cpap has made my situation worse. now what?

[PhotoWolf]

The story so far:

I was diagnosed with severe sleep apnea last fall, and got a cpap machine at the end of November. I tried three different masks over the next month-plus, and the least uncomfortable was a Resmed Airfit F40 with a medium cushion, so that's what I've been using. On advice of a friend who is a cpap veteran I got a hose hanger, and it did help. By the end of January I'd managed to meet the "at least four hours a night for 21 consecutive nights". A few days after that I managed to rip the hose and couldn't use the thing at all until the DME sent a new one, which took them ten days. With the new hose, I had a couple of nights where I still couldn't use it at all, but forced myself to, and now I'm back to where I was just before the hose tear:

I get to bed around 10:30 to 10:45, put the mask on, test the mask seal, then start it. I generally fall asleep within a few minutes or so, sleep for a few hours (over the last week it's ranged from 2.5 to 5), then wake up feeling like I'm suffocating,or maybe "like I've been exercising" is a better description; anyway, I have to get the mask off so I can breathe deep. I do that, give myself a few minutes for my breathing to settle, then try to put the mask back on. I immediately get the same "not enough air, need to breathe deep" feeling, and I can't as long as the mask is on. So I fall back asleep without the mask and wake up sometime between 4:30 and 5 am, no longer sleepy but still totally exhausted, and have to get up and try to stumble through the day that way.

I have not noticed any of the positive effects that cpap therapy is supposed to provide, not even at the end of the 'at least 4 hours for 21 days' period. I'm not sleeping any longer. I'm not sleeping any better. I don't have any more energy or feel any better during the day. The only effect I've noticed is that my sleep rhythms has been scrambled even worse than they were before, and I've traded six to seven hours of lousy sleep per night for five to six hours of slightly-less-lousy sleep.

Machine is a Resmed Airsense 11 Autoset, currently set to start at 4, then after a 30-minute ramp-up period it increases if it detects an event, to a maximum of 10. I am using the humidifier. I flatly don't believe the numbers it's giving me for events: it claims I have a great mask seal, and I'm having 4 to 5 events per hour, but in the sleep test last year I had over 80 and even pressures above 15 didn't noticeably reduce that. If I was really 90% improved I'd be feeling it, and I'm not.

Now what?

[ozij]

This:

Get your CPAP set up properly. A minimum of 4 is too low for almost everyone.

We need far more information, please read
If you CPAP machine doesn't have an SD card, get one and keep it in the machine while your asleep. 4 Gigabyte is enough if you have one to hand.

The machine will record you breathing during the night. Then we can get somewhere.

[ChicagoGranny]

set to start at 4

If that is your minimum pressure setting (not ramp), then immediately change it to 7. As Ozij said, 4 is too low for almost everyone.

to a maximum of 10

This may also need to be changed. But, we won't know without seeing some detailed data. Get an SD card, create a free account at SleepHQ.com, and follow their instructions to import your data. Then post the link to the Daily Report in this thread. SHQ will redact all your personal information.

You CAN do much better with the proper tweaking of your machine.

BTW,

it increases if it detects an event

... that's not correct, but the topic is a bit advanced for you at this stage.

[PhotoWolf]

My machine does have an SD card. I also downloaded and installed OSCAR. However, I still have a critical question: if the machine is recording bad data, then what good does it do to upload that data so you can see it? You're both saying that the machine is set all wrong, and I know it isn't improving my sleep at all -- how does that square with its report of only 4-6 events per hour?

I've reviewed notes from past contacts with my pulmonologist's office. The machine was originally set to a flat pressure of 10. I absolutely could not tolerate that, so I tried activating the ramp-up, which ran at 4 for whatever amount of time I set, up to 45 minutes, then increased to the set pressure of 10. After several days things had not significantly improved, so I contacted the pulmonologist through their patient portal. They reset the machine to "auto CPAP 4-10cm H2O". (This matches what the OSCAR "Device Settings" shows.) That was at the end of November, and it has been set that way ever since.

My apologies to all if I come across as frustrated and angry. I am, but it's not directed at you. I am under a lot of stress right now, not just because of the sleeping problems, and it's taking a toll. On top of that, I don't understand any of this, and sometimes it seems like no one is willing to actually explain anything to me. But I have to understand it if I'm going to figure out a solution.

[ChicagoGranny]

But I have to understand it if I'm going to figure out a solution.

