Need some BiLevel expertise

[SteveGold]

Long story short, I switched myself to a S9 VPAP Auto eight months ago after two hellish years on CPAP/APAP. Since then I’ve been cycling through different settings to find something that’s therapeutic and comfortable. My sleep is much more consistent on BiLevel than it ever was CPAP/APAP. I generally know how I’m going to feel the next day, and I haven’t had that kind of predictability since university. The problem is that on my best days I still feel like garbage, despite some improvements in my energy and concentration: headaches, confusion, frazzled, impaired memory. So instead of teetertottering between brain death and feeling functionally crappy, I’m now predictably crappy.

My progression looks like this:

Before CPAP (10 years): Excruciating mental pain all the time. Worse than death.
CPAP/APAP (2 years): Excruciating mental pain half the time. Worse than death.
BiLevel (8 months): Consistent headaches, brain fog, poor concentration, but fewer “write off” days. Arguably better than death.

At this point I’m not gaining any more ground and I’m out of ideas. Hoping some folks more experienced with the idiosyncrasies of BiLevel can spot something I’m missing or point me in the right direction.

Here’s what I’ve figured out so far:

- AHI is usually 1.00 or under, mostly centrals lasting 20 seconds. No correlation between AHI and how I feel. I’ve hit 0.0 and felt brain dead, or felt pretty good at 2.00. This holds true on any settings.
- I’m functional on EPAPs as low as 5, but cranking it up to 9 gives much more energy and focus.
- My flow limitations and comfort improve as my pressure support increases. PS 5 seems to be a sweet spot.
- Putting that together, I tried 14/9 – 9 to give me some energy, 14 to make it feel more comfortable. It largely worked: I hardly notice any pressure when I exhale. But 14 is much higher than I’ve ever attempted, and my leaks have gone through the roof from an average of 9 to 32 (95 per cent). Seems to be mouth breathing, although my Aloha and Swift FX have also started whistling audibly at the contact points and adjustments don’t help.
- I’m also waking up a few times a night, where I easily slept through the night on lower, less effective pressures.
- Surprisingly, despite the massive leaks and multiple arousals, I’m sleeping better at 14/9 than I did at 12/7, 10/6, 10/5, 9/5, etc, or any settings on CPAP/APAP. Which is probably more a comment on the effectiveness of those lower settings than anything else.

I have many tactics for dealing with leaks, none of which are working. Taping works for me at lower pressures, but not now. My cervical collar has wiped out leaks completely before, but at my current settings I just seem to fight the collar's encouragement to keep my mouth closed. I have a Quattro FX that I use very occasionally to train myself out of mouth breathing – in the past wearing it for a couple of nights has convinced my brain that there’s no escape from the pressure, so it stops trying to vent through my mouth. Now, no dice. I only use the Quattro as a “training device” since I’ve never been able to get it to seal properly or sleep comfortably with it.

Of course I can also drop my pressures back, but I’ve explored the lower pressures in many variations and the results are worse. I did try dropping back to 13/8. The EPAP was too low and worsened my headache and cognition. Then I tried 13/9. The pressure support of 4 was too narrow and I felt like I was hyperventilating. Then I tried a compromise: 13.2/8.6 for a pressure support of 4.6 without driving my EPAP too low or my IPAP too high. Same problems: leaks just as bad as before, still waking up throughout the night, headaches, general crapitude.

Usually I’m happy to run my little experiments and find my own way, but I really don’t know what to try next. I need a high minimum pressure to see any improvements in my cognition and energy level, and wide-ish pressure support to make it tolerable, but the resulting IPAP disturbs my sleep. Trying to adjust everything a bit lower just kicks me back into hell.

I feel like I’ve cornered myself into settings that appear to be "optimal" without giving me my brain back. It's certainly possible that this is as good as it gets for me, but I hope not.

My sleep hygiene is immaculate and my sleep studies haven’t shown anything else that needs addressing. Otherwise healthy.

Would appreciate any advice.

Pertitent details:

Switch between Swift FX, Aloha, P10
EasyBreathe: On
TiMax: 4
TiMin: 0.3
Rise time: .300
Humidifier: 27 degrees, humidity 4.0

Some screenshots below. My PC display limits the number of rows I can capture, so I've tried to be economical with the information I've included.

