Confused about the goal of PAP therapy

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
soyjer
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Confused about the goal of PAP therapy

Post by soyjer » Thu Jan 16, 2025 5:06 am

Is the goal to:
1.) Feel well rested,
or
2.) Make your AHI numbers and Oscar graphs look good,
or
3.) Both of the above?

If death from apnea is extremely rare, is it still actually dangerous to adjust my pressures to optimize #1, while completely ignoring #2?

Should I trust my subjective feeling of being well rested, or should I ignore that and seek #2, instead?

My sleep center's PA's willingness to lower pressures seems to be directly proportional to how much the patient complains about discomfort, and so clearly their goal is #3, but personally, at this point, I just want #1, even if it is at the expense of my health and/or shortens my life span.

I realize that summary data alone is a lousy way of evaluating sleep, but that is, of course, all that the sleep center uses for ongoing patient monitoring, and even though a recent lowering of pressures actually LOWERED my AHI from ~3 to ~2, they are still reluctant to further lower my pressures temporarily to see if that would help me to feel more rested in the daytime.

Is there a danger in doing so that I am not aware of?

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lazarus
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Re: Confused about the goal of PAP therapy

Post by lazarus » Thu Jan 16, 2025 6:44 am

There is more to good sleep than good sleep-breathing alone. But that does not mean good sleep-breathing should be ignored or its importance discounted.

The goal of PAP therapy is to experience all the benefits of improved sleep that comes as a result of better sleep-breathing, which can be measured both objectively by using data and subjectively by how you feel over time. The long-term benefits to health and quality of life are not mutually exclusive but ideally are synergistically reinforcing for improving life on multiple levels simultaneously.

Not dying, feeling well-rested, and being comfortable are only three of many, many benefits experienced when someone tweaks therapy to make it ideal, and taking all of that into your own hands by being as educated as possible and learning from (1) medical professionals, (2) fellow patients, and (3) software-data results is only logical, since no one cares about your health and well-being more than you do. Neither the objective data nor how you feel should be ignored along the way. Balance without ignorance is always key. Good quality sleep is what allows us to make other related improvements to our lifestyle and habits that pay significant dividends both short-term and long-term.

I wish you all the best and hope you benefit from optimized PAP therapy as much as I have. There naturally can be some variety in how one gets there.

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zonker
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Re: Confused about the goal of PAP therapy

Post by zonker » Thu Jan 16, 2025 12:32 pm

i'm in agreement with lazarus because he'll beat me up if i'm not.

your number 1 and number 2 can often be in conflict with each other. one would think if your ahi was 0, you'd have perfect and well rested sleep. I know from experience that this is not necessarily so. I concentrate on getting as good a sleep as I can. this means for me that i mostly have an ahi of under 2. makes me happy though it took me forever to realize it.

did you know you can adjust your own settings?
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Re: Confused about the goal of PAP therapy

Post by lazarus » Thu Jan 16, 2025 12:56 pm

zonker wrote:
Thu Jan 16, 2025 12:32 pm
i'm in agreement with lazarus because he'll beat me up if i'm not
I generally only beat up people who agree with me out of fear.

Good points, Mr. Zonker.

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Re: Confused about the goal of PAP therapy

Post by zonker » Thu Jan 16, 2025 5:32 pm

lazarus wrote:
Thu Jan 16, 2025 12:56 pm
zonker wrote:
Thu Jan 16, 2025 12:32 pm
i'm in agreement with lazarus because he'll beat me up if i'm not
I generally only beat up people who agree with me out of fear.

Good points, Mr. Zonker.
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Re: Confused about the goal of PAP therapy

Post by robysue1 » Thu Jan 16, 2025 6:18 pm

soyjer wrote:
Thu Jan 16, 2025 5:06 am
Is the goal to:
1.) Feel well rested,
or
2.) Make your AHI numbers and Oscar graphs look good,
or
3.) Both of the above?
Number 2 is NEVER the goal: Perfect graphs in OSCAR and feeling lousy when you wake up equals non-optimal CPAP therapy. The goal for CPAP therapy is really a modification of #3: In other words, the goal is to get the treated AHI to be consistently in an acceptable range (i.e. be below 5.0) while also having you feel well rested and refreshed when you wake up each morning.

The idea is that once you've learned how to sleep well with the machine, accomplishing #1 will be aided by keeping the AHI down below 5.0. But learning to sleep well with the machine is far more complicated than simply accomplishing #2: The OSCAR graphs can look "good" and the AHI can be down near 0.0 even if you're tossing and turning and struggling to sleep well all night.

So the first short term goal with CPAP therapy is literally to learn to sleep well with the machine.

For some people, that does mean temporarily not worrying too much about the AHI numbers and the OSCAR graphs because they're simply having such a rough transition to CPAP therapy: If you're not really sleeping very much while using the machine, then you're going to feel pretty lousy because of the lack of sleep. (I was one of those people way back in 2010.) And once a person finally learns to sleep well with the machine? Usually they (finally) start to feel more rested when they wake up and usually their AHI is in the range that is considered "acceptable" by the sleep medicine community.

For other people? It turns out they don't feel like they're having too many difficulties getting and staying asleep while using the machine, but they still feel ragged when they wake up. Sometimes a careful perusing of the OSCAR data may indicate that the AHI might still be a bit too high, or there might be some residual flow limitations or residual snoring being scored. And in this case, working on improving the "numbers" in OSCAR (usually by appropriate changes in pressure settings) will often improve goal #1.

