One year -- whazzup with these numbers?

palerider wrote: if it were me, I'd set the min pressure to 13 tonight, and max at 20, and see what the data looked like.... but, that's just me

Well I can only speak for myself but the reason I suggested going "fixed" was to eliminate the more "variables" as possible to help figuring out here problem. There was some weird APAP algorithms problems going on like trying to prevent event for no obvious reason, not raising the pressure in hypopneas cluster, etc., etc. I also suspect that her hypopneas are maybe central in nature and going APAP just won't help. On top of that, lot of variation in her AHI from night to night which make it pretty much impossible to follow any change in pressure let alone with variable pressure... It might just be a leak problem as lately discuss but until it's completely figured out we won't be sure. There is also an other reason that is related to her titration results and the fact that she will see a new sleep doc in a few weeks. If she can get at least a week on a fixed pressure of 13 to show to her new sleep doc (that was her titration results but never been put on it... alway wide open...) that might saved her some time on the long run.

Personally I would stick on fixed pressure of 13 and focus on resolving the leaks. Once the leaks are under control and she get a good week of data we might try something else but until then or until she meet with her new sleep doc we should stop playing with the pressure, but that just me!

OSAHell wrote:

palerider wrote: if it were me, I'd set the min pressure to 13 tonight, and max at 20, and see what the data looked like.... but, that's just me

Well I can only speak for myself but the reason I suggested going "fixed" was to eliminate the more "variables" as possible to help figuring out here problem. There was some weird APAP algorithms problems going on like trying to prevent event for no obvious reason, not raising the pressure in hypopneas cluster, etc., etc. I also suspect that her hypopneas are maybe central in nature and going APAP just won't help. On top of that, lot of variation in her AHI from night to night which make it pretty much impossible to follow any change in pressure let alone with variable pressure... It might just be a leak problem as lately discuss but until it's completely figured out we won't be sure. There is also an other reason that is related to her titration results and the fact that she will see a new sleep doc in a few weeks. If she can get at least a week on a fixed pressure of 13 to show to her new sleep doc (that was her titration results but never been put on it... alway wide open...) that might saved her some time on the long run.

Personally I would stick on fixed pressure of 13 and focus on resolving the leaks. Once the leaks are under control and she get a good week of data we might try something else but until then or until she meet with her new sleep doc we should stop playing with the pressure, but that just me!

ah, ok, nevermind me then just as long as she's not listening to avi

palerider wrote: ah, ok, nevermind me then just as long as she's not listening to avi

No problem and your insights are always welcomed palerider!

July 12
Pressure 13/13
Mouth taped

July 13
Pressure 13/13
Mouth taped

July 14
Pressure 13/13
Mouth taped

July 15
Pressure 13/13
Mouth taped



Tried laying in bed for about an hour before I was going to go to sleep, to see if I could coax out any leaks. No go.

July 16
Seventh night on 13/13 pressure.
How's this for crappy sleep?

Hi, Ruby.

I agree with previous posts that the leak is too high; might not enter LL territory for long periods of time, but it's still too high for the pressure you're running at, IMO. Leaks don't *just* affect how well the machine can treat you; they certainly can and often do impact our sleep architecture. When you have to work at getting a decent night's sleep, who wants to be aroused (if not woken) by leaks?

Also, it seems to me that one thing's been overlooked here, and that's your sleep hygiene (good sleep habits). FYI, this might be helpful: http://healthysleep.med.harvard.edu/hea ... oming/tips. In most of the graphs you've posted to this thread, you're apparently going to bed at a really late hour (after midnight most of the time, and sometimes WAY after midnight) and not getting nearly enough sleep.

In my early days, I had a lot of trouble adjusting to the therapy (ripping off the mask during the night, leaks, bad AHI numbers, etc.); even after I resolved most of the issues I had (including following most of the decent sleep hygiene rules), the one thing I didn't put much faith in was the concept of going to bed earlier positively impacting my sleep and therapy. I considered myself a night-owl, and that's just the way it was. I would hit the hay at midnight or later and only sleep for five or six hours, and I was always tired even when my data looked good.

But with the advice I was given here, I forced myself to go to bed between 10 and 11 p.m., and I started sleeping better, longer, and I felt refreshed when I woke up. It's become a very good habit. I usually get between seven and eight hours a night, and it's definitely been worth the difficulties I had in readjusting my sleep schedule. It's made a huge difference for me, and I hope it can for you, too.

HTH

BB, thank you for the informative and helpful post, above.

RubySnooze wrote:July 16

Seventh night on 13/13 pressure.
...
...

Can OP or anyone explain setting an APAP pressure of 13/13? I don't understand such a setting.

tedburnsIII wrote: Can OP or anyone explain setting an APAP pressure of 13/13? I don't understand such a setting.

1...trying a single pressure which happens to be the "official" RXtwhat came out of an in lab sleep titration study. When in auto mode and a moderate range the machine didn't seem to want to go to 13 all that often but figured might as well try what was "officially" suggested. Sometimes the official pressure works and sometimes it doesn't. Mine was way off but when having problems it hurts nothing to try all available options and that's what is going on here. Trying to maybe reduce the events on the chance the events are causing the wake ups but it's a long shot.
2...trying a single pressure to eliminate varying pressures being a factor in leaks and sleep quality (causing those wake ups).
3...with this machine if we switch to cpap mode that turns off the Flow limitation flagging which we would like to have available just in case. I recommend this apap minimum to equal maximum often when people are using the PR S1 apaps so we don't lose that data point. Not important with other brands since it doesn't happen with the other brands.

