1st day Newbie - gratitude and a bit of guidance if possible - thanks!

Dear Pugsy and Miss Emerita,

These are helpful tips.

Given I just started this and have a follow-up in person visit with the sleep tech in 4 days, I'm not going to reset the machine, as that would purge my data from my first 3 nights (the two I've shared, and last night which is still not being provided on the card/by the machine).

This means I can really only make changes every two nights, as I will always only be able to see data the day after the day after a sleep.

Last night I had a pretty great sleep: 7hrs45min approx with only a few cycles of sleep-onset awakenings at the start and halfway through the night. So, I'll leave the settings as-is for tonight (night 4), then tomorrow I will be able to get my data for night 3 (last night).

If that's showing no change, I'll tinker as you suggest.

Interestingly, when I took the time right now to spread out the flow rate data, I noticed I basically have three kinds of pattern during my sleeps:
(A) apneic or hypopneic episodes (usually "clear airway") followed by big rates that peter out and go flat/apnea with another burst of big rate breathing and so on, (B) some oscillating pattern (kind of like Cheyne-Stokes but not detected by the machine as such - slowly increasing rates then a brief plateau, then slowly decreasing): and

(C) steady-state - i.e. what appears to be normal breathing: At first I thought (B - oscillating) was only a transition between (A - apneic cycles) and (C - normal), but then found a bunch of places where the oscillating pattern (B) just appeared after a period of steady state (C). Here's an example of that exact phenomenon. Oh! It looks like I'm maxed at 3 pics per post. I will reply to myself in a second with that pic.

Aaaaand here's the pic of steady state turning into oscillating:

I'm not sure what all this means, but those seem to be the three dominant patterns.

If tomorrow I see that night 3 is not much different than night 2, I'll try dropping the minimum pressure to 11 and hope I don't have "truckloads" of sleep onset apneas (which are yucky for sure).

And if after a couple of days there is still not much change - lots of CAs - then I'll try turning the RPE "on".

Also, I will keep trying to get a hold of my sleep doc and tech. (Just hit lots of voicemail today.)

Thanks very much CPAPtalk community!

- parasomniac

Welcome to the forum.
I made brownies--low calorie because I cut them into small-ish pieces.

Howdy,

Okay, it seems like I'm making progress.

Below is my screenshot from Night 3 - which had a bit of sleep-onset awakening cycles at the beginning and after trying to get back to sleep halfway through the night. Pressure 13-16 and no EPR. Overall, had a pretty good sleep - 7hrs 45 min I believe it total.
I kept those same settings in place for last night (night 4). I had a rough night last night - sleep onset apnea made me really wake up, so I was late finally falling asleep and then had to wake up early for an appt. So probably only had 5 hrs sleep - but that's a throw-away night in my opinion.

But Night 3: AHI down to 7 from 20 (where it had been for my first 2 nights). I didn't expect such a big change.

Thoughts? Should I stay as is? Should I try to wean down to pressure range of 11-16 (from 13-16)? Or should I activate the escape pressure?

Thanks very much!!

Parasomniac

Hi CPAPTalk Community,

Okay, I'm now over 1 week into CPAP therapy. I've got a question about what to do next.

Recap: I'm a lean tall guy with apparent OSA on a Level 3 study. I started CPAP and had "truckloads" of sleep-onset apneas (clear airway). That's when I found CPAPTalk and learned how to up my settings from the original (9-16) up to 13-16 (after a few days), with improvement. I then started titrating down to 11-16 with AHI improving to approx. 7-8 (device measurement). I had two main issues:
(a) still a lot of apneic episodes labelled by the machine as "clear airway", and
(b) sometimes waking from sleep due to "mask farts" - i.e. abrupt blasts of noise out the side of my mask when trying to exhale.

Here is my OSCAR pic from my last night on these settings (Night 7):

I went for my 1 wk post-start sleep tech visit. I was not congratulated for messing with my settings. The tech then set the unit at 15 pressure consistently as that should "prevent 95% of your apnea episodes". The tech did NOT want to turn EPR on (as Pugsy suggested), though I mentioned the mask farts when I was breathing out. Also the tech absolutely did not want to purge the data to get the machine's date corrected, which would resolve a weird calendar issue.

I've been on this constant 15 pressure 2 nights so far. (Due to a machine storage issue, I can only ever see the data in Oscar from two nights' previously, never the night previous.)

It's been a struggle these last 2 nights.

Night 8 (first night on constant 15 pressure): not too bad falling asleep (some sleep onset apnea), but awoke to find that I had taken off my mask sometime during my sleep. This was surprising - I had never previously unconsciously removed my mask.

