Trouble staying asleep with CPAP

[MamaGeek]

I have been using CPAP now for about a week and a half. My first mask leaked, and I switched to another one that is much more comfortable and stays on without leaking. I have no problem falling asleep with CPAP, but I can't seem to stay asleep. I wake up every 1-2 hours, for no reason that I can discern, now that I've fixed the leak problem. I have UARS, not OSA, so maybe it's just a UARS symptom. I don't know.

I often wake up with an itchy nose, and have to take off the mask to scratch it. Sometimes it's the inside that itches, sometimes the outside, and always a different area. Maybe the itchiness is waking me up? That seems odd, because no other itch every woke me up (bug bites, etc.). I think it's more likely that I woke up for some other reason, and only noticed the itch because I was awake.

And I still can't tolerate the CPAP all night long. I have been trying so hard to wear it as long as possible, but the longest I've kept it on in a single night is 6 hours (non-continuous, due to wakings). My average, though, is about 4.5-5 hours.

I have an APAP machine, which the doc set to 8-11, but I have since changed to 9-10.4. It was hovering around 10 with my 8-11 range, and I thought a tighter range might limit the auto-adjustments and help me sleep longer, in case that was what was waking me up.

I don't have a follow-up with the sleep doc until early August, but I don't think he'll be much help. UARS is trickier to treat than OSA. CPAP can't measure RERAs, which is where my problem lies (I had upwards of 50 in an hour). My AHI was normal to begin with, so the readings from my machine will only show the same unchanged low numbers there.

What do you all think?

Should I just set it to CPAP mode at my average pressure to eliminate auto-adjustments altogether?
How can I prevent my nose from getting itchy?
Do I just need more time to get used to CPAP?

Thanks for your help in advance!

[knothead]

5 hours.



What do you all think?

Should I just set it to CPAP mode at my average pressure to eliminate auto-adjustments altogether?
How can I prevent my nose from getting itchy?
Do I just need more time to get used to CPAP?

Thanks for your help in advance!

Couldnt hurt, its what I did and am sleeping better now with straight cpap..you can always set it back to APAP whenever...good luck with the itchy nose thing, cant help with that one...

[JDS74]

You might try asking your primary doctor if he thinks a culture of your nose might be in order.
We all have colonies of Strep Aureus on our skin but sometimes the nasal passages have some growing there that cause symptoms. Topical antibiotic is the way to treat such a condition.

BTW, you haven't taken any steroids for any conditions recently? Inhalers like Symbicort, etc. to try to help your breathing. These have been know to accelerate nasal bacterial growths. -- Just a thought as we recently went through such an episode.

[MamaGeek]

No, I'm not on, and haven't recently taken, any medications. And the itchiness is not just inside, it's random, anywhere, like a minor skin irritation kind of itch, the sort you don't even notice normally, because you automatically reach and scratch and it's gone. But with the mask on my face, I can't scratch it without taking it off.

[JDS74]

Still, it may be worth asking your PCP about what to do.

[MamaGeek]

I appreciate the suggestion, but honestly, I am so tired of seeing doctors. And paying to talk to them, when I can be almost certain they won't have anything useful to tell me. Most often I'm more on top of my own treatment than they are.

On the topic of getting used to the CPAP, though, have any of you had trouble staying asleep? Has anyone had trouble making it the whole night through? If so, how long did it take you to get used to CPAP? Like I said, I'm only about a week and a half into this, and despite my problems, it seems to be getting gradually better, like two steps forward, one step back sort of progress.

[Pugsy]

It's tough with UARS because we don't have the usual standards to judge our therapy by and instead we have to go on how we feel and/or how we sleep.
From what I have read it seems like UARS people tend to be a little more "sensitive" to things meaning that little things that wouldn't necessarily bother those that don't have UARS will greatly bother someone with UARS.