We're trying to help you, but you have to do your part.

I've tried to make it easy on you:

create a free account at SleepHQ.com, and follow their instructions to import your data. Then post the link to the Daily Report in this thread. SHQ will redact all your personal information.

That's much easier that formatting an OSCAR chart properly, uploading it to a host side, then putting it in this thread.

Without more information from the machine, we are handicapped trying to help you.

[ozij]

We have to see what your machine I doing, in order to help you understand things.
You're reporting trouble, we can offer troubleshooting - based on what the machine reports.

If you'd rather learn on your own, you can learn a lot from The Lanky Lefty on youtube.

[robysue1]

My machine does have an SD card. I also downloaded and installed OSCAR. However, I still have a critical question: if the machine is recording bad data, then what good does it do to upload that data so you can see it? You're both saying that the machine is set all wrong, and I know it isn't improving my sleep at all -- how does that square with its report of only 4-6 events per hour?

Your machine's data is not bad data, except in the sense that it cannot tell when you are awake and when you are asleep.

But it does do the following things accurately and they are of use to us:

• It records your breathing---as in every single breath you take while using the machine.
• It records when it detects breathing patterns that match sleep disordered breathing patterns and labels them as hypopneas and apneas and it (usually) does a decent job of classifying an apnea as obsructed or clear airway during the times you are actually asleep.
• It records leak data, which can be valuable when a person has leaks they are not aware of that are occurring while they are deeply asleep.
• It records data about when the machine increases pressure and that allows us to figure out exactly why the pressure increased.

Those of us who have years and years of experience looking at waveflow data can get a pretty good idea of how much time you are actually in real sleep while using the machine as well as how much time you are likely tossing and turning, even if you don't remember doing that.

All of that is useful in answering your basic question: What to do next? And that's why posting some data for us to look at has been suggested by ozij and ChicagoGranny. And I'll chime in my own request for you to post some data since I strongly suspect that some of your adjustment problems may be just as related to restless sleep as they are to less than optimal therapeutic settings on the CPAP.

Your treated AHI being in the 4-6 range is still high enough to indicate that your CPAP therapy is not yet "optimized" in the sense of reducing your AHI low enough to ensure high quality sleep. It indicates one of two things is likely happening:

1) Your minimum pressure setting is too low to properly keep your airway open while you are asleep. When the minimum pressure is too low, events start to happen and then the machine responds by increasing pressure. But as soon as the pressure is high enough to prevent most of your events from happening? The machine lowers the pressure all the way down to the point where lots more events start to happen. And this cycle repeats all night long. Looking at the detailed data gives us a way of figuring out whether your minimum pressure setting is too low to adequately treat your sleep apnea.

2) You are just not sleeping soundly with the machine (yet). What I mean by this: Even if you don't remember a lot of restlessness during the night, the whole novelty of sleeping with a six-foot hose blowing air down your nose is enough to keep your brain from fully relaxing and getting into nice, long uninterrupted periods of real sleep. Wake breathing looks very different from sleep breathing, but the machine can't tell when you are asleep. And because wake breathing is so much more irregular than sleep breathing, the machine can often score "false" events when you are awake or bouncing back and forth between very light sleep and wake. Sometimes those "false" events can lead to pressure increases which trigger more (not less) restlessness and continue to keep you from getting into a good real sleep. For most new CPAPers, this problem resolves itself as the brain starts to realize that the periods of sleep it gets are no longer repeatedly interrupted by apneas and hypopneas and so the brain (slowly) learns to relax and allow itself to go into good real sleep. But a few unlucky new CPAPers can get "stuck" with their brain taking a very long time to accept CPAP as the new reality. (I was one of those unlucky ones, and it took a lot of work and time for me to teach my body how to sleep with a CPAP.)

It's worth keeping in mind: Both #1 and #2 often happen at the same time to new CPAPers.

It's also worth keeping in mind: Suggestions and strategies about what to do, both in terms of your machine's setting and in terms of other sleep-related behaviors, depends on whether the data is showing your current problems are more due to #1 or #2 or are the result of a significant mixture of both #1 and #2.


I want to address this comment in particular:

You're both saying that the machine is set all wrong, and I know it isn't improving my sleep at all -- how does that square with its report of only 4-6 events per hour?

