New to CPAP but feeling much worse instead of better

[Tanuki]

Hi, I’m kind of desperate for help here because I just received and started using my CPAP machine (well, technically it’s an APAP machine rather than a CPAP machine from what I understand?) two days ago, and while I know not to expect to feel totally better after just two nights of using it, what worries me is that both nights I’ve slept poorer than usual and felt worse the next day. Both nights I tossed and turned a lot and woke up feeling very hot, despite the fact that the A/C is on and there are three fans in the room on top of that, and during the day I feel worse than I normally do after a poor night’s sleep—I feel more tense than normal and as if I’m short on breath, and I have an awful headache as well.

I’m using an AirSense 11 with AirFit F30i mask (I’m a side sleeper but also have bad allergies and the sleep therapy place I got my machine from said that that would likely be the best mask option for me). My pressure range was set at 5–15 at first, but I raise the minimum to 7 the second night because I had read that 5 is too low for most people. I’m using the humidifier with the climate control and tube temperate set to auto. I have ramp time set to auto with start pressure at 6 (it was at 4 the first night) and EPR turned on full time at level 1 (it was level 2 the first night, I turned it down because I had read comments saying that could help).

I used the PAP machine the whole night the first night, but on the second night I took it off after I woke up feeling hot and sweaty. This happened both nights, but the first night I figured it could be due to the comforter I was using in bed which I then switched out with a lighter one, but since it still happened the second night (and worse than it was the first night), I knew it had to be related to the PAP machine, which is why I took it off then. I was already feeling terrible before using the PAP machine, but now I’m feeling even worse after these past two nights, and I don’t know what to do. I desperately want to feel better. Yesterday was my parter’s birthday and I felt miserable the entire day and couldn’t really do anything for them because of it.

I’ve been struggling with feeling tired and unrested all the time and having constant brain fog for years now, unsure what the cause could be. It’s made my life absolutely miserable and I can barely do anything anymore, and I don’t even remember the last day I actually felt good. At first I assumed it was just my ADHD, but it only got worse and worse, as did my sleep, and then I started having more physical issues like acid reflux (which I originally thought was unrelated but now believe it’s being brought on by the poor sleep), but I finally got a sleep test recently that diagnosed me with mild to moderate obstructive sleep apnea. I always dismissed the possibility of having sleep apnea before that, as did my doctors, since I didn’t seem to have most of the common signs that I was aware of—I’m not overweight, I don’t snore much, I don’t recall ever waking up gasping for air, etc. But apparently I do have it after all.

Another weird and concerning thing about the past two nights is that, according to my PAP machine, I’ve had more central AI than obstructive AI (3.2:2.5 the first night and 8.7:1.3 the second), despite the fact that my sleep test results had 0 for central apnea. I don’t know what to make of that, but I doubt it’s anything good…

I’ve not installed this OSCAR thing yet to share my data, though I’m not sure if I’d be able to anyway because my PAP machine hasn’t had an SD card in it. I could try to find one to put in it (I’m sure I have one that I could dig out from somewhere, but I’m not sure how likely it is that I’ll be able to actually do that today with how awful I’m feeling), but would that copy the data from the past two nights to it or would it only start recording data on the SD card from that point onward? Alternatively, the ResMed myAir app has a “Download my data” option that sends data via email—is that the same data that I would be getting from an SD card?

I apologize if I’m doing something wrong here as a newbie, or if I’ve overlooked something that I should have read before posting (I glanced through the stickied threads but it’s also hard for me to really process much when I’m feeling as terrible as I am), but I’d be extremely grateful for any kind of guidance on what my issue could possibly be and how I could make my PAP experience better instead of having it make me feel worse like this. This has been a long, frustrating, and expensive journey for me to get to this point, and I had really hoped that getting the PAP machine would finally be the start of things turning around, but now it just seems like I’ve possibly hit another dead end and I just don’t think I can handle that in my current state. I need things to improve, somehow…

[Miss Emerita]

Welcome! If it helps you to know this, a lot of people who do well with PAP therapy have a rough time of it at the beginning. I certainly did. Here are a few thoughts about what you've mentioned:

Set you machine up outside your bedroom and use it during the day or evening while you read, watch TV, or use your devices. Do this for three or four days before even trying to use it at night again. (If your insurance requires you to use the machine for at least 4 hours per day, be sure to get your 4 hours in.) Using the machine is a whole new experience, and although some people take to it right away, many of us don't and need some time to get used to it.

A full-face mask may be right for you, but the big question isn't whether you have allergies but whether you breathe through your mouth or your nose or some of each during the day.

I'd suggest setting your ramp to start at 7. For me, a lower pressure when I exhale is a key to my comfort, so in your place I'd want my EPR to be 3. Your experience may be different, though. Use your day/evening sessions to give all the EPR settings a good trial.

