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

[parasomniac]

Dear CPAPtalk community,

Wow, you are an incredible bunch of people. In my first 24 hours in my new phase of life called "CPAP-user", your strategy to enable non-members to read messages have already been of incredible help. Thank you very much.

I have faithfully read the "Newbie/start here" kind of message, have indicated my birth year and entered all my equipment. As it's a loaner device, it didn't come with a manual, so I can't figure out the specific type of humidifier in the unit. I'm sorry in advance if I failed in providing other key equipment in my profile. I will double-check right after I post this message.

I'll pose my question and then give you my background. Again, I am grateful this community exists.

Question: Should I increase my minimum pressure range further to reduce/eliminate abrupt/lurching awakenings?

Background:

I was just diagnosed with mod-severe OSA after a Level 3 home study which clearly showed I was cycling as follows: approximately 6-7 good breaths, followed by obstructive hypopneic episodes of approx 4-5 "breaths" with then increased heart rate and then back to the 6-7 good breaths. 30% of the "sleep period" (which may have included awake time as I wasn't in a sleep lab), my O2 sats were below 90%.

I'm 49 and have had parasomnia (talking in my sleep, sometimes acting out dreams) since I was fully grown (age 20 or so). Relevant to my scenario, I had LOTS of teeth extracted as a kid and later in my late teens because my dentists said "there's not enough room". This likely blunted my maxillofacial growth. I'm tall but lean/thin. My shoesize is 13, yet my dental retainer arches are smaller than my wife's - she's 70 pounds lighter than me and has much smaller frame/bones than I have. Basically, my maxillofacial anatomy is clearly small in proportion to the rest of my body. I've always been amazed at how much others can put in the their mouths as I will gag even if I were to put a whole cookie in my mouth. While I am yet to have a maxillofacial assessment, it really seems that is the source of my OSA.

I only recently learned that my parasomnias should be assessed by a physician (to rule out REM sleep disorder). The sleep doctor thought that since I had symptoms for so long, I might have OSA. He supposed that my brain would sense hypopnea/apnea and send a burst of cortisol which wouldn't wake me up fully, but would arouse me enough such that I would interact with my dreams. So, I had the test which blew me away that it was so clear that I had mod-severe OSA and likely truly "severe" as I was just slightly below the cut-off for severe and Level 3 studies include all time (including any awake time) in the denominator time unit.

Now that I know I have OSA, it makes more sense. Rarely in my own bed, I would wake abruptly, gasping for air, but only once every few months. However, in any hotel, I would fall asleep quickly and then wake abruptly. This would go on and on and on, eventually taking a couple of hours to fall asleep and stay asleep. I had just assumed it was a quirk I had developed.

Given in the sleep office I not only tolerated 9, but it felt more comfortable than a pressure of 7, and given that I usually fall asleep quite quickly, the sleep tech set the ramp as OFF, the expiration thing OFF, and set a range of 9-16 for my pressure. She explained it would stay at 9 until I fell asleep, and the machine would eventually detect I was asleep and (gradually maybe) increase to 16 or something a bit less.

So last night, I followed all the training. I had no air leak at all, and after reading a book for a bit and getting drowsy, tried to fall asleep. It took about 20 minutes. However, I quickly woke up, gasping a bit for breath. I had been asleep for 1-2 minutes at the most. I settled and got drowsy again, and feel asleep again, and lurched awake again. At first I thought it was just me getting used to the machine. After about 4 cycles, I realized it was very similar to how I would repeatedly lurch awake in hotel beds or when trying to sleep on an airplane.

I wondered if I should increase my pressure - that what was happening was the unfamiliarity of the facemask was enough different that I wasn't falling into a deep sleep and my apnea/hypopnea was now causing me to wake up, and the "low" pressure of 9 hadn't yet increased and wasn't enough to keep my airway open. I found this website and learned from other posts that this might be the case. Then I learned how to go into the clinical menu and increased my minimum from 9 to 11. (I did NOT increase the prescribed range - I kept my adjustments within the prescribed range.)

This improved things. I still kept waking up, but only about a third of the times did I wake up gasping for air. After sticking it out for a while, I increased my minimum to 12.

