Brand New to CPAP - Leaky Masks Waking Me Nightly

I was diagnosed with severe OSA a few weeks ago, and got set up with a brand new CPAP machine and two masks last week.

My equipment:

- ResMed AirSense11 AutoSet
- Phillips Respironics DreamWear Full Face
- ResMed AirFit N30i

I have an after market chin strap that I purchased but have not used.

I was fitted twice by health care professionals behind these products, in both cases I was told that I was borderline on size, but both mouthpieces recommended for me, for both masks, are size “M”.

Generally speaking, I am a side sleeper, a heavy mouth breather, and I tend to toss and turn a lot in bed.

So my first week with CPAP has been nothing but hell, much worse then before CPAP when I would just wake every night at 3am like clockwork from the apnea, and either go back to sleep, or not.

Now, the new routine is as follows:

- Go to sleep with either mask and machine on. Everything is working fine at bedtime.
- One hour later give or take, I wake up to air shooting out from all around my mask. Doesn’t matter if it’s the nasal mask, or the full mask, same thing happens. The mask is on, it feels good, nothing to adjust by hand, but I can’t get the whooshing air to stop without shutting off the machine and starting the process from scratch again.
- Now repeat that process, all night, every night, until it’s morning and I’ve got to get up, or I throw the mask on the floor and just sleep old school.

So far, I’ve only adjusted mask straps. Making them tighter only hurts my face and nose, it doesn’t prevent the middle of the night leaks. I have not tried the chin strap with the nasal mask yet, but I’m thinking the full mask might be better for me anyway, if I could just get it to work.

The company and people behind these products are great, but stretched thin, and it’s hard to get them to understand what’s going on, and have them help me. After the initial fitting, it’s all been remote, or I have to come to them, as opposed to seeing me at home in the correct setting. They’re trying, but I think that I need to try and help myself here too, thus this post.

Other possibilities:

- Change the mouthpiece size
- Change masks altogether (these two came free, next one costs me until another three months under insurance)
- Change bedding or pillow
- Change something else about my bedtime routine
- A faulty machine
- Maybe there isn’t a good CPAP solution for side sleeping, mouth breathing, tossing and turning people like myself.

All kidding aside, I am not a quitter, and I’m willing to put the time, effort, and yes, additional money into getting this to work, but I starting to lose confidence in CPAP as a viable solution for me . And I haven’t had a good nights sleep in months, with the last week being probably the worst sleep of my life.

I need help, thanks in advance for any advice, direction, information, etc.

Can you sleep on your back long-term? If not, some of these videos might be helpful - https://www.youtube.com/results?search_ ... e+sleepers

You might toss and turn less when you get your CPAP system working well.

Embeeous wrote: ↑

Sun Sep 15, 2024 2:24 pm

I was fitted twice by health care professionals behind these products, in both cases I was told that I was borderline on size, but both mouthpieces recommended for me, for both masks, are size “M”.

The first thing that I'd try is changing the cushion (i.e. "mouthpiece") size. In other words, if you were borderline M/L, try a L. If you were borderline M/S, try a S.

Generally speaking, I am a side sleeper, a heavy mouth breather, and I tend to toss and turn a lot in bed.

Several things:

1) If you are not hanging the hose, that might help. If you don't want to buy an official hose hanger and your bed has a headboard, you can drape the hose over the headboard. Hanging the hose will do two things for you:

• Take some of the "weight" off the mask so it is less likely to slip out of position because the hose is pulling it off your face.
• Give you more freedom of movement since you won't have to worry about getting twisted up in the hose.

2) Once you get your CPAP therapy optimized and working for you, you may very well find that you will toss and turn a lot less than you currently do. In other words, as you learn to sleep well with the CPAP mask on, your body may start moving around less simply because you no longer need to arouse yourself every few minutes to restart the breathing. (You don't remember all those arousals in your pre-CPAP, apnea-filled sleep, but they were there and they were destroying the real quality of your sleep.)

3) How are you fitting the mask each night before you go to bed? Are you doing it sitting up vertically? Or are you doing it lying down, but not in your preferred sleeping position on your side? It's important to fit the mask in the position you want to go to sleep in. Since you're a side sleeper, that means taking some time to really sort out how to fit the mask while lying on your side. You may need to practice this well before bedtime for several weeks before it becomes an automatic skill for you at bedtime.

