Back with more questions after months of cpap frustration

Hello all - i was on here about this time last year ago asking questions, and now could use some more help.

Quick history: Diagnosed with sleep apnea 3 years ago and since then have been trying cpap, mouth piece and anything i can to feel better. 10 months ago i got serious about cpap again, posted some results here on the forum, switched to P10 nasal pillows, and got an apap range dialed in at 10-13cm. Got consistent results of AHI <1 for about 8 months, felt like i was sleeping, but still felt tired all the time. Woke up every morning tired and struggled to get out of bed. See chart below from Oct 2015. Finally went to a different sleep doc, he looked at my data and said that he thought i was getting leaks that were causing arousals, so gave me a chin strap and a new nasal mask. I tried that for 2 months and didn't feel any better, but the leak numbers looked better. See chart from Dec 2015. Last week I went back for another sleep study using the chin strap and same nasal pillows. The tech was seeing events, so she kept raising the pressure and got as high as 14cm, then starting getting centrals, so she switched to bipap mode, but no luck. This was a crappy experience btw, woke up a bunch, felt the pressure going up, mouth getting dry, etc. The doc got online about 5am and saw that the leaks were actually going up and had the tech switch to a ffm, but I never got back to sleep with it.

So the recommendation at this point is to try sleeping with a ffm, using the same 10-13 range and see if I feel better. Doc is thinking the mouth leaks weren't getting caught, and were "fooling the machine" into thinking I was not having events. No idea if this makes sense, but whatever, I take home my ffm and am giving it a shot. The first night with it at home went pretty well, but the AHI was higher than with the old setups. The next couple of nights got worse in terms of AHI, but one of them I woke up feeling kind of better. Not great, but like I slept more soundly. Then the next couple I had BAD nights. Felt like I slept deeper again, but woke up feeling like I had before, very groggy and tired. See the last chart from Feb 2015 with the big number of events early in the evening.

So my questions for you all:
1. Does this story about the leaks and the nasal mask make sense? Can the machine algorithms do THAT bad of a job catching events with leaks happening? The data I showed is representative, I didn't just pick a good night. They all show only a few events each night. And that data goes on for months.
2. Any ideas on the erratic results with the ffm? Events going up, with some periods looking pretty bad? Should I just keep trying, its only been a week.
3. Recommendations on pressures? Should I just keep the 10-13 range and see if things settle down, or try a higher max?
4. Other questions I should ask the doc, or things I should try?

Thx in advance for your help, Travis

donewithbeingtired wrote:1. Does this story about the leaks and the nasal mask make sense? Can the machine algorithms do THAT bad of a job catching events with leaks happening? The data I showed is representative, I didn't just pick a good night. They all show only a few events each night. And that data goes on for months.
2. Any ideas on the erratic results with the ffm? Events going up, with some periods looking pretty bad? Should I just keep trying, its only been a week.
3. Recommendations on pressures? Should I just keep the 10-13 range and see if things settle down, or try a higher max?
4. Other questions I should ask the doc, or things I should try?

1. not in my experience, but, you can tell, just go into sleepyhead on those nights, that things looked good, and zoom in on the flow graph until you can see the individual breaths, instead of just the big black fuzz. then scroll, watching your breathing, it takes a couple minutes to scan the whole night, but it'll answer your question. the machine can still tell you're breathing, unless the leaks are truly horrendous, because breathing will cause increases and decreases in flow. easy enough to check.
2. check into mask liners (search here on the forum) they made a huge difference with my ffm use.
3. you're not spending much time at the high end. it's possible that a slightly higher low end might help settle things.
4. I don't have anything, maybe someone else might.

If you can...I personally think you should lock in a fixed pressure of 11 or 11.5. My long term AHI average is 1.0 - 2.0 and it seems that most of my events also come during the first hour. I could never figure out why.

viewtopic/t110445/Misdiagnosis-by-VA-AB ... biPAP.html

Based on my experience, which is likely different than yours (see above)

I had to lower my biPAP pressure settings to 7 and 10
My maximum high pressure duration is set to 4 seconds
My rate of increase from low to high pressure is set to 600 msec
I have my ramp set to zero
Humidity (southwest) set at 6

The lower pressures allows my lung muscles to work in the range of motion they are accustomed to.

7 limits the number of events, but still causes me to use my lung muscles
10 provides enough air to overcome the extra energy my lungs need to overcome the 7 constant pressure to breath comfortably

When I need to due to congestion, I can still sleep comfortably without biPAP, but apneas return.

Because I normally breath shallow, I inhale often for more than 4 seconds before exhaling. It shows up as me stopping breathing because of how they detect interrupted breathing; more than 10 second cycles is an event. But it is just me breathing very shallowly.

So the original max high pressure duration setting of 3 seconds was just not long enough.