In other words, most of us feel at our best when we are both sleeping well with the dang hose on our nose AND therapy is decently optimized in the sense that our AHI numbers are sufficiently low. (For most people on this board, that usually means a nightly AHI below 2.5 rather than 5.0. For a few people on the board, that means an AHI below 1.5 on a regular basis.)


If death from apnea is extremely rare, is it still actually dangerous to adjust my pressures to optimize #1, while completely ignoring #2?
It's not clear that "death from apnea is extremely rare". The basic fact is that no-one really knows how many "deaths while sleeping" are apnea-related or completely out of the blue. In other words, if a person dies in their sleep and no autopsy is done, the death certificate is likely to read something along the lines of "cardiac arrest" and no-one will ever know if an OA is what triggered the heart to stop on that particular night.

Should I trust my subjective feeling of being well rested, or should I ignore that and seek #2, instead?
It's a tradeoff. And without knowing what your subjective feeling of being rested on wake is and what your treated AHI is, there's no real way to answer this question.

In general:

If you feel well rested and refreshed every morning on waking and you have enough energy to get through your day and your AHI is usually below 5.0, you can probably conclude that your PAP therapy is doing a good job. In this case, it's difficult to answer the question: Is it worth increasing the pressure to reduce the AHI a bit further or eliminate flow limitations and/or snoring while risking the pressure increase causing problems with sleeping well with the machine? That's really an individual's call. Some folks aren't particularly sensitive to pressure increases and chasing an illusive "perfect OSCAR graph" doesn't hurt the overall quality of their sleep. Other folks (like me) are prone to getting aerophagia (or leaks) when higher pressures are used, and chasing a "perfect OSCAR graph" simply destroys the overall quality of sleep. (For what it is worth, my nightly AHI is usually between 1.0 and 2.5.)

If you don't feel well rested when you wake up, then your CPAP therapy is not yet optimized OR you have other issues going on in addition to sleep apnea.. If you think you are sleeping the whole night through while using the machine rather than tossing and turning with frequent wakes, then it's well worth looking at the AHI data and seeing if a bit more pressure might bring the AHI down, particularly if the AHI is often higher than 5.0. But if you're tossing and turning and fighting to get and stay asleep with the machine, then the immediate work needs to focus on teaching your body to accept sleeping with the machine and learning how to fall and stay asleep with a 6 foot hose attached to your nose. You might feel better sleeping without the dang machine, but that's allowing the untreated OSA to continue to damage your body. Finally, it's worth noting that a whole lot of other things can also interfere with getting a good night's sleep. If you've got insomnia along with OSA, then you have to deal with both problems before CPAP is going to do its best work for you. If you've got chronic pain issues, you're going to have to deal with the chronic pain as well as the sleep apnea. If you've got PLMD or restless legs (they're NOT the same thing), you'll have to deal with that as well as the sleep apnea.

If you feel reasonably well rested when you wake up AND your AHI is still consistently too high (above 5.0), it is worth asking the question: Would you feel even better if that AHI were below 5.0? In this case it's worth experimenting: Try a small pressure increase for a few days and track what happens. Does the data improve? Does your sleep remain the same or does it get worse? If you feel worse when you wake up even though the AHI is a bit better, you have some evidence that pressure increase really didn't do anything for you. On the other hand, if you feel about the same or bette with the small pressure increase and lower AHI, then you know that lowering the AHI was useful. And if the AHI is still too high? You can try another small pressure increase for several days and see how things go. Eventually you'll find a pressure setting that "works for you" in the sense that your AHI is reasonably low AND you are sleeping well and feeling well rested when you wake up.

My sleep center's PA's willingness to lower pressures seems to be directly proportional to how much the patient complains about discomfort, and so clearly their goal is #3, but personally, at this point, I just want #1, even if it is at the expense of my health and/or shortens my life span.
Back in 2010, my first sleep doc's office was only interested in #2: Get the AHI below 5.0. I did have a PA who worked with me for several months because my AHI was consistently below 2.5, but my insomnia exploded immediately upon starting CPAP because I was over titrated and it triggered severe aerophagia and severe insomnia. By two weeks into therapy I was sleeping no more than about 3 hours a night (even though I was using the machine for about 6 hours a night), and I was severely sleep deprived to the point where I simply could not function. Eventually the PA was literally ordered to fire me as a patient because I was taking up too much time "getting better".
I realize that summary data alone is a lousy way of evaluating sleep, but that is, of course, all that the sleep center uses for ongoing patient monitoring, and even though a recent lowering of pressures actually LOWERED my AHI from ~3 to ~2, they are still reluctant to further lower my pressures temporarily to see if that would help me to feel more rested in the daytime.
Two comments:

1) Your AHI may have gone down from 3 to 2 simply because you started sleeping better with the lower pressure. What I mean by that: When we spend time tossing and turning in bed while using a CPAP and not sleeping, there's a tendency for the machine to mis-score our normal wake breathing patterns as sleep disordered breathing patterns. Sleep breathing and wake breathing do not look the same, but our machines assume that if we're using them, then we must be sleeping. Hence anything that looks like an OA, a CA, or an H gets flagged, even if the "event" happened when we were wide awake. So the more time you spend tossing and turning and not sleeping, the more likely there are to be "false events" scored while you were awake, and this in turn, can increase the AHI reported in OSCAR.