So my first week with CPAP has been nothing but hell, much worse then before CPAP when I would just wake every night at 3am like clockwork from the apnea, and either go back to sleep, or not.

Now, the new routine is as follows:

- Go to sleep with either mask and machine on. Everything is working fine at bedtime.
- One hour later give or take, I wake up to air shooting out from all around my mask. Doesn’t matter if it’s the nasal mask, or the full mask, same thing happens. The mask is on, it feels good, nothing to adjust by hand, but I can’t get the whooshing air to stop without shutting off the machine and starting the process from scratch again.
- Now repeat that process, all night, every night, until it’s morning and I’ve got to get up, or I throw the mask on the floor and just sleep old school.

Many, many of us old timers started out the same way. And many of us have thrown the mask against the wall or onto the floor out of frustration.

But it is important to try to not allow yourself to go back to sleeping "old school" without the mask. And here's the reason: Sleeping well with the mask is not natural; it's a skill. And like any new skill, it takes practice to master. Unfortunately one part of mastering CPAP is to convince the unconscious part of your brain that you really do need to learn how to sleep in this funky new way.

Now because you are having a specific problem with leaks waking you up, you've also got something to start trouble-shooting. So let's examine what you say about the leaks again:

- One hour later give or take, I wake up to air shooting out from all around my mask. Doesn’t matter if it’s the nasal mask, or the full mask, same thing happens. The mask is on, it feels good, nothing to adjust by hand, but I can’t get the whooshing air to stop without shutting off the machine and starting the process from scratch again.

So first and foremost: Have you looked at the leak data gathered by your machine? If so, what does it say about your leaks? The detailed leak data that is seen in OSCAR or SleepHQ gives a much better picture than the "leak score" in MyAir or the data on the machine's LCD

Since you say shutting the machine down and starting the process over seems to fix the leak problem, it's also worth considering the following:

1) Do you know your therapeutic settings? Do you know if you are using APAP or CPAP? And if you are using APAP, do you know what the pressure range is? If the pressure is increasing because you are using APAP or a ramp and you are waking up after the pressure has increased, it might not be leaks that you are noticing.

2) Do you know where the mask's intentional exhalation vents are located? Once the pressure ramps up to your therapeutic pressure, it is common for the intentional venting of the mask to be much more noticeable. And if you are using And some people do wake up in the middle of the night (for other reasons) and notice that the intentional venting seems excessive and their sleep addled unconscious decides the mask is leaking every where. So the first thing is you need to make sure that the mask is in fact leaking in more than one place.

3) If the pressure has increased due to flow limitations, snores, RERAs, hypopneas or OAs being detected, then there will be more airflow into the mask. That can also feel like a the mask has sprung a leak when it hasn't.

4) Many people have the problem that when they get into a deep sleep, the lower half of their face relaxes to the point where the mask does spring significant leaks. And the leaks then wake them up. Unfortunately this can happen when using a full face mask as well as a nasal mask. The problem is not just the mouth opens up and the person starts mouth breathing. (A full face mask should let you mouth breathe without increasing the leaks.) The problem is the shape of the lower face changes and that causes the leaks to start.

For #4, usual suggested fixes are chin straps (even when using a full face mask) or mask liners or both.

So far, I’ve only adjusted mask straps. Making them tighter only hurts my face and nose, it doesn’t prevent the middle of the night leaks.

Over tightening a mask is almost guaranteed to increase leak problems. And no mask should hurt your face and nose. So make sure that you are not over tightening the staps.

Now the masks you say you are using are:

- ResMed AirFit N30i---this has an air cushion that must be fully inflated. But mouth breathing is going to trigger leaks. Also, the hose attachment is at the top of the head and if you are NOT hanging the hose overhead, then when you move around in bed, it's possible you are pulling the mask out of place. I would suggest HANG THE HOSE and use a chin strap when using this mask.

- Phillips Respironics DreamWear Full Face---again this has an air cushion that must be fully inflated. And again the hose attachment is at the top of the head and if you are NOT hanging the hose overhead, then moving around in bed is probably pulling the mask off your face.

