I have to wear earplugs.

My nose doesn't really break out, but I have a perpetual red ring around the bridge, along the sides, and above my lip. It looks like sunburn from skiing, but it's not. It's irritation from the mask. I tried using skin lotion, but that only made things worse. My latest trick, which seems to be helping a little, is to wipe the mask (and my face) with alchol swabs before I put it on. (You can get a box of alcohol swabs for a couple bucks at the pharmacy.) I suspect that I'm getting the red irritation from having the mask too tight. When I got the C-PAP machine, I was told I shouldn't wear the mask tight. But if I don't, then the air leaks are extreme!

Another source of the irritation might be that I don't clean the equipment well enough. I wash the reservoir once every few weeks with soap and water. I try to clean the hose, but I have no clue what I'm doing, really. I wipe the mask down every couple weeks, too. (And, as I said, I wipe it with alcohol now most nights.) Still, the thing gets some nast smells. Just last night I put it on and started it up and just about gagged. Foulness. I got up and emptied the reservoir, adding new water. That helped, but it must be time to wash it out with soap and water again.

All of this really wears on me, especially since I don't feel the C-PAP has significantly improved the quality of my sleep. But, as I say, I know the solution is to lose weight, so I have nobody to blame but myself.
posted by jdroth at 9:23 AM on September 27, 2006

Shit..I didn't realize there was a nose AND mouth mask! Maybe I should give that a shot.

Too be honest, I have a great deal of doubt about my apnea diagnosis. I am quite slim, in otherwise great health, excercise regularly, don't smoke, etc. At the sleep center I felt that I never got to sleep at all due to the wires, the crappy bed and the sub zero air-conditioning, and yet they claimed they were able to diagnose. Who knows. I don't want to derail with that line of conversation, as there have been other threads about the quality of diagnosis for sleep apnea.
posted by spicynuts at 9:26 AM on September 27, 2006

At the sleep center I felt that I never got to sleep at all due to the wires, the crappy bed and the sub zero air-conditioning, and yet they claimed they were able to diagnose.

This was exactly my experience as well. I had to spend two nights. The first night they couldn't really tell; the second night, they decided I had "mild" sleep apnea.

There's no doubt that I snore without my C-PAP machine, but I also feel better rested.
posted by jdroth at 9:28 AM on September 27, 2006

Spicynuts, don't want to contribute to a derail so early on, but starting point for you — the one I'm using. Also this mask, although read its comments for potential fitting problem. Good luck.
posted by WCityMike at 9:30 AM on September 27, 2006

For anyone coming into this thread, please note that although I appreciate jdroth's and spicynuts' responses, the questions do remain, pretty much, unanswered, and your help'd be appreciated sincerely — big quality of life thing for me here.
posted by WCityMike at 9:32 AM on September 27, 2006

I have the same mask you do....it took awhile to "break in". No one warned me about this but the brand new mask leaked like a mofo (at one point I could make it whistle several different musical notes!) and left red sores on my face for the first month. Now it fits like a glove--never leaks, ever....and no red marks.

I only get a partial response as well, but enough of one that it's been worth the hassle.

BTW, you're not supposed to feel like you're struggling against the air flow....I don't understand what your concern is about the "breathing normally" part.

For more info (and a very funny thread about your romantic/sex concerns, if you dig a bit) try the forums at www.talkaboutsleep.com.
posted by availablelight at 9:35 AM on September 27, 2006

Have you considered a mask with nasal pillows? My fiance uses a CPAP and has this mask. The fact that it doesn't touch his face helped him adjust to using it (he really couldn't get used to the nose mask type, having issues with leaks). It does leak slightly if he lays on his stomach at the wrong angle, but that's it. He also uses a velcro strap that goes under his jaw to help prevent air leaking from his mouth. We call it his Marley strap (a la A Christmas Carol).

