CPAP Newbie - Waking All Night With Mask Leaks

[coutherino]

No worries. I'm happy to answer any questions.

Like I said in my original message, EPR actively lowers your expiratory pressure (also called EPAP; the pressure level you exhale against) when it senses you breathing out, depending on what level you have it at. Right now you're set at 8, so if—for example—you had EPR on 2, you would be inhaling at 8, but only exhaling against 6. Same logic applies for levels 1 and 3. EPR certainly has its uses, but for trying to find the pressure at which all apneas go away, it can make things a bit unnecessarily convoluted in my opinion. 

Without getting into too many details, EPAP is incredibly important. The pressure you exhale against is the main factor in stabilizing your airway, thus preventing it from collapsing. Lowering EPAP via EPR can potentially compromise things. We could always counteract this by raising your normal pressure by the EPR level you have set. You're on 8 right now, so if you were to turn EPR to level 3, you'd have to raise your pressure up to 11 to receive the same EPAP, but then you'd be inhaling at 11. There's certainly a time and place to try this out, but it's for these reasons that I think it's best to start without EPR, as it's much easier to find the EPAP you need to be at without it, and then potentially mess with EPR from there.

Hopefully that wasn't too confusing. When I first started this was one of the main things I struggled to understand. If I need to elaborate any more, let me know.

[Embeeous]

Once again, makes perfect sense, you explained it so that even a middle aged sleep deprived person such as myself can understand it. EPR stays off for now. At this point, I am confident in the logic behind all of the suggestions that you have made. I really can’t thank you enough. I would feel a lot more comfortable with an actual sleep doctor plugged in and looking at all of this closely, but my initial appointment is a MONTH away, and I can’t wait until then to figure this all out on my own. As long as I’m not putting myself in danger, and the worse case scenario is that I’m not getting sleep, what’s the difference, I’m not getting sleep now anyway? THANK YOU.

[coutherino]

No problem. I truly do hope the advice I have given so far will, at the very least, makes it tolerable for you tonight.

[Embeeous]

Coutherino:

Sorry for the belated update, I wish that it was a better one.  

I had the single worse night of sleep since starting CPAP treatment last night. 

I went with all of the settings that you suggested, and my hopes were high, but it didn't work out. 

For the first time in a while, I had a real hard time getting to sleep in the first place, with the constant higher pressure being directed into my mask.  It was hard to keep my mouth shut, and keep my head still on the pillow in order to prevent any leaks or more noise and air movement than what was already happening from the additional pressure. I did eventually fall asleep, but I lost count as to how many times I woke up throughout the night.  At least 7 or 8, every 45-60 minutes, no set time frame or I was so tired I stopped paying attention. I didn't sense or didn't think I sensed a lot of leaks, although a couple of times the mask had moved out of position. For the most part, based upon my observations, just the increased pressure made it impossible to fall and stay asleep.

At 5am, I took the mask off, shut off the machine, found my regular pillow, and went back to sleep for one hour.  And that was the most solid hour of sleep that I have had in weeks. 

At this point, I am going to thank you graciously for your suggestions, I was really hoping that they would make a difference. If you have any other suggestions or possible changes, I am open to that discussion, but I am not asking you to play doctor here. I have very little confidence in the doctors, equipment companies, and respiratory therapists that I have dealt with on all of this to date. But I do feel that there is a real risk as a new patient to all of this, if I continue trying to play doctor myself using information exclusively on these boards.  I see an absolute need to keep an open mind, listen to everyone including you on these boards, be my own champion, and do my own due diligence on all of this. But in the end, I need a medical professional who can look at me, my data, and the machine and masks, and come up with the best possible solutions based on their understanding of my needs. To date, I don't have that person, and I'm a month away from even starting that discussion, although I'm actively looking for someone, anyone who can see me sooner. Sleep doctors are very popular these days evidently.

