Same settings on diff. paps - different outcome - any ideas?

ozij wrote: ↑

Tue Mar 28, 2023 11:04 pm

Andréa wrote: ↑

Sun Mar 26, 2023 8:49 am

I tried both my machines at the same settings Auto 5.6/7 no EPR and Lumis ipap 7 epap 5.6 - and the outcome is quite different,

Those are not even faintly the same settings.

You set up the Auto to vary the pressure is supplies between a minimum of 5.6 and maximum of 7. In addition, you set it up to supply the same pressure regardless of to whether you're inhaling or exhaling: no Exhale Pressure Relief.
You set up the bi-level machine to supply a constant Inhale Positive Air Pressure of 7, and a constant Exhale Positive Air Pressure of 5.6. It is to be expected the results will be different.

The chart you posted indicates your pressure is too low and your breathing disturbances are undertreated. The Hypopneas seem to pop up in batches about ever 90 minutes - which makes me think you're breathing is much worse when you slip into REM sleep. That means you may benefit from a setting the raises your pressure when your breathing starts obstructing, and drops it when that's not necessar: i.e. some kind of automatic pressure adjustment.

If you want to understand the differences in results, please post some nights on the APAP - both at the lower pressures, and the higher ones.
And, if you logged the info, tell us how you felt after that specific night.

Oh my, thanks for taking time to answer my question although I'm so far off I'm blushing when reading your "Those are not even faintly the same settings." My brainfog is no joke and I'm so sad that my former, actually quite well functioning, brain has come to this level of pure stupidity since getting sick. Of course they are not even close. Don't know wether to laugh or cry - I do a bit of both. God, I miss my old self... I totally understand your explanation.

I have so much more crap happening i what I also believe is REM. First couple of hours are usually ok. A huge problem is that if i raise the pressure, I don't sleep at all because the pressure disturbs me and wakes me up, if I'm not on some stronger sleeping pill, and with lower pressure I probably have more micro awakenings that I'm not aware of - so I'll have to chose between these to types of poor sleep, is my therory. Thinking that which ever makes me fell less shitty in the daytime would be the right choice between two not optimal choices.

Posting a couple of nights with a bit diff. settings. I'm so fed up with trying to analyze this with my no good brain. The only thing I know for sure is that if the data show median pressure over 8 for longer periods I wake up dead, non functioning. That and as I described in the original post, I tend to feel better when feeling I haven't slept for longer times. It's so strange. This night, I slept barely three hours, but felt much more alert than if I slept a full night. It's like My body hates both to have untreated OSA and treated, but in different ways. When I got my pap, all crazy sleep disturbances, except insomnia, vanished within a week, and my anxiety levels and many other sleep deprivation symptoms declined enormously or went away. I don't know if you can make anything out of my images.

How much should one care about FL? When my flow rate i stable and I seem to have longer periods of sleep, I also often have quite a bit o FL.

https://imgur.com/a/IyYSsUJ

ozij wrote: ↑

Wed Mar 29, 2023 8:39 pm

robysue1 wrote: ↑

Wed Mar 29, 2023 12:38 pm

One possible hypothesis for why you might feel better on the Lumis: Your body is so sensitive to the changing pressures on the AutoSet that your sleep is just simply more fragmented with spontaneous arousals when you use that machine. In that case, you might do much better using the Lumis in S mode with EPAP = 7cm and IPAP = 9cm.

My best guess is that you feel better when the numbers look worse because other than the under-treated OSA, your overall sleep quality is somehow better. My hypothesis would be you are among the group of PAPers who do better on fixed pressure simply because the auto adjusting pressure algorithm itself triggers some spontaneous arousals.

Try bumping up the EPAP to 7cm (which is where you other data indicates it needs to be) and your IPAP = 9cm on the Lumis while running in S mode. That might give you better AHI numbers, a smoother flow rate curve (i.e. less flow limitation) and still give you better sleep than you were getting on the AutoSet.

Adnrea wrote: - Is it possible to also have UARS that fragments my sleep, but doesn't show up bc i wake before any FL och desats happen? Don't know what to do about that anyway as the treatment is pap...

[On my diagnostic test, the vast majority of my events were scored as something called "Hypopneas with arousal", which basically meant that, yes, I was arousing before the O2 desats happened. And yes, the treatment is still PAP.