I had 3 cycles of re-awakening but with only slight or no gasping. And then I awoke 2 hours later - I was amazed! I'm not sure why I woke up then. I went to the bathroom, fixed my pillows, etc., and was able to sleep for another 2.5 hours - with the minimum setting of 12. (I had another few cycles of fall asleep / quick wake up (but with only slight gasping) and then fell into my 2.5 hour sleep.) I then awoke when our phone rang (it was morning by then).

So my first night wasn't that bad. I liked the feeling of pressure 11 more than I liked 9, and I liked the feeling of 12 more than I liked 11. I clearly seemed to do better with higher initial minimum pressures - less severe lurching awake with 11 vs when at 9, and even less and continued sleep when starting with pressure at 12. Yay!

I only slept around 4.5 hours in total, but I felt like I had as much or more energy today than after any pre-CPAP 8 full hours of sleep. So it seems like I'm getting a good response already.

Back to my question - I sort of feel I should increase my minimum pressure to 13 or maybe even 14, so I can just fall asleep and stay asleep. Is this crazy to consider? Have others been in the same scenario? I have been blessed in life that I can generally fall asleep quickly (probably because I've been unknowingly walking around with OSA for decades and I've been very tired at the end of each day as a result). It would be nice to adapt to CPAP without having these cycles of sleep/abrupt-awakening before I get into my "real" or deep sleep.

Again, it was this message board which confirmed my instincts that I should increase my minimum beyond 9 and gave me the confidence to do so. That alone was a tremendous help and I thank those who created this board, monitor this board, and created an online culture in which CPAPers can share their experiences. This already helped me get to a much better milestone on my CPAP journey. It would be sweet if you are able to help me with this fine-tuning from here.

Finally, the reason why I'm keen to quickly get to a good place with my CPAP is that I had surgery not long ago with not 1 but 2 serious complications, and then this OSA discovery happened. Your assistance has already helped me get some control over my health issues. Frankly, I am hoping that even a few nights of truly restorative sleep - something which I haven't had in 3 decades - will help me feel much better and enable me to be more effective with my physiotherapy and just set my mind at ease.

So thank you CPAPtalk community. You didn't know I was coming your way; heck, I didn't know I was coming your way. Even so, I found a warm community with a fire in the hearth and arms open wide. You have already helped me in the wee hours last night so much - thanks! And thanks for letting me join.

Take care all, and I hope you have a great sleep!

[Julie]

A good letter, and what sounds like you have a good doctor - and those can be hard to come by!

Don't just keep raising your pressure (yet, anyhow), but definitely do download Oscar and post results in this thread so we can see what's going on overnight and suggest tweaks, etc. if necessary.

It's good that you know how to adjust the machine, but you're getting a bit ahead of things, though I understand your wanting to 'move' after having a long life of bad sleep.

[ChicagoGranny]

Back to my question - I sort of feel I should increase my minimum pressure to 13 or maybe even 14, so I can just fall asleep and stay asleep. Is this crazy to consider?

Just do it! Whatever works for you. It's hard to hurt yourself with a CPAP. Also, you can drop the pressure the next night if the higher pressure doesn't work out.

And, yes, you can better see what is going on when you start using OSCAR.

I have faithfully read the "Newbie/start here" kind of message, have indicated my birth year and entered all my equipment.

You're a rare one.

[parasomniac]

... sounds like you have a good doctor - and those can be hard to come by!

I sure do have a great family doc. My sleep doc is also good with a great sleep tech team.

Don't just keep raising your pressure (yet, anyhow), but definitely do download Oscar and post results in this thread so we can see what's going on overnight and suggest tweaks, etc. if necessary.

I downloaded Oscar yesterday but am having trouble getting the data off the SD card. Today I've got more time and will read the Oscar directions more thoroughly and get this done. I did raise it last night to 13 - it felt great while awake and I had less severe (but not nil) abrupt awakenings. Good to know that maybe I should not just quickly keep raising it.

It's good that you know how to adjust the machine, but you're getting a bit ahead of things, though I understand your wanting to 'move' after having a long life of bad sleep.

Yes, I want to move on this after the decades, but the two key reasons I want to get settled quickly are:
1. I really don't like those abrupt gasping cycles which I've never really experienced in my own bed - the increase heart rate, the being ripped out of a dream and momentary confusion, and then the disappointment to glance over and learn I only got a minute of sleep for that pain, and most of all,
2. I have a very serious active complication from my surgery. I'm under treatment for it, but I'd like to settle the chaos I've been under, and also better overnight oxygenation will almost certainly help this complication and help my surgery itself heal better.

