What's going on?

[Pugsy]

Encore graphs

[Pugsy]

What is the Leak (not Total Leak) line supposed to indicate?

Excess leak and it is not reliable in its calculations in SleepyHead due to problems with calculations and variable pressures. This is why I don't even talk about the bottom leak line...it's obvious that it is totally off during the period of large leak.
Mark didn't fine tune this particular calculation for the PR S1 machines.
It should be somewhat level around the 100L/min mark instead of dropping back down. The leak is massive and prolonged. The bottom leak line should be somewhat level at a much higher number.

Just added Encore graphs

Thank you.
I don't know what happened during the time of zero data unless the leaks were so bad the machine simply turned off.
Do you have Auto Off set to On or Off in the clinical setup? If it is set to "On"...then the leaks may have been even larger than what you see in the next segment and maybe it just turned itself off.

The time in massive leak...speaks for itself.
Why no CAs? The only reliable time frame is the first hour or so of the night. So no CAs during that time frame. The time frame in large leak...the leak is too big for the machine to be expected to record events accurately. The events it recorded are probably real but that doesn't mean that it didn't miss other stuff.

[robysue]

Do you have EncoreBasic software? From 5AM to wake the leaks were massive. The missing time...maybe the machine shut off due to leaks???

and

I have my machine set to automatic on.

I'll start with a question for Roslynr: Do you have Auto OFF turned on? The Auto OFF feature is designed to turn the machine off when it no longer detects breathing. Auto OFF is a separate feature from Auto ON. (Auto ON is designed to make the machine turn itself on when it detects breathing.)

If roslynr had the Auto OFF feature turned off (i.e. disabled), then machine should not have shut itself off. If Auto OFF is disabled, the time when the machine is on and there's no breathing detected gets a big, ugly Black Bar over the Leak graph in the Encore report. And in Sleepy Head you'll see a gap in the wave flow if the machine can't detect breathing, but you'll have no gap in the Pressure graph or the Leak graph unless the machine is turned off.

One thing about the gap in the data: The leak rate right before the gap is NOT that large, but it is growing at a pretty dramatic rate. The wave form data for the same period seems to show a bit of wake breathing or some recovery breaths just before the data cuts out. Again some questions to roslynr are in order:

Do you know when you got out of bed for the bathroom break? Was it right around 2:45? Did you manually turn the machine off or do you also use the Auto OFF feature?

Regardless of whether you turned the machine off or it turned itself off through the Auto OFF featuer, if the beginning of this break is when you were awake and went to the bathroom, the BIG question is: Why doesn't the data start back up when you went back to bed and put the mask on and started breathing? With Auto On set to on (i.e. enabled), we would expect the machine to turn itself on within a few minutes (at most) of when you returned to bed and put the mask back on.

If I read your posts correctly, you were using a FFM this night. Is it possible that the machine just could not tell you had once again masked up and started breathing through the mask? The breathing effort needed to get the Auto On feature to work does depend on the mask type if I recall correctly. So it's within the realm of possibility that the machine simply did not detect your normal, night time breathing because you were using a different mask. It looks like there's some really big breaths (bigger than your normal night breathing) right around 4:15, when the machine comes back on. Maybe those breaths were deep enough for the machine to detect and, hence, they triggered the machine coming back on?

In any case, if this were my data, I'd no longer trust the Auto On feature. I'd turn Auto On off even though it means having to manually hit the start button after you mask up. That's a small price to pay to insure air is coming through the mask.

[roslynr]

Just rechecked my machine and I did have the Auto On feature set to Off. So it is very possible that i didn't turn it back on when I returned to bed. I just turned the Auto On feature to On. Auto Off feature is also tunred ON. Thanks for pointing this out to me. It never happened before that i didn't turn machine back on, but one time is once too many.

I have some great news from last night's session. I still had somewhat stuffy nose so took antihistamine and was back on nasal mask. I didn't tape mouth closed because of that and so leaks are higher than usual. However, this is the first time ever that I had such few apnea events (under 5). It looks like the lower pressure setting (14) has cleared both the CAs and the aerophagia. I can't tell you how pleased and hopeful I now am. Thank you all again so much.

Here's my last night's readings: http://s1289.photobucket.com/user/rozr1 ... 6310758123

Or are these low readings because of the leak?