Both ozij and ChicagoGranny suggested increasing your minimum pressure setting specifically because in your first post you said:

I generally fall asleep within a few minutes or so, sleep for a few hours (over the last week it's ranged from 2.5 to 5), then wake up feeling like I'm suffocating,or maybe "like I've been exercising" is a better description; anyway, I have to get the mask off so I can breathe deep. I do that, give myself a few minutes for my breathing to settle, then try to put the mask back on. I immediately get the same "not enough air, need to breathe deep" feeling,

That particular feeling of there not being enough air in the mask to get a good, deep inhalation is commonly associated with using the machine at very low pressures---i.e. using a ramp with a beginning pressure of 4 cm or having the min pressure set at 4cm.

I've reviewed notes from past contacts with my pulmonologist's office. The machine was originally set to a flat pressure of 10. I absolutely could not tolerate that, so I tried activating the ramp-up, which ran at 4 for whatever amount of time I set, up to 45 minutes, then increased to the set pressure of 10. After several days things had not significantly improved, so I contacted the pulmonologist through their patient portal. They reset the machine to "auto CPAP 4-10cm H2O". (This matches what the OSCAR "Device Settings" shows.) That was at the end of November, and it has been set that way ever since.

More questions and some stuff that I had to learn the hard way 15 years ago when I was starting down this adventure.

Questions for you to answer: When you say that the machine was originally set to a flat pressure of 10 and you could not tolerate it, can you tell us what was intolerable? Were you having trouble exhaling against the pressure and that was preventing you from getting to sleep? Was the problem that you were waking up with a belly full of air after falling asleep? And do you recall whether EPR was turned on or not? Or were you, even then, having trouble feeling like there was not enough air coming into the mask to take a deep, satisfying inhalation? The answers to all of these questions matter.

Next, it's worth understanding that since you are currently using the machine in AutoSet mode with a pressure range of 4-10cm, every time you turn the machine off and back on, the pressure goes back down to 4cm. And even if you have EPR turned on, you won't have any benefit from it until the pressure starts to increase---this can be an issue if exhaling against pressure remains a problem for you.

Since you have indicated that you could not tolerate fixed pressure at 10cm and since I am someone who battled serious aerophagia problems for months when I first started out, I would give you this bit of advice right now:

1) Set your min pressure at 6cm and make sure EPR is turned on and set to 3. The small amount of additional pressure on inhalation should help with the feeling that you just can't inhale deeply enough for a deep relaxing breath, but EPR will also make it easier to exhale fully after each breath. That should minimize any air-in-tummy issues you are having.

2) Keep a simple sleep log. In the morning record the following information either on paper or in a spread sheet:

• Time you went to bed
• Guesstimate on how long it took you to fall asleep
• Guesstimate on how many times you woke up during the night
• Time you got out of bed
• Guesstimate on how much of the time you were actually asleep during the night.
• A simple ranking of how you feel when you wake up: 0 = Awful to 5=Great
• If chronic pain has been an issue when you first wake up, track the pain level as well as a general sense of how well rested you feel when you first get up

It's important to stress that the log is about guesstimating the time it took you to get to sleep and all the rest of it. You don't want to start "clockwatching" in an effort to get "more accurate data". If you really want to track the number of wakes, then just turn the machine off and back on each time you wake up in the middle of the night.

The point of the sleep log is to measure the subjective quality of your sleep, particularly if you are experiencing multiple wakes during the night on most nights. And it's important to understand that the overall goal is not to get to where you are rating your feeling on wake as a 5 every morning. Rather, you want to get to the point where the 3s and 4s outnumber the 0s, 1s, and 2s.

My apologies to all if I come across as frustrated and angry. I am, but it's not directed at you. I am under a lot of stress right now, not just because of the sleeping problems, and it's taking a toll.

Many of us have been there, done that, and have the scars to prove it. When I was just starting out, I had a lot of frustration and anger; the folks here were willing to listen and allowed me to rant (at times) and simultaneously also helped me to see past my anger and keep me focused on what I could try in order to make the whole PAP thing (eventually) work for me.

On top of that, I don't understand any of this, and sometimes it seems like no one is willing to actually explain anything to me. But I have to understand it if I'm going to figure out a solution.

Fifteen years ago the average new PAPer was set up with a dumb brick of a machine that only ran in fixed pressure mode and didn't record any data at all. And yes, the common sentiment was the doctors and the DMEs were treating us like we were mushrooms--as in keeping us in the dark about what was going on in our own bodies and our own bedrooms. And many of us also felt like those doctors and DMEs didn't want to actually listen when we had problems adjusting to therapy.