I'll be as patient as I need to be - I'm simply seeking to get my CPAP journey settled as quickly as possible for these reasons.

Thanks Julie for your thoughts and guidance!

- parasomniac

[Miss Emerita]

Welcome, parasomniac! You're off to a great start, with an excellent machine, a good community here, and a problem-solving outlook. Plus you had a first night that many would envy.

I think you will be fascinated to see your data in Oscar (link below). You'll need a laptop or desktop computer, an SD card in your machine, and a way to read the SD card, either a slot in your computer or a plug-in reader.

A screen shot of a daily chart from Oscar will give people here a much better idea of how to advise you, though it's also true you can't really hurt yourself by raising your minimum again, if you'd like to try that.

Sleep-transition apnea (aka sleep-onset apnea) is not uncommon. It is often central (meaning there's no obstruction) and sometimes obstructive. One reason to take a look at an Oscar chart is to see which kind of event you're having as you fall asleep. The good news is that the condition can resolve itself over time as your body figures out how to make the electro/neuro/chemical transition to sleep a smoother process.

[parasomniac]

Back to my question - I sort of feel I should increase my minimum pressure to 13 or maybe even 14, so I can just fall asleep and stay asleep. Is this crazy to consider?

Just do it! Whatever works for you. It's hard to hurt yourself with a CPAP. Also, you can drop the pressure the next night if the higher pressure doesn't work out.

So last night I increased it to 13 and it was a bit better than at 12, with me falling asleep approx 30 min after first trying. I awoke around 6 to find out I had taken my mask off completely at some point in the night. I then was asleep from approx 630 to 830, but awoke at 830 with those cycles of lurching awake/falling asleep. Eventually I couldn't take it anymore and took it off voluntarily and slept for a bit more. So a pressure of 13 was slightly better than at 12, but then I had those other troubles. I might try 12 again tonight.

And, yes, you can better see what is going on when you start using OSCAR.

As I mentioned in my reply to Julia, I'm having a bit of difficulty with OSCAR. Today I've got time to make sure I get my device's data over correctly. Fun fact: while fiddling with the SD card yesterday, I found a year's worth of data folders - in other words, all the data from everybody else's trials with the same machine. I didn't open them, and the trouble I had was simply transferring over my 1 night of data instead of the whole root folder. Since it's a ResMed machine, OSCAR is very clear that I must lock the SD card otherwise my laptop might automatically put a utility file on it and render the SD card useless for the ResMed Airsense. So it appears that I can't delete the other people's data, yet I don't want to pull their data into my laptop and (1) have access to their private data (which may include their names and health card numbers, etc.), and (2) have OSCAR connect my data with their data and think it's all from the same person. Hopefully I can figure out today how to just transfer over my data. When I have my 1 week visit on Friday, I'll ask the sleep people to wipe the data card clean of the other people's data.

I have faithfully read the "Newbie/start here" kind of message, have indicated my birth year and entered all my equipment.

You're a rare one.

Well ChicagoGranny, it only took me a read of a couple of posts for it to be really clear that you need this info to help answer questions. If my goal is to get a settled CPAP program in place as quickly as possible, I've got to help you help me.

I can see why some people if they're fatigued and less comfortable with this kind of stuff, and maybe even brand new to a message board of any type, they might not enter all their info.

Thanks ChicagoGranny for all your help!

- parasomniac

[parasomniac]

Welcome, parasomniac! You're off to a great start, with an excellent machine, a good community here, and a problem-solving outlook. Plus you had a first night that many would envy.

I think you will be fascinated to see your data in Oscar (link below). You'll need a laptop or desktop computer, an SD card in your machine, and a way to read the SD card, either a slot in your computer or a plug-in reader.

Thanks for the kind welcome, Miss Emerita! I'm working on OSCAR - just stuck at how to NOT download the data from the other patients and only download my now 2 nights' worth of data. I'm going to try to figure this out later today.

Sleep-transition apnea (aka sleep-onset apnea) is not uncommon. It is often central (meaning there's no obstruction) and sometimes obstructive. One reason to take a look at an Oscar chart is to see which kind of event you're having as you fall asleep. The good news is that the condition can resolve itself over time as your body figures out how to make the electro/neuro/chemical transition to sleep a smoother process.