14/9:



13.2/8.6:

[Pugsy]

These values aren't particularly helpful...the calendar or the pie chart...turn them off and include the AHI breakdown on the left side.

On the right side...snore graph isn't useful. Flow limitation graph might be more useful.

Your leaks are pretty bad...bad enough that they could be a factor in disturbing sleep which might be causing arousals and might be causing the centrals. During the times where it is over 35 L/min the machine might be missing flagging events but in all honesty I doubt that a huge number (if any) are missed.

I think something else is more of a factor than the handful of events that might be shown or missed.
The flow limitation graph might be useful to see.

Do you take any kind of meds for any reason?
Do you have any other health issues of any kind?

[RubySnooze]

Pugsy, is there a doc in the files, or a good thread that gives instructions/suggestions for finding the best bilevel/asv settings?

Thanks!

[Pugsy]

Pugsy, is there a doc in the files, or a good thread that gives instructions/suggestions for finding the best bilevel/asv settings?

I think I have the ASV titration guides for both brands but I think they are designed more towards dealing with people who have really significant central issues or how it is done in a sleep lab.

this one appears to be bilevel in a sleep lab
http://www.resmed.com/us/dam/documents/ ... lo_eng.pdf

and this one for the ASV Respironics titration
http://www.isetonline.org/yahoo_site_ad ... 190318.pdf

I thought I had a similar ResMed ASV guide but I can't find it but the basics are going to be pretty much the same....EPAP to suitable minimum to deal with the obstructive stuff and IPAP available to a range that will deal with the centrals if/when they pop up.

There are probably some good threads that also discuss it but I didn't bookmark any.

[RubySnooze]

Thank you! <3

[SteveGold]

These values aren't particularly helpful...the calendar or the pie chart...turn them off and include the AHI breakdown on the left side.

On the right side...snore graph isn't useful. Flow limitation graph might be more useful.

Your leaks are pretty bad...bad enough that they could be a factor in disturbing sleep which might be causing arousals and might be causing the centrals. During the times where it is over 35 L/min the machine might be missing flagging events but in all honesty I doubt that a huge number (if any) are missed.

I think something else is more of a factor than the handful of events that might be shown or missed.
The flow limitation graph might be useful to see.

Do you take any kind of meds for any reason?
Do you have any other health issues of any kind?

Thanks Pugsy. Some dates below, but with the breakdown and flow limitation more visible. My FL line used to be quite ragged on CPAP, and correlated very closely with pressure changes when I tried APAP (any time my pressure went up, FL went ragged). It's improved a lot since I made the switch to BiLevel. The sustained leaks could be obscuring some events, but I agree that it's unlikely (my events have always been quite low).

No medication except the occasional aspirin or ibuprofen, and no other health issues I'm aware of. CPAP is the only thing that improves my sleep at all, but I seem to have hit a wall in terms of what it does for me.

Sometimes these things can't solved, but I appreciate you taking a look.

14/9:



13.2/8.6:

[Pugsy]

The flow limitation graphs are unremarkable.

About the FL graphs when using APAP...flow limitations are one of the things that the apap algorithm is supposed to respond to so the fact that you saw more pressure when the FL graphs were more ragged doesn't surprise me. The machine was responding with more pressure to the increase in flow limitations..simply doing its job.
Your flow limitations now are markedly reduced because you are using a more constant pressure average up in the neighborhood where it holds the airway open better and thus prevents the airway collapses that the flow limitations are a warning sign of.
Similar results could likely have been obtained if the APAP minimum pressure was higher but maybe then it wouldn't have been as comfortable as the bilevel pressures.

The only thing that stands out on these reports that maybe needs work is the leaks. While you don't spend an awful lot of time above 24 L/min it might be possible that the leaks are disturbing your sleep at some level.
Otherwise you look good on paper anyway.

Oh...maybe you just need more hours of sleep. I find that I notice a rather remarkable difference in how I feel between 6 1/2 hours of sleep and 7 1/2 hours of sleep. That extra hour really seems to make a big difference...but getting that extra hour isn't always so easy.

[SteveGold]

Interestingly, my FL is equally good at lower ranges (like 10/5). It seems to track very closely with my pressure support independently of the pressure level (the higher the PS, the better). But I don't feel as good at lower ranges.

I'll keep working on my leaks. I might try some higher pressures on straight CPAP to see how that goes. It's been awhile.

Thanks for your thoughts.