I think most of the above were discussed earlier in this thread.

The leaks we still are scratching our heads over. Even with taping the mouth and the tape being secure when she wakes up we can't figure out what is going on.
We don't know why the crappy sleep...it may be totally unrelated to sleep apnea...sleep maintenance insomnia doesn't just target OSA patients...it can target anyone.
But since there was some room for improvement on the reports we figured we might as well try to improve things in hopes it would help sleep quality.
Went up slowly to the RX'd pressure of 13 because the increases made for a little bit of discomfort when trying to get to sleep and since her sleep was already fragile we didn't want to add to the problem.

To OP...your additional sizes of the nasal pillows should arrive tomorrow according to the post office. Maybe a different size will be more secure.
Forgive me but I may have already asked this question and I don't have time to go back through the entire thread ....but do you take any meds for any reason?....and do you by chance have issues with arthritis or fibromyalgia like discomfort?
And one more question...have you ever taken anything to help stay asleep?
Thank you for doing the awake leak test for me...I was hoping that maybe we simply had a hole in the hose but it doesn't look like we got lucky in that regard.
I am still scratching my head on how to get the mask to be more stable. That amount of leak even though technically not in large leak territory all that long still bothers me.
Do you use a hose management system of some sort? If not, maybe something to try to help reduce hose pulling on the mask as a culprit.

Thank you, Pugsy, for your response to my question.

I did not get around to reviewing all 101 posts before asking the question. It just seemed to be an anomaly to have such a setting with an APAP, but you
have explained the 'why' and I appreciate it in this instance.

Hi RobySnooze,

How was last night? I'm guessing not good...

Leaks... leaks... leaks??? I'm really thinking that those leaks mess the whole thing up here more than we already think... Even if they don't seem to be high enough most of the time to (theoretically) be a problem for the machine to keep the set pressure, they maybe are high enough to mess up the data we're looking at... Particularly when you hit the 80-90 L/min leak mark. And looking at your past data (Large leak graph in Overview view), The large leak start to come up pretty much every nights since may 29, that was just few days before your started to raise the EPAPmin. And raising the EPAPmin just seem to worsen the large leak % most of the time. I know you tried and switched between few masks in the last few months from time to time but the one thing that was pretty consistant before may 29 was the fact that there was virtually no large leak showing up on the graph since the start of your therapy. Your AHI numbers wasn't good but you didn't seem to have leak problem. Up until June, your average pressure for each month was in the range of 6 to 8 and 90% Pressure in the 9-12 range. But since your APAP didn't raise the pressure much when you were wide open (4-20) and up to (8-20) as discuss before, it was surely easier on your leaks. We might be on a "Catch 22" problem here until we figured out the leaks...

Can you check on the Info Screen of your machine for the Large leak data?
There should be a 1 day, 7 days and 30 days %time number for each. I would like to compare them with Sleepyhead data…

As for your “mouth taping”, can you tell how you tape it? For example, do you use a wide tape horizontally that completely seal your lips or maybe 1-2 stripes of tape vertically that keep your mouth/lips closed but don’t completely sealed them?

Also, if you noted which mask you used every nights for some time, you might look at the Large leak graph in Overview view and compare your %Large leak with the type of mask and if you mouth was tape or not to see if there's a big correlation between numbers and mask/tape setup.

As for the next move with the pressure... I don't think going up in pressure will be of any use/help with those leaks at this point. And you finally got your 1 week of data, even though leaks are not goods… Since you'll be seeing what appeared to be a good new sleep doc in 2 weeks I would do one of the following 2 options until then if I were you: Stay at fixed 13 and try to figured out the leak’s cause and working on fixing the problem. Or lower the pressure to hopefully get some relief (lower AHI) to a fixed 8 for a few night and “lower” the pressure by 1 every 3-4 nights to do some “probing” on your AHI number until you see higher AHI trending. I would stick with fixed pressure for now since your data showed that your machine doesn’t seem to respond well on APAP anyway for whatever reasons. You might also try option 1 for a few nights and go to option 2 when you “have enough” figuring out leaks… Sorry that I don't have better/quicker option for you.

BleepingBeauty wrote:I agree with previous posts that the leak is too high; might not enter LL territory for long periods of time, but it's still too high for the pressure you're running at, IMO.

Also, it seems to me that one thing's been overlooked here, and that's your sleep hygiene (good sleep habits). FYI, this might be helpful: http://healthysleep.med.harvard.edu/hea ... oming/tips

Hi BleepingBeauty,

Thanks for weighing in. Yes, the leaks are killing me. And have worsened over time, which is very frustrating. I really am at wit's end on what to try.

Re sleep hygiene: great article; thanks for posting. Again, not sure where to go with this. I'm living pretty clean in terms of sleep hygiene. I actually start the sleep process way before my Sleepyhead charts kick in. Usually in bed no later than 10:30. Just can't sleep. And then can't stay asleep. Have some health issues that could be impacting this.

Anyway, really appreciate your post. Thank you!