Here is my OSCAR pic from that night (Night 8 )



Last night (Night 9, my second night on constant 15 pressure) was about the same falling asleep (some sleep onset apnea), some disruption due to exhaled mask farts. But at sometime (I think it was around 6am), I had a terrible dream of gagging and vomiting, and awoke abruptly gagging and about to vomit - it seemed to be from the air pressure on my throat, but can't be sure. I took the mask off quickly and happily the sensation immediately resolved. I went back to sleep without my mask. Unfortunately, I won't have that OSCAR data until tomorrow (because of the weird data issue).

I'm thinking about what Pugsy had suggested: that maybe my increased centrals would be improved by turning EPR on. (It's never been on. I didn't do this at the time Pugsy suggested as my AHI started to improve quite a bit.) I am drawn to activating EPR as the current constant high pressure setting triggers waking up as it's hard to breath against and results in mask farting. Also, this horrible gagging sensation only occurred on this constant high pressure, never in the 7 nights previously (when I was new to CPAP), and it seemed in my mind at the time to be due to the pressure on my throat.

So, the question: do you think I should take a leap and activate EPR at 3, as suggested by Pugsy (initially just to possibly reduce treatment-onset centrals)?

(I should say that my dreamtime mask already appears to be large. I've had to reduce the tension on my upper straps a bit as the underside of my nasal septum was getting quite sore. I get a lot of benefit with breathrite nosestrips which, I understand, would disrupt the seal on full-face masks.)

Many thanks,

Parasomniac

Looks like your tech decided to try and get rid of the hypopneas by increasing pressure, ignoring the centrals. If the centrals are real, increasing the pressure is likely to make them worse.

EPR would be a good thing to try IMO ... but hopefully somebody with way more experience dealing with centrals will be along...

Adding EPR is a long shot but really all that is left to try to see if the centrals reduce with bilevel pressures with this machine.

I have already told the OP that increasing the overall pressure and going to fixed cpap all night is the last thing I would have done when faced with those centrals.

I also told the OP that the tech was an idiot.

What really needs to be done is a real in lab titration but he's in Canada and that's not so easy even if we weren't dealing with Covid.
Otherwise I would do a total reversal and do a titration at home and start lower just like they would in a lab.
It accomplishes nothing to kill all the OAs and hyponeas and swap them for central apneas. Just trading one problem for another.

Pugsy wrote: ↑

Mon Nov 23, 2020 4:40 pm

I also told the OP that the tech was an idiot.

Have to agree, and the results ALSO agree. OP's results before that change were overall better than they are now.

If anything I would have lowered the pressure. CA's are far and away OP's major issue, at least as far as we can see with current treatment parameters.

Hi Pugsy and Khauser,

Thanks for these thoughts!

I'm pretty sure I'm about to be switched to a different sleep team. I have a key other medical appointment tomorrow and will review the data with that doc. For me dismissing the centrals out of hand seems odd, and also I have clear oscillating patterns through the night - once labelled as Cheyne-Stokes by the machine, many other times occurring but not flagged as such by the machine. By my reading of the literature, these are not manifestations of straight-forward OSA. The fact that I'm being managed according to an algorithm when there's clearly weird stuff going on seems wrong.

So last night I left the pressure constant at 15 (as programmed by the sleep tech) and activated EPR at 3. It felt much better. I didn't have any bizarre gagging, I didn't have as much sleep-onset stuff (as far as I remember). Because of the weird calendar issue, I won't get my oscar data for last night until tomorrow.

I'll update when I've got some news.

But the main thing: I cannot express enough how much it helps to have you and this community available. It would have been a lonely, discouraging, and uncomfortable time without you. Even now, with stuff clearly up in the air, and losing my faith in my sleep team (for good reasons!) - even though things are not settled - just knowing that I've got your reflections to help me know I'm not crazy for thinking something is off is a huge help right now. I have got other very active medical issues all at the one time and this CPAPtalk community is helping me keep everything in perspective and helping me have some sense of control.

So, thanks again!

Parasomniac

I took a little bit of time to go back and review what we have here to try to help figure things out.
Some things I noted.....level 3 home sleep study for one thing and it doesn't do sleep status so we don't know if asleep or not.
The hyponeas have been consistently at the same level no matter what pressure has been tried.
The centrals seemed to have increased in number with the pressure increases.
It would be nice to have the original sleep study report to see just how bad things were before cpap was added in terms of OSA and any central apneas.

So can you request a hard copy of your sleep report? In the USA medical professionals have to give a copy of all medical records if requested. I forget where you are....if I ever knew.

