How to handle leak and other questions

[st8728]

Hello.

I have been using CPAP for about a month now doing a CPAP trial. I was dx with severe obstructive sleep apnea with an AHI of 36.4.

My central apnea was very low when I did my study, but now when I have started CPAP my centrals have gone up (but my obstructives have gone down). I had EPR on 3 until 29 Oct but then turned it off to see if anything changed (now I get hypopneas with EPR off) but it doesn't seem to be an issue with it on or off to breath. So I don't know if I should leave it on or off? How do you stop central when this happens?

I have been on fixed 8.6 for the past few days (Since 30 Oct).

I tried a few masks n30 which was comfortable but it kept falling off and the hose was annoying, or i would roll my head slightly and it would start leaking. I went to the p30i which was very comfortable but then killed my nose I had medium size and it kept going into my nose (the whole thing) and hurt like crazy. Woke up with a bloody nose. I moved to a large and it was much better. I got some lanolin and let it heal a bit. I tried the n30i for a couple of nights from the 30th however I kept getting large leaks and when I moved my head sometimes it would start leaking like the n30 but not as bad. I moved back to the n30i last night. I am getting a lot of large leaking though you can see an example of it in the attached. What is this? Is it mouth breathing? How can it be managed easily? I don't really want a full face mask as I think it would be too confining for me. I can attach more examples of the past few nights if anyone wants?
I have also attached my overview and stats page. You can see stuff is all over the place.

How do people get AHI under 1 I see a lot of people posting very low AHI.

I had a lot of periodic limb movement in my study I don't know if this matters at all. It was around 20 per hour.

Also FYI I still feel like rubbish sleepy wise.

Thank you

[st8728]

I don't know if its helpful but here are the prior 3 nights
Thur 29 Oct - APAP 5-20 cmH2O - Mask p30i
Fri 30 Oct - CPAP 8.6 cmH2O - Mask n30i
Sat 31 Oct - CPAP 8.6 cmH2O - Mask n30i
Sun 1 Nov - CPAP 8.6 cmH2O - Mask p30i

EPR is off on all of these

[Pugsy]

How is your overall sleep quality been? Waking often during the night?
Spending much time with mask and machine on and you are awake?
Do those leaks cause you to wake up?

[st8728]

Don't feel any better since I started on CPAP. I had a epworth score of 16 before sleep study/cpap.

I wake up a lot. Last night I put mask on just before 2:30am, I was still not properly asleep at 4am. I sleep with headphones on (in ear) so often don't notice the noise unless its really loud. Although I usually wake up and can feel it leaking in some way (air hitting my eyes for example or the side of my face next to my nose). I am unsure if I am mouth breathing though. My mouth is dry sometimes when waking up but it was also like this before CPAP, although prior to CPAP I used to wake up feeling like someone had dropped blades down my throat and it hurt a lot. My machine is set to auto for humidity and I wake up nearly every day with maybe 2-3mm of water left.

Last night was worse than normal getting to sleep as I forgot to take melatonin, and I cannot sleep without. Without melatonin I can only get scattered sleep 4~5hrs max within a 24 hour period.

[st8728]

It may also be noteworthy to mention I have a diagnosis of autism. I was told this can affect sleep from my doctor, which is what he wondered regarding how I ended up on melatonin originally as I have really bad insomnia.

[Pugsy]

The autism diagnosis does sort of muddy the waters a bit. While I don't know a lot about it I know that often there are sensory issues which can compound sleep problems.

Very likely it will make the one thing I would suggest doing for one night to figure out if you are seeing mask movement leaks or mouth breathing leaks difficult to sleep with....tape your mouth shut. Just for one night to see what kind of impact it might have on those leaks...if any impact. To fix a problem we first have to identify the cause of the problem.
The reason I don't automatically assume that all those leaks you are seeing are mouth breathing leaks is because I have seen similar on my own reports and I did tape my mouth shut so I could tell if it was the mask moving around or mouth leaking and even with taping the mouth shut I still saw bad leaks so that only leaves mask movement as the cause.

If you aren't sleeping soundly then that greatly increases the chances that a lot of the flagged events you see being reported might be false positive flagging. If you aren't asleep they aren't real apnea events.
Go here and watch the videos with special attention to the last one. Bear in mind that while it is talking mainly about central apneas we can have false positive awake/arousal breathing flagged events in any apnea category.
http://freecpapadvice.com/sleepyhead-free-software
I had a night early this past summer where my AHI was 9.4 and 90 % were false positive flags. I had a bad night of sleep due to bad back pain from overdoing things that day.
These machines only measure air flow and they have no way to know if we are asleep or not. Our awake/arousal breathing is much more irregular than our asleep breathing but the machine flags those irregularities anyway because it only measures air flow.
So the false positives aren't the cause of the poor sleep but instead a symptom of the poor sleep.
I suspect a good chunk of your flagged events are likely arousal/awake related especially the centrals. When that happens obviously the problem is the poor sleep quality which we both know isn't always an easy fix.

