Just had my first follow-up, please help

I've been using CPAP since 8/4/13 (diagnosed with 49.6 AHI), and have stuck with it for the most part (I've only missed using it maybe 5 days total since I started). I still feel like crap all the time, and am sleepy as hell all day. I'll just post up a couple screenshots from SleepyHead so you can get an idea of what I'm working with, then I'll get into the questions. All screenshots are using a ResMed S9 AutoSet with pressure at at 8-18.

Second night using it,but first full, uninterrupted usage, using a ResMed nose mask:



This is my worst night using the same nose mask:




After about 3 weeks, I switched to the Swift FX nasal pillows because I was getting way to many leaks. I can't not sleep on my stomach. It just caused too many nightly interruptions.

I had a stretch of about a month with very good AHIs, typically around 1.0, but still felt like crap that entire time. I can post up screenshots of at least one of those days if you need them, but thought I'd save some space. Now, here's where it gets interesting. This is the night before last:




At my follow-up, he was pretty interested in the clear airway apneas. Last night's wasn't much better, with an AHI of 45.4, and clear airway of 36.5.
The clear airways don't happen every night, or even most nights for that matter. But, they do tend to show up in streaks. The oddest part is that I'm actually able to wake up at a decent hour on the nights that I have a greater number of clear airway events, whereas when my AHI is low, I can't wake up for the end of the world.

Even with all the disparate numbers, I still feel like crap every day, and don't notice a difference no matter what the numbers show. He sent me home today with a chin strap, but called me a couple hours later because he had spoken with the pulmonologist. The pulmonologist suggested that I switch to BiPAP. No clue if that will actually help. Or the chin strap for that matter, but I'll try anything at this point. I've had to withdraw from school the last two semesters because I just can't function on a day-to-day basis.

So, do any of you have any ideas about what could be going on? Would increasing the minimum air pressure help? Could it be the mask? I don't really want to move away from the nasal pillows. Or, could this be, like the pulmonoligst suggested, the beginning of something else, in addition to the sleep apnea? Any input would be greatly appreciated. If you need screenshots of anything (related to this, of course), just let me know.

I'll just add the link to the screenshot of the Statistics tab in SleepyHead here, so I don't take up too much space.https://dl.dropboxusercontent.com/u/134 ... %20(7).png

I'm sure I'm leaving out some relevant details, but I'm also sure that someone will point out what I'm missing.

Here's the Overview tab for the last 2 months, if that helps with anything. You can at least see the clear airways.

Hi - none of your links works (only the photobucket one even showed up properly and that led to a big 'lock' picture. What machine (full name and model #) do you use? What mask(s)? You've given results of your sleep study, but no overnight AHI #'s on Cpap (unless those 30+ ones were them, in which case you really, really need help).

What are your pressures set at? How many hours are you sleeping? Do you get up overnight for any reason, or awaken to find the mask has been pulled off?

All that info is in my first paragraph. It's a ResMed S9 AuoSet at 8-18 pressure, using a Swift FX nasal pillow. As far as sleep, it's not consistent. Last night was about 5 hours, the night before last was about 7. Generally, I get anywhere from 7 to 9 hours of sleep with no interruptions other than the occasional leak that requires a mask reseat. That only happens once per night, if at all. I wake up for no other reason.

Not sure why the pics aren't showing up for you. They're all in my public DropBox folder, which is set to public access. All the pics are hosted at DropBox, so I'm not sure which one you're talking about when you mentioned the photobucket pic. If it's the one I just linked to, I can just add links to the other screenshots.

I am also locked out of your dropbox...so it doesn't appear to be public..at least that particular link.
Dropbox image links are a bit tricky.
Let me see if I can get the proper sequence of steps.