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.

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.

Next 3 Oscar screenshots

Last two OSCAR screenshots

Embeeous wrote: ↑

Wed Sep 25, 2024 7:52 am

Regardless of which mask I choose, my issue seems to be waking up when that pressure ramps up to handle an apnea event.

Just so you understand that these machines, when in auto adjusting pressure mode, will NOT EVER increase the pressure trying to "handle" an apnea event. During the apnea event itself the machine actually does nothing at all except twiddle its little thumbs. It won't even try to stop the OA or hyponea while it is actually occurring. It also will never ever increase the pressure for central/CA apneas.
These machines can't blow the airway open and restart breathing....they cannot generate enough pressure and quickly enough to end the "event".

Instead...once the "event" is over with the machine will take into account prior OAs/hyponeas along with any snores or flow limitations and THEN maybe increase the pressure in an effort to better prevent airway collapses that might happen in the future.

For central apneas (CAs) the machine will never do anything because it can't and also because it won't help unless the machine is acting like a ventilator and forcing you to breathe and your machine is NOT in the ventilator category.

Embeeous wrote: ↑

Wed Sep 25, 2024 7:52 am

because it's sometimes sensing a leak and just keeps the pressure going to address is

If you are thinking that the machine will try to fix a leak by adding more pressure then you need to get that idea right out of your head. These machines will NEVER increase the pressure when a leak happens in an effort to stop the leak.
Now it may seem like it because it's the air flow (not the pressure) that will sometimes be increased when a big leak happens. Air flow or force of air that you perceive is not necessarily the same as the pressure setting.

Don't make changes to your setting nightly.

You charts show that you're spending half the night at pressures in the vicinity of 7 or higher.

If you set your minimum pressure close to 7, you may have less interruptions and may sleep better. The machine will then be preventing obstructive events, instead hurrying to respond after the even has happened.

For some people the switch from 4 to 7 it too dramatic, so you you may want to do that gradually. If you decide to raise the minimum gradually, that's the only change I'd recommend trying on a nightly or bi-nightly basis - if you can tolerate the change. Otherwise, test things for a week or so.

Some people are sensitive the varying changes. After you see how a minimum of about 7 works for you, you'll know if fixed pressure is worth trying.

Embeeous wrote: ↑

Wed Sep 25, 2024 7:52 am

My issues are still ongoing, I thought that my sleep was getting better, but now it's actually gotten worse the past few nights.

There's a lot of "two steps forward, one step backwards" in the process of mastering how to sleep well with a CPAP machine. Don't let a temporary setback get you overly worried.

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.

Changing only one thing at a time is a very good idea. But also keep in mind that any changes you make need to be used for at least 3-5 days before making further changes, except if a change leads to a clear disastrous night. And in that case, you go back the way things were the previous night.

- 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.

The search for a good mask is something that many new CPAPers have to go through. Unfortunately a "good mask" is in the nose of the beholder: What is Person A's perfect mask is a nightmare for Person B and vice versa.

- 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.

Pressure increases can wake some people up. That's why some people do prefer to use a fixed pressure rather than a pressure range.

More on why your machine is increasing the pressure after you go to sleep in a bit.

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.

It's a crying shame that your provider does not know enough about APAP machines to give you a straight answer to what's going on.

So here's an APAP primer to help you understand what's happening.

Your machine is set to run wide open---i.e. the pressure range is 4-20 and your EPR = 2. When you first turn the machine on, your machine is blowing air at a rate to establish a pressure of 4 cm H2O in the "semi-closed system" comprising the machine's blower unit, the hose, the mask, and your upper airway. There's a built-in intentional leak to prevent you from rebreathing your own exhaled CO2. The machine has to pump air into the system at just the right rate to maintain the current pressure setting.

Since you are running in Auto mode, your machine is programmed to "respond" by increasing the pressure setting when certain things are detected based on your breathing pattern. These include the obvious obstructive apneas, hypopneas, RERAs, flow limitations, and snoring.

