Cheyne Stokes questions and my graph

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zeropoint101
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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Mon Sep 15, 2014 12:18 am

Ok, cool. If the insurance company doesn't care and it's unlikely that the doctor will care, I'm perfectly comfortable doing it myself. My only concern was getting into some kind of trouble by doing it as I know "technically" the doctor is supposed to prescripe a new setting and the supply place is supposed to actually change it. I actually just found an article on apneaboard.com with some specifics about this and that it's perfectly fine to change your own setting, so I guess the worst that will happen is my doctor, who isn't helping me anyway, will get a little irritated, so I'm not worried about it. And also no worries on your part in this... you've been incredibly mature about the way you've given me advice and I'm definitely not just doing it "on your say so", but because your advice makes sense to me and as I come to understand how the machine and the whole process works more, along with the fact that I can see what my pressure has been going up to, I'm perfectly good with making that decision. I'm rather active on some lyme disease support groups and a few other health groups and forums, and it boggles my mind how many people just blurt out advice as if they are doctors and they say it with such authority when so many of them clearly have no clue what they're talking about. So I'm not only impressed but also very appreciative that you've given me good, detailed advice without ever once saying I "should" do this or that, or that "this is definitely what's going on". You haven't given me any absolute black and white answers(which even doctors shouldn't do in most cases in my opinion). You've just given me good information that I can use to decide on my own. So thank you.

Can I ask.. are you a professional of some kind in this field or just a patient who has learned a lot over the years? Just curious.

Also, if I understand right.. if it were you, you would go to 7 or 8 on the minimum as the first change and then see where the max went at that point before limiting the max? Did I understand that correctly? For the first time in asking numerous people, I understand why raising the minimum would matter, but I think I'm actually still confused on why lowering the maximum would matter.. and when I should do it...

EDIT: Another question.. when I first learned about autopap machines, I assumed that the pressure would go up OR down on its own as needed, but the RT told me that it only goes UP on its own, but the only way for it to go down is for you to reset it. I thought this sounded strange, but he stated it as fact. When I look at my Sleepyhead graphs though, the pressure definitely goes up AND down on its own, so... is the RT just flat out wrong?

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Re: Cheyne Stokes questions and my graph

Post by Lazer1234 » Mon Sep 15, 2014 12:44 am

zeropoint101 wrote: Can I ask.. are you a professional of some kind in this field or just a patient who has learned a lot over the years? Just curious.
You get the advice of a living legend, 26210 posts on this forum. Over 13 per day. She is absolutely stunning.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 15, 2014 6:53 am

zeropoint101 wrote:is the RT just flat out wrong?
He's flat out wrong. It can't go up in the blink of an eye and it can't go down in the blink of an eye but it can go clear back down to the minimum if it doesn't sense anything it needs to prevent. In your case it is sensing way too much stuff going on so it never gets happy with what it senses enough to make it down to 5. He's wrong about 5 to 20 working for everyone and he's wrong about it going back down to 5 always needing a turn off the machine. There are some situations where 5 to 20 works but you don't fall in to that situation.

The idea on limiting the maximum is IF (big IF) these are pressure triggered centrals and IF (another big if) we can maybe get lucky and find a pressure that below so and so pressure the centrals don't raise their ugly heads then we just keep the pressure from going past the central trigger point. Lot of big ifs though. First we have to find a pressure that does a better job preventing the events that the pressure is supposed to prevent.

A lot of this hinges on what exactly is causing the centrals and we simply don't know for sure at this point.
If it is pressure...hey, it can be 5 cm just as easily as it can be 15 cm that causes the unstable breathing. It isn't always tied to higher pressures. Sometimes it's any pressure.
zeropoint101 wrote: if it were you, you would go to 7 or 8 on the minimum as the first change and then see where the max went at that point before limiting the max? Did I understand that correctly?
Yes, that is what I would do if it were me.

The maximum...there are times when lowering the maximum so a person uses a small apap range or even an extremely tight apap range or even cpap fixed mode is a better choice for some people.
Some examples of when it might be a better choice to reduce the maximum...if maybe at pressures below say 14 aerophagia didn't rear its ugly head or if below 14 centrals didn't rear its ugly head or maybe simply the variations in pressure disturbed sleep.
Not everyone does well with a wide open range. If that 14 cm line affected things a lot worse than it prevented things then maybe not going to 14 fixes more problems than stopping it from going further up might cause. Snores and FLs are things that will drive the pressure up and those don't always have to be nuked with high pressures. While they are warning signs of the airway collapsing it doesn't mean that they will for sure end up in a full grown apnea event...they just mean it might.
So maybe we have to compromise and let a handful of snores slip past the defenses with a lower maximum if going higher causes more problems than a few little snores might cause.