It's common to see some CAs show up when you start using PAP. The CAs are pauses in your breathing that last 10 seconds or more, and they are probably happening after arousals from sleep. They are generally not a concern; the arousals are the problem. With time, you'll probably experience fewer arousals during the night.

I don't know why your body temperature was a problem for you. Let's hope that whatever it was will resolve itself. (If you're a woman around the time of menopause, could you be having hot flashes?)

When you can, find an SD card that's 32 GB or less. Download Oscar to your laptop or desktop computer, and use a card reader if there isn't a slot in your computer. Unfortunately your machine won't give you any detailed data for the nights when you didn't have a card in there.

[ChicagoGranny]

Forget OSCAR for the time being. Get a free account at SleepHQ.com, upload your data and post the link in this thread. Any 32GB or smaller SD card will work for data recording.

Don't worry about the AIs at this point. You were probably wakeful when they occurred. In this case, they mean nothing.

BTW, it's common to have a rough start with CPAP.

[Tanuki]

Welcome! If it helps you to know this, a lot of people who do well with PAP therapy have a rough time of it at the beginning. I certainly did. Here are a few thoughts about what you've mentioned:

Set you machine up outside your bedroom and use it during the day or evening while you read, watch TV, or use your devices. Do this for three or four days before even trying to use it at night again. (If your insurance requires you to use the machine for at least 4 hours per day, be sure to get your 4 hours in.) Using the machine is a whole new experience, and although some people take to it right away, many of us don't and need some time to get used to it.

A full-face mask may be right for you, but the big question isn't whether you have allergies but whether you breathe through your mouth or your nose or some of each during the day.

I'd suggest setting your ramp to start at 7. For me, a lower pressure when I exhale is a key to my comfort, so in your place I'd want my EPR to be 3. Your experience may be different, though. Use your day/evening sessions to give all the EPR settings a good trial.

It's common to see some CAs show up when you start using PAP. The CAs are pauses in your breathing that last 10 seconds or more, and they are probably happening after arousals from sleep. They are generally not a concern; the arousals are the problem. With time, you'll probably experience fewer arousals during the night.

I don't know why your body temperature was a problem for you. Let's hope that whatever it was will resolve itself. (If you're a woman around the time of menopause, could you be having hot flashes?)

When you can, find an SD card that's 32 GB or less. Download Oscar to your laptop or desktop computer, and use a card reader if there isn't a slot in your computer. Unfortunately your machine won't give you any detailed data for the nights when you didn't have a card in there.

So using the machine during the day can help even if I don’t feel particularly bothered by it at night when I’m trying to go to sleep? Like, I assume it must be what’s causing me to wake up and get poor sleep, but the comfort of wearing it doesn’t seem to be my issue, and I assumed that wearing it during the day was only supposed to help you get used to the feel of it.

I don’t normally breath out of my mouth, but when I have nasal congestion due to allergies I kinda have to. I use nasal spays to help with that, and it’s mostly just a concern during allergy seasons, but there’s always the possibility that I could become congested in the middle of the night and have to start breathing through my mouth. I did try on one of the nose-only masks at the sleep therapy place, but I felt that it was extremely uncomfortable if you open your mouth for any reason while wearing it—whether intentionally or accidentally.

If I set the ramp to start at 7, doesn’t that mean that the ramp setting isn’t really doing anything for me if I have the minimum pressure set to 7 anyway?

That’s good to know about the CAs, at least. But could it be the machine that’s causing them to happen somehow? While I’ve been having sleep issues for a long time now, the past two nights have been way worse than normal with how often I wake up. I wonder if it could be related to my pressure or humidity settings somehow…

I’m not a woman (I’m AMAB non-binary), so no menopause here, lol. I do occasionally wake up feeling hot like this sometimes, but it’s not happened in awhile until suddenly it happens really bad two nights in a row, just as I started using the PAP machine. I’m not sure if it could be related to the CAs or what. It couldn’t be the heated humidifier, could it? If so I’m not sure what to adjust it to because it’s currently just set to auto.

So the data that you can get via email from the myAir app isn’t the same data that would be written to an SD card?

Thank you very much for the advice!

Forget OSCAR for the time being. Get a free account at SleepHQ.com, upload your data and post the link in this thread. Any 32GB or smaller SD card will work for data recording.

Don't worry about the AIs at this point. You were probably wakeful when they occurred. In this case, they mean nothing.

BTW, it's common to have a rough start with CPAP.

Okay, I’ll make an account there now to use for data from future nights—unless the data I can get from the myAir app works the same as what I could get from an SD card, in which case I guess I would have usable data from the past two nights, but I’m still not sure about that.