The smart play is to just reset that machine to the basic settings that my doctor set me up with, even if they are way off.  So I'm going back to AutoSet, with the 4-20 range that he set me up with, but keeping Ramp and EPR off. I don't see a reason to have either of those two things on. You could make the argument to change the range to something like 7-20 or 8-20, I am open to that discussion and would understand why. But I can't see keeping that air pressure on a steady enough number to address any events proactively, because I don't see me falling or staying asleep with that constant flow of air at 8 that comes with the CPAP settings that we went with. And if we lower that number, then it's not addressing anything, so it defeats the whole purpose right? I slept better for a few nights with the original APAP settings, the nasal mask, and a CPAP pillow, that's what I will continue trying to get to work for me until I get to see an actual sleep doctor who might be able to make some more specific recommendations or changes to my treatment.  

I'm attaching the OSCAR data from last night, in case you or anyone else sees something that stands out that can be addressed by any changes to the previous recommendations.  Ironically, I am taking another at home sleep study tonight, because I had taken a medication the night of the original study that may or may not have impacted the results.  I'm certain that the results will still stay that I have OSA, but maybe not as severe as first thought.  Beyond that, I look forward to continuing to try and get the original setup to work, and I am somewhat optimistic that a full face mask arriving next week might help as well.  But no CPAP tonight, I'm actually looking forward to the break. I will resume treatment tomorrow night.

Thank you for your help.

[coutherino]

Ah, wow. I'm sorry it didn't work out. I honestly don't know what to say. I was hopeful that this would make it better, and genuinely didn't expect it to make it worse. It's understandable if this causes you to become... disillusioned with the advice I have given so far.

I agree that it's probably best for you to take a break from CPAP for at least a day, and allow your body to recover from the added stress it's been receiving. But I hope this has not discouraged you.

For the most part, based upon my observations, just the increased pressure made it impossible to fall and stay asleep.

I have a few questions about what specifically made it difficult for you to fall asleep. Regarding the pressure, did you feel it was difficult to breathe out? Was it too intense when inhaling? Did the added pressure within the mask make it uncomfortable against your face? Was it leaks? The noise? Explaining specific details like these may make it easier to understand what to recommend, if we know what you're sensitive to.

I won't try to give any unwanted advice regarding settings, but if you want it I am of course willing to try to help more. If you feel more comfortable on APAP right now, I'm not going to try to stop you from using it. That being said, if 8 wakes you up on CPAP, it will do the same on APAP. I looked at your data, but it's kinda pointless to comment on it I think... The issue here is clearly comfort, and the only path forward may be reducing the pressure, if only for the sake of comfort. I honestly just don't have enough information yet to tell what your optimal pressure is. Perhaps you can get away with something lower than 8, so that it wouldn't defeat the purpose like you said.

[Embeeous]

Ah, wow. I'm sorry it didn't work out. I honestly don't know what to say. I was hopeful that this would make it better, and genuinely didn't expect it to make it worse. It's understandable if this causes you to become... disillusioned with the advice I have given so far.

I agree that it's probably best for you to take a break from CPAP for at least a day, and allow your body to recover from the added stress it's been receiving. But I hope this has not discouraged you.

No worries whatsoever, I am genuinely thankful that you took the time to give me that advice, and I honestly thought that it would work as well. I am not discouraged and I will not be quitting just yet. 

I have a few questions about what specifically made it difficult for you to fall asleep. Regarding the pressure, did you feel it was difficult to breathe out? No. Was it too intense when inhaling? Yes, sort of, as it should have been doing, it felt like air pushing into my nose full time whether I needed it for a breath or not Did the added pressure within the mask make it uncomfortable against your face? No Was it leaks? I don't think so The noise? At times Explaining specific details like these may make it easier to understand what to recommend, if we know what you're sensitive to. As I tried to explain before, it was like this stronger rush of air into my nose and all around the mask, coupled with the increased noise.  It kept me from falling asleep, and either apnea events, or the rush and sound of air, or both, kept waking me up.  I cannot read the data to tell you if that was the case, or if the data even tells me that.  All I know is that it was the worst night of sleep that I've had since starting CPAP. Sorry. 

