CPAP and naps

[Coach]

Hey all,

One of the (I think) more experienced posters wrote in a recent post that she (I think it was) didn't use CPAP for naps. I assume A behavior is to use it whenever one sleeps. I'm still new to CPAP (and, yes, doubtful about my using it). Ideally, I'll get used to it and be completely compliant, but for now I'm not. I have apnea, my numbers are lousy, but subjectively I felt fine without CPAP, am tired and moody with it. I feel like I'll remain so, but I know enough to discount the feeling pretty heavily so early in my adjustment. My former doc (who's no longer in the area), whom I think was very good (what do I know?), doubted it would improve my quality of life (which for now, knock on wood, remains high), though, as my present doc pointed out, he didn't have me do a sleep study so didn't see my numbers. (They were associates in the same practice, are both respected by their patients and peers, and tended to disagree, not infrequently 180 degrees, on treatments.) My original doc's not having done the sleep study likely appals some of you, and may have been a second-best or even a bad call, but while I know that CPAP offers the best possible result in general, I'm not yet convinced if offers me the best all-around result. It well may, but I know there are people who decide, I think sometimes rightly, that their quality of life is superior with lousy numbers and without CPAP than with CPAP.

But I started writing about naps. Last night I got a solid hour and a half of good (well, I have no software, but it seemed good) sleep after I fell asleep CPAPing. Then I waked, was pleased to see I'd slept well for ninety minutes, ramped it down, failed to fall back asleep, ramped it down again, slept 20 more minutes, waked, ramped it down, and soon turned it off for the night, at which point I got a comfortable four hours more sleep, though I was briefly conscious a couple of times. I could (maybe) have toughed it out all night, which is what I did my first two nights, but just as apnea strains our cardiovascular systems and courts pathological events, so must excessive toughing out. The question, as always, is what constitutes excess.

Each of you has his and her personal experiences, plus you've each others' input, and some of you are RTs or otherwise trained. My assumption is that some CPAP is better than none, even for the relatively rare person who never does adjust, and that more is better than some. In other words, I'm guessing that being minimally compliant is better than being noncompliant, partly because minimal compliance reduces the relatively unprotected hours of sleep and partly because over time minimal compliance may become fuller compliance. Agree? Disagree? Sleep well tonight.

[Sleepless on LI]

Coach,

Sounds like you have been really thinking of should you or shouldn't you. Let me say, you should. No if's, and's or but's. If you do your homework, you know that OSA leads to all types of physical and emotional problems, including cardiovascular problems and, in the worst case scenario, can be responsible for deaths. You said you have bad numbers which means you definitely need to be on CPAP.

You also said you are new at this, and all of us here can relate to how hard it can be to adjust to therapy. But you should try your hardest to be compliant, naps, at night, whenever you are sleeping. The more you wear the mask, the quicker you will get the help you're looking to get. Your doctor, the first one, was wrong. It can and will change your life. It did for me. Not only did it take away some physical ailments, it improved my emotional state, too, by taking away my fatigue, giving me so much more energy that I was happy again, rarin' to go and do whatever, and it gave me the ability to want to exercise and eat right again. I have lost just shy 20 lbs. in the past four months and only have a few more to go to get to my goal. Why? Because I stuck with the program and it worked.

Doctors can tell you anything they feel like telling you. But for this first doctor to discourage you from believing CPAP therapy can change your life, and to diagnose you without a sleep study, well, that doesn't say too much for him in my book as far as being credible in dealing with sleep disorders. You need to have a PSG done and be titrated, and then put on the only therapy that can give you back your life or even improve it. Although it takes time to get used to wearing the mask, physically and mentally, it is worth every second you do.

Also, this site is the best out there to get support, encouragement, vent your frustrations or get answers to any questions because, unlike that doctor who told you those things, we've been there, done that. I'm on therapy for four months and am still learning every day thanks to the people on this site's help.

Please do not give up. Keep a positive attitude and know that this will work. And try to thank God that you were diagnosed with an ailment that can not only be treated, but can make your life better than it was before.

[Grabraham]

I think the saga you discribed is very typical in the begining of CPAP and is part of getting used to it all. Without "knowing the numbers" for you I will make the general statement that it is my belief that if you do have OSA that any sleep with proprely tritrated cpap therapy is bound to be more restfull, restorative and good for your health. So some compliance is better than none, but if you need the therapy make an effort to get used to the treatment and get as much as you can

[ozij]

Hi Coach
Your description reminded me of my first nights, now forgotten, where frustration got the better of me, and I just put the mask aside, and slept.

Like many other things - this "new way of sleeping" is something your body and mind have to get used to - and for some of us, the accomodation process is longer than for others.