2) It's your machine and there aren't any CPAP police. Most of us have decided to learn how to get into the clinical menu of our machine and tweak our own pressure settings if the folks who are supposed to be treating us are ignoring us and appear to want us to be mushroom patients---content to be kept in the dark about our own therapy as we obediently comply with their instructions. In other words, if you want to experiment with lowering your pressure a bit more for a few more days, they can't actually stop you from doing that.

And even though a recent lowering of pressures actually LOWERED my AHI from ~3 to ~2, they are still reluctant to further lower my pressures temporarily to see if that would help me to feel more rested in the daytime. Is there a danger in doing so that I am not aware of?
To answer your question about the real risk of experimenting with lower pressures in the hopes of feeling more rested in the daytime, we need more data from you:

1) What were your symptoms that led to the sleep test that diagnosed you with AHI in the first place? Has there been any improvement on any of these symptoms since starting CPAP therapy?

2) What was the first pressure setting(s) they had you use? Did you have a titration study to determine the initial pressure setting? What problems did you report with the initial pressure setting that led the sleep clinic's PA to reduce your pressure setting?

3) What pressure setting(s) are you currently using? How well would you subjectively rate the quality of your sleep when you use the current setting? If you are still not sleeping well, can you describe the problems with your sleep? Are you having trouble falling asleep at the beginning of the night? Are you experiencing many prolonged wakes during the night? Are you waking up too early in the morning and finding yourself unable to get back to sleep? How many hours of actual sleep do you think you get each night? And how long are you lying in bed each night trying to sleep with the hose attached to your nose?

4) What was your diagnostic AHI? What is your treated AHI?
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soyjer
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Re: Confused about the goal of PAP therapy

Post by soyjer » Thu Jan 16, 2025 8:31 pm

You wrote:
To answer your question about the real risk of experimenting with lower pressures in the hopes of feeling more rested in the daytime, we need more data from you:

1) What were your symptoms that led to the sleep test that diagnosed you with AHI in the first place? Has there been any improvement on any of these symptoms since starting CPAP therapy?

2) What was the first pressure setting(s) they had you use? Did you have a titration study to determine the initial pressure setting? What problems did you report with the initial pressure setting that led the sleep clinic's PA to reduce your pressure setting?

3) What pressure setting(s) are you currently using? How well would you subjectively rate the quality of your sleep when you use the current setting? If you are still not sleeping well, can you describe the problems with your sleep? Are you having trouble falling asleep at the beginning of the night? Are you experiencing many prolonged wakes during the night? Are you waking up too early in the morning and finding yourself unable to get back to sleep? How many hours of actual sleep do you think you get each night? And how long are you lying in bed each night trying to sleep with the hose attached to your nose?

4) What was your diagnostic AHI? What is your treated AHI?
-----------------
I wrote:
I had mentioned to my cardiologist that I didn't sleep well, and he referred me to the sleep study center.
The only 100% definite benefit that I can attest to is that, for some reason, I don't have to pee every 2 hours while under therapy. That alone is a big benefit to me.

IMHO, all of the following sleep study results should be taken with a grain of salt, but:
My first sleep study was CPAP then BIPAP S/T, with AHI of 49, which reduced to 8 on the BIPAP S/T, so I used a Dreamstation BIPAP S/T for a while, and found that 10/14 were comfortable for me, but then they asked me if I would like to try and ASV machine, and I said yes, so I then did an ASV sleep study, which lowered my AHI even more, so now I have an AirCurve 10 ASV.
Initially, my pressures on the AirCurve 10 ASV were 8/15/5/15 (AirCurve is actually only capable of 25, not 30), and they wouldn't change them during the first 90 days, so I achieved most of my >4-Hour days by using it while I was awake watching television in the afternoon, because sleeping with those high pressures just wasn't possible, and there is something about the way I breathe (too shallow?) that seems to trigger the AirCurve up to maximum pressure even when I am awake and breathing normally (for me, anyway).
After the 90 days were over, I was then able to convince them to lower my pressures to 8/10/3/8, but being pounded with 18 every time my breathing doesn't perfectly satisfy Resmed's algorithm still wakes me up too often. Perhaps I should have kept the BIPAP S/T machine, but I think that I could get this ASV machine to work for me if I were able to adjust the pressures by myself, which I can't because if I do they will probably terminate me as a patient and take my machine away from me.
The problem between myself and the sleep center is that I want to be able to use trial and error to find a sweet spot balance between subjective good sleep and AHI and Oscar waveforms, but they are reluctant to do that... maybe out of fear of malpractice lawsuits, and also they just don't have the time to deal with the trial and error process.
As far as my knowledge of PAP therapy and equipment, I seem to know more about it than my sleep center does. They are like robots on autopilot who have been trained wrong and so just keep doing the wrong thing every day.
One example would be when I went in to test out a new mask type under pressure, and the technician set the machine to ASV mode, to match my ASV settings. I had to explain to her that I needed CPAP mode with a steady pressure of 18, because the only way I would be able to get even a semi-steady IPAP pressure of 18 in ASV mode would be for me to hold my breath for the entire session.
Another example would be when I brought my machine in for my 60-day evaluation, and they put their SD card in it and concluded that I was only 66% compliant, when in fact I was 98% compliant. I explained to them that they just needed to look at the front panel display on the Dreamstation because it displays the # of days greater than 4 hours right there, or I could leave the machine with them for a few hours so that they could try again with their SD card. They called me back a couple hours later and said "you were right, you are 98% compliant... we just didn't leave the SD card in the machine long enough", which really doesn't make a whole lot of sense... They do this all day everyday for many many patients...why would they put the SD card in and then yank it out immediately before it has been read? Or maybe they took somebody else's SD card off the table and read it instead of reading mine, I don't know.