We don't need both mask pressure and the regular pressure line when reviewing the graphs...but we do need the flow limitation graph.
Can you omit the mask pressure graph and instead include the flow limitation line for the report with 5 minimum and 20 maximum and just one of the reports with fixed pressure? I need to see the flow limitation graph relative to the regular pressure line on both.

Also...what is your normal sleeping position....on your back a lot or on your side a lot?

Did you like EPR? Did you turn it off because you felt it might be causing the centrals? Were your centrals a lot more numerous with EPR on than what we see on these reports?

I found the P30i mask extremely noisy with Darth Vadar breathing sounds. Do you experience that as well with this mask?

Once we see the flow limitation graphs and get the answers to my questions above...then maybe we can come up with a plan depending on what your results are with your own homework of zooming in on those flagged events to figure out if you were asleep or not when they were flagged. No quick fix unfortunately. If it is as I suspect that the bulk of your AHI is more arousal/awake related then we have to try to fix the bad sleep and that's going to be made harder by the autism.

[st8728]

Thank you. I will try to pick up some tape from somewhere to test this. I will also watch the videos in the morning.

I have attached 3 screenshots:
-26 Oct 2020 - APAP 5-20 cmH20 - EPR 3 cmH2O
-29 Oct 2020 - APAP 5-20 cmH2O - EPR Off
-01 Nov 2020 - CPAP 8.6 cmH2O - EPR Off

Yes I turned EPR off to see if it changed my centals however it didn't seem to do anything other than make me have hypopneas. Most nights I wouldn't get them and if I did it would only be 2-3 of them. I was reading a lot to try figure out why I am suddenly having centrals when I only had a few in my sleep study, then saw talk about turning EPR off as it was possible it could cause them. I am not due to see the sleep doctor again until January. I have had EPR off since 29 Oct and have been wondering if it was worth turning back on now that I am on fixed for the time being. Curious at least to see if the hypopneas now go away. It was definitely much easier to breathe with it on, but not a struggle with it off.

I usually sleep with headphones otherwise everything wakes me up so I don't really notice it. I have woken up with a leak and realised the 3 cats are at the door staring at me wondering what the sound is.
I sleep on my back most of the night, sometimes I sleep on my back with my head rolled to the side.

My sleep has been disturbed since I was born according to my mother and I barely slept, as I got older it seemingly just got worse or i got more and more exhausted.

[Pugsy]

Turn EPR back on to whatever is more comfortable for you. I seriously doubt your centrals were/are related to EPR. Yes, for some people it does but actually that effect is very rare.
We want to make you as comfortable as possible so that your sleep quality has every chance to be the best it can be. It's already going to be a struggle so lets try to do whatever we can to keep you asleep.

Turn off mask pressure graph and replace it with the regular pressure graph. No need to redo these screen shots though.
I mention it for future reference. Masked pressure isn't particularly useful here. It's sometimes useful when we zoom in on the breathing but that's usually with a different machine than you are using anyway.

Again I really suspect that the bulk of your centrals aren't real asleep centrals but instead more arousal related.
Now it is normal to have a few real asleep centrals...so a few, even if real, isn't a big deal though. We can't fix centrals with your machine anyway but at this point I don't think centrals are your problem. I think your sleep quality is most likely your primary problem.

Where are you located?

[Pugsy]

How did you come up with the 8.6 fixed pressure setting?

Do you take any medications of any kind? If so, what?

Do you drink alcohol within 4 hours of bedtime?

[st8728]

I will turn EPR back on tonight and see what happens.

I am in Australia.

The lady at the sleep place here (they sell the CPAP etc) changed me to fixed as the sleep doc suggested I try fixed also (the doc has to give you a prescription for CPAP here. He wrote on it to do APAP for 2 weeks then set to 95%). I think she only looked at the week prior and set it to the 95% to get 8.6. I think it would have been closer to 9.4 or so if she had looked at the whole period prior. I am doing a 5 week trial currently where you get to change masks etc as many times as you need to. I attempted to put a nose only mask on and it felt like to much, which is then when I tried the n10 for the first week.

I take melatonin 5mg every night. I cannot sleep without it. Very occasionally I need to take valium to knock me out with the melatonin but seems to be less often now after lockdowns etc and I can work from home permanently.

I do not drink.

I am pretty fit, eat healthy, not overweight, don’t smoke etc. Spend between 7-9 hours a week doing intense exercise (running and cycling).

[Pugsy]

Thanks, it helps to know where you are as in other parts of the world cpap is handled a bit differently than what we do here in the US.
When you said you would watch the videos "in the morning" made my ears perk up and I thought you might not be in the US.

