CPAP Newbie - Waking All Night With Mask Leaks

[Crimson Nape]

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[Embeeous]

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- Red

OK, thank you for posting this reply and link.  I was looking for an attachment prompt in the toolbar above the new message creation area, not down below

Attaching the screenshot.

[SarcasticDave94]

You're currently running default 4-20 pressures. It does seem that in the pressure chart your attempting some level of EPR, however being at Min pressure 4 prevents EPR from doing anything until events force pressure increase.

I would narrow pressures a bit to 7-20, making sure to check EPR 3 Full Time is on too. If there's any Ramp I'd consider turning it off.

[G. Szabo]

 And when I tapped on the screen, almost immediately upon waking up, it was showing pressures between 8-10+, I think, I was tired but it was definitely up from the original 4.  Which is fine, the machine is supposed to up the pressure at the time of an apnea event, right? What struck me was that the machine didn't really reduce the pressure back down. I'm sure that it eventually settled back down to that 4 range, or not, maybe it never goes back down. But now I'm thinking that the increased pressure to avoid an apnea event is waking me up, and the machine not going back down to that lower pressure range is keeping me up longer. 

Your link returns with acess denide message. 
Perhaps it is easier to attach the file directly to your message using the attachment feature at the bottom of the screen. 
By the way, your observations about the pressure during the night are normal, and once we see the chart, we can help mitigate some of your issues.

[Embeeous]

I just wanted to drop a quick "thanks" for all of the quick and detailed responses. I have a lot of information and advice coming at me from all different directions now, but I continue struggling to sleep each night, so my ability to concentrate, review and implement information, and take some of the steps that you all have outlined for me is a little limited. For now, I continue changing and adjusting masks, I've changed to a CPAP specific pillow, and I'm trying to get into a more normal routine that includes making sure that everything is all set before I lay down for bed. I am seeing some very slight improvement, now I seem to be able to sleep in between the hourly wake ups, and I think that the wake ups are starting to decrease. Can't figure out if the nose versus full face mask is better at this point, but the CPAP pillow seems to help. Monday I have a follow up visit with the original CPAP respiratory therapist who set me up with the machine, I have mixed feelings on whether or not she will be able to help me but it's worth a shot. Then I will review the information that you all have provided and try to implement many of your suggestions. Thank you.

[PersonInNY]

First of all, kudos on sticking through this and trying to problem-solve despite a week of atrocious sleep. A lot of people just quit.

I also suffered from 3 am wakeups before starting CPAP. CPAP cured my trouble staying asleep, and I feel indescribably better even though my sleep apnea is only mild. So hang in there!

It sounds like your trouble is with the mask, so I think you need to try more masks. There's a wide variety available, and trying to tweak a mask that just doesn't fit might not work. Here are some thoughts:

• You mentioned you were in between sizes. Do you have cushions for the other sizes? Masks often come with a "starter pack" of cushions in different sizes. (Shame on your DME if they didn't give you multiple cushion sizes -- mine did.)
  
• I would order masks online and try a bunch of them. Your DME might not have a wide range available, at least not ones you can try on in person. Many retailers have good mask return policies; just check the return policy before you order. Here is a list of suppliers. I've had good experiences with Supplier #42. I've tried eight masks; two or three were tolerable and one is so comfortable I don't even feel it at night. I was also in between sizes with my first mask, and I wish I hadn't spent so long trying to make it work.
  
• Which mask have you been using lately? Do you think you're suffering from mouth leaks with the nasal mask, with air going in your nose and out your mouth? Or is the leak just from the edges of the mask? If your mouth gets dry with a nasal mask, that's a hint that it's a mouth leak. The reason I ask is if mouth leaks are the problem, using a different nasal mask won't fix it. On the other hand, if you're not having mouth leaks, then a nasal mask is a better bet because smaller masks tend to be less prone to leaks and better for side sleepers and active sleepers.
  