At this point I just put the mask on at bedtime and then I usually wake up after about 4 hours can't get back to sleep, so I just remove the mask so that at least my data will be mostly when I'm asleep instead of just lying there awake for hours.

Because they hold the purse strings, I have to go along with the program as dictated by them, and the reason I posted my question was because I was wondering how dangerous it really is to use the trial and error method to find that sweet spot between a subjective good night's sleep and good AHI and Oscar data.

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soyjer
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Re: Confused about the goal of PAP therapy

Post by soyjer » Fri Jan 17, 2025 10:00 am

You wrote:
Back in 2010, my first sleep doc's office was only interested in #2: Get the AHI below 5.0. I did have a PA who worked with me for several months because my AHI was consistently below 2.5, but my insomnia exploded immediately upon starting CPAP because I was over titrated and it triggered severe aerophagia and severe insomnia. By two weeks into therapy I was sleeping no more than about 3 hours a night (even though I was using the machine for about 6 hours a night), and I was severely sleep deprived to the point where I simply could not function. Eventually the PA was literally ordered to fire me as a patient because I was taking up too much time "getting better".

I wrote:
Your experience above mirrors my experience currently, except that I haven't been fired as a patient yet.
My PA was willing to lower my pressure once by 2 cm based solely upon reading my data remotely and making the change remotely, which actually lowered my AHI from about 3 down to about 2, but a month later when I asked her to lower it another 2 cm because the latest change caused the AHI to lower even further down to about 1.5, she insisted on my coming in for an appointment before she would even consider making the change, and her earliest appointment is 3 months from now.

After giving this subject further thought, I think I may have figured out why my PA is so reluctant to lower my pressure further. The best way to see this is to imagine that instead of PAP therapy we are talking about blood pressure medication.
For the sake of this discussion let's assume that there is only one blood pressure medication available and the only variable is the dosage:
As a PATIENT experiencing intolerable side effects from the blood pressure medication, I am willing to risk my life by lowering my dosage even possibly below the safe level TEMPORARILY, in order to try to find the sweet spot where my side effects are minimized and yet I am still receiving a safe dosage that still treats my blood pressure properly.
But from the DOCTOR'S perspective, if I die during that temporary time period that my PRESCRIBED dosage is possibly below the safe level, he will be accused of malpractice, whereas if I stop taking my blood pressure medication because of the intolerable side effects of the higher dosage, he is much less likely to be accused of malpractice for that...the doctor could just say "I explained to Jerry that he needed to take the full prescribed dosage regardless of the side effects, and Jerry, against doctor's orders, refused to do that".
For the doctor, "minimal safe dosage", because it is so close to sub-"minimal safe dosage", is a risky place to hang out...to be avoided.

For the sleep doctor or PA, "minimal safe pressure", because it is so close to sub-"minimal safe pressure", is a risky place to hang out...to be avoided, and that is why having a PAP patient just refuse to use their equipment because of the side effects is SAFER for the sleep doctor or PA than risking entering the sub-"minimal safe pressure" zone in an attempt to find that perfect sweet spot with maximum comfort and minimum AHi, etc.

I'm not saying that these doctors or PA's are necessarily motivated purely out of self-interest, because IN THEIR MINDS keeping the patient out of the sub-"minimal safe pressure" zone at all times is just good sound medical practice and the best thing for the patient.

I ran into the same issue during my ASV sleep study.
The OmniLab Advanced+ machine was set up for maximum pressures, and no matter how hard I tried to breathe evenly and regularly to train the machine, it seemed to just stay on maximum pressures all the time (25 cm).
I went in for my sleep study in a sleep deprived state, but the machine was pounding me so hard that I couldn't get to sleep for the first 4 hours, so I took a sleeping pill and then the technician said I did fall asleep sometime during the next 3 hours, at which point the technician kicked me out at about 5:00 a.m. because the sleep study was supposedly over.
During the first 4 hours, I kept asking the sleep technician to lower the pressure so that I could get to sleep, because it is supposed to be a "sleep study" not an "awake study", but he had obviously been told not to change the settings during the night.
Since then, while testing out a new mask, I have had the chance to use a different OmniLab Advanced+ set up with the same ASV mode and settings as during the sleep study, and it behaved completely differently. As long as I breathed normally, it kept me at relatively low comfortable pressures, and then if I held my breath for > ~10 seconds it would increase the pressures up to 20-25 cm, and then when I started breathing normally again it would very quickly reduce the pressures back to the comfortable lower levels. I tried this several times and it worked every time, which is how an ASV should behave. I don't know what the problem was with the sleep study OmniLab Advanced + machine... It's hard to believe that a technician that does this all night every night could possibly get the settings screwed up, so it's a mystery to me.

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Re: Confused about the goal of PAP therapy

Post by robysue1 » Fri Jan 17, 2025 7:01 pm

soyjer wrote:
Thu Jan 16, 2025 8:31 pm
-----------------
I wrote:
I had mentioned to my cardiologist that I didn't sleep well, and he referred me to the sleep study center.
The only 100% definite benefit that I can attest to is that, for some reason, I don't have to pee every 2 hours while under therapy. That alone is a big benefit to me.
Don't minimize that particular benefit. Sometimes when we're struggling, it's important to not lose sight over the small, but personally significant, things that are improvements.