[Pugsy]

That's good news for sure. I would stick with these settings for a little while and give yourself some time to make sure things are trending this way and maybe, stress the maybe, try minimum pressure increase of 0.5 cm if the numbers increase much.
Sometimes we have to make compromises between numbers and good quality sleep without the aerophagia rearing its ugly head.
Good quality sleep trumps trying to lower an already acceptable AHI. Last night's AHI is acceptable. Maybe not the prettiest of reports but beautiful when compared to your prior reports. Centrals nearly non existent. I am thinking that the large number of centrals seen in the past were likely arousal centrals and not unstable breathing centrals. Let's just watch this for a few days to make sure this is consistent.

[roslynr]

Well, looks like I'm back to my restless sleep pattern where I wake up unrefreshed and feel fatigued throughout the day. I do have to say though the numbers appear much better than it was prior to changing my min/max settings to 11/14. So wondering if there's any more advice that can help my unrefreshed sleep.

Since my last charts were posted, my AHI readings were:
9/25 - 9.20, 9/26 - 8.46, 9/27 - no cpap, 9/28 - 5.16, 9/29 -11.34, 9/30 - 12.88 with taped mouth

I've posted the last two nights on photobucket: http://s1289.photobucket.com/user/rozr1 ... 3066640785

Thanks for any input.....

I just noticed that my humidifier was set to off and so will turn that back on tonight.

[JonathanCPAP]

Instead of a minimum/maximum of 11 and 14, I think you could still benefit from increasing both numbers even more. Set it at minimum 13 and maximum 15 and come back in three days.

[Pugsy]

Still roughly 50% centrals and your obstructive events aren't under control either.
What's the status of a follow up with sleep doctor??? To discuss all this. Please do get that in the works.
How about another 1 cm increase in both minimum and maximum? See if we can get the obstructives to reduce in number still yet.
I don't advise going to 13/15 just yet. With your centrals (since we don't know if they are real or not) I would proceed with caution. Small changes.

It's hard to say if the poor sleep is causing the abundance of events or if the abundance of events is causing the poor sleep...

[roslynr]

I'll up the min max setting to 12/15 tonight and report back in a couple of days.

I have a call in to the sleep doctor.

Thanks

[roslynr]

Hi all. Have good news to report since last posting. My apneas have stayed down to a reasonable number with pressure set to 12/15.

Date OA CA HA SpO2events Pulse:
10/02 5.43 1.92 1.24 ----
10/03 0.93 2.60 1.86 ---- 7 of the 14 CAs i was awake
10/04 No pap because nasal congestion was really bad and could not breathe thru nose
10/05 2.65 0.99 0.66
10/06 3.11 2.98 1.94 152 103
10/07 3.19 1.18 0.94 65 75
SH for last 2 nights: http://s1289.photobucket.com/user/rozr1 ... 2020746814
Note SpO2 graph is not synced to SH.

So CAs seem to have calmed down and aerophagia has gone away, thanks to you all.

My problem in the last several days has been nasal congestion that comes on about an hour or two before I go to bed. I don't know why it starts in the late evening. I've tried a ffm but had lots of leakage and so went back to nasal Mirage; it was very hard to exhale and had to exhale thru mouth while falling asleep. I tried Afrin spray last evening but not much help; may not have sprayed enough to be effective. I read on some posts here that a nasal dilator may help and will try that if no other teactics work.

Anyhow, if you see anything in my latest graphs that require my attention, please let me know.

Thanks....

P.S. My pulmonologist (also sleep doctor at Kaiser) wasn't very interested in hearing about the CAs. I mentioned the possibility of an ASV device and he asked me what that was. When I said AdaptoServer he said that all the machines were just variations on a theme. Think he's much more interested in pulmonology than sleep apnea.

[Pugsy]

It's pretty sad when your doctor doesn't know the machines ....
Oh well. I think you have turned the corner. I don't think that you have enough centrals to warrant the ASV machine anyway..whether they are real or not or from pressure itself.
You may have found the fine line between acceptable treatment for the obstructive apneas and still yet low enough to keep the aerophagia monster at bay.