At this point I have no idea if there is even a magic number where we might get lucky about anything in your situaton. Too soon to tell. All I know for sure is 5 minimum isn't going to be able to get the job done.
All I know to do is try to fix what is obvious to us that they need fixing with what we have at hand to maybe fix and see what's left. Might get lucky. I knew a guy whose trigger was 12 cm for centrals and 10 cm took care of his obstructives decently.
His machine wanted to go to 15 for the snores and FLs but at 10 the snores and FLs were just random flags and weren't present in huge numbers and he slept well. So we used a tight apap range of 9 to 12. His machine wanted to do more to fight the snores but the snores weren't a huge problem even if we reined in the machine so it couldn't go where it wanted to go.

And yes...I did work in the medical field but no, not specifically in this sleep apnea thing area but in an area and manner where I had a good basis for knowledge that helped me understand what's happening here. That coupled with my own peculiar therapy quirks gave me some insight on some common sense stuff. Plus I have never been afraid to experiment in my own therapy because the risk (and I understood what the risk was) is minimal should I have done something stupid.
If you think about it ...it's really mainly common sense stuff anyway. The centrals complicate things a bit but we can usually sort them out sooner or later. You may need a different machine....you may not. Too soon to form an opinion in concrete at this point.

Ideally what we are trying to do here would be done in a sleep lab setting so adjustments and results could be seen more quickly (1 night) but we can do it over a few nights and get a decent idea what we are dealing with. There may come a point where I say you REALLY need to bite the bullet and get that in lab sleep study with and without cpap machine...that would be the best thing to do but we might get lucky doing it this way. It's not ideal but it's worth a try.

Home sleep studies that are limited work great for the run of the mill OSA stuff. The majority of people with OSA have the run of the mill variety that is easily conquered with cpap therapy. There's always some exceptions though and you may just be one of those exceptions.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 15, 2014 7:12 am

I found this old example of one of my old reports. This shows how the pressure goes up and down on its own. The little spikey things that look like saw teeth..those are test pressure probes where the machine test things. Goes up and checks out the waters and then back down to the minimum once it determines that nothing is going on. Your reports aren't showing the pressure probes because things are never calmed down enough. My minimum here is 10 cm....when I first started therapy my RX was for 8 cm but with 8 cm minimum my report looked a lot like yours minus the centrals. At 8 cm my pressure graph was all over the place very similar to yours but once I got the minimum up to where it did a better job preventing the pressure line stabilized. Some nights I never went over 12 cm...some nights were like this where I spent a good bit at higher pressures and some nights maybe I spent 30 minutes at higher pressures.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Mon Sep 15, 2014 7:53 pm

Lazer, thank you for the post. She has been very very helpful.

Pugsy, sounds like you have some fans and you help a lot of people here. It's very nice of you to spend your time doing that and I hope everyone appreciates it as much as me.

I think there were some other things I wanted to respond to from your post, but I wanted to get last night's graph up as soon as possible so I can maybe catch you tonight and see what you think about the changes after I upped my minimum to 7. Some strange things happened. I didn't have many centrals at all compared to the other night where they were bad... but my AHI was much higher, almost 31... also, when I zoom in, I'm still seeing that Cheyne-Stokes type waveform in a number of places even if it isn't registering centrals at those points(or "clear airway apneas" as it calls them). But I had a lot more obstructions and hypopneas overall. All I did was change the minimum from 5 to 7. The maximum is still at 20. I'm also still tinkering with the humidity a little bit, but I still have the SYSTEM ONE setting turned ON. I had the humidity on 2 the first night with the SYSTEM ONE on, but it was pretty chilly in my house. I have since turned my heater on for the first time this season. I had the humidity on 3 last night. I may change it back to 2 again to get everything as close to the first night as possible.

Oh, also, I went ahead and made an appointment with a sleep specialist. I got lucky and got a cancellation for tomorow morning. I was trying to avoid it, but I think it's needed. And I've discussed it with my family who is helping pay for all this and they said if I need to get an in-lab study, then we can do that. But I'd still love your input along the way as I still don't trust doctors much.