Cool - I didn't know OSCAR was sophisticated enough to indicate the kinds of events I'm having. I wasn't given my sleep study report so this is all from memory: my events were mostly obstructive, but I did have 2-3 centrals an hour. The sleep doc just showed me data from sometime in the middle of my sleep - he didn't discuss the onset period.

Okay, even more incentive to get OSCAR figured out today. Also, it's great to hear sleep-transition apnea (which it sounds I have) can resolve over time.

Thanks very much!

- parasomniac

[Pugsy]

The need to lock or write protect SD cards is just needed for ResMed S9 machines. Your AirSense 10 machine won't care if the operating system puts a text file on the SD card or not. It was only the S9 models that had that problem.

You can manually purge the old data from OSCAR by data range.
Go to Data and then the Advanced tab and you will see the purge options.
Only problem with it still being on the SD card is the next time you download it will come right back...I think.

The old data is still stored on the machine's internal memory though so to thoroughly remove it you have to erase the data on the machine and the SD card. Since this is a loaner machine it might just be less of a pain to just do the purge within OSCAR.
To get it totally gone you have to erase both the machine and the SD card which of course erases your data as well.

[parasomniac]

The need to lock or write protect SD cards is just needed for ResMed S9 machines. Your AirSense 10 machine won't care if the operating system puts a text file on the SD card or not. It was only the S9 models that had that problem.

You can manually purge the old data from OSCAR by data range.
Go to Data and then the Advanced tab and you will see the purge options.
Only problem with it still being on the SD card is the next time you download it will come right back...I think.

The old data is still stored on the machine's internal memory though so to thoroughly remove it you have to erase the data on the machine and the SD card. Since this is a loaner machine it might just be less of a pain to just do the purge within OSCAR.
To get it totally gone you have to erase both the machine and the SD card which of course erases your data as well.

Thanks Pugsy, this was all helpful.
Here are what I have learned:
1. The machine didn't record anything from my first night of use for some reason "no data". So I only have data from last evening (Nov 14 to morning of Nov 15).
2. Clearly how I thought the overnight wasn't exactly how it went - my portions off the mask were shorter than I realized.
3. It seems my AHI is pretty high even on APAP/CPAP: 18.93.
4. I swear I narrowed my range from 12-16 to 13-16, but this report appears to show for the first half of the evening it was down to 10 or even 9. In this first half I had a bunch of apnea, but in the second half - with increased pressures - it seems I only had hypopneic events. (Is this a correct interpretation?)

I'd greatly appreciate your analysis of my OSCAR report and guidance on what I should do. By my read - which is likely to be flawed - I need to have higher pressures from the get-go. Can I just set it to never drop below 13 or so? I'm all ears - I'm very new to all this.

(In case you need a recap: I'm a lean tall 49 year old guy with decades of parasomnias and a very recent diagnosis of mod/severe OSA (possibly maxillo-facial in nature) from a level 3 sleep study which showed mostly OSA and rare central events. As I recall my AHI was 29.something. I just started ResMedAutosense10 and am having cycles of falling asleep and abrupt awakening at the start of trying to get to sleep, which have improved in severity and lessened as I increased the minimal pressure on my machine. This is the picture from night 2 of use; night 1's data were not kept by the machine for some reason.)

Many thanks!

- parasomniac

Screenshot 2020-11-15 parasomniac.png (154.95 KiB) Viewed 1398 times

[Pugsy]

Don't go crazy increasing that pressure. The bulk of your AHI is composed of central apnea/clear airway apneas and more pressure from this machine isn't going to fix things at all.

Go here and learn how to zoom in on the flow rate so you can look for asleep breathing flow rate vs arousal/awake breathing flow rate.
http://freecpapadvice.com/sleepyhead-free-software
While it talks mainly about central apneas...do bear in mind that we can have false positive flags happen in any event category.
These machines only measure air flow. They don't have any way to know if we are asleep or not and awake/arousal breathing is often mistaken for some sort of apnea event. If we aren't asleep they simply don't matter.

What you are describing sounds more like sleep onset central apneas and normally those don't present a problem except for when they keep bouncing us out of sleep or a person has a truckload of them...and you are pushing the truckload thing.