One thing I was (and am) very consistent about is using the CPAP for each and every nap. If you have sleep disordered breathing, your breathing is distrubed whenever you sleep. Furthermore, Using the mask for naps is a kind of training for those longer nighttime strerches. You can be lenient with yourself about the nights in the beginning, but be very firm about nap time.

This process of gradually getting used to something is called behavior shaping. Or, to quote Chairman Mao (I think it was him)"Even a long journey starts with one step".

When I started out, I found the following very helpful too:
Littlebaddow's diary (Littlebaddow is a poster from England).

O.

[Barb (Seattle)]

"some is better than none"

uhhmm...no. Not for me. When I take a nap, I wake up within minutes, and I know that the reason is I'm sleeping without my mask, and am having apneas I used to be able to sleep for a couple hours without a problem. I've been putting off using CPAP for naps because I have already cleaned it in the morning, and would have to clean it again...the mask gets oily if not cleaned and doesn't fit as well. Lazy, aren't I? I really SHOULD use the CPAP during a nap...

[rested gal]

Using the mask for naps is a kind of training for those longer nighttime strerches.

Never had thought of it that way, but that makes good sense, ozij. I like that!

I've always used machine and mask for naps, no matter how short I anticipated the nap might be. I simply don't want to deliberately put my body through a struggle for air while I sleep -- anytime. A struggle that's very real and is really happening even though I'm "asleep" and oblivious to it. A struggle that can be avoided with the flip of a switch.

Quality of life. Very subjective thing, isn't it? What will we put up with, or endure; and what will we say just isn't worth it? Each individual has his/her own answer to that. Sometimes the answer changes when faced with actual situations. You know that better than most here, Coach.

There are sooo many pieces to the puzzle when it comes to making CPAP treatment comfortable enough to actually "do it." When you get less sleep than ever before, and feel worse rather than better, it's very tempting to say, "To h*** with this!" Unless a person is very lucky OR can figure out for himself/herself what to change about their setup, this kind of treatment can be very difficult to put up with.

A comfortable mask is the #1 key to sticking with this, imho.

No mask is as comfortable as sleeping without one at all. If a mask is almost suitable, then doing whatever it takes to customize it to be as comfortable as possible sure can help. A good mask can better ease a person through the early stage of getting used to this crazy way of trying to sleep.

While it's great to have a sympathetic, helpful, cheerful, comes-whenever-you-need'em RT, you're still spinning your wheels if the the people providing your equipment (especially the mask!) truly don't know how to configure everything for YOUR comfort.

It all revolves around the mask. The most important single piece of all to work into the puzzle, imho.

Get that piece right and you won't have to wonder about whether some cpap treatment is better than none (it is) or whether the getting-everything-fixed-right aggravations are worth it (they are.)

If anything about the treatment hurts, wakes you up, irritates, annoys, causes more sleep problems than ever before, leaves you more worn out than before...don't take "That's something you have to get used to" as the only answer. Especially if that answer is coming from a clueless-about-cpap-comfort profit driven DME, no matter how intelligent and caring the person they send out to you happens to be; or how credentialed, knowledgeable and experienced he/she is in the respiratory field in general. Comfort issues with cpap are a whole other ballgame.

You're doing it already, Coach, but continue to immerse yourself in the old posts on this message board, as well as the talkaboutsleep.com and the apneasupport.org message boards. Search for every hint, tip, and trick you can find to help you use the mask/machine longer and more comfortably. Dig into the message boards as if you were a med student studying for the most important exam of your life. It really is that important.

As Janelle often says about the mask: "That's your life hanging on the bedpost -- use it!"

I'd add only...do it one comfortable step at a time, if that's what it takes to get there.

[frostman]

I guess one question I have is how do you know you have OSA with no study??? Are you on an auto machine which can tell you your numbers??? I for one don't use cpap for naps. I love my naps on the couch in front of the TV. I can usually take a nap, and the sleep quite well that night with cpap on. Its just a choice I make

[ufo13-guested]

COACH:

The collective thoughts and advice of Lori (Sleepless), Grabraham, ozij, and RG (rested gal) above are FULL of GREAT points of information! This collective group of cpaper's have given superior knowledge to all and i agree with every point, so there is NO need for me to write a lenghtly post because they hit on every point i was going to tell you!

Happy Sunday and GODSPEED!


steve,
ufo13

[sleepyred]

If you use a heated humidifier at night, do you have to use it for a nap? In other words, will it mess up your machine? Do you just turn it off? I wash my resevior when i wake up and don't want to fill it up just for a nap.