Snoring is assumed to be occurring when the inhalation/exhalations in the flow rate graph (wave flow graph) have characteristic shapes that are associated with snoring being scored on in-lab sleep tests where the tech can witness the snoring. (These patterns can be subtle enough or short lived enough for a CPAP user to scratch there head and say, "Where's the snoring?") Whenever the machine detects what it believes is snoring, it will increase the pressure and continue to increase the pressure until the snoring ends.

Flow limitations are distinct distortions in the inhalation part of the flow rate graph, and are thought to be associated with an increased risk of airway collapse. Again, the distortion in the flow rate may be subtle enough for a CPAPer to scratch their head and say, "Where's the flow limitation?" Conversely when you start micro-analyzing every single breath, a CPAPer can scratch their head and say, "Why wasn't that bit of breathing scored as a flow limitation?" My point is we're not privy to the algorithm used to score flow limitations, but we do know that an AutoSet running in Auto mode is programmed to increase the pressure when flow limitations are detected. The machine will keep increasing the pressure as long as it thinks the flow limitations are "smoothing out" and it will stop increasing the pressure once the machine is happy that there are no more flow limitations in the inhalations.

RERAs are scored when there is a certain pattern of inhalation that lasts at least 10 seconds followed by a sudden increase in the size of the inhalations that indicates an arousal has likely occurred. Hypopneas are scored when the size of the inhalations drops by at least 50% of the "running baseline" calculated over the last couple of minutes (if I recall correctly). It can be quite difficult to eyeball why one stretch of breathing gets labeled an H and other does not. The reason is simple: It's very difficult for a CPAPer to look at the flow rate data and correctly calculate both the running baseline inhalation and what a 50% drop looks like with any accuracy. Apneas are scored when the inhalations drop by at least 80% of the "running baseline". The most obvious apneas show no movement in or out of the lungs for at least 10 seconds. While an apnea is occurring, the Resmed machines will implement something called an FOT (forced oscillation test) to determine whether the airway appears to be obstructed (OA) or appears to be clear (CA). Apneas where the airway appears to be obstructed are assumed to have occurred because the airway collapsed and are assumed to be obstructed sleep disordered breathing event---i.e. the brain told the lungs to "inhale NOW", but no air could get into the lungs through the collapsed airway. Apneas where the airway appears to be clear are assumed to be central apneas---i.e. they occurred because the brain forgot to send an "inhale NOW" signal to the lungs.

Now while a RERA, H, OA, or CA is occurring the machine is not going to change the pressure setting. If the event is an apnea, the machine will go into the FOT algorithm, and the FOT algorithm does use small repeated pressure changes to test the patency of the airway. That small change in pressure can be seen in the Mask Pressure curve in OSCAR, but not the Pressure Curve(s) in OSCAR. After a RERA, H, or OA event is over, the machine will increase the pressure by at least 1 cm (if you're not at Max Pressure) and it may keep increasing the pressure a bit more in the presence of flow limitations or snoring. If a cluster of events occurs, there will be a pressure increase after each of the events in the cluster.

Once the machine is happy with the inhalations, a Resmed machine will start to drop the pressure somewhat gradually. It will keep dropping the pressure until one of two things occurs: Minimum pressure is reached OR more flow limitations, snoring, RERAs, Hs, or OAs are detected. As soon as any of these are detected, the machine starts increasing the pressure again until it is happy with the shape of your inhalations.

So to recap: The machine increases the pressure in response to flow limitations and snoring as they occur. It increases pressure after a RERA, H, or OA has ended. It keeps increasing the pressure until it is happy with your breathing and then it immediately starts decreasing the pressure until more events occur or the minimum pressure setting is reached. This is what gives the characteristic "wave" pattern in your pressure graph---the fronts of the waves are the (relatively) steep pressure increases in response to flow limitations, snoring, RERAs, Hs, and OAs; the backs of the waves are the slower, gentler pressure decreases after the machine is "happy" with your breathing.