In my case: the first (and main) improvement I saw with PAP therapy was waking up without hand and foot pain every single morning. Before CPAP? I'd wake up and tell my husband that it felt like I'd been sleeping with my hands and feet in fists all night long. Sometimes I would actually have to pry my fingers out of a fist. About 6 months into PAPing, that pain started to disappear and by 9 months I was never waking up with that pain, even though I was still not sleeping very well or very long each night. In the past 15 years, that's become my main goal with PAPing: I know using it means I'll wake up without hand and foot pain, no matter how badly I sleep otherwise. Now I also know that overall I'm sleeping better than I was back in 2010 when I had my first sleep test done, and I know that my nightly use of the machine is most likely doing good things for my heart and my body, but the real reason I keep putting that mask on every night is I don't want to wake up with that hand and foot pain again.
IMHO, all of the following sleep study results should be taken with a grain of salt, but:
My first sleep study was CPAP then BIPAP S/T, with AHI of 49, which reduced to 8 on the BIPAP S/T, so I used a Dreamstation BIPAP S/T for a while, and found that 10/14 were comfortable for me, but then they asked me if I would like to try and ASV machine, and I said yes, so I then did an ASV sleep study, which lowered my AHI even more, so now I have an AirCurve 10 ASV.
So you were diagnosed with severe sleep apnea. Any idea if centrals were mentioned on the diagnostic study? In other words, without PAP were you having problems with CAs? This is critical information and if you don't have a copy of your diagnostic sleep study report (including the summary graphs), you need to insist on getting it from the sleep doc/center that diagnosed you with sleep apnea.
Initially, my pressures on the AirCurve 10 ASV were 8/15/5/15 (AirCurve is actually only capable of 25, not 30),
Let me know if the following is NOT correct. It sounds like your original ASV settings was this:

Min EPAP = 8 cm H2O
Max EPAP = 15 ch H20
Min PS = 5 cm H20
Max PS = 15 cm H20

Meaning that when you started the machine, your EPAP = 8cm, IPAP = 8+5 = 13 cm. And the machine could increase the EPAP all the way to 15 cm and the PS all the way to 15 cm. Meaning that if EPAP stayed at 8cm, under certain circumstances, your IPAP could increase all the way to 8+15 = 23 cm. But if the EPAP increased to anything above 10 cm, your IPAP stayed at 25 cm. (25 = 10 +15 and 25 is as high as IPAP can go.)

and they wouldn't change them during the first 90 days, so I achieved most of my >4-Hour days by using it while I was awake watching television in the afternoon, because sleeping with those high pressures just wasn't possible, and there is something about the way I breathe (too shallow?) that seems to trigger the AirCurve up to maximum pressure even when I am awake and breathing normally (for me, anyway).
Yep. Those are pretty high pressures to try to learn how to sleep with.

And yep, if you have a very shallow breathing pattern, that ASV machine thinks your breathing is unstable sleep breathing and that you're developing a CO2 undershoot/overshoot cycle, even if you're wide awake. So it increases the IPAP on every breath by bumping the PS way up from 5, possibly all the way to 15. At which point you'd be dealing with an EPAP = 8cm and IPAP = 23 = 8 + 15, with the machine thinking that the extra high IPAP will keep you breathing sufficiently deeply to prevent CAs from occurring. Rubicon used to describe this kind of thing as an ASV machine can make the breathing "look perfect" while (potentially) destroying a person's ability to sleep.

So it comes back to the question: Were CAs mentioned on your diagnostic sleep test? Since some forms of central sleep apnea can be associated with some forms of cardiac disease, I think it's really important for you to get your sleep doc and cardiologist to explain why they think you need an ASV machine rather than a simpler Resmed AirCurve 10 VAuto. There must have been something in that original sleep test combined with whatever condition your cardiologist is treating to have made someone say you needed an S/T machine instead of a simpler CPAP, APAP, or bi-level machine (i.e. a Resmed VPAP or Resmed VAuto). And whatever it was was significant enough to get your insurance to pay for the fancier S/T and then the fancier ASV machine that you now have.

I think it would help you a lot if you fully understood why your medical team put you on the S/T machine in the first place and then switched you to the ASV, rather than having you start with a simple APAP or VPAP.

After the 90 days were over, I was then able to convince them to lower my pressures to 8/10/3/8, but being pounded with 18 every time my breathing doesn't perfectly satisfy Resmed's algorithm still wakes me up too often. Perhaps I should have kept the BIPAP S/T machine, but I think that I could get this ASV machine to work for me if I were able to adjust the pressures by myself, which I can't because if I do they will probably terminate me as a patient and take my machine away from me.
The only "they" that can take the machine away from you is your insurance company. And once the machine is fully paid for, even the insurance company can't take it away. I have, however, heard rumors that some insurance companies and some Medicare Plus plans are trying to switch from "rent-to-own" contracts to "perpetual rental" contracts for certain kinds of PAP equipment. It's important that you understand all of the provisions of the contract you signed with the durable medical equipment provider that supplied you with the machine.

The doctors can, of course, fire you as a patient. Whether they would fire you for a minor pressure adjustment, particularly one that leads to you becoming a less "needy" patient is a whole different question.