Bear with me...go to your folder where your images are..don't go to the image itself
highlight the file for image...right click mouse...choose "copy public link" from the menu that pops up

paste the copied public link into the body of the forum post...and I get this which is a link to an image I have in by dropbox
https://dl.dropboxusercontent.com/u/97869955/resss.JPG

If I use the forum's IMG button on the forum editor...I then insert the copied public link in between the IMG brackets and I get this image. I think the problem may be when you are actually viewing the image yourself. In the past when I would try that step things were more difficult.

Thanks for the help. It's been a couple years since I posted anything from DropBox, and they've changed it around quite a bit. Everything should work fine now.

Regarding my second post with the screenshot of the overview tab for the past 2 months.... the guy I see (he's not a doc) told me that he didn't see many days where I had clear airways, but looking at that chart, there's a lot of purple (clear airway). So, either he doesn't know what he's looking at, or I don't.

Hi digitalepiphany

I think you need to get the leaks under control before going any further. If the mask is consistently leaking at more than 24 L/min the machine can't compensate and there's a good chance the apnea results are not accurate.

If you are still getting so many centrals once the leaks are controlled, you will very likely need an ASV machine (eg ResMed S9 VPAP Adapt). These are specifically designed for treating central apnea, complex apnea and related conditions.

The other thing I see is that your sleeping hours are all over the place. Received wisdom is that a regular sleep / wake time is more conducive to healthy sleep. If possible, try to set a regular time to go to bed and stick to it. (If you're a shift worker, that is well nigh impossible, I know).

How would you say you slept the night of the 11th?

See the green Apneas? Those are unknown apneas. The machine couldn't decide what was happening because the leaks were so bad.

You need to get the leaks under control so that we can trust the data that is being recorded.

For future images...turn off the AHI graph and the mask pressure graph. They aren't needed and with them turned off the leak graph will move up so you can get the main graphs on one screen shot.
To turn them off..go to Preferences then graphs tab and remove check mark.

The Aug 5 night where the AHI was quite low..the leaks were so bad I am thinking the machine simply couldn't sense anything.

Are all these with some sort of nasal mask? If so looks like a lot of mouth breathing is likely happening.

The leaks need to be fixed so that the reports can be trusted. That is the first thing that needs to be done. If you are using a nasal mask of some sort....try taping your mouth just so we can eliminate mouth leaks or mouth breathing. If the leak line doesn't improve then the leaks aren't from the mouth.
What mask are you using?

Bilevel machine need? Maybe the doctor was thinking that the centrals are real and thinking complex sleep apnea...the usual progression for CompSA therapy is try the ordinary bilevel machine first and if no relief then go for the bilevel machine in the ASV family.
No matter which machine though...those leaks must be dealt with in some way.

The S9 Autoset is quite a sturdy machine to diagnose events even if the Leaks OCCASIONALLY are somewhat above 24 L/Min. Otherwise, it would show the event as Unknown (colored yellow in ResScan). I agree with the poster from Perth that you most likely suffer from CSAS and/ or CSR and should use an ASV machine. BTW, if we are correct then according to the U.S. Board of Sleep Medicine you should NOT use the S9 in the APAP mode.

DeepBreathing wrote:Hi digitalepiphany

I think you need to get the leaks under control before going any further.

The other thing I see is that your sleeping hours are all over the place.

What's an ASV?
I actually bought some mask sealer (for diving masks). I haven't used it consistently yet, but I'll start keeping some sort of journal of all the little different things I do each night.

As far as my sleep schedule is concerned...I'm dead tired all day. Like I could take a nap at any time. And, my naps aren't short. At least 6 hours. If I stay up until a normal bedtime, like 10 o'clock, I'm wide awake again, and can't get to sleep until anywhere from 4AM to 7AM. Even if I stay up all night so that I can go to bed at a normal time, it happens again. I've thought about taking some sort of sleeping meds to help me get to sleep at a decent hour, but haven't tried anything yet.

penuel wrote:The S9 Autoset is quite a sturdy machine to diagnose events even if the Leaks OCCASIONALLY are somewhat above 24 L/Min. Otherwise, it would show the event as Unknown (colored yellow in ResScan). I agree with the poster from Perth that you most likely suffer from CSAS and/ or CSR and should use an ASV machine. BTW, if we are correct then according to the U.S. Board of Sleep Medicine you should NOT use the S9 in the APAP mode.

