PhotoWolf wrote: ↑Sat Mar 08, 2025 9:00 am
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:
PhotoWolf wrote: ↑Sat Mar 08, 2025 9:00 am
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.
PhotoWolf wrote: ↑Sat Mar 08, 2025 9:00 am
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.
