Cheyne Stokes questions and my graph

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zeropoint101
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Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 4:03 am

Ok.. total noob to my Auto PAP machine and sleep apnea(well I know the basics, but I just got diagnosed and got a machine so I'm new to being a patient). I'm trying not to be the guy who knows just enough to be dangerous, but.. I wanna ask anyway. I've been reading up on everything I can. I had a good AHI the first night(2.9) as opposed to my 25.1 AHI on my test. The 2nd night was 17, and the 3rd was 28 and I have a lot of "Clear Airway Apneas" which I've read most likely means central apnea. On reading about central apnea, I've been reading about Cheyne-Stokes breathing and a large chunk of the waveforms in my flow rate look like they were copied straight off the pages where I'm reading about Cheyne-Stokes with example waveforms. Can someone tell me what they think of my graph here in regards to Cheyne-Stokes? And if I DO have that, does it mean I actually have a nervous system problem? Or is my body/brain just adjusting to the cpap or what? Image

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sun Sep 14, 2014 6:50 am

No, it doesn't necessarily mean that something horrible is going on neurologically. It could simply be that you are one of a small percentage of people who develop Complex Sleep Apnea as a result of cpap therapy.
Your AHI the first night was less than 3 so we know that you likely didn't have this pattern the first night of therapy but it's here now and I suspect the AHI is high with a lot of Clear Airway (central) events. I don't know if this is a result of changing the humidification mode or would have happened anyway...more detective work is needed.

I responded in your other thread with some questions and a request for additional report images.
Let's pick one thread and keep all the discussion in one thread if we can...this thread or the other ...doesn't matter to me but will be better to just use one.

Now I am NOT saying that you for sure have CompSA at this point. I am just saying this graph above sure looks suspicious and bears watching. It's not something that the humidification change would normally trigger but if it did we might want to change it back and deal with the dryness in some other manner.
More on that later.

But just in case we are dealing with Cheyne Stokes Respiration brought on by CompSA triggered by the cpap machine you might want to watch this video
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 7:58 am

Ok, I think we should keep it all in this thread since the topic is more about my graphs here than the other one.

Here is the image. Let me know if I'm missing something. I took out the AHI graph, but in case it matters, it did fluctuate quite a bit through the night anywhere from 0 to 7. If you did want to see that, I can add it in my next reply. If I zoom in on the waveforms also for the first night, a very few places have that similar wave, but without much pause in between, just the gradual up to a peak then back down form that I see in Cheyne Stokes examples, and it's only a very few places.

I haven't been able to sleep yet tonight... or today I guess. I'm still up and going to try again here in a bit. I have severe insomnia as well and sleep very strange hours sometimes. So if I don't respond til later tonight, that's why. I should also clarify, it isn't exactly three "nights" that I have slept, but more like 3 sessions. I slept normally the first night from about midnight until 10 something am, the night of the 11th. The 12th I slept from about 9pm to 4am, and went back to bed around 1pm, thinking I was taking a nap for a couple hours but ended up sleeping until 830pm or so - part of why I haven't been to sleep tonight/this morning. And ignore the 10th that it shows I have data for. I didn't even have the machine yet, they must have turned it on for a few minutes at the supply place. This graph was the first night I used the machine.

I have a bunch of questions, but I'm very loopy and tired and I also don't want to write a gigantic novel in here before understanding this more. But one I'd like to ask. You say that this situation may be "as a result of cpap therapy". Why do you think it's this as opposed to just being there before? I've had major sleep problems for years. Is there something I said that made you think it's brought on by cpap rather than already being there?

I've already changed the humidity back to the SYSTEM ONE mode that auto adjusts for room temp/humidity to see if that helps since I slept better that way the first night. If there's something I forgot to answer, let me know.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 7:59 am

Oops, I did the picture wrong. Right one coming up.

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Re: Cheyne Stokes questions and my graph

Post by Julie » Sun Sep 14, 2014 8:05 am

You can hit the 'X" (within certain amt of time after posting) to delete your note.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 8:06 am

Here is the correct picture. I think..? And my model number is REF560P. Oh, and the leak around 4am was me taking off the mask when I woke up briefly but leaving the machine on for a few because I wasn't sure if it would mess up the data.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 8:09 am

Thank you, Julie. I'm not seeing an X anywhere though. Where should I look for it? I probably won't get back to it in time this time, but it would be nice to know either way.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sun Sep 14, 2014 8:25 am

You won't see the X on your most recent post if someone has replied after it. The X is for deleting a post but it goes away once someone replies after it. You can edit though even if you can't delete.
No big deal. The AHI graph is a per hour graph for the AHI and I don't really need to see it as I can get a good enough idea what is going on by looking at the Events graph. For me the leak graph is more important. Gotta make sure that leaks aren't a problem before we start worrying about the other stuff.

