How am I doing? 8 months out from start of therapy.

[ankspondy]

Hey guys, new to the forum here.

Have been using Sleepyhead for a while now. Been on CPAP since August of last year.. still having awakenings.
Though my AHI appear to be better. I still can't sleep throughout the night. Wake up about 2-3 times a night still. Here's my data for last three nights. What do you guys think? For reference, my AHI has been the best it's ever been. I usually hover between 3-5. 2 if I'm lucky.
As for my background.. I am a 29 year old thin male with frequent night awakenings ever since I could remember as a kid. I use a resmed full face mask (which I'm comfortable with), and a phillips dreamstation Apap/CPAP.
I notice my leak rate appears to be quite high, though I also know full face masks can allow that to a certain degree and still be normal. I seem to always take off my mask at around the 4am-6am mark (like clockwork) as I can't handle the high pressure early in the morning even with ramp. C-flex enabled at level 3. Ramp starting at pressure of 8. Auto on is on. Auto off is on.
Really appreciate help in advance. Been dealing with OSA for quite some time now.. only started doing something about it recently.

http://imgur.com/PaK4AKb
http://imgur.com/8uExHwB
http://imgur.com/srzQuPC

[robysue]

I seem to always take off my mask at around the 4am-6am mark (like clockwork) as I can't handle the high pressure early in the morning even with ramp. C-flex enabled at level 3.

The problem with taking the mask off is NOT confined to the 4am-6am mark. The three days of data that you posted have "gaps" that look like this:

• May 3. There is a ninety minute "gap" flagged as breathing not detected (BND) between 1:15 and 2:45. And you take the mask off for good around 4:00am. Did you go back to sleep without the mask on after 4:00?
• May 4. There is a 90-100 minute "gap" flagged as BND between 2:30 and 4:10. You put the mask back on around 4:10 and sleep until 6:30, when you take the mask off for good. Did you get up for the day at 6:30 or did you take the mask off and return to sleep without it?
• May 5. There is a 100 minute "gap" where the machine was turned OFF between 4:50 and 6:30. You put the mask back on around 6:30 and sleep until a bit after 8:00.

Note that breathing not detected means that the blower unit is on, but the blower can find no evidence that there is a live, breathing human being at the other end. Short periods of BND can be triggered by very large leaks, but the kind spikes in the leak graph that you have are usually triggered by taking the mask off while not turning the machine off. And since your BND periods are 90+ minutes long, I rather suspect the problem is that you took the mask off in a post-REM wake, but failed to turn the machine off.

But you add:

... Ramp starting at pressure of 8. Auto on is on. Auto off is on.

Are you sure that AutoOff was set to ON on May 3 and May 4? Because the only other explanation I can think of for a 90+ minute period of BND is for the mask to have been significantly dislodged, but not fully removed during the night. As in the mask may have been partially touching your face, but it was not close enough to your nose with even a partial seal for the machine to detect any flow rate corresponding to your breathing.


At any rate: If you want to feel at your best, "removing or partially removing your mask and returning to sleep while unmasked" is the number one issue that you need to find to fix. Do you remember taking the mask off? Or do you wake up later and realize the mask is not on, and then put it back on to return to sleep? Or do you wake up in the morning with the mask back on and then see that you slept without it being on for 90 minutes or more only after looking at the data?

If you are consciously taking the mask off and then going back to sleep, then it's a matter of breaking a bad habit. When you wake up and you feel like you just can't tolerate the pressure any more, try getting out of bed for a few minutes. Go to the bathroom. Then maybe read for a bit in a different room, and go back to bed only when you are willing to mask back up before returning to sleep. Will this be an easy thing to do? No. Will it eventually help you get over the fact that you "always take off your mask at around he 4am-6am mark"? Yes.