How was your sleep quality pre cpap? Did you wake often? If you did then it is not impossible that perhaps the wake ups are "habit" wake ups. They may or may not have been related to the UARS thing. Remember people have crappy sleep who don't have UARS or OSA.
It's also possible that you just need to give things more time and let the brain come to realize that the mask is a friend that we welcome. I know for myself it took probably 6 months before I quit waking up for no apparent reason (as opposed to wake ups with a known reason like pain) and I was doing those wake ups about every hour for several months. Wake ups where it just much have been my brain saying "hey, dude, did you know you have an alien on your nose?"

So yes, you need to give it more time...it's not like you have much choice in the matter anyway . 10 days isn't really enough time to expect a miracle (and those are rare despite what you read) and I think it is especially more difficult for UARS patients. My OSA was "severe" so one might think I might have had some "miracles" straight away but other than the nocturia and killer headaches going away pretty quickly the rest of my feeling not so great took months and months to improve upon. My sleep was still fractured partly because of the brain just saying "hey dude" and partly due to my good friend arthritis.

I have read that often it seems like UARS people need a little more pressure than what the machine is giving out in response to what it senses is going on. So going with the average may not be quite enough. Remember you are going to have to go by how you feel/sleep more because your AHI is already low and the software reports are geared for OSA AHI and not UARS AHI results.
If you are indeed hyper sensitive to the pressure changes of auto mode then fixed mode might help and is worth a try for sure.

I don't know what to tell you about the itchy nose. Sorry. I suspect part of it is your brain and its way of saying "hey dude, wake up, you have an alien on your face". If that is what it is then time usually fixes that problem as the brain comes to realize that the alien mask is the new normal and there's no need to alert the human as to the mask being on the face.

[BleepingBeauty]

I have been using CPAP now for about a week and a half.

Should I just set it to CPAP mode at my average pressure to eliminate auto-adjustments altogether?
How can I prevent my nose from getting itchy?
Do I just need more time to get used to CPAP?

Thanks for your help in advance!

My suggestions:

1. I would try CPAP mode; it could be that even the small pressure changes are causing your wake-ups through the night. Maybe not, but it can't hurt to try a single pressure and see if it helps. Go by your detailed data when opting to choose a single pressure, not necessarily your "average" pressure.

2. As to stopping the itches, two suggestions: One, try rubbing your nose vigorously before you mask up; that may desensitize it. Second, keep a popsicle stick on the nightstand and use it to scratch the itch; it'll break the seal against your face temporarily, but you won't have to remove the mask altogether; might make it easier to get back to sleep (with less interruption).

3. As to getting more used to the machine/mask, my advice is to use it during the day as much as possible (while reading, relaxing, watching tv).

You're not alone, and you're at the beginning. It took many of us weeks/months/however long to get used to this new way of sleeping. I ripped my mask off in the night for a long time.

There are all kinds of issues with xPAP treatment, but there are also solutions to make it work for us, and you're in the right place to learn. Hang in there.

[MamaGeek]

How was your sleep quality pre cpap? Did you wake often? If you did then it is not impossible that perhaps the wake ups are "habit" wake ups. They may or may not have been related to the UARS thing. Remember people have crappy sleep who don't have UARS or OSA.

I woke up all night long. I only remember waking 2-3 times a night, but my sleep study showed many more wakings that I didn't recall. The lab titration showed those wakings gradually reducing in frequency as the CPAP pressure was increased. So that's what CPAP is supposed to be treating, which is why my wakings with CPAP are so frustrating.

I have read that often it seems like UARS people need a little more pressure than what the machine is giving out in response to what it senses is going on. So going with the average may not be quite enough. Remember you are going to have to go by how you feel/sleep more because your AHI is already low and the software reports are geared for OSA AHI and not UARS AHI results.
If you are indeed hyper sensitive to the pressure changes of auto mode then fixed mode might help and is worth a try for sure.

I would try CPAP mode; it could be that even the small pressure changes are causing your wake-ups through the night. Maybe not, but it can't hurt to try a single pressure and see if it helps. Go by your detailed data when opting to choose a single pressure, not necessarily your "average" pressure.

OK, I'll try setting one fixed pressure, and see how it goes.

As to stopping the itches, two suggestions: One, try rubbing your nose vigorously before you mask up; that may desensitize it. Second, keep a popsicle stick on the nightstand and use it to scratch the itch; it'll break the seal against your face temporarily, but you won't have to remove the mask altogether; might make it easier to get back to sleep (with less interruption).