If you need to have things explained to you, post your questions and we'll do our best to explain what's going on in terms of CPAP, sleep disordered breathing, the specific problems you are facing, and the process of working towards finally getting the kind of sleep everyone is entitled to get and that everyone needs.

[PhotoWolf]

Thank you, Robysue. This is information I can work with.

That particular feeling of there not being enough air in the mask to get a good, deep inhalation is commonly associated with using the machine at very low pressures---i.e. using a ramp with a beginning pressure of 4 cm or having the min pressure set at 4cm.

This makes sense for why I wake up after a couple of hours feeling like I'm short of air. Why does it immediately recur when I try to put the mask on again? And I mean immediately -- as in, put the mask on and I start feeling short of air on the next breath, when I'm still wide awake and breathing like it.

Also, how does this connect with the fact that the impulse to breathe is triggered, not by a lack of oxygen, but by excess CO2 in the bloodstream? I'm awake, I'm breathing like I'm awake, I don't feel any special urgency to breathe. Then I put the mask on and instantly I feel the way I felt when I woke up, whether that was two minutes ago, or twenty, or even longer.

Questions for you to answer: When you say that the machine was originally set to a flat pressure of 10 and you could not tolerate it, can you tell us what was intolerable? Were you having trouble exhaling against the pressure and that was preventing you from getting to sleep? Was the problem that you were waking up with a belly full of air after falling asleep? And do you recall whether EPR was turned on or not? Or were you, even then, having trouble feeling like there was not enough air coming into the mask to take a deep, satisfying inhalation? The answers to all of these questions matter.

What I remember is that I found the steady 10cm pressure intolerable mainly because I could feel it distorting my mouth and forcing my jaw open. Also, I was using a different mask - an F&P Evora Full with the large cushion - and it consistently leaked along my jaw line. I could hear the leak, and that alone was enough to keep my brain awake. It also had a habit of leaking around the nose and blowing air across my eyes, which I find maddening. If I moved at all the leaking got worse, so I tensed up trying not to move. There may be people who can fall asleep like that, but I'm not one of them. I don't know whether EPR was on or not, nor can I check it; it's not in the (very small) list of things the machine lets me view and change.

1) Set your min pressure at 6cm and make sure EPR is turned on and set to 3. The small amount of additional pressure on inhalation should help with the feeling that you just can't inhale deeply enough for a deep relaxing breath, but EPR will also make it easier to exhale fully after each breath. That should minimize any air-in-tummy issues you are having.

How do I set the pressure and EPR myself? The only time the machine's settings have been changed, a nurse at the pulmonologist's office did it over the cellular connection. I don't see any way to adjust those settings using the built-in controls.

If I did everything right, this link should go to my data at SleepHQ: https://sleephq.com/public/d0b921a0-2fb ... 1691a85b47

[ozij]

How do I set the pressure and EPR myself? The only time the machine's settings have been changed, a nurse at the pulmonologist's office did it over the cellular connection. I don't see any way to adjust those settings using the built-in controls.

You hold down the Home button and the dial together, and wait till the machine shows you the clinical menu.
Pushing the dial in is equivalent to using "enter" on your keyboard, dialing up (clockwise) or down (anticlockwise) makes the changes.
Make the changes when you're as wide awake as you can be, do it slowly and carefully.
While your there, make sure you to to options, and change "Essentials" to "Plus". The will show your more info on the machine's screen.

If I did everything right, this link should go to my data at SleepHQ: https://sleephq.com/public/d0b921a0-2fb ... 1691a85b47

Excellent.

Then I put the mask on and instantly I feel the way I felt when I woke up, whether that was two minutes ago, or twenty, or even longer.

Now look at your ramp time: 45 minutes at 4, and you're snoring the whole time. I would hazard the guess that your brain is subconsciously aware of those 45 minutes of suboptimal, mask related pressure, and is trying to pre-empt that experience whenever it sensed the mask on your face.
45 minutes of suboptimal pressure is very long.
I'm not saying "don't use the ramp".
I am saying: aim to set the ramp's minimum 6, and the machine's minimum at 6 or a bit [see explanation], and set the ramp on Auto, not on a time base. With the ramp on Auto, it waits till it senses your breathing is the regular breathing of sleep, and then therapy settings kick in.
By "aim to" I mean "make the change as slowly as you have to." For me, there used to be times when a 0.2 increment was discernable, and enough for a while. Play it by ear, according to what you need. See what minimal change you can tolerate, and sleep with it. Then try another increment.
Why ramp at 6 minimum? Because when you track the red line, which shows you inhale pressure, you can see in never goes lower than 6 after the ramp time is over.
Why no red line before the ramp ends? Because the machine can never supply pressure that is less than 4, and an EPR=2 means EPR will only kick in when your inspiration pressure is 6, so that you'll have an expiration pressure of 6-2=4.