You can also turn off the pie chart and that will allow some of the useful statistics numbers to show up on the left. The pie chart isn't particularly helpful in this situation and sometimes the statistical numbers are helpful.

Let's add your equipment to your profile. It will help us if we can see at a glance what you are using. Various models of machines offer different options so it helps if we know about what you are using.
wiki/index.php/Registering_Equipment_in_User_Profile
Since you have a PR S1 model 560 machine then you have a 60 series machine and this would be your correct equipment choice
For machine....PR System One 60 Series Auto CPAP machine
For humidifier...PR System One 60 Series Heated tube humidifier with heated tube...even though you don't have the optional heated tube/hose at this time ..which BTW you might want to consider asking your DME for. It's an option that also requires a different lid and power supply.

When you get a chance...get me that report that above CSRish looking graph goes to.

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Re: Cheyne Stokes questions and my graph

Post by palerider » Sun Sep 14, 2014 1:04 pm

I find it better to turn off the calendar on the left, that bit's totally useless when looking at a day's stats.

(click the little ^ by the date)

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 4:15 pm

Hi. Thank you, palerider. I turned off the date for my new screenshots.

Pugsy, I added my equipment to my profile and here are two screenshots. The first is my first night, but with the pie chart turned off so you can see the statistics, and the second is the full view of the night the CSRish graph goes with.

Also, I was still curious what makes you think this was brought on by the cpap as opposed to just being there before treatment(I mean if it even turns out to be anything). I did think of one reason you might think this and figured it would be good to tell you anyway. I didn't do a study in a lab. I just did a portable home study, which was just a strap around my chest, a tube under my nose, and an oximeter. So I didn't have an EKG or EEG or any of whatever else they do in a full in-lab test. It saved me something like $1000 doing this, but I'm hoping I don't have to do one anyway now. Anyway, is that why you suspected it was caused by the cpap if it is ComplexSA, because you assumed the lab would have caught the CSR if it was there before?

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sun Sep 14, 2014 4:46 pm

zeropoint101 wrote: I just did a portable home study, which was just a strap around my chest, a tube under my nose, and an oximeter.
The strap around the chest is to help measure breathing effort which is supposed to help distinguish between central apneas and obstructive apneas.
If there was no mention of centrals during the home study...assuming that the study was accurate...then the centrals have to have come about after starting cpap therapy.

Did you have an in lab sleep study where they titrated you to the desired pressure or is this APAP machine being used to find the appropriate pressure?

Do you have copies of the sleep study? Any mention of centrals?
An in lab titration sleep study should have caught these centrals if they were related to cpap pressure itself. If you didn't have one then we have to sort of wing it right now.

Do you have a doctor actively monitoring these results? Are you in the US or elsewhere? When is ETA for any follow up to discuss things?

Your first night's report was pretty darn good...this other report is ugly. The centrals could very well be post arousal centrals that go along with the OAs and hyponeas and maybe if the OAs and hyponeas were reduced then the centrals would go away...they are absent from the first night.
The breathing pattern doesn't look like post arousal centrals to me though...at least in that one zoomed in area...it looks like asleep unstable breathing in the CSRish periodic breathing pattern unless you can do that while awake.

First thing...fix the humidity so you sleep better like you did the first night. Take that variable out of things.
Second thing...let's get a nice solid block of time where you know for sure you were asleep and not having a lot of awakenings and time spent on the machine that might fool the machine. It doesn't know if you are awake or not.
Third...let's see if the centrals continue to be present in large numbers when we for sure know you were asleep...then we will worry about them at that time.

Wide open APAP range may not be the best mode for someone who is having centrals that might be related to cpap pressure itself. Might want to rein in that range a bit but let's see another night with better sleep and better humidity and you telling us that you slept half way decently.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 8:05 pm

Ok, I can definitely clarify some of this at least. The possible centrals were definitely while I was hard asleep. As in, it was one the nights I've had for years(which is most of them) where I wake up feeling like I was rufied and I feel like I could sleep another 3 days even though I normally can't actually fall back asleep. When I mentioned that I left the machine on when I woke up for a few, that was only on the very first night where you see the break in flow. That next day, I learned more about how the data gets saved and that it doesn't matter when I turn the machine on and off and I always turn it off as soon as I wake up, probably within 10 seconds.