So the question comes back to learning how to sleep well with the PAP machine. And for some folks, that's a steeper hill than it is for others.

Andrea wrote:Wish I could be sedated every night .

In all seriousness, it might be a decent idea to try something like Ambien or Belsomra or some other prescription sleep aid for a while. In my case, my sleep quality with PAP started to improve after I did some pretty hard CBT-I to work on "consolidating" my sleep cycles. But further improvement was only achieved after using Belsomra for about a year or two pre-pandemic.

I agree with all of the above - though I would wait with adding with adding sedation till I had tried the Lumis on EPAP=7 IPAP=9 for two weeks.

I've read everything you wrote, both of you. I'm have to little energy right now to answer your questions in a structured quote manner (that although I worked as a web design teacher for a couple of years and one would think at least som of the basic programming skills would have been intact, but no...). I'm touched by your help, engagement and thoughts on me trying to find "the magic bullet" within my data. I believe exactly as Rubysue1 says, I have to work on my sleep quality. I have sleep meds, Zopiklone, but are allowed to take them only every third night to avoid getting "hooked", and I believe I would need to take them every night for a longer period, a couple of months, to retrain my body back to sleep, after years of insomnia. The nights with and without Zopiklone are like night and day.

Yesterday I found out that I have arteriosclerosis as someone being 65, I'm 46. But the dr. didn't think it was because of my years with untreated OSA, although the huge amount of stress that puts on the body. I don't agree with him on this. I come from a family with no heart-issues, i don't smoke, I eat healthy and up until i got sick in ME/Cfs 7 yrs ago I was in good condition. But no, a 65 yo - and I can't exercise at all due to my condition. I can't grasp what my life became, it's too surreal (I'm not depressed - just furious that I not got taken seriously when getting ill, getting worse and worse, begging the drs to check for SA, got even worse, got my ME/Cfs dx, then I finally met a sane dr, five yrs into this shit show of neglect and she referred me so that I got to do a home sleep study. It came back with severe SA at an AHI of 40 and lowest sat. at around 80. As I didn't have an polysomography done I don't know about sleep quality.

I will try Bi-level settings att Lumis 100 ST at mode S Ipap 9, EPAP 7 - as you recommended. Thanks for having my back even though I might dig for diamonds at the wrong place. Every tiny % I might get a bit better is a huge thing in my life, and as I have gotten so sick from having too high settings and also when I tried using the n30i mask with the Quiet air filter - i know that my body reacts strongly to what often seem to not be an issue for most, but well that's my life with ME. Being outside the box and norm all the time. I hate it, but I'll just have to accept being outside norm and usual reference group. Drs have a saying, taught in med. school: "If you here hooves, expect horses" - but sometimes it could be a zebra, and I became one of those.

Regarding my underlying conditions, they are, according to my drs as well treated as they possibly could be. Needless to say I'm not impressed with the health care in Sweden regarding my diagnoses, the knowledge is poor, not to mention the interest which is often non existing. We have one clinic in Sweden specializing in ME/Cfs and that's where I got diagnosed, but they have more patients than they can handle and the continuity and follow ups are not good, not to say quite pointless sometimes. The meeting time is used up by the dr reading the latest journal note, to update himself, then you have ten minutes to bring up 50 equally important and urgent questions. The knowledge/interest of EDS is about the same level, a bit better. I've put countless hours, weeks into contacting the few specialists we have, but they are always fully booked, doesn't take new patients etc. We have a well known sleep specialist who I reached out to, got av very sweet answer but a no, he didn't see patients outside of Gothenburg. So, it's a steep mountain to climb, slippery to say the least

Interested in your sleep medication Rubysue1 - you took it every night for a longer period - how did it go when tapering off? I really have to convince my dr. to make a better plan getting my sleep back. My sleep hygien is as good as it can be regarding my situation.

I've probably not answered to half of your questions but I hope some, to tired to go through, have so much trouble just writing in english atm.

Again, thanks a million times for your patients and input. I value it highly.

Now of to sleep, or at least bed
//Andréa

Andrea, I believe your flow limitations, as such are negligible. For most of the night, 95% of it, they are at .03 or less.

But In Auto mode, Resmed raises the pressure when it runs into flow limitation, and if you look at your chart, your flow limitations occur after the pressure drops.
Take the OSCAR cursor, put it on those places where the pressure peaks, ask you yourself what the pressure was just before that, and what drove it up.
For some people, it's pressure fluctuations wake them up.