My leaks are quite consistently above 24 L/Min, so the leaks are a possibility.
As far as the other stuff is concerned, can you explain what CSA, CSR, and ASV mean.

Also, my DMI tried explaining what BiPAP does, but it didn't make much sense. I googled it as well, and I'm still not getting it. From what I got, he said it would normally act as a CPAP, if 2 of some setting are set the same? Other than that, I'm lost with that. Maybe I just don't understand the major difference between clear and obstructive apneas. I don't know, at this point I'm just starting to confuse myself, so I'll stop typing now.

Complex Sleep Apnea..is where you have both central apneas an obstructive apneas.
Central Sleep Apnea is where you primarily have central apneas.
Obstructive Sleep Apnea is where you have primarily obstructive apneas.

Obstructive apneas or hyponeas...where the airway tissues collapse and cause the full or partial blockage of the airway air flow.
Central apneas..where the airway is open but no air flow is present. Hold your breath for 15 seconds..that's pretty much what happens with a central. The airway is open but no air is flowing because the brain hasn't told the body to breath.
While it is normal for everyone to have a few centrals here and there it isn't normal to have as many as your are seeing IF they are real.
Sometimes people have centrals show up in large numbers on the diagnostic sleep study...sometimes they don't have very many during the diagnostic sleep study but get a truck load of them with the beginning of cpap therapy. The pressures create a breathing instability. See this video for a better explanation of what happens.
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

When Complex Sleep Apnea or Central Sleep Apnea is present and the centrals are a huge factor then usually some type of ASV machine is indicated.
ASV is a type of bilevel machine that will actually give you a burst of pressure (regular cpap/apap/bilevel machines can't give those bursts of pressure) to sort of jump start your breathing....to overcome that breathing instability issue which has caused the brain to forget to tell the body to breath.
ASV stands for adapto servo ventilation. They act like a ventilator at times.

Normally Complex Sleep Apnea is caught in the sleep lab when a person has the sleep study with the cpap machine when various pressures are tried.
Sometimes it gets missed for whatever reason.
If your leaks weren't excessive and you still had the number of centrals you are seeing then for sure we would think CompSA or CSA (central sleep apnea) but the leaks are so excessive that we don't know if the machine is scoring what it senses accurately. Leaks must be removed as a complicating factor first..just so we can trust what the machine is showing us. Then if the centrals are still present in large numbers...and you say you were asleep and don't tell us you were awake during the periods where a large number of centrals are seen...then there's a good chance that you are going to need a different type of machine.
Normally the progression is to try a "simple" bilevel machine first because sometimes bilevel pressures is enough to prevent the breathing instability of CompSA. Often it is done due to insurance requirements because of cost of the ASV type of machine. Insurance will want you to try a not so expensive bilevel machine first before they will want to pay for the high dollar ASV machine.
If you do indeed have CompSA because of the pressure itself then the apap with auto adjusting pressures probably isn't the best option to be using because the increasing pressures needed to treat the obstructive apneas will turn around and cause centrals. So a wide range in pressures probably isn't the best way to go. If auto mode is used perhaps a very tight range would be more appropriate.
Having centrals that are present because of cpap pressure complicates the issues a bit. We can prevent the obstructive apneas but in the process create central apneas...just trade one kind of apnea for another. Obviously not a good solution.
The number of people who develop CompSA as a result of cpap pressure is really relatively small...only about 10 to 15% of the people who are put on xpap therapy will develop this problem and for some if the problem is minor it goes away on its own or is sufficiently managed with tight pressure ranges or a "simple" bilevel machine. For those that can't be managed well with the first choices then they get to use a different machine and that's where the ASV type of machine comes in.