I did switch the humidity back before I slept last night to the SYSTEM ONE mode, like it was on the first night. Last night my AHI was 13.61, and I had a lot of "clear airway apneas" in the last 2 hours or so before I woke up, same as the 'ugly' chart you saw, though a little less. I was up a few times last night, but I was definitely asleep during the central apnea readings again. I wouldn't at all say I slept good though. Part of that was not being able to get to sleep and not sleeping enough(because I couldn't sleep anymore after I woke up the last time), but I should also tell you that I didn't actually "sleep good" on the first night either. My AHI was good, and I didn't feel as terrible as some nights, but I was still tired and didn't feel refreshed. I was told this was probably just a matter of waiting a week or two for me to actually "feel" better even when my AHI was good though.

As for the strap on the chest, I could be wrong, but I doubt it's anywhere near as accurate as going to a lab, and possibly not at all. It felt a bit cheap, and wouldn't stay on very well, and was just one thin strap. But I don't really know.

I didn't go in to a lab for titration either, and I am in the US in the midwest by the way. I found out from forums and talking to a couple of techs at supply places that it was possible to get your pressure just by using an APAP, so I asked my doc if I could do this and he sent in a scrip for the APAP. A lot of this was about money and the titration in a lab would have cost me another $700, and I was told the APAP method was just about as good... although now I'm starting to wonder about everything I've learned and heard from various sources. My doc is a bit... spacey with some things, and I get the feeling he knows very little about apnea or cpap machines. The prescription he wrote was just to put me on an APAP at 5-20 basically forever. He didn't even say to come back in at any point to review anything. So basically I'm somewhat on my own with all this unless I go through the gigantically difficult task of finding a new doctor, hoping he is any better than the one I have now, and doing that whole dance when I frankly don't trust any of them around here to do anything right.

So what do you recommend from here? I feel really lost with all this. The respiratory therapist basically told me there's no reason anyone on an APAP should ever have to adjust their pressure to a smaller range than 5-20, which made sense at the time, but doesn't seem to be at all right as I learn more, so I'm not sure I trust him to know what to do either.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sun Sep 14, 2014 8:42 pm

Do you take any medications or drugs (even recreational) that could possibly suppress the respiration?

Actually a home study and follow with APAP to find the pressure works well as long as a person doesn't have issues with centrals and for the majority of sleep apnea patients who have plain jane vanilla OSA...works quite well.
The minimum pressure of 5 cm and max of 20 cm doesn't always work so great though even for plain jane OSA. Sometimes that 5 cm pressure is too low and the machine can't get to where it needs to be to do a good job of stenting the airway open and preventing the airway from collapsing (flow limitations, snores, OAs and hyponeas). We don't treat centrals with pressures from cpap/apap machines and the machine won't respond to centrals either. A few centrals isn't a big deal...we all have them from time to time but when they come in large numbers and we see that CSRish periodic breathing we sit up and take notice...at least until someone investigates and determines it isn't a worry.

CompSA development because of cpap pressure is relatively rare (like 10 to 15 percent of people put on cpap) but of course not impossible.
I don't know that is what is going on in your situation. Your OAs and hyponeas are way too numerous which tells us that the minimum pressure isn't sufficient.
All I know to offer is maybe try to fix the OAs and hyponeas with more minimum pressure and cross your fingers that the centrals are more related to possible arousals (you might not remember them) and they don't increase and if you are lucky they will decrease.

You really need to get your medical care team involved though. If you can't get this resolved with some basic common sense stuff you may have to have that sleep study with and without cpap machine that you were wanting to avoid.
Now sometimes people who develop real CompSA from cpap therapy do have it sort of go away with time as the body gets used to cpap therapy and doesn't respond with the periodic breathing stuff. So sometimes they say "give it some time" and it has merit.

I can tell you what I would do if it were me and you can decide what you want to do. I would cross my fingers and try more minimum pressure and try to deal with the known obstructive stuff (OAs and hyponeas and snores and FLs) and see what happens.
If the centrals increase in massive numbers with more minimum pressure then I call the doctor ASAP. If they don't increase in massive numbers then I watch them for a little while. Doctors won't do anything about a handful of nights with ugly centrals anyway. 5 cm is too low...I would try 7 or 8 and see what happens. Might need a little more but I wouldn't go making huge jumps and depending on where the max wanted to go once the machine was in more prevent mode instead of fix it mode...maybe severely limit the max. Sometimes there is a fine line where centrals won't pop up as long as we stay below that fine line.