Those centrals might be sleep onset centrals and they might be treatment emergent centrals and while we can ignore a few centrals...we can't ignore the number you are having.

We really can't treat central apneas with this machine if they are numerous enough to be a problem. The best we can do is maybe reduce them to a manageable level where they aren't a big problem by maybe doing some little tweaks with the settings and even that depends on what is triggering the centrals as to how much chance of success we might have.
And we have to always keep in mind that we still have to treat the OSA as well. Unfortunately sometimes what is needed for the OSA ends up triggering centrals.

More pressure doesn't seem to help the hyponeas which we assume to be obstructive in nature but it wouldn't be impossible for the flagged hyponeas to be central in nature and that would explain why more pressure hasn't reduce the hyponeas as much as we would have expected. More pressure does seem to have definitely increased the number of centrals though which makes me think more along the lines of treatment emergent centrals than all being sleep onset centrals.

I don't know why you have to wait a night to get a detailed report just because the calendar date is off unless the software isn't or can't pull data from a future date. I once did what you did and changed the date to the future by mistake and I don't remember having to wait for the detailed report. But then that was some years ago and I was using different software and I will admit my memory isn't perfect. This would annoy the hell out of me and I would most likely say just screw it and erase the data and fix the calendar problem once and for all. You have your old data in the software. You will end up losing totally one night of data most likely but it might be worth it to end this hassle. There might be a way to save that one night though....I suspect that it is your computer software (OSCAR) and the computer calendar that is having the problem. The data is on the SD card for last night.

Here's what I would do once you decide to fix that problem.
I would get a new SD card...save the old SD card and download once the computer/software calendar lets you do it which apparently is second day.
Fix the calendar issue by erasing all the old data on the machine and change the date.... and use the new SD card...and use a new profile in your OSCAR software with the new SD card.
You would still have proof of usage on the old SD card and then eliminate the hassle you are having with viewing last night's reports.

Hi,

Wow this is a nice big-picture analysis.

Pugsy wrote: ↑

Tue Nov 24, 2020 9:08 am

Some things I noted.....level 3 home sleep study for one thing and it doesn't do sleep status so we don't know if asleep or not.

It would be nice to have the original sleep study report to see just how bad things were before cpap was added in terms of OSA and any central apneas.

So can you request a hard copy of your sleep report? In the USA medical professionals have to give a copy of all medical records if requested. I forget where you are....if I ever knew.

I'll try to get this. I'm in Canada and we have the same rules.

As you say, the Level 3 doesn't track sleep time - I know I was awake for at least 1/4 of the measured time, which would convert my borderline AHI of 29.7 to approximately 40. The sleep doc matched drops in O2 sat to chest/abd muscles which were apparently working to breath, saying it was diagnostic of OSA.

Pugsy wrote: ↑

Tue Nov 24, 2020 9:08 am

The hyponeas have been consistently at the same level no matter what pressure has been tried.
The centrals seemed to have increased in number with the pressure increases.

Those centrals might be sleep onset centrals and they might be treatment emergent centrals and while we can ignore a few centrals...we can't ignore the number you are having.

We really can't treat central apneas with this machine if they are numerous enough to be a problem. The best we can do is maybe reduce them to a manageable level where they aren't a big problem by maybe doing some little tweaks with the settings and even that depends on what is triggering the centrals as to how much chance of success we might have.
And we have to always keep in mind that we still have to treat the OSA as well. Unfortunately sometimes what is needed for the OSA ends up triggering centrals.

More pressure doesn't seem to help the hyponeas which we assume to be obstructive in nature but it wouldn't be impossible for the flagged hyponeas to be central in nature and that would explain why more pressure hasn't reduce the hyponeas as much as we would have expected. More pressure does seem to have definitely increased the number of centrals though which makes me think more along the lines of treatment emergent centrals than all being sleep onset centrals.

I've got my report from two nights ago - the first night I had 15 constant pressure and EPR of 3. Here it is:

So, two kinds of centrals:
- a bunch at the beginning of sleep (I remember only about 5 or so abrupt awakenings when trying to get to sleep, but it shows much more central events that that),
- chunks of centrals well after falling asleep, often in association with a shorter-cycle Cheyne-Stokes pattern

Bottom line: still a lot of centrals on the constant high pressure.