Look at your flow limitations. Place the vertical cursor on them, and you can see how they cause the pressure to go up. Do you see how they appear when your pressure is about 6? That's a good reason to try a minimal pressure of more than 6 even 6.2. "Flow limitations" in your case mean your breath flow isn't as good as it could be, and preventing them may help you sleep better.

Caveat: this is all based on a single night's data. When you track more nights, you'll have better info on which to base your decisions.
And once you're used to the truly weird sensations of (to quote Robysue ) " sleeping with a six-foot hose blowing air down your nose" you may find ramp is not even necessary.

The idea that pressure can be set by the professionals "once and for all" is a result of old, limited technology. It's about as smart as injecting insulin without knowing how your glucose levels respond to it.

We're here to help you titrate your own optimal settings, based on your very own data and information.

[robysue1]

How do I set the pressure and EPR myself? The only time the machine's settings have been changed, a nurse at the pulmonologist's office did it over the cellular connection. I don't see any way to adjust those settings using the built-in controls.

You need to get your hands on the clinical manual for your machine. It's available as a free download from: https://www.manualslib.com/manual/22131 ... se-11.html

You can also watch videos on YouTube that step you through the process for getting into the Clinical menu so you can see (and change) all the settings on your machine. One very short one is at https://www.youtube.com/watch?v=uEx7wkTJHGo.

Once you know how to get into the clinical menu, I would suggest the following settings:

Set Ramp to either OFF or AUTO. If you use RAMP = AUTO, then the machine looks for you to establish normal sleep breathing before it starts increasing the pressure; but if normal sleep breathing has not been established by the end of 30 minutes, the machine goes ahead and starts ramping the pressure up to the min pressure setting at the end of 30 minutes. Rationale: There's a chance that what happened at the beginning of this night was that you fell asleep and started snoring shortly after turning the machine on, but the machine couldn't respond to the snoring by increasing the pressure. And if you opened your mouth while snoring, that might be what triggered the lean that may have woken you up along with the sudden increase in pressure at the end of the ramp period.

Set Min Pressure to 6cm. This will give you some actual pressure relief on exhalation right from the start of the night. When the pressure is set at 4, the machine can't lower the pressure when you are exhaling. It turns out that for most people, a 1-3 cm decrease in pressure on exhalation makes the breathing more natural feeling: You don't have to make as much physical effort to exhale against the positive pressure being blown in by the machine.

Leave Max Pressure at 10cm for now. Rationale: During that one good sleep cycle, it was clear you didn't need any additional pressure. Moreover, your fixed pressure was set to 10cm, and if that came from a sleep study, then there is some data somewhere that indicates you probably don't need more pressure on a regular basis. You can always increase it if you need to after you are sleeping well with the machine.

Set EPR = 3. EPR controls how much pressure drop there is at the beginning of an exhalation. The full effect won't kick in until your pressure reaches 7cm. If you find that EPR = 3 "breaks something" in terms of your comfort, you can always go back to EPR = 2.

Leave the hose temp and humidity settings where they are for now unless you think you need more/less heat and/or more/less humidity. Do keep in mind: The higher the humidity setting and the lower the temperature setting, the more likely you are to experience what we call rainout---i.e. condensation in the hose or mask. Rainout can lead to a cold wet nose and/or weird gurgling noises from the hose. If your nose isn't too dry and you don't feel overly warm when using the machine, then your current settings are probably pretty decent for your nose.

Change Patient View to ADVANCED. This will give you a full sleep report when you turn the machine off without the need to login to MyAir. (It does NOT break MyAir, so you can keep using MyAir if you find it useful.)

[robysue1]

That particular feeling of there not being enough air in the mask to get a good, deep inhalation is commonly associated with using the machine at very low pressures---i.e. using a ramp with a beginning pressure of 4 cm or having the min pressure set at 4cm.