All this of course is assuming that you didn't have those centrals at home with the home study....we have no way to know for sure at this point.
So that's what I would do...attempt to fix what I know how to fix at this point and see if by fixing those things the centrals get worse, stay the same or maybe reduce.
If they get horribly worse I quit experimenting and see the doctor.

I can tell you with certainty though that the 5 cm min pressure is not going to work...even if you didn't have a central at all.
These machines can't respond that quickly from that low of a pressure when you need higher pressures.
Works great if you only needed maybe 9 or so...but I think you may need pressures at least in the low teens...at least for part of the night...maybe supine sleeping or REM stage sleep as those are when OSA is often worse.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Sun Sep 14, 2014 10:08 pm

Thank you so much for all the help.

I am on Ultram(tramadol) for joint pain and Klonopin(klonazepam) for anxiety/to help me sleep. I had actually meant to mention that. I wondered about it last night because I know Klonopin can sometimes cause brain/nervous system problems over the long term and I've been on it for over 10 years. I could also see the Klonopin maybe depressing respiratory function, though I'm not sure. I don't think Ultram is likely to mess with my brain much, but it might possibly cause respiratory depression as well. That's all I've used since a while before starting the machine. I'm also a smoker. Yes, I know it's terrible. I'm trying to quit since a few months ago when I decided to start dealing with my health problems again and I'm down to about half or less of what I have smoked for a good 15 years, and I'm hoping I can get down to none in another few months, but obviously that will be affecting my breathing alot until I do. But I asked both my doctor and my respiratory therapist how much it would affect apnea and using the machine, etc. and they both essentially said "well of course it's good to quit smoking, but if you have sleep apnea then you'll have sleep apnea anyway and this should still fix it". That's not verbatim, but that was the gist.

Your explanation of the minimum pressure(and maximum) is something noone has explained to me before, and that sounds like it may help. I can almost sort of feel it when I'm obstructed, like when I'm awake and laying around in certain positions, and the 5 just doesn't feel like enough at all to me when I first go to sleep. But every time I asked someone as I was researching this(either people working at medical supply places or labs. I only had a 2 min conversation with my doctor and he was out the door.) about why the pressure range would need changed if it automatically adjusts itself anyway, they all seemed to say that it shouldn't matter.

It sounds like I also need to try and go get copies of my lab results and see if I can tell if there are any centrals on there.

On the pressure settings, what are the actual rules on changing that myself? Going through my doctor, or finding another right away, is going to be a long and frustrating process. Can I get in trouble for doing it? Will my respiratory therapist at the supply place or my doctor refuse to treat or help me if they know I've changed settings myself? Will my insurance be affected somehow for any future tests or charges that go through them?

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Sun Sep 14, 2014 10:33 pm

It would be extremely unlikely that the Ultram is suppressing respiration. It isn't an opiate. I take it myself and have off and on with more on than off for nearly 25 years.

Your insurance company won't care if you change your pressure. Most of the time all they ever even know about your therapy is "are you using it at least 4 hours a night for so many nights so we aren't wasting our money paying for it"

Will your doc care? I don't know but to me I don't see the big deal as he already has it set so it can go to 20...what's the big deal if you give it a little help. It's not like he set it at 5 with no range and you are wanting to set it to 20.
It has to be something that you are comfortable with doing though. I have been doing this therapy for over 5 years and I actually did start out on APAP with pressure too low on the minimum and changed it myself and when I showed the NP (I never saw the doc) she was good with it and said I had done exactly what she would have wanted me to do. I have been in your shoes with the exception of the centrals and I had an in lab titration sleep study and they still didn't get it right.
So while I am comfortable changing things I do understand when new people come here and they are leery of changing things. Don't ever do something because I said to do it. Do it because you understand what you are doing and what you are trying to accomplish and any potential negatives. If you aren't good with handling it on your own...don't do it.
Most of the time no one really pays that much attention when someone is already on APAP with wide open range like yours is.
They look for hours of use and maybe AHI and maybe leak and that's about it.

I don't know much about Klonopin but it seems to be commonly given for sleep problems...and thus I doubt it is known to be a heavy respiratory suppressant. Mostly the respiratory suppressors are the opiates and methadone type of drugs. I have known people on ASV machines for centrals because of Methadone and once they get off the methadone the centrals went away and no need for any cpap machine because they only had centrals in the first place.
And of course the heavy drugs like heroin are major respiration suppressors.

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