Cheyne Stokes isn't always heart related

[sheepless]

a lot of us are here because we gave up on sleep docs, dme's and insurers due to expensive and lousy service. I won't discourage you from trying to get better assistance from the people that OUGHT to be there for us and you may be more comfortable going that route; I hope you succeed at that. however, in 4 years hanging around this site, it's clear to me that in all but the most complicated circumstances, folks do far better finding their own way with help from kind and knowledgeable AB members.

show your charts, including this last daily chart to your providers; it's clear you're not adequately treated.

how did you arrive at your current settings anyway?

do you feel air starved?

your 95% leak rate is a touch high, your flow rate appears a bit compressed and unstable, your flow limitations are a shade high, your minute vent. and tidal volume appear to be low. search the internet for a tidal volume calculator to see what 'normal' should be for you. your pressure was bumping up to max even in the first 4 hours with hardly any events (implying again that pressure isn't the source of your ca). your ca suggests against it but have you tried higher min, max or both? higher should reduce your oa and maybe help with flow limitations. stranger things have happened: maybe you're simply not sufficiently ventilated .

I'd like to see the big guns (more-experienced members) step in at this point to see if you can eke more out of your machine with some different settings.

have you tried a nasal pillow mask? idk about people with physical restrictions, but the resmed p10 for example is really good at blowing through congestion. great mask if you can keep your mouth/lips closed (and there are ways to mitigate that if it's a problem). many people need/prefer humidity. personally, I grapple with congestion whether I use the humidifier or not.

[SarcasticDave94]

Fire the quack I say. Consistently inconsistent CA are back. I'd make a notebook full of complaints and symptoms that are currently untreated. Get a new doctor, one that knows what an ASV or similar machine to treat CA actually is. Literally ask if they know about treating CA and your other issues other than avoidance treatment.

[coldfeet7]

Good idea, SarcasticDave94. If I am well prepared and ask detailed questions they can size me up and decide if they want to take a case like mine.  If it is too much and it scares them off it is just as well as it would be no good for each of us. I have read that ASV is able to step in and help the patient start breathing again in a CA. I sure needed that for an hour last night.

I should clarify sheepless (love the pun). I didn't mean I was going to give up on this group and stop working on it myself with the good folks here, like yourself and others. I am convinced that I MUST be engaged. It is my health on the line. What I am after is making sure that whoever does the lab sleep study integrates well with a Dr that really takes an interest. This board has taught me that titrating on an A10 can only go so far and when AHI under 5 is leaving me more tired than ever, more information is needed, not a prescription.

I got to my settings by starting with the 5-15 range with EPR of 2 from the DME. It would ramp up to 14 and I was struggling to breath, lots of leaks and lots of trapped air on waking. Events seemed to become more frequent the higher the pressure went. I watched several youtube videos (people like Nick from CPAP Reviews and the ever entertaining Jason at LankyLefty27) and they both talk about starting out with pressures around 7 or so to get accustomed to the CPAP. I did that for a while and my OAs weren't always tamed, so I opened up the range again, but that seemed to bring on more events. Jason specifically recommends bringing the EPR number back to 0 or 1 after a few weeks, if you can, because he felt it often causes more problems than it solves. (I hope I am representing them correctly from my memory.).

When I wake up feeling air starved I can resolve it by moving the N30i around until I get good inspiration flow. It is almost as if the nostril openings are misaligned, but it could be I am just dealing with the congestion. It is almost like clockwork, about 3:30 to 4 hours in the congestion and breathing becomes an issue.

I did try 8-12 pressure for a few nights. Some nights it was not too many events and then some nights lots of CA and OA when I got to 12. I would say most of time if I let pressure get above 10 I will see a significant pickup in events.

From what I can gather, at 6' 185lbs, my min. vent should be between 4 and 7 during sleep. I have had stretches, however, where that is between 1.5 and 3 for an hour, yet my SaO2 is mid-90s.  So I am leery of the min. vent. chart. The flow chart is very shallow during that time, so I am wondering if I am breathing through my mouth some and messing up the readings.  Having the O2 ring readings helped me breath easier <sorry> about those low flows.