I normally breath shallowly and the higher pressures bother me, my lung muscles just are not accustomed to moving such a large range. Previous to CPAP/biPAP I normally would breath shallowly and slightly gasp frequently even during the day; and still do.

This worked for me, but your case is likely completely different.

I went back and looked at the data from this summer and fall with the nasal mask, and DID see flat spots in the flow chart that were not flagged by the machine. No idea why this would be, but will go look at some more to see how prevalent it was. Does seem to make sense though that the reported AHI looks so low and I still feel like crap. But why would it do that with the nasal mask and not the ffm?

Last night I ran the pressure at 10-16 just to see what would happen and the 95% number was 13.5. I felt like I did not sleep very deeply, and woke up tired this morning as usual.

What I don't understand is why I got these periods of apneas...shouldn't the machine ramp the pressure to cut these off after the first one? I would rather not run the pressure at 13.5 or 14 all night when I only need it for these few periods. Maybe that is when I am on my back and/or in REM?

Anyhow, appreciate some guidance on this.

You are NOT running your pressure at 13.5-14 all night. It barely hit 13 for just a couple minutes during the night. Your 95% pressure was 13.5 which means that 95% of the time your pressure was at or BELOW 13.5%. Your median pressure was 10. It's possible that the changing pressures are disturbing your sleep. Try a fixed pressure.

vapatient wrote:Based on my experience, which is likely different than yours (see above)

I had to lower my biPAP pressure settings to 7 and 10
My maximum high pressure duration is set to 4 seconds
My rate of increase from low to high pressure is set to 600 msec
I have my ramp set to zero
Humidity (southwest) set at 6...
This worked for me, but your case is likely completely different.

none of that is applicable to the OPs issue.

donewithbeingtired wrote:I went back and looked at the data from this summer and fall with the nasal mask, and DID see flat spots in the flow chart that were not flagged by the machine. No idea why this would be, but will go look at some more to see how prevalent it was. Does seem to make sense though that the reported AHI looks so low and I still feel like crap. But why would it do that with the nasal mask and not the ffm?
...
What I don't understand is why I got these periods of apneas...shouldn't the machine ramp the pressure to cut these off after the first one? I would rather not run the pressure at 13.5 or 14 all night when I only need it for these few periods. Maybe that is when I am on my back and/or in REM?

flat spots have to be 10 seconds or longer to count, officially. you wouldn't want the machine springing into action every time you sighed, took a deep breath, turned over, scratched an itch, etc...

nasal masks and ffm can affect jaw placement differently, ffms tend to push some peoples jaws back, and that affects their throat geometry, and their apneas.

respironics machines like yours tend to take things a bit slower as far as pressure increases go, whereas resmeds are more aggressive. that's part of the reason I suggested a little higher LOWER pressure.

Dang... your Avatar looks like a guy I arrested a few years back!

Sheriff

Sheriff Buford wrote:Dang... your Avatar looks like a guy I arrested a few years back!

you arrested DB Cooper??!?!

Thx for the replies.

Vapatient, no idea what you're talking about. if you've got something for me, you're going to have to get a little more specific.

LSAT, i understand what 95% pressure means. you mistook my meaning, i was saying that if the machine can't keep up with the apneas and adjust quickly enough, then i would be looking at a 13.5 fixed pressure. but that's not appealing when i only need it for that short period of time. i get it that you are advocating a fixed pressure, and may try that if i can't get a handle on why this ffm and pressure range combination doesn't seem to work...there are still too many apneas showing up....

palerider, i understood you meant to raise the MIN pressure in your original reply. i wasn't ignoring you, just wanted to give the MAX a little more room first to see how far the machine would try and go. tonight i am going to try a little higher on the MIN with the old lower MAX and see what happens.

i'll try these suggestions for a week or so and see what i get.

i am heading to taos for 5 days to do some skiing, so am going to try and relax, enjoy the sunshine, and not worry about all this until i get back.

and yes its db cooper. i live here in portland, and love the fact that he got away with it...probably.

donewithbeingtired wrote:Thx for the replies.

Vapatient, no idea what you're talking about. if you've got something for me, you're going to have to get a little more specific.

he didn't, what he was talking about was completely different from your situation.

donewithbeingtired wrote:palerider, i understood you meant to raise the MIN pressure in your original reply. i wasn't ignoring you, just wanted to give the MAX a little more room first to see how far the machine would try and go. tonight i am going to try a little higher on the MIN with the old lower MAX and see what happens.

no worries. I was just repeating in case the thought got lost in all the other suggestions.

i'll try these suggestions for a week or so and see what i get.

donewithbeingtired wrote:and yes its db cooper. i live here in portland, and love the fact that he got away with it...probably.

I've got a very good friend in Portland, she loves the mountain biking out there, and in Bend.