Also, your pressure might need some small adjustment. You should be able to adjust it slightly up or down to see if that helps at all. I wouldn't make big adjustments without consulting with your doctor.
posted by cabingirl at 9:54 AM on September 27, 2006

Cabingirl, I'll definitely consider the nasal pillows + mouth strap thing, and I'm also curious about the hybrid mask (see the second of the links I gave to Spicynuts) — I'm hesitant to switch masks, but if this continues to be a problem past the breaking-in period that availablelight speaks of, mask-switching (if my insurance covers it) will definitely be contemplated.
posted by WCityMike at 9:59 AM on September 27, 2006

1. You've only been using it two nights. At the moment, you're likely getting more oxygen during sleep than your brain is used to getting - hence the waking up alert. Over the next couple of weeks things should even out.

2. Mask fitting - dump the mask they gave you, tell the doctor you can't tolerate it (due to 'clautrophobia' - whatever, make something up) and switch to the cannula. No leaks and less stuff between you and the pillow.

3. Cannula should fix the outbreaks as there won't be much actually touching your nose.

4. The home care company should have given you a cleaning solution, but the vinegar and water mix should work just fine. IANAD so clarify with him.

5. Yes - you are growing accustomed to the air flow and what you're experiencing is normal (at least from my perspective).

6. Save the CPAP for sleep time, not sex time. If it embarrasses you, then either talk about it or skip wearing it for a night. You could always just say you're really tired (post-you-know-what) and that the CPAP keeps you from snoring. Your paramour may appreciate it?? Also, someone with a borg fetish may find it attractive!! IANAD.
posted by matty at 10:13 AM on September 27, 2006

Matty, thank you for your responses. However, at this particular point, I really do need the full face mask — I pretty much have never breathed through my nose, and it was a major problem in the sleep study, where they didn't have full face masks available — although I'm certainly open to rehashing the mask situation if I can, maybe by means of the strap.
posted by WCityMike at 10:18 AM on September 27, 2006

Also, to clarify, I never really thought of wearing CPAP during sex. (Icky picture!) I'm just concerned that a partner might find sleeping next to someone on CPAP rather horrendous.
posted by WCityMike at 10:21 AM on September 27, 2006

I started with a mask but quickly switched to nasal pillows, which seal against the bottom and interior rims of the nostrils. These are much more comfortable, at least for me, particularly with a head harness that's entirely made of flexible fabric. The pillows are more accommodating to head movement, without leaking. Finally, they're easy to remove and wash in the morning. Dawn dishwashing liquid works great.

I tried an unheated water reservoir, which made no difference at all. I haven't tried a heated one, but my throat and sinuses do fine without any humidification.

My CPAP has a "ramp up" feature that starts it at low pressure for 20 minutes and then gradually increases the speed (over a period of about 30 seconds). In theory, you will have fallen asleep by then. It didn't work. First, if I fell asleep during the delay period, I got into apnea and woke up. Second, the speed increase woke me up. For me, it's much better to start it at final speed.

I read in bed until I start nodding off -- I read the same paragraph over and over. I then put on the mask and am asleep in a couple of minutes.
posted by KRS at 10:54 AM on September 27, 2006

I dated a guy earlier this year who used a CPAP machine, so I'll answer question number six for ya. (From my point of view.)

So, that inevitable time came when we ended up in bed together. He had mentioned that he used it in conversation once before, I didn't really think anything of it. He didn't really make a big deal about it, I think we were just yakking out health stuff (I can talk for days about sciatica, fun, no?)

Anyway, as we were laying there and were starting to fall asleep, I could kind of tell that he was uncomfortable because he kept coughing. Looking back, I think he was trying to see if he could sleep without it. He asked me if "I minded" if he put on the mask. First of all, I thought this was an INSANE question because, hello...dude's gotta breathe, right? So anyway, I'm all, "no, of course not," he puts it on. After that, it wasn't even an issue. If he came to my place, he'd bring it in a bag - it wasn't big at all.

So for me, it was a non-issue. I can understand why you'd be concerned about it because it's a bit out of the ordinary, but really...any decent woman won't have a problem with it. You need it to breathe while you're sleeping, simple as that. And you wouldn't be putting it on until you were done doing your thing and going to sleep anyway, so really...it won't be a deal-breaker or anything for any reasonable person.