Those sound like some good ideas, thanks.

It's also possible that you just need to give things more time and let the brain come to realize that the mask is a friend that we welcome. I know for myself it took probably 6 months before I quit waking up for no apparent reason (as opposed to wake ups with a known reason like pain) and I was doing those wake ups about every hour for several months. Wake ups where it just much have been my brain saying "hey, dude, did you know you have an alien on your nose?"

You're not alone, and you're at the beginning. It took many of us weeks/months/however long to get used to this new way of sleeping. I ripped my mask off in the night for a long time.

Thank you! I think maybe I just needed to hear this. I want to feel better now, and I don't want to keep waking up. But I will try to be patient. It helps knowing that my struggles are not uncommon. This is the real benefit of a support forum, just having those who have been there telling you that it's normal and it will get better.

[BlackSpinner]

Are you using it during the day while either watching tv or playing a computer game? If not try it out to desensitize your body mind. That way you take the stress of "I MUST sleep NOW" off while you get used to this alien on your face and teach your mind it will not suck up your breathe while you sleep.

As far as itchiness is concerned - try an unscented anti itch cream like Aveeno - note it has petroleum products in it which are not good for the silicon but use it when needed sparingly because it is bloody hard to find a cream that is not based in that. The only one I know off is lanisoh a nursing nipple cream but it doesn't have menthol in it obviously.

[Pugsy]

I want to feel better now,

Don't we all? You know when I first started cpap therapy I just KNEW that I would be one of those "miracles" and totally get 100% better sleep immediately because I just KNEW that I had all bases covered.
Boy, did I ever get a rude awakening. First thing was the pressure recommended during the titration wasn't getting the job done. That took a couple of weeks to fix. Then I had the brain doing the "hey dude" thing and the brain was a tough nut to crack. Then I had other issues outside of cpap realm that messed with my sleep.
So I had some old habits to break and still deal with the stuff unrelated to OSA that the machine couldn't fix no matter how much I wished it could.

Someone once said "it's about progression and not perfection" and that is so true...unfortunately the progression time frame isn't always as speedy as we want it to be.
We forget that we didn't get this way overnight and we can't expect to fix it overnight either...no matter how much we want to.

[tan]

with UARS, it's hard to expect a miracle, 'cause you are kinda super-sensitive... getting used to CPAP might take some time. Do you use EPR/pressure support?

A typical sleep hygiene may help you regain a sound sleep. Do you practice it?

[PoolQ]

This itch thing, just a thought. What I tend to do, since I have very little experience with CPAP, is when I get a new sensation my mind try's to figure out what's going on based on what I do know. Yah I know clear as mud, my mind tells me that the mask is a plugged nose because my mind does not yet understand what a mask sitting on my nose is. I wake up thinking I am congested. You might be waking up thinking you have an itch.

I try and relax and tell my brain to learn that this feeling is just a mask and not congestion. I have had to do this with: exhale resistance, wind blowing into my nose, exhale noise....

[MamaGeek]

Are you using it during the day while either watching tv or playing a computer game? If not try it out to desensitize your body mind.

No, but I don't do those sorts of sitting down things when I'm at home very much. I'm sitting at a desk all day at work, so when I'm home, I avoid it. And I really don't have trouble falling asleep, just staying asleep. I'll try to think to do that if I ever am in a situation where it applies, though.

Do you use EPR/pressure support?

What are those? Do you mean exhalation relief? I use that, at its lowest setting, which works best for me. If that's not what you mean, then I don't know.

A typical sleep hygiene may help you regain a sound sleep. Do you practice it?

Not perfectly, but fairly well, yes.

[Sonya]

I'm about 3 months in and I still wake quite frequently. My big mistake has been to pull off the mask for comfort and then I fall right back to sleep without it. I'm trying to get out of bed and then mask up again.

I get itchy nose sometimes. I'll pull the mask off, give everything a vigorous rub and then back on for sleep again. I do wish that I wouldn't wake up so frequently, but it's all about the baby steps.