[Embeeous]

Hi, I just wanted to check in and say thanks, again, for all of the replies that I have received from my original post. My issues are still ongoing, I thought that my sleep was getting better, but now it's actually gotten worse the past few nights. I have read each and every one of your replies, there is a lot of solid advice there and I'm not against trying some or all of the steps suggested. I'm just trying to make small changes, one at a time, to see what really works. 

A couple of pertinent updates:

- I am using the ResMed AirSense 11 machine.
- I have two masks - the ResMed N30i, and the Phillips Respironics DreamWare Full Face.  Both are fitted with medium mouthpieces.  I have tried the other mouthpiece sizes that come with both masks, the mediums seem to fit and prevent leaks best.  I keep trying both masks on different nights, the N30i seems to be more comfortable but I'm a mouth breather, so I've been trying to make the full face mask work. Chin straps do not work for me.  I have also ordered the ResMed AirTouch F20 Full Face Mask with Memory Foam. which will arrive later next week. I'm hoping that that mask makes a difference, I had to pay out of pocket for it.
- I've had some success using a CPAP style pillow from Lundberg, in terms of getting a few nights of better sleep, but better in terms of less wakeups and shorter time to get back to bed.
- Regardless of which mask I choose, my issue seems to be waking up when that pressure ramps up to handle an apnea event.  I see the screen at 4.0 when I got to bed, and I'll wake up from a dead sleep with the pressure saying anywhere from 8 to 10+ about an hour or so later. I'm not sure if the machine keeps that pressure up there for a period of time after the event when I am woken up, because it's sometimes sensing a leak and just keeps the pressure going to address is, or the machine takes time getting back to those lower pressures outside of an apnea event. I've asked that question of my provider several times and ways, and I'm not getting a straight answer.  In any case, if this is the normal operation of a CPAP machine, and there's nothing that I can do to change it, then I'll either get used to it, or I won't.  
- The respiratory therapist who set me up with this machine came by for a "reteach" yesterday.  She basically stated that it is what it is, I'll get used to these wake ups and just go back to sleep, and that the only thing that I can do to address them is to turn the machine off when they happen and let the machine reset back to that starting 4.0 pressure.  She made two adjustments to the machine yesterday - one, she turned the ramp up time from 45 minutes to auto; and two, she changed something to the pressure settings on my end so that when the machine sends air down my windpipe, the setting makes it less impactful or harsh.  I don't know what the setting was or what value she changed it to, I really don't understand what she did, but she felt that it might make a difference. It didn't. I had the full mask on last night, and one hour and change after falling asleep, I woke up and literally could not breathe, ripped the mask off, turned of the machine and went back to sleep with no CPAP. And it was not a good restful night of sleep without it either.
- The respiratory therapist asked me for my "average pressure value", or something along those lines, to help with some settings, I had no idea what she was talking about.  I felt like she should be telling ME what that value was! The problem here is that my sleep study and subsequent CPAP setup were handled by my general practitioner, not a sleep specialist or pulmonologist.  He gave the CPAP people some basic starter settings and said have at it, and that's where I'm at.  I'm trying to learn all of this on my own, so that I can help these people help me, without any good sleep for weeks by the way, and it's getting very frustrating.  I don't know what data to provide them.  I'm sure that somewhere in this OSCAR data is the exact data set that she was asking me for, but she was unwilling or unable to sit and look at the data.  So I have no idea if the machine is even set up properly for my needs at this point.  I have a 10/24 appointment with a real sleep doctor, but that's a month away, and I cannot seem to get to see anyone in or out of that practice sooner. I guess these folks are very popular and hard to get appointments with on short notice.

I am not a quitter, and I continue to try variations of my setups each and every night.  I've had two recent nights without the CPAP, and now they are just as bad as with the CPAP, so I feel like there's no going back at this point, I need to make this work.  I am dieting and exercising, I have zero interest in Inspire, I'm pretty sure my mouth and throat structure won't work for any mouthguards or the like, I really have no other options.  I either learn to live with CPAP, or learn to live without it and sleep as best and as long as I can.  I'm an otherwise healthy albeit overweight 58 year old guy just looking to get some sleep. 