The problem between myself and the sleep center is that I want to be able to use trial and error to find a sweet spot balance between subjective good sleep and AHI and Oscar waveforms, but they are reluctant to do that... maybe out of fear of malpractice lawsuits, and also they just don't have the time to deal with the trial and error process.
Yes, they don't want a malpractice lawsuit. And yes, they don't think they have time to deal with a trial and error process. I was fired as a patient by my first sleep doctor when I was taking up "too much of the PA's time" with my long, drawn out very difficult CPAP adjustment process after I had been on PAP therapy for about 9 months and was (slowly) just beginning to start to feel a bit better.
As far as my knowledge of PAP therapy and equipment, I seem to know more about it than my sleep center does. They are like robots on autopilot who have been trained wrong and so just keep doing the wrong thing every day.
Unfortunately that seems to be a common practice.
One example would be when I went in to test out a new mask type under pressure, and the technician set the machine to ASV mode, to match my ASV settings. I had to explain to her that I needed CPAP mode with a steady pressure of 18, because the only way I would be able to get even a semi-steady IPAP pressure of 18 in ASV mode would be for me to hold my breath for the entire session.
Another example would be when I brought my machine in for my 60-day evaluation, and they put their SD card in it and concluded that I was only 66% compliant, when in fact I was 98% compliant. I explained to them that they just needed to look at the front panel display on the Dreamstation because it displays the # of days greater than 4 hours right there, or I could leave the machine with them for a few hours so that they could try again with their SD card. They called me back a couple hours later and said "you were right, you are 98% compliant... we just didn't leave the SD card in the machine long enough", which really doesn't make a whole lot of sense... They do this all day everyday for many many patients...why would they put the SD card in and then yank it out immediately before it has been read? Or maybe they took somebody else's SD card off the table and read it instead of reading mine, I don't know.
These are particularly glaring examples of incompetence.

I have to ask: Is this the DME that provided the machine? Or is this the sleep center---i.e. where the sleep doc works? If the folks working directly for the sleep doctor running the sleep center are that ignorant, I'll be honest: I would give some serious though into firing the sleep center and finding a new sleep doctor to treat me.

At this point I just put the mask on at bedtime and then I usually wake up after about 4 hours can't get back to sleep, so I just remove the mask so that at least my data will be mostly when I'm asleep instead of just lying there awake for hours.
This is something that I think we on the forum might be able to help you with.

Here's my suggestion about what to do for at least a week or two: When you wake up after about 4 hours with the machine and you can't get back to sleep, just get out of bed and go into a different room. Yeah, no-one wants to do that, but your body is saying it's done with sleeping (at least for now), and there's no real point lying in bed (with or without the mask) hoping to get back to sleep. When you've gone into another room, do something fun, but relaxing. Read a book. Work a cross word. Listen to some music. At this point, I'd even say if you wanted to watch some TV or videos on a computer or your phone, don't worry about the blue light issue. Just do something fun to get your mind off of worrying about the dang ASV and why you woke up and couldn't get back to sleep. When you start to feel sleepy again (as in yawning uncontrollably) go back to bed and put the mask back on and give yourself what feels like a reasonable amount of time to try to get back to sleep. I'm willing to bet that much of the time, after you've been out of bed doing something fun for a while, once your body starts yawning, you won't have as much trouble getting back to sleep.
Because they hold the purse strings, I have to go along with the program as dictated by them, and
Again, I don't know what you mean by "they hold the purse strings". These folks are being paid by your insurance company. And you, as the patient, can choose to find a different sleep doc and a different DME if/when push comes to shove.

(In the course of my first 18 months of CPAP therapy: I was fired by Sleep Doc #1 as a patient, but fired sleep docs #2 and #3 because I did not like their lack of respect for me during our meetings. Sleep doc #4 was a godsend, and I'm still sad he retired during the pandemic. Sleep doc #5 is "ok", but that's because I know what I'm doing and things are running smoothly now that I'm years into CPAP therapy.)
the reason I posted my question was because I was wondering how dangerous it really is to use the trial and error method to find that sweet spot between a subjective good night's sleep and good AHI and Oscar data.
That's just it: It's not dangerous to use trial and error to figure out the sweet spot that gives you both a decent night's sleep and a good AHI. It sounds, however, like your sleep center is NOT listening to you when you say you cannot sleep with current settings all night long.

In other words, it seems to me that it is far more dangerous to just give up and sleep half the night without the machine--because you can't get back to sleep with the machine after you wake up four hours into the night than it is to do some intentional experimenting with the settings.
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Re: Confused about the goal of PAP therapy

Post by D.H. » Fri Jan 17, 2025 8:08 pm

soyjer wrote:
Thu Jan 16, 2025 5:06 am
. . .

If death from apnea is extremely rare, ... ?

. . .
If you mean acute death from an Apnic episode, this is extremely rare (but not unknown).

However, Sleep Apnea can cause cardio-vascular issues, diabetes, and a host of other health issues that can impact your longevity and/or quality of life.

The exhaustion from Sleep Apnea also increases the risk of an industrial, household, or vehicular accident.

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Re: Confused about the goal of PAP therapy

Post by soyjer » Sat Jan 18, 2025 12:11 am

Both studies say severe central and severe obstructive apnea.

I'm not inclined to ask for graph data or ask why the ASV because I don't want to alienate them. All doctors SHOULD be competent, ego-free, and tolerate questioning, but often they are not, and certainly THIS one is not.

At this point, I'm not there for their advice or expertise, I am just there so that I can keep my machine and continue getting supplies for free. I'm on original Medicare with a Supplement (Medigap) policy.