[Coach]

Thanks for your input, all. I'm sure adjusting to CPAP is often frustrating. When I was put to bed last night the guy helping me, who I know from things he's told me has apnea himself, said he could never tolerate a tethered mask; I was properly (and silently) critical of his unwillingness to put up with some initial frustration.

Sleepless, you wrote: "Your doctor, the first one, was wrong. It can and will change your life. It did for me. Not only did it take away some physical ailments, it improved my emotional state, too, by taking away my fatigue, giving me so much more energy that I was happy again, rarin' to go and do whatever, and it gave me the ability to want to exercise and eat right again." Part of my problem is that I had no particular physical complaints, no fatigue, a good diet, high energy, and an excellent emotional state. My doc knew this. (I saw him because I had told my GP that I occasionally couldn't get as deep and full a breath as I wanted.) You seem to have received uniformly positive feedback from your CPAP experience. Four days into mine--which I know is a very short time--all my feedback has been negative. I hurt more than usual, am tired with relatively low energy, and am teetering too close to the verge of a mood that characterized maybe the two most depressed 6-week stretches of my life. (Neither of which was when I was permanently paralyzed in a 1963 car accident; both times I was usually using a ventilator.) Last night was the worst of my first four with CPAP.

Ah well, despite the tone and matter of my posts, I intend to keep at this. Frostman: I've had sleep studies.
Rested: You zero in on the problem, which is how the mask and breathing through it feels. Each night I put it on I'm pleasantly surprised at how simple and painless it is. (My worry about getting it on after I take it off is largely gone.) But each night the longer I use it, the more it hurts my nose. It's admittedly a small hurt, nothing Mr. Gonzales would think torture, but rather than going away it does tend to increase. (I'm never quite sure the mask's straps aren't twisted. And, nuts, I guess the Gonzales crack is out of place on this board; lack of sleep has me mm cranky.) I took it off at 12:30 this morning, put it back on when I waked at 4--though I of course wanted just to go back to sleep--and took it off for good at 4:30, my mind a mess. (Nor did I get back to sleep after 4:30, poor guy, at least not to very deep sleep.) My rep Fran will be here Thursday with one or two other masks, one of them both nose and mouth. At my study I used a nose-and-mouth mask and tolerated it, but the nasal mask is obviously preferable if it'll work.
Ozij: I checked out the diary link; it's a good one. He seems to've dealt with his difficulties much as I'm dealing with mine.

[Sleepless on LI]

Coach,

What really bothered me was that not only did your doctor make a statement about it not improving your quality of life, he didn't bother to do a sleep study before he diagnosed you with OSA. In my mind, those were two strikes against him.

You say your numbers, when you finally had the study done, were bad, yet you don't feel any bad effects from the condition. My first reaction is that it was amazing that this first doctor even had the hint of your having OSA with no symptoms and a high quality of life. I don't think I've ever read any posts from any other members on this site that had bad numbers at their studies with no symptoms. You are very fortunate in that regard.

May I ask, was your sleep disrupted at all during your pre-therapy days? Did you awaken for any reasons during the night? If not, no wonder you feel worse now. You are up with the mask, not used to wearing it yet or not happy with the one you've chosen. No matter what the cause, disruption in sleep is the pits. Perhaps the RT who is coming to your house can bring a nasal pillow interface, too, to try as they are usually the least obstructive on your face when you sleep. It would be best to have as many different types to try when she comes this time.

I truly wish you the best and hope you can overcome this negative reaction to therapy. It may be harder for you since you may not have had any visible signs of the ailment and now you're being disrupted every night to treat something you couldn't tell you had by the way you're feeling. Let us know how you make out, please.

[Guest]

If you use a heated humidifier at night, do you have to use it for a nap? In other words, will it mess up your machine? Do you just turn it off? I wash my resevior when i wake up and don't want to fill it up just for a nap.

Yes, I use my heated humidifier for naps too. It will not mess up your machine. You don't need to wash your reservoir every time you wake up. Just fill it up (with only distilled water) turn it on and use it during your nap. When your nap is over, turn it off. Whatever amount of water that remains in the chamber can be left there and just add to it before you go to bed at night.

[Coach]

Sleepless,

You've zeroed in on my difficulty, not solved my problem but given me someone I can talk to better. It'll help having someone who understands my problem is partly that I was subjectively doing well and now, as I try to adjust to CPAP, am not.

My first doc didn't order a sleep study because I had no subjective complaints, getting to the sleep lab would be difficult, and my sleeping arrangements at home (waterbed) couldn't be duplicated in the available lab. He didn't diagnose me with OSA, though mentioned it as a possibility when we discussed the results of my overnight oxymetry. He thought I was not in danger of sudden death but that to do nothing risked shortening my life expectancy. He prescribed oxygen, which I did for the next eighteen months. Before starting oxygen, I was often waking four or five times a night. While using it, I tended to wake once, about 90 minutes after first falling asleep. I would then fall back asleep, sometimes having done nothing, sometimes having done a second diphenhydramine (Benadryl), and sometimes having done a low dose of alpraxolam (Xanax). I think his reasoning was along the lines of if it ain't broke, don't fix it.