Your trial of the Lumis with EPAP at 5.6 has shown us that's really no good for you, but EPR=3, minimum pressure 7 gets you, intermittently, even lower than that. The way things are set up now, when the machines thinks an inhale pressure of 7 is enough, your exhale pressure goes all the way down to 4 when you exhale. 4 is atmospheric pressure - too low for you.
If this were my data, and if I was using the AS10, I'd do the following:
I'd start with making EPR=2, both because of what we know from the Lumis, and because, according to Lanky Lefty, EPR sometimes doesn't respond fast enough to when the exhalation ends. In the beginning You may feel a difference in the effort necessary to exhale but see if you can tolerate it.
Keep it like that for some nights and see if it makes a difference both to how you feel, and to how many pressure changes you encounter, and also, check what happens to your median pressure: that's the pressure you are at, or below, for 50% of the night. It's possible that without flow limitations driving the pressure up, you'll be spending longer at a lower maximum pressure.

If changing the EPR has you sleeping better - see what happens if you set it to 1 - at EPR=1 your exhale pressure will never go below 6. It's possible that without flow limitations driving the pressure up, you'll be spending longer at a lower maximum pressure.

If changing the EPR doesn't help (but does not harm) you could also try to change it to 1, or (depending on you comfort) you could leave it at 2, and start raising your minimum pressure. Go about it as slowly as necessary, and do it systematically, start with adding nor more than 0.2 at a time and seeing how you tolerate it.

I'm a person who doesn't sleep well at all on Auto mode - even when I set it a 1 cm H2O difference between min. and max. You may find you do better at constant pressure, (Min=Max) or, as was suggested above, on the Lumis, with a constant IPAP of 9 and EPAP of 7.

Andréa wrote: ↑

Fri Mar 31, 2023 1:54 pm

Interested in your sleep medication Rubysue1 - you took it every night for a longer period - how did it go when tapering off? I really have to convince my dr. to make a better plan getting my sleep back. My sleep hygien is as good as it can be regarding my situation.

When I ran out of Belsomra early in the Covid pandemic and doctors in NY were only seeing small handfuls of patients with dire medical needs (and lots of hoops to jump through), I just stopped cold turkey. Because I had no more Belsomra pills to take.

I was very surprised that I had no serious rebound insomnia. But then Belsomra works very differently than Ambien and most other prescription sleep meds: Belsomra doesn't increase drowsiness; it turns off "wake". Most sleep meds increase drowsiness and don't do anything to turn off "wake".

At any rate, by the time I stopped taking the Belsomra, my body had finally figured out how to fall asleep and (mostly) stay asleep as long as I am sleeping in my usual, "normal for me" sleep time, which is typically with a bedtime between 1:30 and 2:30 and a wake time around 8:30 or 9:00.

I'm currently on vacation. Will write more when I get back to Buffalo.

robysue1 wrote: ↑

Sat Apr 01, 2023 8:03 am

Andréa wrote: ↑

Fri Mar 31, 2023 1:54 pm

Interested in your sleep medication Rubysue1 - you took it every night for a longer period - how did it go when tapering off? I really have to convince my dr. to make a better plan getting my sleep back. My sleep hygien is as good as it can be regarding my situation.

When I ran out of Belsomra early in the Covid pandemic and doctors in NY were only seeing small handfuls of patients with dire medical needs (and lots of hoops to jump through), I just stopped cold turkey. Because I had no more Belsomra pills to take.

I was very surprised that I had no serious rebound insomnia. But then Belsomra works very differently than Ambien and most other prescription sleep meds: Belsomra doesn't increase drowsiness; it turns off "wake". Most sleep meds increase drowsiness and don't do anything to turn off "wake".

At any rate, by the time I stopped taking the Belsomra, my body had finally figured out how to fall asleep and (mostly) stay asleep as long as I am sleeping in my usual, "normal for me" sleep time, which is typically with a bedtime between 1:30 and 2:30 and a wake time around 8:30 or 9:00.

I'm currently on vacation. Will write more when I get back to Buffalo.

I'll read up about Belsomra, thanks for replying yet you're on vacay. Looking forward to hearing more of how you got your sleep fixed.

Best regards
//Andréa