I found this interesting article on humidification and how it affects sinus congestion. It indicates I was wrong in thinking cool, dry air would reduce congestion. This claims you get a rebound affect from the drying out and tissue becomes swollen, cutting down on flow. So I raised by tube temp to 83 and upped humidity to 5 for tonight. I also ordered a tube sleeve to keep the temperature from dropping and condensing.

CPAP humidification

My immediate goal right now is to master wearing a mask all night, don't let my SaO2 get out of control and don't let pressures go so high that I am leaking all over the place. Without a lab study, I don't really know if I need really high pressures and they come with headaches.

I'll give this thread a rest for a while to free y'all up and I'll report back with some results in a week or two.

Until then, A BIG THANKS EVERYONE.

[SarcasticDave94]

Just so you have the info, part of the reason the ASV worked on CA, and probably what you're referring to above, the ASV is within the medical device group via script code E0471 bilevel therapy with backup rate. The unique ASV algorithm has a part to play as well.

PS if you do in fact get progress on an ASV, request specifically for the ResMed AirCurve 10 ASV. It's identical to my own and it's going to tackle all things Apnea excepting some potential flow limits. But the rest won't have a chance. 4 pressure settings, a mode for operation and your typical humidifier and hose options. Easy enough setup.

[sheepless]

I took a quick look at a couple tidal volume calculators. the ones I saw were to be used for invasive ventilation purposes I think so take this with a grain of salt. nevertheless, the results are consistent with what I would expect. for a 72", 185# male (ideal weight around 174-177#), expected tidal volume seems to be about 466 - 624 mL.

I also looked back farther than your latest chart which reported 280mL. the other 2 I saw were 360 & 400mL. the lower numbers were at pressures set to 7 - 9 cmw. the upper number was with pressure from 5-15 cmw. maybe the 280 was a one-off. 360 & 400 still seem low, but not too far off and maybe you have other conditions that make sense of those numbers.

I've reached the limit of what I can offer; I'm really not sure what to do with this info other than to note that 280 mL (especially) is lower than expected and that higher pressures appear to improve/increase that metric. I don't know enough to even know whether it's that important and it's possible it's just a function of not finding your optimum pressure yet.

I have to punt at this point and hope someone more knowledgeable than me can help you out. it may be possible to get more from your present machine but I'm starting to think you're going to need an asv to see much improvement in your ca and variable breathing. but, you know, I'm just an anonymous guy on the internet with zero training in this stuff.

I'll continue to follow this thread and maybe comment again if I have something to offer. I wish you the best!

[kappa]

It would be interesting to see the latest (March 11) charts including the heartrate and tidal volume graphs (instead of leak rate and Sp02). The number of pulse change events seems high. The flow graph appears to show progressively lower tidal volume (and corresponding lower flow) through the night until 5:20 where it jumps back up, but there's no correlation with SpO2 decrease. It might be informative to zoom in on 1:55-2:00 and 4:55-5:00.

In my case I see a correlation with pulse change and leg movements.

[coldfeet7]

Kappa called and I was very curious about the times he was interested in... so see the attached. I adjusted the scale of the tidal volume chart to make it easier to read (I REALLY wish there was an OSCAR option to have it autoscale based on the range that is selected). In my case, I have large lungs and sometimes I take in a substantial volume and that screws up the scale for the rest of the chart.

Sheepless....   look at the tidal volume!  I am either alien or I am missing something. My heart rate isn't really high, my SpO2 is ok (from the earlier charts) and yet my flow shows very shallow breaths and my tidal volume is bouncing off the bottom. What other thing can be causing a distortion in the readings?  Leaks? Maybe I have teeny tiny air gills that open at night?  

I found a very informative Resmed video (about 12 minutes - Understanding Sleep Disordered Breathing) that helped me understand how SpO2, Pulse, Brain waves (another toy to get?) and the flow graph change under flow limitation, snoring and apnea. It was very well done. I get flow limitation better now and how it can disrupt your sleep without a lot of snoring (my wife very seldom hears me snoring when she is awake and I never waken her). Arousals are the enemy (not just AHI) and they can happen for so many reasons. It requires us to become detectives...