BUT we have to have the leaks not be a complicating factor before evaluating the status of what those events really are. I suspect that you will still see the centrals in large numbers but I can't say with certainty that you will...so I can't say CompSA is going on here for sure.
Maybe we get lucky and with leaks better managed...we won't see all this ugly stuff. I doubt the chin strap will be enough to prevent massive mouth breathing if that is what we are seeing here but worth a try.

For your SleepyHead report...the events graph on the top is very important so when we can't quite get the 4 main graphs on one screen shot with leak being the last graph...we can resize the graphs just a little. Take your mouse cursor and hover it along the bottom of each of the other graphs until you see a little short double line...then click and drag to resize the box. If you make each of the other graphs a little shorter..the leak graph will come up into viewing area and it can also be made just a little smaller. So it's easy to get 4 graphs in one view. This one is an older report and the leak graph is bit larger and the pressure graph is a bit smaller but I think you can get the idea. SleepyHead will remember the changes so you only have to do the resizing once.
Here's an example

Re the leaks - many people try a range of masks before they find one which is comfortable and doesn't leak. I'd be inclined to try the chin strap then if that doesn't work try a different mask. If you're a mouth breather you might find a full face mask better. But everybody is different so there's no one answer to this.

There are two basic types of apnea - obstructive and central. In an obstructive apnea your airway collapses or is obstructed by your tongue etc. Your diaphragm and chest muscles are trying to breath, but the air can't get through. This is obviously serious but is relatively easy to treat with pressure. The other type is central: in this case the message from your brain stem to the diaphragm doesn't get through for some reason. Your airway is open, but there is no attempt to breath. You can also get mixed or complex apnea when the two types occur together.

The various types of machine are CPAP (continuous positive airway pressure), APAP (automatic PAP) and bi-level (which goes under names like Bipap and VPAP). CPAP is what the name implies - a constant pressure is selected Nd applied continuously all night long. This is the simplest approach and works for a lot of people with obstructive apnea. The next step up is APAP where you can set an upper and lower limit and the machine adjusts itself automatically between those limits. This has a number of advantages including the machine will select the optimum pressure to treat your apneas, without subjecting you to a high pressure all night. On the down side, some people don't like the changing pressures which they find disturbing.

CPAP and APAP machines often have expiratory pressure relief which lowers the pressure by a few points when you exhale. Bilevel machines take this further by allowing you to set a base expiratory pressure and a variable pressure support, so that both upper and lower limits are effectively variable.

ASV stands for automatic servo ventilation which is a further enhancement of the bilevel. In this case the machine responds on a breath by breath basis to get you breathing again in the case of a central apnea. These machines tend to be expensive but are very effective for centrals. There are other types of breathing disorder such as periodic breathing or Cheyne Stokes Respiration (CSR) which the ASV machines also manage.

Thanks for the info, the video really helped too. What was really confusing to me was the way the DME was describing the new machine. I think he was referring to a BiPAP ASV, but he only referred to it as a BiPAP. He said that when I have centrals, that the machine will breathe for me. His words, not mine. He said that it would initially be set at 10 breaths. He didn't really go into too much more detail. I have a feeling that he didn't understand it well enough to really describe it to a layperson, hence why I was confused. Does that sound like he's talking about an APV? Also, this is through the VA, so you'd think they'd be tighter with their money, after all they den veterans disability all the time, and call it saving money. Maybe I just got someone who actually cares about patient care. That really matters in the VA system. Some think that veterans are just out to cheat the system. He seemed kind of upset when I told him that I was monitoring my own data, but also said that he didn't blame me. Who knows.

I saw on someone else's post that you recommended putting water in the hose to rule out leaks there. I have an 8 or 10 footer (they didn't have anything in the 6 foot range), so it'd be kind of difficult to do in the sink. Could this be done in the tub without having to sanitize it too much beforehand? I remember reading somewhere that I can use regular water and soap to clean, as long as I rinse with distilled. Does this sound accurate?

Regardless, I'll try the chin strap tonight to see if that helps.