Your reports are a huge improvement over your first reports that I saw. I think you have a good handle on what to look for and what to do and also know that you have to toss out any of those awake CAs and that makes your AHI even better.

Don't know what to tell you about the nasal congestion issues. Some people do that neti pot thing and it helps. If you do that be sure to do it an hour or so before bedtime. I will let the others maybe offer their ideas for nasal congestion that starts about 2 hours prior to bedtime. If you do the Afrin thing...no more than 3 nights in a row or maybe just one side. For me Afrin is for emergency use only because I have been down the Afrin dependency road and the withdrawal road...it's ugly and I don't want to go there again.
Fortunately my nasal congestion issues are very minor and very rare. So I really don't have much to offer since I don't have a lot of experience with it except when addicted to Afrin but that's another story.

[khauser]

(sigh)
And people get upset when the community steps in to fill the gap a DOCTOR leaves.

roslynr, do you have the option to change doctors? Although you have made HUGE strides due to the efforts of Pugsy and robysue, it's pretty clear that a CRITICAL member of your team is failing to fulfill their purpose. Your SLEEP doctor doesn't even understand when an ASV is useful (apparently doesn't even understand what it is)!!!! I can think of no better reason to fire that idiot.

Pugsy and robysue can take this only so far ... the limits are on the system you have. With the prescription you currently have the best you can do on your own is a BiPap. You currently have an APAP ... the BiPap *might* help, but if it doesn't you will need an entirely different prescription.

The problem with the current sleep doctor means you won't even be able to TRY a BiPap (which almost all insurance companies would require before funding an ASV as they are DRASTICALLY more expensive). I really hope you can get the medical care you need. By all means keep working with the people here. I really admire what these two do for us, but you would really benefit from a proper sleep doctor to fully control this.

[robysue]

Pugsy and robysue can take this only so far ... the limits are on the system you have. With the prescription you currently have the best you can do on your own is a BiPap. You currently have an APAP ... the BiPap *might* help, but if it doesn't you will need an entirely different prescription.

Actually you need a different prescription for a BiPAP if you plan on getting it through a DME. (There is, of course, the used grey market for CPAP equipment where you can get a BiPAP without a prescription for a bi-level machine.)

[robysue]

roslynr,

I've looked at the last stuff you have posted to photobucket, but not yet very closely. I have noticed that you are using an O2 monitor and that you are sucessfully importing the O2 data into SleepyHead. But the graphs you posted have the O2 data on one graph and event table and flow wave data are on a different graph. Could you turn off all the graphs in Sleepy Head except for the event table, the flow wave graph, and the O2 graph? I'd like to see when those O2 desats are being flagged relative to the event data.

Next you write:

My problem in the last several days has been nasal congestion that comes on about an hour or two before I go to bed. I don't know why it starts in the late evening. I've tried a ffm but had lots of leakage and so went back to nasal Mirage; it was very hard to exhale and had to exhale thru mouth while falling asleep. I tried Afrin spray last evening but not much help; may not have sprayed enough to be effective. I read on some posts here that a nasal dilator may help and will try that if no other teactics work.

Allergies??? From what I can tell it's been a bad fall for allergies in much of the country and sometimes folks notice the allergies much more in the evening.

As pugsy said, be careful with the Afrin. If you use it more than 3 days in a row you are likely to wind up with problems with rebound congestion.

Ideas to try for the congestion: Saline nasal sprays as needed. A netipot or sinus rinse bottle. (An hour or two before bed is a good time to do it so the sinuses have a chance to "drip dry".) If you can tolerate an oral decongestant such as Sudafed you could take that intermittently on the worst nights. (I can't take Sudafed at night because it keys me up and keeps me awake.)

P.S. My pulmonologist (also sleep doctor at Kaiser) wasn't very interested in hearing about the CAs. I mentioned the possibility of an ASV device and he asked me what that was. When I said AdaptoServer he said that all the machines were just variations on a theme. Think he's much more interested in pulmonology than sleep apnea.

This is just plain sad.

Where you seeing the pulmonologist for some reason before he became your sleep doctor?

Have you been able to show the pulmonologist a printout from Encore that illustrates that the CAs remain a (potential) problem that needs to be properly evaluated by a medical doctor who knows something about Complex Sleep Apnea and Central Sleep Apnea?