Pugsy wrote: ↑

Tue Nov 24, 2020 9:08 am

I don't know why you have to wait a night to get a detailed report just because the calendar date is off unless the software isn't or can't pull data from a future date. I once did what you did and changed the date to the future by mistake and I don't remember having to wait for the detailed report. But then that was some years ago and I was using different software and I will admit my memory isn't perfect. This would annoy the hell out of me and I would most likely say just screw it and erase the data and fix the calendar problem once and for all. You have your old data in the software. You will end up losing totally one night of data most likely but it might be worth it to end this hassle. There might be a way to save that one night though....I suspect that it is your computer software (OSCAR) and the computer calendar that is having the problem. The data is on the SD card for last night.

Here's what I would do once you decide to fix that problem.
I would get a new SD card...save the old SD card and download once the computer/software calendar lets you do it which apparently is second day.
Fix the calendar issue by erasing all the old data on the machine and change the date.... and use the new SD card...and use a new profile in your OSCAR software with the new SD card.
You would still have proof of usage on the old SD card and then eliminate the hassle you are having with viewing last night's reports.

I kind of feel like I will be yelled at if I purge the data on the machine. The issue is the machine thinks it's one day later than it already is. I told this to the tech, and also told her there was a year's worth of data from other patients on the machine. I asked if she could then (this past Friday) just purge/reset the machine and SD card, and she declined/refused, just saying, "It's not that easy." She basically ordered me not to change any of the settings at all saying, "We can't figure out what's going on if you keep changing the settings." She also said "the first week of data is almost trash anyways - it doesn't really tell us much - it just gives us a partial big picture which helps us slowly adjust the settings over time."

This seemed a bit bizarre to me, as (as we all know) there are LOTS and LOTS of data from each night. When she got mad at me for changing the settings, I said, "I didn't really have much choice. I kept waking up feeling like I was drowning, and not a few times, it happened at least 20 times. It was horrible. I couldn't just keep putting up with that. I had been given no phone number or guidance on how to deal with that, so I searched online and found this CPAPtalk community. Do you know about this group?" Her eyes narrowed and she tightened her mouth and gave a slight grim nod, and said, "yes" in the grimmest possible way of saying the word "Yes". Like it was almost like she was channeling Professor Dolores Umbridge in Harry Potter. If I think back properly, it at that point she got much more to the point, stopped asking me any questions, and just told me my role.

I said, "CPAPTalk was really helpful. I learned that there were others who had had similar experiences and they were helped by increasing their pressure. I was careful to not expand the range of my pressure beyond 9-16, but narrowed it to 11-16, which helped a fair bit. Later that night I narrowed it more to 12-16 which made a big symptomatic difference." I then explained how as the nights proceeded, I went up to 13, had figured out OSCAR and then tried to slowly drop my minimum to 11 (or maybe it was 12) which seemed to move things in the right direction. I asked about all the centrals the machine was reporting. It was here she said sternly, "This machine is not diagnostic at all. You can't rely upon how the machine is interpreting events." It was around this point I finally clued into the fact that I was being reprimanded. So, I just then listened to her directions and nodded my head.

While I would love to get immediate feedback the next day, I'm now convinced I'm switching sleep providers. I don't want to have things blow up even more by me tinkering with the memory in the machine, the card, etc. when she so clearly ruled that out. I guess, though, since I'm likely ending this relationship, I don't have much to lose. But I'd just like to reserve any defiance power I have for making setting changes. (As an aside, and this may be something you all already know, the device seems to be broadcasting the results over cell signal to the sleep company. She didn't have to take my card to download my data - she already had a sheaf of reports. Also interestingly, her data didn't quite match my OSCAR data. Hers was always a bit higher. So a day that OSCAR said my AHI was 8, her report said it was 10. Perhaps their clinic's software is able to identify likely awake time and subtract that time from the denominator in the AHI equation. As a further aside, this means that their data was showing I was doing worse when compared to how OSCAR said I was doing - meaning that despite Pugsy's great analysis that I'm clearly have all sorts of events and recognizing there's something not working out, the clinic team would be looking at data saying I'm doing approximately 20% worse than Pugsy was assessing, yet still not recognizing the same things as Pugsy did.

I have a phone meeting with the sleep tech in 3 days. Assuming I'm still with them (or at least, I'm still using their machine at that time while I'm in the process of switching sleep teams), I'll ask at that time again about purging the machine.

In terms of feeling well when waking up, on a scale of 1-10, with 1 being terrible and 10 being "great!", here are my ratings:

pre-CPAP - 6/10
first couple of CPAP days - 5-6/10
CPAP 13-16: 7-8/10
CPAP 11-16: 9/10
CPAP 15constant: 7/10
CPAP 15 with EPR3: 7-8/10

I'm thinking I'll switch my 15 constant back to 13-16 and then maybe 11-16 (ie. gradual changes), but leave EPR on.