I'm hopeful that eventually I can get them to lower my IPAP max pressure again by 2 cm. If not, I might just adjust pressures and mode without their permission and hope that they don't notice.
I suppose that ideally I could switch to a doctor who had time to work with me closely, but in my small town that just isn't an option, and even hiring a respiratory therapist out of pocket won't help because the therapist couldn't change the pressures against the doctors orders any more than I can without my losing everything for not following doctor's orders.
When my 15 months have passed, and I then OWN the machine, THEN I could afford to adjust the pressures any way I want, without fear of losing my machine.

Interesting paragraph regarding shallow breathing pattern. I knew that the ASV algorithm MIGHT give me problems, but wanted the OPTION of ASV, and figured I could later switch to CPAP or “almost BIPAP”, if necessary, using the same AirCurve 10 ASV.

BTW, you might find this interesting:
https://myapnea.org/forum/resmed-s-half ... al-science

As far as incompetence and/or ignorance, I am talking about the sleep doctor’s sleep center, but the DME is equally so.
I agree with all of your advice. At the moment, the reason that I don't put the mask on after the ~4 hours is because I am trying to heal up my face from past damage done by Airfit F30i. I love that mask, but not when tightened up enough to withstand 18cm. I now have an AirTouch F20, but while it's not necessarily better…I’m not sure yet…at least it's DIFFERENT, giving my face a chance to heal.

BTW…if only 4 hours of use per night isn't bad enough…I have my ramp time set to 45 minutes, and I press it as often as I can 😬, so your paragraphs makes sense:

“...it seems to me that it is far more dangerous to just give up and sleep half the night without the machine--because you can't get back to sleep with the machine after you wake up four hours into the night than it is to do some intentional experimenting with the settings.
Sleep Apnea can cause cardio-vascular issues, diabetes, and a host of other health issues that can impact your longevity and/or quality of life. The exhaustion from Sleep Apnea also increases the risk of an industrial, household, or vehicular accident.”

I'm inclined to agree…I am pretty sure that, if they won't lower my pressures anymore experimentally, I will then just wait until they have hopefully forgotten about me, and then try some changes on my own. I study patients’ testimony a lot, and use OSCAR.
My next Medicare required progress appointment is about 1 year from now, so I will just restore to their last settings a month or so before that.

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Re: Confused about the goal of PAP therapy

Post by robysue1 » Sun Jan 19, 2025 9:25 am

soyjer wrote:
Sat Jan 18, 2025 12:11 am
Both studies say severe central and severe obstructive apnea.
That means that you've got a complicated case. It also does mean the ASV is the considered the machine you need for treating your severe central apnea along with your severe obstructive apnea.

Unfortunately a whole lot of sleep docs (like a whole lot of docs in general) don't particularly do a good job of treating the complex cases. (Heck, many sleep docs don't even do a good job of treating plain vanilla obstructive sleep apnea if/when the patient has trouble adapting to PAP therapy.) You might want to give some serious consideration to finding a better sleep doctor even if it means driving some distance. Once you have learned how to sleep well with your machine, its quite common to only have one follow-up a year as long as the AHI is in good shape and you think you're sleeping well. The idea is that the doctor's office expects you to call them if you need help if something goes wrong between those annual visits.
At this point, I'm not there for their advice or expertise, I am just there so that I can keep my machine and continue getting supplies for free. I'm on original Medicare with a Supplement (Medigap) policy.
You may need to spend some time talking with Medicare and your Medigap policy company about what their requirements are for continuing to pay for your equipment and who is responsible for providing them with the data they need.
When my 15 months have passed, and I then OWN the machine, THEN I could afford to adjust the pressures any way I want, without fear of losing my machine.
How much more time will it be before you own the machine outright?
My next Medicare required progress appointment is about 1 year from now, so I will just restore to their last settings a month or so before that.
If you are already passed your "compliance period" and don't need another required progress appointment for a full year, then you might very well considered just telling this idiot of a doctor the new settings seem to be "ok" and that you will see them in a year or so as long as your AHI remains below 5.0. In a year or so, they will have most likely forgotten what your settings were and only look at the AHI data. And if that looks good, they're not likely to ask about the settings.

In other words, if I were you, I'd just lower the IPAP max pressure a bit and see if that helps with sleeping more consistently with the machine. If your treated AHI skyrockets at the lower pressure, you can always bump it back up after your body has become a bit more used to sleeping with the dang machine and its ASV algorithm that seems to kick in while you're still awake.
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Re: Confused about the goal of PAP therapy

Post by soyjer » Sun Jan 19, 2025 11:14 am

robysue1 wrote:
Sun Jan 19, 2025 9:25 am
soyjer wrote:
Sat Jan 18, 2025 12:11 am
Both studies say severe central and severe obstructive apnea.
That means that you've got a complicated case. It also does mean the ASV is the considered the machine you need for treating your severe central apnea along with your severe obstructive apnea.
Yes, assuming that the ASV sleep study wasn't just reacting to my shallow breathing, of course. I read all of Rubicon's posts with the word "shallow" in them, and will join that after I have had time to study it all and play with my pressures, etc.

The strange thing about the whole sleep doctor concept is that, for it to actually work, the doctor would have to have the time and inclination to actually study the patient's waveforms after each pressure tweak, and no insurance is going to be willing pay for that, so instead the sleep center relies on summary data (AHI, etc.) generated by the machine, so the machine becomes the REAL sleep doctor (except that the machine can't listen to the patient's subjective sleep experience), and at this point I have more confidence in MY conclusions from my waveforms than I do in my machine's, because the machine doesn't know if I am awake or asleep during these supposed apnea events, whether I am yawning, intentionally holding my breath, shallow breathing, fiddling with my mask, just got a new mask, etc., etc., and it also assumes that at the end of my ramp time that I am then asleep.