This makes sense for why I wake up after a couple of hours feeling like I'm short of air. Why does it immediately recur when I try to put the mask on again? And I mean immediately -- as in, put the mask on and I start feeling short of air on the next breath, when I'm still wide awake and breathing like it.

Also, how does this connect with the fact that the impulse to breathe is triggered, not by a lack of oxygen, but by excess CO2 in the bloodstream? I'm awake, I'm breathing like I'm awake, I don't feel any special urgency to breathe. Then I put the mask on and instantly I feel the way I felt when I woke up, whether that was two minutes ago, or twenty, or even longer.

The data you posted indicates that you are using a heated hose set to 24C (75F) with the humidifier set to 4 (in the middled of the humidifier range). My guess is that your bedroom's air temperature is probably somewhat cooler to quite a bit cooler than the hose temperature is set to. And if you live in an area where it is still "heating season", your bedroom air is probably on the dry side in terms of relative humidity.

So some of this feeling probably psychological: There's not much physical "air space" inside of the mask. And at 4cm of pressure, there's not much of a noticeable breeze from the air being blown into the mask to maintain pressure. And when you add a heated humidifier and a heated hose set above the ambient room temperature, the air inside that mask can feel warm and moist enough to make it feel like you're sleeping in a swamp. All those things together can trigger the brain into feeling like there's just not enough air to breath comfortably, which in turn triggers the feeling of being short of breath. And yes, this feeling can kick in really quickly when you are awake and trying to get (back) to sleep.

Then add in this: At 4cm, the airflow into the mask just might not be quite enough to completely wash out the CO2 after every single breath, particularly if the vents on the mask are partially obstructed by the bedcovers or the way you are sleeping. In other words, at 4cm there is a very slight chance that you may be rebreathing a bit of the CO2 you exhale. And that could be just enough to mess with your blood CO2 level and trigger the feeling of being short of breath.

Or alternatively add in this: When the brain gets overly anxious it can trigger enough "Breath Now" signals to the lungs to trigger hyperventilation. And the thing about hyperventilating is that while you're blowing off way too much CO2, the brain seems to keep panicking about the breathing and saying to the lungs, "I need more air! I need more air!". But the breaths don't seem to help because the CO2 trigger for normal breathing is out of wack. That's why the standard advice is to have someone who is hyperventilating breathe into a paper bag: It causes them to rebreathe just enough of their exhaled CO2 to get the CO2 levels in the blood back to normal and that helps the panicking brain settle back down and realize the problem is not "I need more air!". And here's the connection to CPAP: Sometimes putting on a mask (with its small amount of "air space") triggers very real anxiety in people, and when that happens? They can start to hyperventilate.

Out of curiosity: Back during the pandemic did wearing a mask when you were out in public bother you in the sense of making you feel like you couldn't breathe right? If so, that was probably caused by some of the same things triggering your problems with trying to breathe normally with the CPAP mask on when you are at very low pressures.

[robysue1]

If I did everything right, this link should go to my data at SleepHQ: https://sleephq.com/public/d0b921a0-2fb ... 1691a85b47

The link for SleepHQ works. Thanks for providing it.

Here are the machine settings that I can see when looking at your data:

1) Mode of use is AutoSet with a pressure range of 4-10 cm.

2) EPR is set to Full Time with a level of 2. I think you probably would benefit from setting it to 3. More on that later.

3) Ramp is set to 45 minutes with a pressure of 4cm. I do think both ramp settings may be contributing to the sense of not being able to inhale fully after you turn the machine back on when you wake up in the middle of the night feeling like you can't breathe normally.

4) Your machine is still set to "Full face mask". If you are not using a full face mask, the mask setting on the machine needs to be changed to the appropriate type of mask that you are using. (More on how to do this later.) The mask setting tells the machine something about the dead space inside the mask and the machine's programming uses that information in adjusting how the machine blows enough air into the mask to reach and then maintain the desired pressure setting; it's not critically important to have it set to the right type of mask, but it is useful to have it set to the right type of mask.

5) Smart Start is turned OFF. This means that you have to manually start and stop the machine by pressing the On/Off switch. And with a starting pressure of 4cm, it should be turned OFF since at very low pressures, Smart Start is not fully reliable.