Leaks are a whole different story. So here's what you need to know about leaks: The machine does not increase the pressure because a leak has been detected. Never. But remember that the whole idea behind CPAP therapy is that the machine is blowing air into a semi-closed system to maintain a given pressure setting. And the rate the air must be blown into the semi-closed system to maintain the desired pressure depends on how fast air is being lost from the system in the form of leaks. When an unintentional leak starts, more air is being lost from the system. So in order to maintain the current pressure, the machine has to blow more air into the system. The bigger the leak, the more air the machine has to blow into the system to keep it at the desired pressure. But when you are half-asleep and there's a leak, all that additional air being blown into your mask in order to maintain the current pressure setting can feel like the machine is increasing the pressure. But it's not increasing the pressure---it's increasing the airflow into the mask in an effort to maintain the current pressure setting. If the leak gets large enough, the machine will actually decrease the pressure setting in an effort to see if less airflow into the mask helps "fix" the leak. (This only happens with really, really LARGE leaks.)

Now there's another wrinkle you need to be aware of with your current settings: 4-20cm pressure range, EPR = 2. Since the machine will never go below 4cm of pressure under any circumstances, you are not getting any exhalation relief when you first start your machine. The pressure is 4cm on every inhalation and the pressure is 4cm on every exhalation. Only after the machine starts to increase the pressure do you have any exhalation relief. When the machine hits a pressure setting of 5cm, the pressure is 5cm on every inhalation and 4cm on every exhalation. Once the machine is finally above 6cm, you get the full exhalation relief of 2cm: The pressure is 6cm on every inhalation and 4 cm on every exhalation. If you are finding it difficult to breathe with the machine when you first turn it on, you may find it much easier to breathe if you bump your min pressure up to 6cm so that you get full exhalation relief when you are trying to get to sleep at the beginning of the night.

That's the end of the primer on how your APAP actually works.

- 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.

If you want the pressure to go all the way back down to 4cm when you wake up, then you will have to turn the machine off and back on. I do that a lot because my stomach is pretty sensitive (i.e. I've fought aerophagia a lot) and the stomach wants reassurance that the pressure is back to my minimum settings when I've woken fully up in the middle of the night.

She made two adjustments to the machine yesterday - one, she turned the ramp up time from 45 minutes to auto;

With a minimum pressure setting of 4cm, fiddling with the ramp is not doing you much good. But switching the ramp from 45 minutes to auto does allow the machine to start responding to flow limitations, snoring, RERAs, Hs, and OAs as soon as it thinks you are asleep. That's a good thing since Resmed machines don't record events during the ramp period if I recall correctly.

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.

Sounds like she turned EPR on and set it to "2".

But as I explained in my earlier post, with a minimum pressure of 4cm or a beginning ramp pressure of 4cm, turning EPR on is going to do NOTHING in terms of how the machine feels when you first turn it on. Likewise, EPR = 2 is not going to change the machine's response to your events during the night.

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

This is an important question so answer it: When you say you literally could not breathe, do you mean you could not exhale comfortably and completely? Or do you mean you could not inhale comfortably and completely?

Both sensations are described by CPAP newbies as "I literally cannot breathe." Both are very real sensations. Both are problems that can be dealt with. But the fix for these two "I cannot breathe" problems are very, very different. That's why we need to know exactly what you mean by "I could not breathe."

- 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!

If the respiratory therapist's company has paid for the DME provider cloud software and if your machine can talk to the cloud, then, yes, your respiratory therapist (RT) should have been able to determine that by looking at your data in the cloud. But if your machine is not uploading its data to the cloud, your RT would be as clueless as you are.

Now, she could have gotten the so-called "95% pressure setting" off the machine's LCD when she was changing the EPR setting, but apparently your RT is too ignorant about Autosets to have known that.

The reason the 95% pressure setting is important is this: That's the pressure most sleep docs and most knowlegeable RTs will use as a starting point if the patient wants to use a fixed pressure instead of an auto-adjusting range. In your case, since you think pressure increases are waking you up, it makes sense to try switching to straight CPAP to see if you would sleep better. Given the data you've posted, a straight CPAP setting of 9cm with EPR = 2 (or maybe EPR = 3) would be a reasonable thing to try.

Hi All:

Sorry in advance for the epic.

First off, thanks to RobySue and everyone else that has provided incredible responses to my initial and subsequent messages. At this point, I have a ton of new information and recommendations coming at me from every direction, it is impossible to review digest and implement even the most basic of suggestions when there is conflicting data, so I've been looking for common responses among all of your responses. Mind you, without any sleep

Here is the latest update...