Thanks CPAP team!

Parasomniac

PS - thanks chunkyfrog for the virtual brownies to welcome me to the club!

chunkyfrog wrote: ↑

Tue Nov 17, 2020 1:22 am

I made brownies--low calorie because I cut them into small-ish pieces.

parasomniac wrote: ↑

Tue Nov 24, 2020 11:34 am

So a day that OSCAR said my AHI was 8, her report said it was 10. Perhaps their clinic's software is able to identify likely awake time and subtract that time from the denominator in the AHI equation.

No...not possible. The machine itself can't tell if we are asleep or not and any data that gets transmitted over the air to the DME/doctor version of MyAir can't tell if we are asleep or not either. There is no software available that can tell sleep status from either the machine or the online data they get.
Any discrepancies probably relate to time used and reported more than anything else. I would have to see what she is seeing and the OSCAR report to figure it out and of course I can't get what she is seeing.

DMEs/suppliers/Doctors have available on the web version of what patients can see on MyAir. I forget the name at the moment and short on time. Gotta go to the beauty shop. Will reply in more detail later.

I am wondering if the "drowning" sensation was simply the central apneas manifesting themselves...either sleep onset or treatment emergent and not necessarily related to lower minimum pressure starting point.

Do you know how to zip/compress the contents of the entire SD card in one step? I have an idea that will mean more work for me but I need a mirror copy of the SD card to start with. It will be too large most likely to attach in an email but we could use dropbox.

What are the qualifications for this sleep tech you are dealing with? RT? MD? NP? PA?

Erasing the old data....geez...not complicated at all. I don't know about you but I hate being lied to. She just either doesn't want to do it or is too stupid to know how to do it. They were negligent in the first place by not erasing the old data. Hell, even I do that when selling one of my machines...takes all of 5 seconds from start to finish.

Woo-Hoo!!!

Big news!

2 nights ago I gave up on the constant 15 pressure (with 3 EPR) which had been what the sleep tech set it to at my 1 wk post-CPAP start follow-up.

I reprogrammed it to 11-16 variable pressure and kept the EPR of 3. I woke yesterday morning feeling pretty darn well. And just now I got the OSCAR data from 2 nights ago:
Woo-Hoo! An AHI of 1 !?!

Looking closer, I still have intermittent bits of oscillations and occasional clear airway events, BUT the truckloads of sleep-onset apneas seem to have disappeared!

For comparison, here is the data from the night previous (constant 15 pressure with EPR of 3):
It seems the main difference is the apparent elimination of the sleep-onset central apneas! Certainly over these past two nights (variable 11-16 with EPR3) I don't remember having the sleep awakening like I've had every other night since starting CPAP.

Pugsy wrote: ↑

Tue Nov 24, 2020 12:21 pm

parasomniac wrote: ↑

Tue Nov 24, 2020 11:34 am

So a day that OSCAR said my AHI was 8, her report said it was 10. Perhaps their clinic's software is able to identify likely awake time and subtract that time from the denominator in the AHI equation.

Do you know how to zip/compress the contents of the entire SD card in one step? I have an idea that will mean more work for me but I need a mirror copy of the SD card to start with. It will be too large most likely to attach in an email but we could use dropbox.

Hi, I don't know how to do this. It's kind of you to offer to help with this. My cardiologist and family doc have decided that they will switch me to a sleep consultant who is familiar with complex issues such as mine. I'm going to avoid rocking the boat with the existing sleep clinic and won't mess with the card and the machine's stored data, etc., as I'll be leaving them shortly.

Pugsy wrote: ↑

Tue Nov 24, 2020 12:21 pm

parasomniac wrote: ↑

Tue Nov 24, 2020 11:34 am

So a day that OSCAR said my AHI was 8, her report said it was 10. Perhaps their clinic's software is able to identify likely awake time and subtract that time from the denominator in the AHI equation.

What are the qualifications for this sleep tech you are dealing with? RT? MD? NP? PA?

Not MD, unlikely to be PA (as we don't have very many in Canada), I doubt NP, I assumed RT but not sure. I'm soon to jump ship anyways.


Bottom line: with your guidance CPAPtalk (and especially Pugsy), I appear to be getting close to an ideal set-up!

Any thoughts are welcome.

Thanks!

David

parasomniac wrote: ↑

Fri Nov 27, 2020 10:44 am

Woo-Hoo!!!

Big news!


David

always happy to hear big news!

parasomniac wrote: ↑

Fri Nov 27, 2020 10:44 am

Woo-Hoo!!!

Big news!