I'm attaching screenshots for all of the OSCAR data that I have captured since my last post.  Hopefully somebody can look at this data and make some specific suggestions that someone without sleep can implement without blowing my machine up or making things worse. 

Sorry, I need some sleep, it's been weeks at this point, and the CPAP has made things worse, not better. 

Thank you in advance for your input.

[SarcasticDave94]

You need to be more proactive. Get into the clinical menu and edit your own settings. Own the therapy. Do you want to accept "it is what it is"? No, then take control of this. Tell the RT you'll begin driving CPAP, and will inform her of your settings and why they are what they are.

Access the settings: tap the CPAP screen, touch and hold both blue and purple squares for about 5 seconds, color changes to white bar across the top equals you're now in the clinical menu. Click the blue settings area. Slide down the menu to those mentioned areas, click to edit area in question, choose the new value, then "OK" it. Repeat for the rest. Last step is click exit when you get back to the clinical menu with blue and purple squares. Done.

Tell the person editing your settings, that you revoke their implied permission to do so. Tell them and send a letter.

Min pressure 4 is too low. Full stop. Edit this to 7, add EPR 3 full time. If response is on soft, change that to standard. If you can sleep through the very low pressure of 4 minimum, you do not need Ramp, so turn it off.

[Embeeous]

Yes, I absolutely want to take charge of this. No, I have no clue what anything means or what I’m doing yet. My general practitioner gave them some baseline settings to go with, I have no idea what those settings were based on, whether they were right or wrong, and what to change them to. I’m falling asleep with the machine set on 4, but as soon as it kicks on to address an event, it’s waking me up, and the sensation of more air/pressure is keeping me from falling back asleep. So I’m concerned that upping that pressure right from the beginning might keep me from falling asleep in the first place. I’d feel a lot more comfortable if an actual doctor with sleep/pulmomary experience was dialing in my initial settings, but I have to wait 4 weeks for that initial appointment. I guess that I could try your changes, if you tell me EXACTLY how to get back to my current settings in the event that they don’t work out. Btw, ramp was Off, one therapist changed it to 45 mins, second one changed it to Auto, you’re saying just turn it off, correct? And thanks, it sounds like I need more sarcasm in my life and less respiratory therapists

[PersonInNY]

> if you tell me EXACTLY how to get back to my current settings in the event that they don’t work out

There are two settings menus. One is intended for patients and can be accessed from the main screen, and then you can access the clinical menu in the way that SarcasticDave94 said. You can take pictures of those settings so you know what they are. Better yet, take a video as you change the settings, and then if you want to revert the settings, you can go through the same steps again. Also, if you google "how to change airsense 11 settings", you'll find YouTube videos on this.

Have some confidence. You can learn to understand your treatment and your machine well. Most of the people here aren't professionals either, just people who've learned enough to improve our own sleep. I've never had any help from my supplier since they gave me the machine.

> Btw, ramp was Off, one therapist changed it to 45 mins, second one changed it to Auto, you’re saying just turn it off, correct?

I'm not the person you're responding to, but that's what I would do. Ramp is low pressure for people who can't fall asleep without it. It's a "comfort" setting. 45 minutes is crazy, in my opinion. If you turn the machine on and off a few times, that could be hours of sleeping where you're effectively untreated.

Regarding the min pressure: Your min pressure was set to 4 because it's the lowest possible number and these companies don't personalize settings at all. The thought is that the machine will figure out the right pressure. But the machine is reactive. It only raises pressure in response to problems... which means you will have those problems every night, or several times per night if you turn the machine off and on again. 4 is too low for almost any adult, and we can see it's too low for you because your OSCAR charts show you have a lot of obstructive apneas at lower pressures.