[Pugsy]

The data you can see at/from the MyAir website is just a tiny bit more detailed than what you can see on the machine's LCD screen.
Doesn't hold a candle to what you can see using either OSCAR or SleepHQ.
IMHO MyAir is pretty sophomoric.

read this thread please
viewtopic/t188423/quotCAquot-Clear-Airway-Events.html

I would bet my last dollar that 99.999999% of your flagged centrals are related to arousal or awake breathing.

Quit worrying about the centrals and instead concentrate of sleeping better (I know easier said than done) and when you can sleep more soundly I bet those centrals reduce in numbers dramatically.

[Tanuki]

The data you can see at/from the MyAir website is just a tiny bit more detailed than what you can see on the machine's LCD screen.
Doesn't hold a candle to what you can see using either OSCAR or SleepHQ.
IMHO MyAir is pretty sophomoric.

read this thread please
viewtopic/t188423/quotCAquot-Clear-Airway-Events.html

I would bet my last dollar that 99.999999% of your flagged centrals are related to arousal or awake breathing.

Quit worrying about the centrals and instead concentrate of sleeping better (I know easier said than done) and when you can sleep more soundly I bet those centrals reduce in numbers dramatically.

Okay, good to know about the myAir data, thank you!

And I know, I’m trying my best to get good sleep—as you said, easier said than done—but my concern is that the PAP machine is causing the poor sleep, and if that’s the case I don’t know what I should do to fix that. Should I adjust any settings, and if so what? Since last night seemed to be worse for me than the night before, should I set my minimum pressure back to 5 instead of 7 and bring EPR back to 2 instead of 1? And what else beyond that? Could the humidifier have anything to do with me waking up feeling hot, and if so how should I adjust the temperature? Is my feeling of being tense and short on breath during the day also being caused by the PAP machine in some way?

I’m just so overwhelmed by all this and I don’t feel like I have the energy to do the whole trial and error thing for who knows how many nights until I finally get a night where I sleep soundly and don’t feel absolutely miserable the next day, so if possible I just want to try to get a good idea of what I could do that’s most likely to help now. I’m so incredibly exhausted and on the verge of breaking down and crying because of this… And, for whatever reason, I can never manage to relax and fall asleep during the day to make up for my poor sleep with naps, so I’m just getting increasingly worse and worse the longer I go without good sleep, and the last two days with the PAP machine have been a huge setback for me in that regard…

[Miss Emerita]

You've only tried CPAP for two nights. Despair would be premature!

Even though you've done some sleeping with it at night, you clearly are not sleeping well with it. You may not be consciously bothered by how new the CPAP experience is, but your mind and body may nonetheless need some experience and time to get used to it so you can sleep better with it. That's why I've recommended backing off on night-time use for a few days while you do daytime or evening use just to get yourself acclimatized. Though others may disagree, I think this is the best thing you can do for yourself now.

I've already suggested settings for you to try: minimum of 7, including ramp, and EPR of 3. Up to you, of course, whether you want to try them. I do especially hope, though, that during your daytime/evening use, you'll give all four EPR settings a good try (0, 1, 2, 3) to see what's most comfortable for you.

[Tanuki]

You've only tried CPAP for two nights. Despair would be premature!

Even though you've done some sleeping with it at night, you clearly are not sleeping well with it. You may not be consciously bothered by how new the CPAP experience is, but your mind and body may nonetheless need some experience and time to get used to it so you can sleep better with it. That's why I've recommended backing off on night-time use for a few days while you do daytime or evening use just to get yourself acclimatized. Though others may disagree, I think this is the best thing you can do for yourself now.

I've already suggested settings for you to try: minimum of 7, including ramp, and EPR of 3. Up to you, of course, whether you want to try them. I do especially hope, though, that during your daytime/evening use, you'll give all four EPR settings a good try (0, 1, 2, 3) to see what's most comfortable for you.

Okay, I’ll try that, thank you… Do you have any thoughts on my question about the humidifier potentially causing issues or any suggested settings for that?

[Miss Emerita]

How much humidity is the right amount for you is something only you can tell. So use the next few days to see what feels most comfortable for you when you’re awake. Try more and try less as well as your current auto setting.

[Tanuki]

How much humidity is the right amount for you is something only you can tell. So use the next few days to see what feels most comfortable for you when you’re awake. Try more and try less as well as your current auto setting.

Problem is I don’t know what settings “auto” is at for me, which makes it impossible to know whatever manual settings I select are more, less, or the same as my auto setting.

Also, is the water tank not supposed to go below the lower black line? Because so far it’s always stopped right at that line after each use for me. Not sure if that’s a coincidence or what, but I was just using it during the day for awhile but since taking it off I noticed my throat is now a bit sore, and the water is still at the lower black line that it was at this morning, so I’m not sure if the machine just isn’t using any water once it gets to that lower black line or what… This was all still on the auto settings, too.