This whole process is so ridiculous that it reminds me of bathroom graffiti instructions next to the electric hand blow dryer:
1.) Push start button
2.) Rub hands together under air nozzle
3.) Wipe hands on pants


Pressure increases seem to be triggered by my shallow breathing?:

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Re: Confused about the goal of PAP therapy

Post by robysue1 » Mon Jan 20, 2025 2:09 pm

soyjer wrote:
Sun Jan 19, 2025 11:14 am
Yes, assuming that the ASV sleep study wasn't just reacting to my shallow breathing, of course.
You don't get a diagnosis of severe central apnea based on an ASV study. You get a diagnoses of central sleep apnea based on a diagnostic study (no PAP of any kind) or of treatment emergent central sleep apnea based on what occurs when using a regular CPAP/APAP or what happens during a regular CPAP/APAP titration study.

In other words, the average sleep clinic doesn't just do an ASV sleep study out of the blue: To get a patient's insurance to pay for the study, there has to be a documented history (somewhere) of a problem with central sleep apnea.

Having said that, I will add: There is a correlation between central sleep apnea (CSA) and something called Cheyne-Stokes respiration (CSR) and certain forms of heart disease. Have you told your cardiologist about the difficulties you are having with the sleep doc and the sleep clinic taking your adjustment problems to ASV therapy seriously?

I read all of Rubicon's posts with the word "shallow" in them, and will join that after I have had time to study it all and play with my pressures, etc.
Rubicon has a lot of useful information about ASV machines. He knows his stuff (he's a retired sleep tech, if I recall correctly), and he knows that ASV machines can work wonders for certain people, but he also understands their real limitations, including the fact that they can be very aggressive in increasing IPAP pressure (through increasing PS) in response to "shallow" breathing, and that the aggressive algorithm can cause problems for a lot of people.
The strange thing about the whole sleep doctor concept is that, for it to actually work, the doctor would have to have the time and inclination to actually study the patient's waveforms after each pressure tweak, and no insurance is going to be willing pay for that, so instead the sleep center relies on summary data (AHI, etc.) generated by the machine, so the machine becomes the REAL sleep doctor (except that the machine can't listen to the patient's subjective sleep experience), and at this point I have more confidence in MY conclusions from my waveforms than I do in my machine's, because the machine doesn't know if I am awake or asleep during these supposed apnea events, whether I am yawning, intentionally holding my breath, shallow breathing, fiddling with my mask, just got a new mask, etc., etc., and it also assumes that at the end of my ramp time that I am then asleep.
All of this is indeed true to some extent, even for people who are not on ASVs, but who have trouble sleeping with their dang machine.

And it is frustrating when you're handed a machine and told, "This machine will fix your sleep problems", and instead of fixing them, it seems like your already fragile sleep falls completely apart. And you know when you look at the data, what you're seeing is massive evidence that you're never really getting into a nice sound sleep for what seems like a full sleep cycle, but the PA in the sleep doc's office just keeps saying, "Your AHI is nice and low. You just need to try harder to get to sleep sooner with the machine."
Pressure increases seem to be triggered by my shallow breathing?:
This is why I wish Rubicon were still posting here. You really could use someone eyeballing your data who really understands the ASV algorithm.

My own very limited (and NON-PROFESSIONAL) understanding of the ASV algorithm is that as long as the breathing remains shallow, the machine is going to continue increasing the PS (and IPAP), but not EPAP, in an effort to create sufficiently deep breaths to meet some kind of a target value for the minute ventilation or tidal volume of the inhalations. Once the inhalations are deep enough to meet that target value, the machine starts to back off on the PS (and IPAP) to see if the patient's breathing remains deep enough to keep them properly ventilated. But all of this presumes that the patient is asleep with using the dang machine. And you're still struggling to get and stay asleep while using the machine, in part because the machine is responding to your wake breathing in ways that keep you awake longer.

Now whether all that additional pressure further suppresses the respiration and makes the breathing even shallower? That's well above my pay-grade as a non-professional who happens to be an experienced patient when it comes to insomnia and CPAP/APAP/VPAP, but no personal experience with ASV machines.

You might want to edit the title of the thread and put ASV somewhere in the title to see if you might attract someone who uses these machines and get some help from them.
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Re: Confused about the goal of PAP therapy

Post by soyjer » Mon Jan 20, 2025 4:20 pm

robysue1 wrote:
Mon Jan 20, 2025 2:09 pm
soyjer wrote:
Sun Jan 19, 2025 11:14 am
Have you told your cardiologist about the difficulties you are having with the sleep doc and the sleep clinic taking your adjustment problems to ASV therapy seriously?
I asked my referring cardiologist who the final authority was, and he said that he always defers to the sleep doctor's expertise.
...I wish Rubicon were still posting here. You really could use someone eyeballing your data who really understands the ASV algorithm.
I'm going to show my waveforms to my PA, and then also compare them to others' posted waveforms here on the forum. Lots of studying to do.
Now whether all that additional pressure further suppresses the respiration and makes the breathing even shallower?
Yep... another thing to consider, for sure.

Thanks for your help. Luckily I'm retired, so I have the free time to be able to study all this...what a nightmare it must be for people who aren't retired...I feel for them.

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