6) Patient View is turned OFF. That's why you aren't able to get any meaningful information directly from the machine. (MyAir gives you a snapshot of the machine's data, but the on-screen data is in some sense just as good (and better in terms of "leaks") than the stuff you get from MyAir is. More on this later.)

Now for the data about your breathing. Here's a marked-up screenshot of the whole night:


First I want to note that the breathing pattern between 12:00am and 1:45am is good quality sleep breathing that is uninterrupted by any sleep disordered breathing events. The time is enough for a full sleep cycle; full sleep cycles usually last around 90-100 minutes or so. The most likely reason you woke up at 1:45 was that you just came out of a REM cycle. Post-REM wakes are actually pretty common even in people with no sleep problems. It's just that in a person with no sleep problems, those post-REM wakes are very short: The person wakes up, quickly determines everything in their sleeping environment is "ok", turns over and goes back to sleep almost immediately. The whole normal post-REM wake lasts maybe a minute or two. And because the wake lasts less than 5 minutes, the person doesn't even remember waking up the next morning. I point all of this out because it is important to see that the machine is doing its job when you are (finally) sound asleep and sleeping well. In other words, during this one sleep cycle, you didn't have a single apnea and that's because the pressure the machine provided kept your airway open.

But because you are still struggling with CPAP, what happened to you at 1:45 was probably something along these lines: You woke up; you noticed the 6-foot hose attached to your nose via the mask; the brain picked up on some discomfort somewhere and (correctly or not) attributed the discomfort to the hose and mask attached to your face; and the brain immediately tensed up and became anxious about the whole mess---WHAT IS THIS MONSTER ON MY NOSE? And why won't it let me breathe? And that semi-awake "panic" is what you remember as waking up unable to breathe comfortably.

Now on this night, it's not clear whether you actually put the mask back on and tried again or not. It could be that the brain just couldn't get past THE MONSTER ON MY NOSE feeling enough for you to have managed put the mask back on long enough to turn the machine back on. (And breathing through a mask when the machine is NOT on is, in fact, difficult.)


Now onto the two troublesome periods of the night. Something weird started happening about 15 minutes into the ramp period: The breathing becomes much more erratic (all those spikes), the leaks become potentially significant; and snoring is being picked up.

If the ramp were not suppressing the machine's ability to increase pressure, your pressure level would have started to increase just as soon as the machine started to record the snoring. There's a real question of whether you fell asleep and started snoring or whether there is something in your transition-to-sleep breathing that the machine decides is snoring. That's fodder for an additional post, so I don't want to say anything more about it just yet.

Then there's the stuff that's between the end of the ramp and midnight that I've labeled as "Look at this stuff more closely". There's clearly a lot of events recorded during this part of the night. There's also some leaking going on. But the snoring has ended. Again, at this level of magnification, we can see the erratic breathing (lots of spikes), but we can't tell whether those OAs with a few CAs and Hs mixed in are real sleep disordered breathing events (because you were asleep) or whether they're "false positives"---events scored when you were tossing and turning and working on fixing the dang leak that was bugging you because air was blowing into your eyes.

For what it's worth, it looks to my eyes like you briefly fell into real sleep between 11:30 an 11:40, but the growing leak and/or the increase in pressure woke you back up. Again, this warrants its own post so I won't say any more right now.

[robysue1]

If I did everything right, this link should go to my data at SleepHQ: https://sleephq.com/public/d0b921a0-2fb ... 1691a85b47

Now to look at that first troublesome part of the night when the ramp was still on. Zooming in at SleepHQ, this is what we see:


First ten minutes of the ramp, the breathing looks like you're normally settling into sleep. But what the hell happens around 10:55?

Do you fall asleep and start snoring? Do you get trapped into bouncing back and forth between light sleep (with snoring) and wake? And as the leak starts to grow, is that part of what's keeping you from getting sound asleep? Or is the snoring itself what's keeping you from getting sound asleep?

If we zoom in much further, we see this:

That repeated set of arousals (large breaths) followed by much shallower breathing would probably have led to the machine scoring some hypopneas if the ramp had not been on. It's also clear that the machine would have increased the pressure by several cmH2Os in response to the snoring during this stretch.

But all that still begs the question: Were you actually asleep at this point?

Because if you weren't really asleep, all that ragged breathing is just "sleep-wake-junk" (SWJ) that would likely not be scored as sleep disordered breathing on an in-lab sleep test.

But all that ragged breathing does indicate that you are not sleeping well at this point in the night. And prolonged periods of SWJ and actual wake during the night do interfere with the ability to get a good night's sleep.