95% numbers just mean AT OR BELOW for 95% of the time. It is NOT where a person was at for 95% of the time but often doctors will want to have people use fixed pressures and go by the 95% number which sometimes isn't necessarily where a person needs to be.

Do you know how to change things yourself should you decide you want to?
The manual explains how.
https://www.respshop.com/manuals/ResMed ... %20her.pdf

Your flow limitations aren't necessarily bad at the 8.6 fixed pressure but they are a bit active. Lets see what happens when you add back in EPR at fixed of 8.6 pressure. I don't like to go making a lot of changes at one time unless forced to because then it makes it hard to figure out which change might have caused what result.

So for now....trial with taping the lips shut to see if the leak results change much....and just add back in EPR at whatever setting feels the best to you in terms of comfort with 8.6 fixed pressure. Watch the videos when you have time and then go do some detective work on figuring out how much of that AHI is asleep flagging or awake/arousal flagging.

[st8728]

I turned EPR back on to 3 cmH2O last night and it seemed better I think. Also my flow limitation doesn't seem as jumpy as it was with it off. The leak seems better also, maybe I will stick at this setting for awhile. It was easier to breath I think. Whats the ideal way with ramp settings by the way? On or off? When waking up in the middle of the night 8.6 cmH2O doesn't bother me pressure wise but do you get any benefit if you turn ramp off and goto pressure right away?

I was wondering if it was worth asking the lady to set me to auto but with a more limited range rather than 5-20. If I did this how do you determine what range to use? So if my fixed was 8.6 would I use 8.6 as my lower and say 13 as my high? or do you drop lower? Does EPR on/off change what should be set pressure wise?

I assume the pressure should be high enough to stop all obstructives right? I had 10 last night.

[khauser]

Ramp is all about comfort. While the machine ramps up you're getting under treated, but many people can't tolerate their system otherwise. Others have no need with ramp and for them there's no benefit to leaving it on.
EPR (or flex) is another comfort issue (for the most part) but usually it doesn't negatively impact treatment.
Around here we advise people to set the max to 20 and the minimum typically to somewhere close to where the machine seems to want their pressure to be most of the time (not to be confused with 95% pressure, which isn't really useful).
Working with providers complicates masters as they may not agree with this strategy. They usually don't have good reasons, but it is what it is.
Here where I am, and with the doctors I choose to keep, I would just do what I want unless my doctor communicated why this was a bad idea. I'm my only advocate and I take that responsibility seriously.
But there are places where that strategy may not work...

[Pugsy]

During ramp the machine doesn't record any apnea events when using fixed pressure.
During ramp the machine doesn't record any apnea events or respond with more pressure when using auto adjusting mode.
Ramp is really only useful when a person can't get comfortable with the baseline pressure setting.
With fixed 8.6 and EPR of 3....you have 8.6 on inhal and 5.6 on exhale. It should be very comfortable and most people wouldn't need to use ramp. Now if your pressure was say 14.0...then you might appreciate and need ramp more.

If you wanted to try a tight auto adjusting range...I would suggest 8 minimum and 12 maximum. I doubt it will move much off of around 9 though. How did I come up with that suggestion???? Experience, personal and thousands of reports I have seen.

No experience with the autism complicating though but since I know there can be sensory issues I wouldn't be in a rush to go wild with changes or anything that might allow changes to happen unless there is a critical need. Like I know that flow limitations might drive the pressures up a bit (when you were using the 5 cm minimum) and for most people that's okay but for someone with potential sensory issues I would tend to maybe want to limit changes so we also limit sensory changes.

Use these settings for a week though...let the body get adjusted and see how things go and do your homework on figuring out if those centrals are asleep or arousal related. I see no urgent need to switch to auto adjusting pressures at this time from this one report.
I would want to see more reports using these same settings first.

[st8728]

Interesting, I might turn ramp off and see how that goes. I find when falling asleep at the start of the night I end up waking my self up over and over because I stop breathing etc, its like a scare myself awake. Maybe turning ramp off will stop this.

I think pressure wise the highest I had ever got was around 13 cmH2O but I slept through it so didn't get to see how that felt. Current fixed doesn't seem to bother me at all. When you do the mask fit what pressure does this use out of curiosity? it seemed to be much higher than I was used to when I tried it.

Thankfully I have had little sensory issues with CPAP so far, but I think that might change if I had to use a full mask. The most frustrating issue has been the p30i seems to irritate the outside of my nose because its not used to it so I have been using lanolin to try help, I guess it will get better over time. At first the medium size was really bad until I changed to large which has been much better. I have issues with noise and light which is why I wear headphones to sleep. It is kind of difficult to fit my weighted eye mask though