Honestly...I kinda liked it. Now before ya'll think I'm nuts because I like masks on my guys, I liked it because of this - It made this really awesome white noise, and I slept like a log every time we spent the night with each other. We're not dating anymore, but we still talk (actually, more now then when we were dating), and I told him that I was going to come over one night just to sleep. Ha!

Also, and this is very important, and I'm sure you know this already, but...don't ever skip using it. I have this habit of googling people I used to know back in the day, and I found the obit of a guy I used to know a long, long time ago. He had sleep apnea, and had fallen asleep without his mask, and apparently suffocated. I don't know all the details (since I only could find the newspaper obit and a friend's blog entry), but a awkwardness the first time you use it with someone is not a big deal compared to that.
posted by AlisonM at 10:55 AM on September 27, 2006

ugh...I meant "a little awkwardness" in my last line right there.
posted by AlisonM at 10:57 AM on September 27, 2006

I've been using CPAP for a little over 3 years. Something you've already mentioned (being determined to stay with it) is half of the best general advice there is - commit to using it, all night, every night. It's going to take a while to adjust, and it probably took me six months before it hit me that I felt better. Lots better. At this point, I can feel the difference if I take a nap without the machine, and having had a second titration after a couple years of use, I can attest that my oxygen saturation levels on CPAP are vastly better than my scary pretreatment levels - even if I wasn't feeling it.

The other half of the best general advice is a heated humidifier. And maybe a hose cover so you don't inhale water.

On the specifics, I echo what Matty said, but I'll tell you that I *always* slept with my mouth open but have had great success with the nasal pillows (and a chinstrap). I tried a full-face mask, and it really didn't work for me. If you feel up to trying the nasal interface route, get a good chinstrap (I like the Topaz by Tiara Med).

The leaks are just going to take time to figure out, and you're going to have to experiment. It's counter-intuitive, but often loosening the straps helps (since the masks inflate). But I always had leaks with the full face-mask, and my doctor basically shrugged and said, "they just leak."

On the romance front, I was worried about that, too. Turns out it's really not an issue, and I usually mention the CPAP before-hand. Not a single woman has found it horrendous. Humorous, maybe, but none of them were bothered by it. The only thing you have to be careful of is not, you know, waking them up with the exhaust. You'll get the hang of it.
posted by averyoldworld at 11:03 AM on September 27, 2006

I have found that full face masks are notorious for leaks. You say that you cannot breathe through your nose though..have you seen an ENT surgeon? Maybe you have and nothing can be done, or maybe you're not interested.

If that is the case...there is an oral mask. It fits between your teeth and your lips. You wouldn't have to worry about spitting it out either, it stays secure. This mask would likely solve your leak AND your whitehead problem.

I should mention however, our sleep physician isn't fond of them as he believes nasal masks to be most effective, but others disagree. I forget the name of the mask right now, but if you email me I'll give it to you a little later..I'm sure we have one kicking around the lab somewhere.
posted by skinnydipp at 11:10 AM on September 27, 2006

I had the same crappy experience at the sleep center (distracting wires, lumpy bed, freezing cold) a few years ago.

They prescribed a CPAP.

The first few days, I thought I would throw the damn thing away. I thought I had to sleep on my back only, which was impossible due to some back problems. They gave me a nose-only mask because I have a beard, and I've always been a "mouth breather."

After about a week, I managed to adapt. It helped that I found out I could sleep on my side, and I got a better seal by shaving a little under my nose.

It has helped. I don't feel as if I have a lot more energy, but I do sleep about 6-7 hours straight, when before 60-90 minutes was normal. My family tells me my snoring used to rock the house, and I'm quiet now. I used to nod out a lot, and don't anymore.

The noise doesn't bother me, no worse than an air conditioner. One problem I had was condensation in the mask. One or two drops of water sometimes drip into my nose, and sometimes the water would slightly fill the vent holes, which would turn them into whistles. This was solved when I got a replacement mask that has a small filter over the vents.