Last night I changed a few things up..

- Changed APAP to CPAP
- Set it to a constant pressure of 8
- Turned off Ramp
- Turned off EPR

I went with the ResMed N30i nasal mask, and the Lundberg CPAP pillow. These were recommendations that were common among a thread that I've got on another board, backed up by data that I reviewed with several friends who also have home CPAP setups.

And I wound up having the single worse night of sleep since starting CPAP treatment

I usually can at least get to sleep, but 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 own tired observations, just the increased pressure made it impossible for me 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.

Maybe CPAP isn't the thing for me. Or maybe I need to change something and try again. I don't know.

Here's my dilemma at this point...

I am not asking anyone 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 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 (APAP), with the 4-20 range that he set me up with, but keeping Ramp and EPR off. You could make the argument to change the range to something like 7-20 or 8-20, and I would understand and be open to that. Ramp makes no sense to me, I don't think that I need it, so I am keeping that off. Same with EPR, for now. I understand the pressure/EPR trade off, but I honestly can't see messing around with that unless I've got good solid data and a professional involved. In general, I can't see CPAP (vs. APAP) working for me, this notion of keeping the 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 the necessary pressure (7-8?). And if I lower that number below 7-8 so I can comfortably fall and stay asleep, then the device probably won't handle any events, 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, and "better" meaning 5 hours with tons of interruptions, but I did sleep. So 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 anyone sees something that stands out that can be addressed by making any changes to last night's settings. Again, if I hear nothing, I'm going back to my original standard settings that came with the machine courtesy of my general practitioner, who somehow got me started on all of this without a sleep doctor engaged. Not that I'm complaining, but. 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 say 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 for me, 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.

Embeeous wrote: ↑

Thu Sep 26, 2024 9:32 am

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.

You might as well look for a live unicorn. Sleep doctors are only good for providing a diagnosis and prescription which you need for a health insurance claim.

Well, that’s inspiring I’m not looking for someone to solve world peace here. My general practitioner was able to get me a CPAP device and masks, without any involvement from a sleep professional. The company behind the product has good intentions but is basically useless. I came to these boards for advice, but I guess that I thought that someone other than my general practitioner would have a better handle on initial settings and ways to overcome issues. I didn’t envision doing this all on my own, doing a crash course in CPAP, determining my own settings etc. I’ve already met some amazingly knowledgeable and helpful people out here on these boards and others, but with all due respect, we’re all complete strangers to one another and anybody can say anything they’d like. This is a medical device that helps manage how you breath while you sleep, why would I not be looking to a medical professional for at least initial setup and support? I can’t believe that I’m asking for a unicorn so early in the process. I’ve still got faith that the Dr. I’m seeing in a month (or a different one in less time if I can find one) would help compared to what I’m doing now.

Embeeous wrote: ↑

Thu Sep 26, 2024 9:32 am

Last night I changed a few things up..

- Changed APAP to CPAP
- Set it to a constant pressure of 8
- Turned off Ramp
- Turned off EPR

Way, way too many changes all at the same time. No wonder it lead to:

And I wound up having the single worse night of sleep since starting CPAP treatment

You changed mode, made a significant increase in pressure, turned off EPR and turned off the Ramp all at the same time. Four big changes, and it's really not a huge surprise that things didn't go well

Later you write:

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 (APAP), with the 4-20 range that he set me up with, but keeping Ramp and EPR off. You could make the argument to change the range to something like 7-20 or 8-20, and I would understand and be open to that. Ramp makes no sense to me, I don't think that I need it, so I am keeping that off. Same with EPR, for now. I understand the pressure/EPR trade off, but I honestly can't see messing around with that unless I've got good solid data and a professional involved.

This is a reasonable plan, but I think you're over worrying about what you call the pressure/EPR trade off.

Both RAMP and EPR are supposed to be patient comfort settings. In other words, for most people, it doesn't make much difference in terms of efficacy of the CPAP therapy whether you use EPR or the RAMP, but one or both of them can make a critical difference in terms of comfort. And comfort is a significant part of learning how to sleep with the six foot hose attached to your nose.