So my questions for now... and if you don't get a chance to answer tonight, it's obviously no problem...

First, what do you think of last night's graphs? I'll try to fit my snoring graph in there too. My worst snoring seems to coincide almost exactly with my worst obstructions and hypopneas. With what you said about snoring, I was thinking.. maybe I should lower my maximum significantly tonight and see how I do? What do you think about this and if you think it's a possibly good idea, what do you think I should lower it to? Sidenote - I actually just noticed... I raised my minimum to 7, but the graph seems to be showing my minimum at maybe 6.6..? Is the sleepyhead software maybe just glitchy or is machine not doing what it should?

Second, you mentioned in one of your first posts that you had some thought about the humidity, but you would wait until later to get into it. Can I ask what your thoughts were?

Third, what do you think of the waveforms that look very much like CSR, but aren't registering as centrals. I'll include a closeup of those.

I'd like to go into the specialist as informed as possible, and if I can make any positive changes tonight, maybe that would be helpful to her. I have already heard she is a bit arrogant and I would prefer if she would make some attempt to see if this machine can work for me instead of just throwing my into a lab test with no thought because she wants to start fresh. Anyway, here are the pics

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 15, 2014 8:20 pm

Well...that's one ugly report. It's good you have an appointment tomorrow. Keep it.

Your pressure is at 7.0 but the scale doesn't show it. If you drag that graph and make it taller I think you will see the correct number.

I think the bulk of the OAs and hyponeas are related to large leak. If you look at the time in large leak (shows on the events graph) it pretty much corresponds to the ugly OAs and hyponeas. When leaks are bad the therapy pressure is ineffective and the machine gets easily confused with what to call what it is sensing. We can't trust the data to be 100% accurate. It's possible that centrals got called hyponeas...we just don't know for sure.
We know it was ugly though.

I don't know how much of an impact changing the humidity again may have impacted things. You know Science 101...keep the variables to a minimum so that if you see a change you know what caused the change. I have never seen changing humidity do this though.
I can't remember what I was going to say about the humidity..damn it. I just reread everything to see if it would jog my memory but it didn't. Maybe I was going to mention the heated hose option. Scratching my head here.
I do know that I was having trouble understanding what you were trying to accomplish.
Is the hose still wrapped? Which mode are you using and at what setting?

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 15, 2014 8:26 pm

What were your humidity settings the very first night? What was wrong with it? What did you change it to?

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Mon Sep 15, 2014 9:39 pm

Oops. Nm about the pressure not being 7. It wasn't a problem with enlarging it. It's the fact that each line does not represent exactly one unit.. which I find a bit odd, but yeah, the pressure IS at 7, so ignore that comment I made.

The first night I had the SYSTEM ONE humidity turned on, and set at 2. The only problem at the time was that I woke up with a really dry mouth(not a big deal if the humidity is causing bigger problems). I also noticed that only about 1/3 of the water was gone. The RT had told me the water probably wouldn't last much more than 10 hrs or so, so I found this strange. He happened to call around then and I told him about the dry mouth and the water. That's when he explained about the system one setting and had me change it and wrap the tube. The next two sessions(the really ugly ones with lots of centrals) were with the system one setting OFF, and the humidity at 3 with the tube wrapped. That's when I first posted my graph and we started talking. Before the 4th session(and ever since), I had already turned the system one setting back on AND turned the heat on in my house. And the tube has been wrapped ever since the morning after my first night. My humidity was set at 4 last night, not 3. I was wrong before. With it being so cold in my house, I basically was getting very little humidity on that first night, and much more ever since then no matter how it was set. Maybe that's what I need to change tonight is go back to low humidity?

I did notice the leak, but wasn't sure how bad that was or what to do about it. The leaks and snoring both correspond almost exactly with each other, and the leaks/snoring both also correspond almost exactly with pressure changes and bad events. So... chicken or egg situation... I wonder if I am snoring because it's leaking, or it's leaking because I'm snoring and the snoring is moving the mask around or something. Sigh. This is so complicated.

I'm definitely keeping the appointment even if I wake up with an AHI of 0, and feeling like benchpressing cars. I want to have a doctor I trust on my team. But it would sure be nice if I could sleep better tonight. I feel like total crap today.