I won't try to give any unwanted advice regarding settings, but if you want it I am of course willing to try to help more. If you feel more comfortable on APAP right now, I'm not going to try to stop you from using it. That being said, if 8 wakes you up on CPAP, it will do the same on APAP. I looked at your data, but it's kinda pointless to comment on it I think... The issue here is clearly comfort, and the only path forward may be reducing the pressure, if only for the sake of comfort. I honestly just don't have enough information yet to tell what your optimal pressure is. Perhaps you can get away with something lower than 8, so that it wouldn't defeat the purpose like you said. If I reduce the pressure to provide comfort and allow me to sleep, won't that same reduction negate what the CPAP device is supposed to do in the first place?

[coutherino]

As I tried to explain before, it was like this stronger rush of air into my nose and all around the mask, coupled with the increased noise. It kept me from falling asleep, and either apnea events, or the rush and sound of air, or both, kept waking me up. I cannot read the data to tell you if that was the case, or if the data even tells me that. All I know is that it was the worst night of sleep that I've had since starting CPAP. Sorry.

Just based on what I can see, I'd wager leaks were at least a contributing factor. You can see in the graph multiple times when the leak rate suddenly climbs to a certain level, hovers around the same spot, then suddenly drops off, which is presumably when you're waking up. This appears to happen at least 5 times, but it's difficult to tell when you're awake and when you're asleep. Unfortunately, it appears to be mouth leak... which is really only fixable by taping. Mouth leak occurs when the muscles of the tongue and jaw relax during sleep, allowing air to shoot out through your mouth. Mouth leak is almost always detrimental to sleep. Did you experience any dry mouth last night? If so, it's almost certainly mouth leak. If you want to continue using a nasal mask, you're going to have to fix that.

Just looking back at some of the data you've sent previously in the thread, it seems like there are some nights where there's almost no leak. I'm not sure if you were using the full face mask during these nights, but if so, if it allows you to maintain a lower leak while also still being comfortable, perhaps it could be good to try that. I think using a nasal mask should still be the goal, but for now that could result in better nights of sleep.

If I reduce the pressure to provide comfort and allow me to sleep, won't that same reduction negate what the CPAP device is supposed to do in the first place?

Not necessarily. Like I said, I have no idea what your optimal pressure is. It could be lower, it could be higher. If you could post a few 5 minute sections from your flow rate graph from last night I can get a closer look at how your breathing truly looks at this pressure level. If you remember the times when you were actually asleep, preferably from during then.

[Embeeous]

Thanks.  I've been using the nasal mask almost exclusively, I have a full face mask that I do not like but I have another one arriving middle of next week.  Chin strap did not work, and I'd rather not tape up my mouth.  I agree that nasal mask is much more comfortable and the goal if doable, but if I'm truly a mouth breather, or there is enough mouth leakage to warrant it, maybe a full face mask is the way to go for me.  We shall see.  That's what I meant when you asked if there were any leaks last night. I didn't think that the nasal mask itself was leaking even at the higher pressure, but I guarantee that I was opening and closing my mouth.  My mouth is always on the dry side in the morning, and I have GERD issues as well, so again, leaning towards full face but just wanted to exhaust the nasal mask option.  

I think that when I reinserted the SD card back into the AirSense machine, it formats that card for future use.  So that data is probably gone.  Even if it's not, I'm a little bit stressed for time this evening unfortunately.  But good news, I have a Monday am appointment with an actual bonafide sleep specialist doctor at a major hospital practice in my area.  I only got the appointment because I was calling around all day and I caught the one guy at the one place who had just had a cancellation.  His next available was another month out, go figure.  So, no CPAP tonight, my wife suggests taking a break all weekend but we shall see, and a Monday am Dr. appt.  Good stuff, I'll get there and I will keep you and others here posted.  Thank you.