You have a lot of fragmented sleep on this report so we know you didn't sleep well and until you can get good solid prolonged blocks of sleep it's hard to figure out what pressures might be needed.

So the first thing to do is figure out how much of what you are seeing flagged relates to actually being asleep or not.

Don't go increasing that pressure. More pressure won't reduce the centrals (assuming they are real asleep centrals) and could potentially make them worse.

[parasomniac]

Ok this is very helpful. I'll keep it where it and see what happens. Tonight I feel like I should feel drowsy at a normal sleep time. And I'll try to track when I'm awake much better.

Thanks!

[parasomniac]

Okay, I've figured out there's something strange going on with my machine. It's date is set 1 day ahead, and the time is set 2 hours and 21 minutes fast. AND when it provides data, it's not for the just completed night, it's for the night before that.

So the image above is from my night 1 (not night 2 as I had thought) - that night started with min pressure at 9 and I gradually increased the min pressure to 12 to try to overcome the sleep-onset "truckloads" of apnea I was getting which seemed to work.

The image attached here is from night 2 when I had set my minimum pressure at 13 and had far less number and less severe sleep onset apneas. However, this isn't fully reassuring, as my AHI is still around the same (19) and the vast majority of the events are still "Clear Airway". (The timestamps should all be subtracted by 2 hrs 20 min - or just ignore the time stamps.)

I'm going to contact my sleep company and see if they can fix the date on the machine. (The machine won't let me put it to Nov 16 as it says Nov 16 is "in the past".) I have been able to fix the times on the machine. I will try to pull night 3's data later this afternoon (if it will let me). Last night (night 3) was pretty solid - fell asleep at approx 2250, had a few sleep onset apneas/awakenings but they were gasping, then slept solidly until approx 4am, went to the bathroom and put the device on again and fell asleep (with a few sleep onset apneas), then awoke at 0715 with a painful face and lots of airleak. I couldn't get it to stop leaking so took it off. So just over 7 hours on the machine with one brief interlude.

Many thanks,
David

Screenshot night 2 parasomniac.png (146.17 KiB) Viewed 1356 times

[parasomniac]

So given it appears I have lots of central sleep apnea while on CPAP, yet my Level 3 sleep study showed I was by far mostly obstructive (with only a few central events), this would seem to be treatment-emergent central sleep apnea. My understanding is this will often resolve over time, but not always. Are there any tricks of the trade to facilitate the spontaneous resolution of treatment-emergent central sleep apnea?

Thanks!

[Pugsy]

If those are real asleep central apneas....the only real tool we have available (beyond the give it time thing) is when sometimes people using EPR/exhale pressure relief can be turned off because sometimes it can be a trigger.

You aren't using EPR so can't turn it off.

Now sometimes going to bilevel pressures will actually help reduce centrals. I know it doesn't make much sense but sometimes adding EPR to create a bilevel situation might actually help. Your machine can be made to function like a limited bilevel machine by adding in EPR...set it to 3 and see what happens. It is something to try.

As for the date being off. The machine simply will not go backwards when there is data from a sleep session within that date.
The only way to fix it is to totally erase the data from the machine and then set the calendar to the correct date. There is an option in the clinical setup menu to erase all patient data.
Or not use the machine for a full night so no data is on the date you want to go back to.

If you do erase the data I would suggest creating a new profile in OSCAR because if you don't the software will be confused as it will have 2 sets of data for the one night and it will get confused. It hurts nothing to have more than one profile in the software.

[Miss Emerita]

To reset date and time on the machine, you'll need to go into the clinician's menu, I believe. Be sure to push the round button after making changes so that they'll be locked in.

As Pugsy has explained, the CAs may reflect a lot of awake or semi-awake breathing, which can be quite irregular. Some people also experience CAs as an effect of PAP therapy (treatment-emergent central apnea). For them, the PAP therapy results in washing out just enough CO2 to reduce the signals that tell us to breathe. Like sleep-transition CAs, therapy-induced ones tend to diminish as time goes by.

Meanwhile, I'm not seeing much reason for you to stick with your current minimum and maximum. Yes, you have hypopneas, RERAs, and flow limitations, but the CAs are by far the most striking thing going on. You started out with a minimum of 9 but reported things felt better with 11 and 12. Any chance you might want to revert to, say, 11, with a max of, say, 13? -- That said, I would definitely defer to Pugsy if she had a different suggestion to make.