[Pugsy]

The "auto" setting for climate control or humidity is equal to around the setting of 4 or 5 if doing manual.
It's sort of a middle of the road setting.

[Tanuki]

The "auto" setting for climate control or humidity is equal to around the setting of 4 or 5 if doing manual.
It's sort of a middle of the road setting.

Okay, thank you. So it’s not actually adjusting based on the humidity of the room? And what about the auto setting for tube temperature?

Really, though, I have no frame of reference for what is “good” or not, so I’m not even sure if the current settings have been “good” for me or not. Like, I’ve not been particularly bothered by it as far as I’m aware when I’m awake; it could be contributing to my poor sleep, though, but I’m not sure how to confirm that or not if I’m not awake to know that it’s bothering me…

[Pugsy]

The other day I stumbled upon a little chart that explained what the various humidity settings and hose temp settings at either manual or auto meant.
I thought I saved that document but I can't seem to find it at the moment and I don't feel so great right now and that means I don't feel like searching through a gazillion saved documents.
It was actually verification, on paper, of what I always thought........Auto is around 80 to 85% which is what the manual setting of 4 probably delivers.

Hose air temp for the heated hose....all it does is hopefully prevent condensation in the hose or mask. That's the primary function of the heated hose. There is also an "auto" setting for heated hose temp but in my experience it's not all it's cracked up to be. Doesn't work so great. I tried it but it didn't prevent condensation in the hose or mask ....so I had to go to manual hose air temp selection.

Auto setting for humidity....it starts with the ambient room humidity and depending on your humidity choice it will try to maintain a constant delivery of that chosen humidity.
But it all starts with the ambient room humidity and goes from there to wherever your humidity setting is.
Water consumption will vary a LOT...again depends on humidity in your bedroom and your chosen humidity setting.

I have no idea why your sleep is crap but in all honesty you are so new to cpap therapy that it doesn't surprise me at all.
While some lucky few happen to take to cpap therapy like a duck to water.....most people don't. There is an adjustment period while we get used to this new way of sleeping with all this crap.

To fix a problem you first have to identify the problem and sometimes that's not so easy to figure out....especially when so new to cpap therapy and you have no idea what is going on and what is normal and what isn't normal.
Not to mention that there are so many variables....and what works for me really well may be a horrible choice for you because we are simply different in our preferences, wants and needs.
Example....I use the humidity setting of 8...yep...as high as it will go and if truth be known I would use more if I could get it. It's what my nasal mucosa seems to need. I have a friend who doesn't even use added moisture unless he has a cold.
He thinks I am nuts using the setting of 8 and I joke that I would snort water if I could....and I think he's nuts for not using any water at all unless he is sick.

Everybody is different in what they want or need and what works great for one person may be a disaster for the next person.

Sorry....but there is no work around for plain old trial and error because that's how you learn about your own personal preferences, wants and needs.

I will suggest that if you change something....only make ONE change at a time.
When you go making more than one change in something then you don't know what change gave you what result.
Don't know who or what to blame or give credit to.

[nawchem]

Hi Tanuki!

I got an apap a month ago and felt super tired at first too. After a few weeks in it seemed my body remembered how to deep sleep and I am no longer sleepy during the day. The other difference I noticed is that my skin is oily instead of slightly dry. Weird, I know. It has helped me to put in some long hours of sleep about 10 hours a night, that has slowly decreased as I've rested up. Like you I got flagged with lots of central apneas, with none shown on the sleep study.

Keep going, I think things will improve for you too!

[Tanuki]

So I tried skipping a day of using the PAP at night and I still woke up feeling hot that night, but I didn’t feel short of breath the next day as I did the previous two days after having used the PAP. I did still feel really tense but not as much as the previous two days. So after that, I tried to use the PAP again last night, but after a few hours of being unable to go to sleep I took it off, but I still couldn’t fall asleep and ended up not sleeping at all overnight for the first time in my life. The shortness of breath feeling came back strong as soon as I stopped using the PAP last night and still persists now, and I’m extremely tense and unable to relax, my heartbeat feeling very prominent. I’m not sure my waking up feeling hot issues are being caused by the PAP, but this shortness of breath thing absolutely is, and it’s making it much harder for me to relax or sleep, and I don’t know what to do now…

I can’t just keep doing trial and error every night while I get progressively worse and worse. Every night that I’ve used the PAP has been so much worse for me than normal. But I have to keep using it for insurance to cover it… I’m afraid to even keep trying to use it during the day now, too, though, because it’s just going to make me feel short of breath again which will mess with my sleep even more. Is this something anyone here has experienced before with their PAP machine, and if so how did you resolve it?? I’m absolutely desperate for any kind of relief from this… I’m trying to get in to see my doctor and also talk to the sleep therapy place as well but it’s such a slow, frustrating process so I don’t know how soon I’ll actually be able to get any answers that way, if at all.