So here's what I'm thinking... I had a good amount of leaks the first night too, and snoring, AND my min. pressure was still at 5 then. The only difference I'm seeing that night is because it was cold in the house, I was getting barely any humidity. Oh, also I believe my mask was actually looser as I tend to keep tightening thinking it wills stay on better, but maybe that's not so good. So I think I should put the humidity at either 1 or 2 tonight, loosen the mask a little, and maybe even lower the pressure back down to 5 to try and recreate the variables of that night. Or maybe just lower the humidity and not the pressure - I do understand the importance of changing only one variable at a time. What do you think? If it was you..

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Mon Sep 15, 2014 10:08 pm

I would attempt to recreate the settings of the first night. Other than your being dry...it wasn't bad and we can fix dryness in better ways than changing the humidifier to Classic mode and wrapping the hose.

What did you wrap the hose with when you wrapped it?

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Mon Sep 15, 2014 11:14 pm

The RT said to just grab an old pair of sweatpants or something similar to wrap it. I used a towel, cut it into strips and duct taped it around. I've been using biotene, which helps a little maybe but I can't tell much yet as it's only been a few days and I've had the humidity up. So I think I'll just change everything back to how it was the first night then. I may just take the wrapping off too.

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Re: Cheyne Stokes questions and my graph

Post by Pugsy » Tue Sep 16, 2014 6:47 am

Now I remember....
Heated hose option...it will allow greater customization of the humidity to be delivered and thus offer the greater chance of reducing the dry mouth. The dry mouth often is mouth breathing and even with the full face mask it can happen. These humidifiers can do a good job with hydrating the tiny nasal cavity but not so good of a job hydrating the oral cavity because it is much larger and contains different types of cells to absorb the moisture.
Plus some people's mouths dry out easier and faster and worse than other people doing the same amount of mouth breathing or maybe no mouth breathing if meds are involved.

The heated hose allows for higher humidity settings without having to breathe in sauna hot air. They don't get that hot.
The 60 Series starts with room air temp and a setting of 1 on the temperature setting only adds 4 degrees to the bedroom air temp and you can use the max humidity setting without having to add a lot of heat to the incoming air if you don't want to.

Without the heated hose the humidity choices are limited. The default is for the new system one humidification mode which doesn't use as much water and sometimes even at the maximum setting isn't enough moisture for some people. It doesn't use much water in an effort to prevent rain out.
When we turn it off the machine goes back to Classic Mode for humidification which is heat only to the water. This is what we used for years before the heated hose came out. Just add more heat to the water so the air above the water in the chamber could warm up and absorb more water...works great until that moisture laden air travels down the long hose and starts to cool and when it cools to the point that it can no longer retain the moisture we get rain out (condensation in mask or long hose) which is highly annoying. In the past we had to insulate the long hose in an effort to prevent the cooling. That's why the tech suggested you wrap the long hose in some fleece. That's what we used to do if we wanted more moisture in the air coming to the mask and didn't want to reduce the moisture. It was pretty much the only way to prevent rain out unless we went with a stand alone heated hose.

Now with the heated hose we no longer have to wrap the hose (called hose cozy) and it would be a better choice for someone who wants more moisture but likes a colder bedroom (that would be me so I have lots of experience with hose cozies and rain out and now thankfully heated hoses because my nasal mucosa prefer high humidity).

There is an upgrade kit available for your machine so you can use a heated hose and have better control over humidity delivered and temperature. So you could use the maximum humidity that the machine can deliver in an effort to help with the dry mouth and yet not have to use sauna like temps.
While I can't see the change after the first night of going to Classic Mode as being a catalyst for those centrals....nothing is impossible until proven otherwise. Assuming of course that you didn't block the mask vent holes...

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Wed Sep 17, 2014 12:59 am

Ok.. so I think I've calmed down enough after my appointment this morning to actually try and be a little rational now since my specialist visit this morning. As soon as I mentioned that I've learned a few things on my own, she smirked at me in that often arrogant doctor way and shut down from that point to any "actual" conversation, as opposed to her just talking and me shutting up. She flat out lied to me and said "We don't have the equipment here to read your data", and by the end was telling me that probably the reason I still feel drugged in the morning is because I take 2mg of klonopin at night(even though klonopin never did that to me for the first 5 years or more, and it only lasts 6-8 hrs at the most and for me, 2mg is a pretty small dose.

Oh, sidenote, thank you for the info on the heated hose. I'll comment on some thoughts about that further down.