I would suggest turning the RAMP off since you (intelligently) plan on going back to APAP with a pressure range of 4-20cm. But I would turn EPR back on and set it to 2, so that the only that gets changed for a night or two is just that there won't be a "RAMP" artificially keeping the pressure at 4cm for an extended period of time.

And remind you of what you posted a few days back and repeat my question to you:

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

This is an important question so answer it: When you say you literally could not breathe, do you mean you could not exhale comfortably and completely? Or do you mean you could not inhale comfortably and completely?

The answer to this question is super-significant: If you sometimes feel like the machine is smothering you because you cannot exhale comfortably and completely, then the best way of addressing that problem is through using EPR (and most likely setting EPR = 3).

But if you sometimes feel like the machine is smothering you because you cannot inhale comfortably and completely then the fix may be a combination of increasing the minimum pressure setting and turning EPR down or off. (Which suggestion makes the most sense depends a bit on exactly how it feels like the machine is messing with your inhalations.

Also worth telling us even though you had a horrible, disastrous night with the settings that you tried last night: When you were awake at the beginning of the night, did you feel uncomfortable exhaling or inhaling? If so, which gave you the bigger problem. You also said that at 8cm of pressure you were having trouble keeping your mouth shut. That would point to EPR being potentially useful for you.

Here's my dilemma at this point...

I am not asking anyone 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.

Been there, done that, and have the scars to prove it. As do many other long time posters on this board. I just want you to know that you are not alone in how you feel about the doctors, the equipment companies, and the respiratory therapists who are supposed to be working with you in order to get this crazy therapy to work for you in your own bedroom.

Keep this in mind: Most doctors and most respiratory therapists have never put a CPAP mask on their nose and turned the machine on and left it on for more than 15-20 minutes while wide awake. In other words, most of them have no experience at all with actually trying to sleep with a CPAP machine. So in principal they know the "theory", which vastly simplified says: Once the CPAP fixes the obstructive sleep apnea, the patient should be able to sleep soundly all night long, every single night.

Those of us with actual experience know it's not that simple a lot of the time. Heck, the sleep docs and respiratory therapists do know that compliance with CPAP therapy is pretty dismal---lots of folks get frustrated and simply give up and continue living with the bad apnea filled sleep that they've had for years. The best sleep doc I ever had was one of the rare ones who had OSA himself and slept with a CPAP every night---he actually had some real comprehension of what I was going through when I was still having problems with aerophagia which led to both pain and insomnia problems.

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 on these boards, be my own champion, and do my own due diligence on all of this.

Keep this in mind: All the CPAP is doing is blowing a bit of extra air down your windpipe. It's actually a pretty benign therapy, and it's not rocket science.

Given what you said about your respiratory therapist asking you what the "average pressure level" on your APAP was, I strongly suspect that you were prescribed the APAP running 4-20cm as a way of titrating you, rather than putting you in a lab and having a sleep tech (different from a respiratory therapist) manually titrate you by watching what was going on and adjusting the pressure in response to what was going on. It's become pretty common these days for sleep docs to just prescribe an APAP with a pressure range of 4-20 instead of sending recently diagnosed folks (back) to the sleep lab, and as uncomfortable as in-lab sleep tests are, it's not necessarily a bad way to titrate folks starting out on CPAP therapy. Unfortunately, as you have found out, most of the people in the process treat you like you're a mushroom---they keep you in the dark, and if you're female they give you the proverbial pat on the head and say you don't need to worry your little brain about what's happening.

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.

Sadly most of the sleep docs don't really look at the data beyond giving it a cursory scan. They'll focus on the usage data (because that's how they and the durable medical equipment provider (dme) get paid. They may look at the summary AHI data, and if the summary AHI data shows the AHI is below 5.0 on most nights, they'll say the therapy is effective---if you would just use the machine every night, all night long. If you complain about a dry mouth or dry nose, they may suggest or may insist that you need a full face mask even if you know you don't mouth breath. If you complain about a leaky mask, they'll refer you to the RT who is supposed to be the one who "fits" the mask---i.e. the docs don't have the foggiest idea of how the mask is suppose to be fit and quite frankly they don't care---they don't see it as "their job." But more than likely a sleep doc is not going to want to look at your detailed wave flow data in an effort to figure out what might be messing with your sleep.