So more questions for you to consider: Did the pesky leak start when you just (barely) fell asleep, and then you spent time tossing and turning and not sleeping well because you were fiddling with the mask trying to get the leak to stop?

And what about that snoring? You have to keep in mind that CPAPs don't have microphones in them. They don't "hear" snoring. Rather, they're looking for patterns in the breathing that indicate snoring is likely occurring. But some people have a breathing pattern when they are consciously working on relaxing that is close to a "snore". So were you starting to snore just as you were dropping off to sleep? And was your own snoring waking you back up? That's anybody's guess.

The upshot of this: You had real trouble establishing sleep on this night. It's possible that you were almost asleep by 10:55 or so, but the sound of your own snoring and then the pesky leak combined to make it difficult to fall into a real, continuous sleep.

That's not so much indicative of "CPAP not working right" as a problem with acclimating your brain to falling asleep with the CPAP. (I know because this was my biggest adjustment issue 15 years ago.)

[robysue1]

Now for the troublesome stuff that follows the end of the ramp period. Zooming in on that we get this (marked-up) picture:



You clearly feel into a (short) continuous sleep just as the ramp was over and the pressure increased from 4cm to 10cm. And you clearly transition into a (longer) continuous sleep by shortly after 11:55pm. But what the heck is all that stuff in the middle?

First, let's look at a close-up of that first bit of real, continuous sleep:

Just as soon as the pressure increases from 4cm to 10 cm in a little over a minute, you fall fast asleep---even though there's still a leak. (The leak is technically not in official "Large Leak" territory for a long enough time to matter.)

That pressure increase, by the way, is being triggered by the snoring and flow limitations in that last bit of SWJ type breathing that was so constantly present during the last 30 minutes of the ramp period. So all of this begs the question: Is the ramp pressure being so low part of what's keeping you from falling asleep more soundly?

But sadly, that first bit of sound sleep doesn't last very long: By 11:35 you're no longer soundly asleep:

Something woke you back up around 11:35. My guess? It's the leak not that "near miss" hypopnea that occurs a full minute before the arousal at 11:35.

At any rate, once you arouse at 11:35, you seem to get caught in a vicious cycle of SWJ:

Now a good question is why do you seem to get caught in a vicious cycle of SWJ? May it's because the leak bothering you or maybe it's caused by the handoff in control of your breathing not being smooth enough to let you get past the transition to sleep: When we transition to real sleep, the control of our breathing is switched to the autonomic nervous system and the CO2 trigger for "inhale now" is reset to a higher level. That often results in a momentary "stopping" or "slowing" of breathing (that would typically not be scored on an in-lab sleep test), but when our brain is already hyperaware of breathing (because we're trying to get used to CPAP), that normal "stopping/slowing" of breathing can jolt us back into WAKE. And that might be what's happening here.

It is worth noting that you finally transition to a real continuous sleep where you get a full sleep cycle only after the leak itself is finally addressed at around midnight. So all of that brings us back to the question: Are you still being bothered by low level leaks enough for it to mess up your transition to real sleep?

If that's the case, then the higher than desired AHI may be more indicative that you are just not sleeping well with the machine rather than there being something significantly wrong with the machine's settings. But having said that, I still think the 45-minute ramp together with the leaks are what interfered with your getting a good sleep at the beginning of this night. And I think that after your normal post-REM wake at around 1:45 AM, you took the mask off because your brain was not comfortable with breathing at 4cm of pressure, so it said "We need to just give up for the night."

[PhotoWolf]

I can't thank you enough for doing all of this, robysue1. I need information and explanations I can understand, and you've given me more of that in these posts than I've gotten from everyone else combined since this nightmare started. I will try these settings tonight and see how it goes.

Out of curiosity: Back during the pandemic did wearing a mask when you were out in public bother you in the sense of making you feel like you couldn't breathe right? If so, that was probably caused by some of the same things triggering your problems with trying to breathe normally with the CPAP mask on when you are at very low pressures.

As a matter of fact, yes. Even the cloth masks bothered me; the one time I tried to use an N95 mask, it was just impossible. Wearing a cloth mask, it felt like I could never get enough air when breathing in, while breathing out resulted in air going up around my nose and fogging my glasses, until I figured out how to seal the mask properly. The N95 mask made me feel like my mouth was in a sauna.