Thanks for the advice on the AV machine ScarcasticDave94. I like Resmed stuff and it would be really nice for it to have my back in those CA storms.

P.S.
I woke last with my O2 ring buzzing as I dropped into the low 80s before I could think to breath. I was laying almost on my back, my mask was totally off (I don't know why - bigfoot?  ;-) and I was in trouble. I REALLY like my O2 ring as a backup in case something is so far off that my SpO2 gets into trouble. I don't mess with the alarms for low or high pulse, though I guess the pulse can go really low AND the SpO2 low (at the same time) during an OA (or CA as well?). I wasn't aware that the heart would keep dropping in that condition. I thought it might try to compensate by increasing the heart rate to give more blood even though it was less saturated (though that would be really hard on the heart muscles in low SpO2).

[kappa]

Thanks... those traces look strange. The tidal volume in the 4:55 trace doesn't seem to align with the flow rate. It makes no sense for it to drop down to zero here (like at 4:58:45). From what I can see this is 2 second samples calculated by the PAP, not something that OSCAR is calculating. For comparison, here's a sample from my trace, where tidal volume responds fairly quickly to changes. 
   
I guess we don't know how well the clocks are synchronized in your trace (between CPAP and O2Ring). In my trace CPAP and movement are within a second and I believe that the SleepU pulse trace is around 10-15s early (I find that clock drift is quite high in these devices, while my CPAP clock loses around 1 second every 2-3 days).

Your pulse change events appear to be drops from your baseline of ~55 down in to the mid 40's and then back up again... (which is different to my PLM related arousals which have a heart rate increase along with hyperventilation).

I have no idea of the significance of any of these observations...

[coldfeet7]

Good point about the drift. I'll try to remember to sync the device and the laptop clock each time I read it. (Isn't it bizarre that the clocks drift that much?  We solved digital time keeping a LONG time ago. I guess the space constraints of the devices leaves no room for a real clock circuit and they are simply counting the clock pulse for the processor.)

I noticed your pulse is in the mid to low 40s and your tidal volume is good and has a pretty quick recovery. Your movement data is really compelling evidence for your arousals. Our exchanges have really taught me to solve the arousals (find the source) for better sleep and quit focusing on AHI as much.

I am attaching another chart with the tidal scale adjusted more to show the details. I am surprised how it keeps bottoming out....  yet my O2 is good. There must be something else for me to be looking at to make it all work. How can I be surviving on tidal volumes that are average 100-120 (adding peak and trough) for such long stretches. Maybe these are the times when my feet get so cold as my heart rate drops?  If I don't wear very warm socks and long johns to bed I often wake in intense pain and a burning sensation. That sometimes translates into dreams of being tortured by an enemy where they are beating my feet....  I am starting to think I have a circulation problem and the low heart rate doesn't help. I take a med that has the side-effect of lowering BP and my heart rate during the day resting is often in the mid to low 50s and I am NOT in shape.

It seems as if one must pay attention to all the factors that effect sleep (caffeine, alcohol, eating late, going to bed at odd hours, medication, etc.) and not just CPAP settings. This might explain why the same settings give very different results at times.

My sinus surgeries 15 and 20 years ago caused me to buy a sinupulse machine (an electronic Nedi pot). Dusting it off and giving the sinuses a good rinse has HELPED! I am going to add that to my routine every couple of days so I can succeed with the N30i.

[kappa]

That appears to be the 4:55-5:00 trace rather than the chart with tidal scale adjusted.

Maybe it's better to focus on Minute Ventilation, which will take in to account different respiration rates (although yours seem quite consistent). My original though of looking earlier in the night was to see if there was similar variable breathing to your CA chains toward the end of the night (but not to the point of being flagged). This does not appear to be the case as your earlier breathing patterns appear quite stable (albeit shallow). It may be worth looking at the period just prior to the start of the CA sequences to see if there's anything different there - you do seem to have some OA and UA flagged there. I think it's worth experimenting with disabling EPR completely to see if that helps...

I fully agree about looking at all the factors... our bodies are very complex systems and there are so many variables that could influence sleep.