Now there are some good docs out there, but it can be hard and very frustrating to find one. My fourth sleep doc was a gem, but alas, he retired just before the pandemic hit. I got lucky with sleep doc #5, who is in the same practice as my old one. And sleep doc #5 apparently read sleep doc #4's patient notes about me because sleep doc #5 has given me the same kind of freedom sleep doc #4 did in terms of changing my own pressure settings if I see the need to and trusting me to let him know if I start to have problems with my sleep deteriorating yet again. Fortunately since the pandemic, the only real problem I have had to deal with was getting switched to a Resmed Aircurve VAuto when my PR DreamStation BiPAP Auto was under recall and started showing the tell-tale pieces of black foam in the humidifier tank.

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.

Yes. But unfortunately most of them are not very good at listening to patients. Good luck in finding a decent one.

You could make the argument to change the range to something like 7-20 or 8-20, and I would understand and be open to that. Ramp makes no sense to me, I don't think that I need it, so I am keeping that off. Same with EPR, for now. I understand the pressure/EPR trade off, but I honestly can't see messing around with that unless I've got good solid data and a professional involved.

Again, I think you're overthinking the EPR "trade off". Most sleep docs and RTs are going to say that if using EPR makes it easier for you to sleep, then use it. Yes, there's a small chance that EPR = 3 can cause some real CAs to happen. But for most people, that doesn't happen and for most people, using EPR does not significantly increase the AHI and it can significantly increase the patient's comfort, and hence maximize the chance that they will eventually become a happy PAPer.

In general, I can't see CPAP (vs. APAP) working for me, this notion of keeping the 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 the necessary pressure (7-8?). And if I lower that number below 7-8 so I can comfortably fall and stay asleep, then the device probably won't handle any events, so it defeats the whole purpose right?

There's lots of potential trade offs.

1) What's driving most of your pressure increases seems to be flow limitations rather than obstructive events. It's possible that at 6cm of pressure most of your obstructive apneas and hypopneas will be prevented, but the residual flow limitations will still be present. Whether that's an issue for how well you sleep is not something a sleep doc (or anybody else) can predict.

2) You may be able to get to sleep just fine with a constant pressure of 7cm with EPR = 3. We just don't know and neither do you.

3) You may be better off going back to using APAP with a range of 4-20 and you may learn to not arouse because of pressure increases. Only time will tell.

I slept better for a few nights with the original APAP settings, the nasal mask, and a CPAP pillow, and "better" meaning 5 hours with tons of interruptions, but I did sleep. So 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'll give you this heads up: When a new CPAP tells a sleep doc that they are having "tons of interruptions" to their sleep while using the APAP/CPAP, the typical sleep doc is going ask whether you would like to have a script for short term use of a sleeping pill to get you over the hump.

There's not a right/wrong answer to that suggestion. Some people are happy to try prescription sleeping pills and it can often make a difference in reducing the number of nighttime wakes. Other people would really rather not take a prescription sleeping pill for a lot of different reasons, including a fear that they'll get hooked on them long term and not be able to sleep without them. You'll have to figure out whether you're willing to try prescription sleeping pills if a sleep doc suggests them as a way to make your sleep with the machine more continuous.

I'm attaching the OSCAR data from last night, in case anyone sees something that stands out that can be addressed by making any changes to last night's settings. [/quote]The only thing that stands out in this data is that your leaks look a bit worse.

Given the disaster, I would suggest that you go back to APAP 4-20. I would leave the RAMP off, but I would turn EPR = 2 even though you won't feel any exhalation relief until the pressure starts to increase to 5 cm, and you won't get the full benefit until the pressure reaches 6cm.

I would also think about the leaks. Even though there are some big ones, they're not lasting long enough for Mr. Red Frowny Face to show up or for MyAir to say your leaks are bad. But given that you report numerous sleep interruptions, we have to consider that those leaks may be what is waking you up or keeping you awake after you wake up. You might want to review the fitting instructions for your mask and you might want to make sure that you fit the mask while lying down in your preferred sleep position.