My second doc, with reason, distrusted the decision to do no sleep study. He (without seeing me, which was annoying but not necessarily relevant) refused to certify me for oxygen and insisted I do aleep study. I sought to do an oxymetry at home and using oxygen first but he (through his nurse practitioners) refused. I did the sleep study, and the number (I forget its name) that is supposed to be below 5, was about 25. He diagnosed mixed causes, but explained to me both are called apnea and that apnea is defined at not breathing a certain length of time a certain number of times an hour. I went for titration, wore a full mask most of the night, and with CPAP at about 11 (again, I don't know 11 what, don't yet have the lingo) and some O2 my number was cut to about 4.5. Obviously, all else being equal, CPAP is the answer.

From reading posts here, I think it probable I'll adjust to CPAP. In the meantime, though, I'm a physical and psychological mess. I'm an independent quadriplegic, live in my own home with a family that lives upstairs and helps me to bed nights. I liked the first doc a bit more than the second, trusted his judgment a bit more too. From what I've been able to read, though, the second doc, whose judgment I respect, has made the better call. I now hope to reach the first doc and ask him what he was thinking, because my guess is that he was indeed thinking something that made sense. Maybe not. Maybe he was taking a short-cut for insubstantial or even wrong-headed reasons. Whether, in a telephone conversation, I'll be able to dredge up the right questions and understand his responses I dunno. I hope I at least call him. I also plan to reread Littlebaddow's diary as ozij suggested and maybe post a question there.

I used my mask three separate times last night and got a little--less than an hour--sleep two of them. I know I slept because of how much time passed; I felt awake. I slept relatively well without the mask, including one 3 1/2 hour stretch, but obviously waked then too, since I would then force myself to try the mask again. Thanks for your efforts on my behalf. And thanks for noticing that I really am having a problem that, while it is one shared by many, something many many people on this board have experienced and fought their way through, does have the odd twist that from my subjective point of view I was doing so well before CPAP.

[tomjax]

Your doc confirms by thoughts that docs are like a box of chocolates--------
You seem to have one that is not very well informed, but that will never stop them enjoying their diety complexes.

Perhaps I am too atteched and dependent on my cpap. I read in bed and will put on my cpap whenever I lie down. Reading napping, and most everything I do in bed.

I am not one who is convinced the ramp feature is nothing but a sales gimmick. I find it totally worthless for me. Others may have their reasons for using it, but I would venture that habit has more to do with it than any practical benefit.

You seem to have a pragmatic and cogent approach to your apnea.
Keep learning. It is your health that you are in charge of, not the docs.

[Sleepless on LI]

Coach,

Now that I've zeroed in on the problem, I wish I could zero in on the cure for it. The number you're referring to probably is the AHI. The AHI of 25 means that hourly you had 25 events that consisted of apneas, hypopneas or both. That is not mild apnea, nor is it severe, but it is definitely an AHI that needs treatment with CPAP.

Boy, can I understand the grief you're going through as you never had trouble before knowing all of this with your health or sleeping (so you thought). You slept well and felt fine, and now they tell you that you have OSA, shove a mask on your face and tell you it will make you feel better. NOT! You felt fine before, although it was a tremendous health risk to either stop breathing all together/have restriction in airflow 25 times an hour throughout the night. 11 is much better, with under 5 being normal. It truly was a matter of time, though, before your health started to deteriorate with an AHI like that and your oxygen desaturations, oo. Try to hold onto that thought as you struggle to get used to this new way of sleeping.

I truly believe you need to find a mask that will make you sleep better without disrupting your sleep as much as it is now. Like they always say on this site, it's not the treatment/machine that causes us the grief, but the masks. But once you find one that is tolerable and spend some time working out the kinks, you will be so much better off for it in the long run.

I know this is the hardest thing to do right now, but try to look at it like a blessing that they found out you had OSA. When you are asymptomatic, that is a pretty lucky find. And it truly was a matter of time before you would have started to see a decline in your health. No one can have an 25 AHI and oxygen desats like you and not eventually pay for it if untreated.

Please let us all know how your visit with the RT goes. Ask about a nasal pillow interface, which has the least amount of mask touching the skin and making sleep difficult. I will say a prayer for you in the hopes you find your way. Until that time, please keep posting as we are all here supporting you and wishing you the best.