One problem, due to allergies, I have to use a nasal spray 9 months out of the year. My doc's unhappy about this, it's not great for my B/P. But the sprays that aren't supposed to affect B/P don't work.

I only use distilled water. I clean the tank, hose and mask about once a week. I wash the tank with soap and water, then soak everything in hot water with a couple of drops of bleach.
posted by Marky at 11:30 AM on September 27, 2006

I've been using a CPAP for about 6 years, and my apnea is pretty severe. Quick thoughts:

It took me a long, long time to get used to sleeping with the mask, several months at least. Usually I'd wait until I was just about asleep to put in on, though obviously I often just fell asleep, much to the annoyance of my wife, who'd start kicking me when I snored. Now I'm so used to the white noise I have trouble falling asleep without it. As noted above, I can't speak to romance, my wife had already committed to the deal pre-CPAP.

In terms of fit (if you don't try one of the non-mask alternatives) that also takes a bit of time and was very trial-and-error for me. At first I looked at it in terms of all-loose vs. all-tight, which was a pain because I'd either get too many leaks or wake up in pain when it was too tight. What worked for me was figuring out it's a combination of loose and tight between the top and bottom straps, and after a while I'd stumbled upon a fit that was well-sealed but loose enough to move slightly as needed when changing positions. I make small marks with a Sharpie to keep track of adjustments while cleaning, which I don't do as often as I should, but it's fairly simple, just mild soap and water on everything that comes off the unit itself, and change the filters every few months.

Though I've generally fussy skin, I've never had a problem with the CPAP (which is frankly weird) so I can't help you there. Good luck!
posted by jalexei at 11:42 AM on September 27, 2006

Girlfriend of a guy who uses CPAP here. I was actually the one who prompted him to go get the insane snoring checked out, so I was always ok with the idea of him wearing a CPAP machine. We've talked about whether it's something that will affect his dating prospects if he's ever back on the market again, and (while I can't speak for all women) I think it definitely won't. I mean, a gal makes a decision about how attractive you are before she decides to sleep with you. And once you've won that battle it's extremely unlikely that the CPAP would make her never want to do it again. It's more in the ballpark of, "oh, he sleeps with his cats in the bed with him," than, "oh my God, he brought a goat into bed!" So I just can't see it being something that would ever figure into a girl deciding whether or not to keep dating you. Besides there's humor in sharing a joke about sleeping with someone who wears a "nose snorkel."

My boyfriend's CPAP (nasal pillows system) leaks sometimes when he rolls over. Usually I just elbow him, he adjusts it, and goes back to sleep.
posted by MsMolly at 4:41 PM on September 27, 2006

I can speak to the attractiveness factor, since I also have a partner who uses a CPAP. When we first met, he was still undiagnosed (I actually was the one who prodded him towards getting evaluated for sleep apnea) and the snoring was the worst I have ever heard. WAY more unromantic and annoying than the pleasant white noise of a CPAP machine. I slept terribly, and he did too, and we both suffered as a result of him not being treated. The only drawback is that we can't fall asleep while cuddling, or he will snore in my ear and I will have to wake him up to put on his mask. But that's it.

Any partner who takes issue with the machine is not worth your time. And if they don't understand how important it is for you to wear it, treat them to a night of your snoring. Trust me, after that experience, they will love that machine!
posted by tuff at 6:59 AM on September 28, 2006

Just wanted to post a follow-up that most of the above is evening out. My nose breakout has receded, and I'm waking up only once or twice, and feeling "muzzy" enough to fall back asleep quickly on those occasions. The leaks seem to have subsided, or at least I'm not feeling them, and I'll put my fingers near the various spots on my face where I've felt leaks before, to see if I feel air coming out of the mask ... I don't.

That having been said, the initial massive energy boost seems to have departed, too. I don't ... think ... I'm back to pre-CPAP dragging. I'm almost certain sure I'm not ... but I think I'm actually feeling some fatigue again here and there, which I find a little troublesome.
posted by WCityMike at 9:06 AM on September 29, 2006