So.. I'm much better than this morning, but I'm still almost feeling like giving up on this completely, taking back the damn machine, and just.. I don't know. I'm just damn frustrated. It seems like every "professional" I've dealt with either doesn't care, is completely incompetent, or is purposely misleading me. I've already known my main doc is a spacecase before any of this, and it's been clear through this that, best case scenario, he just doesn't know much about sleep apnea other than the simple basics. My RT has clearly already proven he doesn't know what he's talking about, as I described to you before, and now this specialist...

So, in attempting to not just give up, a few questions if you have time.. although I feel like I'm just overloading everyone I talk to with questions, so if this is getting bothersome, I certainly do understand. And that's not sarcastic. I really just feel like I'm annoying and overwhelming everyone with this. Anyway, if not, then here goes...

As I read through a lot of other posts, it looks like most people go to their DME and are able to try on various types of masks and sizes. My DME seemed to only have one kind of full face mask, and when I asked to try a different size he said verbatim "No. Every mask I open is useless after that. I've been doing this a long time, and this is the right mask and right size for you." Does this seem right or normal to you?

I tried putting my setting back to where they were the first night and it hasn't helped. I do get the feeling that, overall, maybe, I might be a person who has a higher AHI when my humidity is higher(I've since read that a few people have this problem), but even putting on 1, I'm still at an 18 AHI.

Next question is about leaks - I'm thinking this could possibly be the key. As I'm looking at my graphs and understanding them a little more with each thing I learn, I'm noticing a trend that basically ALL my pressure changes, and ALL my events, AND my AHI graph, all seem to follow almost exactly the same ups and downs as my leak graph. If my leaks are low, my AHI and events are fine. If my leaks are high, my AHI and events are high. I don't really understand the difference between "total leaks" and "leak rate", but everything I mentioned seems to follow the total leaks graph almost exactly. Any possibly thought on this and what I could try doing about it? I don't know if I'm opening my mouth wide enough to go down below the mask while I'm sleeping, or if the mask is just shifting and leaking out the sides or top, or what...

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Wed Sep 17, 2014 2:21 am

Ok, I finally found something explaining that total leaks are supposed to rise as the pressure rises and i guess it's the leak rate that I should be watching more, if I understand right, so maybe that's not it. No clue at this point.

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Re: Cheyne Stokes questions and my graph

Post by archangle » Wed Sep 17, 2014 4:03 am

zeropoint101 wrote:Ok.. so I think I've calmed down enough after my appointment this morning to actually try and be a little rational now since my specialist visit this morning. As soon as I mentioned that I've learned a few things on my own, she smirked at me in that often arrogant doctor way and shut down from that point to any "actual" conversation, as opposed to her just talking and me shutting up. She flat out lied to me and said "We don't have the equipment here to read your data", and by the end was telling me that probably the reason I still feel drugged in the morning is because I take 2mg of klonopin at night(even though klonopin never did that to me for the first 5 years or more, and it only lasts 6-8 hrs at the most and for me, 2mg is a pretty small dose.
Yes, she's an idiot, performing assembly line medicine but charging custom medicine prices, with delusions of grandeur. Welcome to our current healthcare system and the medical mafia.

That's why so many of us have to take an active role in managing our apnea and other healthcare.

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Re: Cheyne Stokes questions and my graph

Post by zeropoint101 » Wed Sep 17, 2014 4:47 am

archangle wrote:
Yes, she's an idiot, performing assembly line medicine but charging custom medicine prices, with delusions of grandeur. Welcome to our current healthcare system and the medical mafia.

That's why so many of us have to take an active role in managing our apnea and other healthcare.
Believe me. I'm all too familiar. I just haven't had to deal with it in a few years. My best friend has chronic lyme disease. She has tests proving that it's still there after years of treatment, MRI's showing lesions in her brain, etc etc etc, and we have still walked into dozens of doctors office only to hear "Well, lyme disease doesn't exist in Missouri. Let's get you to a psychiatrist.", sometimes flat out mocking, calling her crazy, or other ridiculous things. But that's another thread for another forum. The point is I'm very familiar, but I'm finally and unfortunately in a position where I really need a good doctor on my team and I'm afraid I'm going to end up braining one of them with my cpap machine before this is all figured out.

You don't happen to have any friends on this forum that are near the Kansas City, Missouri area who might know a good sleep doctor who listens?

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