If you NEVER remember taking the mask off, that's a more difficult problem to deal with. You could try making the mask more difficult to just yank off in your sleep. Some people lightly tape the mask frame to their cheeks in an effort to create just enough pain to cause them to wake up and realize what they're doing when they start taking the mask off. Others pin the frame into their hair to create enough pain for cause them to wake up and realize what they're doing when they start taking the mask off.

But the fact remains that you are regularly getting at least one full sleep cycles without the mask on your nose. If you went back to sleep on May 3 after 4:00am without the mask, then you probably had two (or more) sleep cycles without CPAP. Is your OSA much worse in REM than non-REM sleep? That's also important because the sleep cycles that start in the wee hours of the morning (i.e. after 3:00AM) are the ones with the longest REM cycles. Hence you may be taking your mask off just as your apnea is starting to get worse each night.

Other comments about things you say:

HBeen on CPAP since August of last year.. still having awakenings.
Though my AHI appear to be better. I still can't sleep throughout the night. Wake up about 2-3 times a night still. Here's my data for last three nights. What do you guys think?

My guess is that the wakes you are talking about are perfectly normal post-REM wakes. And in that case, the absolute best thing you can do about them is to ignore them as much as possible.

Here's the thing: Sleep is organized into "cycles" that last roughly 90 minutes throughout the night. Each cycle tends to start in light sleep (Stage 2), the sleep deepens into Stage 3 sleep, then often returns to Stage 2, and then towards the end of cycle, a REM cycle starts. At the end of the REM cycle, many people with normal sleep briefly wake up (just to make sure that everything is "ok"), turn over and almost immediately go back to sleep and the next sleep cycle starts.

Most people with normal sleep patterns don't remember these post-REM wakes because they're typically really short---as in they last less than 5 minutes. And most people with normal sleep patterns won't remember any wake that is less than 5 minutes long. But with CPAP you are finding yourself awake in the middle of the night and, even after 8 months of PAPing, your brain is still uncomfortable enough with everything that it decides that the wake *must* be significant. So you stay awake long enough to make sure you remember the wake in the morning. And it looks like you also have a tendency to take the mask off during many of these post-REM wakes, based on the times the gaps in your data show up.

So you really need to focus on figuring out how to stop taking the mask off when you briefly wake up at the end of a REM cycle. And you also need to not spend a lot of time worrying about why the wakes are occurring in the first place: The more you worry about post-REM wakes, the more likely you are to prolong how long they last. And the longer they last, the more likely they are to be disruptive of the quality of your sleep.

But again: The bigger disruption of the quality of your sleep is being caused by sleeping without the mask for one or two full sleep cycles every night. Fix that problem and the overall quality of your sleep will improve and (finally) you should start to feel better.

For reference, my AHI has been the best it's ever been. I usually hover between 3-5. 2 if I'm lucky.

There is evidence that you probably need a bit more pressure to fully control the snoring and the obstructive stuff.

But bumping your min pressure up by 1cm may also make the problem of taking your mask off worse. Personally I think you need to focus on fixing the problems that are causing you to take the mask off first and then address the issue of whether to bump up your min pressure setting.

You also say that you use the ramp. (So do I.) There's nothing particularly wrong about using the ramp, although a lot of folks around here will say using the ramp is part of your problem. If the ramp helps you get to sleep, just ignore them when they tell you to just stop using the ramp.

Having said that, however, I'll also add that there are good and bad ways to use the ramp. So let's talk about your ramp settings and how you use the ramp.

1) You say that the beginning ramp pressure is set to 8cm. Can you breathe comfortably at your starting ramp pressure both in terms of exhaling against the pressure AND in terms of inhaling without feeling like there's too little air coming in through the mask? At that 4:00-6:00am mark when you say that you just can't take the pressure any more, is breathing at 8cm still too much? If so, then lowering the starting ramp pressure may help.

2) Do you have "SmartRamp" turned on? If not, I would suggest turning it on. SmartRamp keeps the pressure at the starting ramp pressure until one of two things happens: (1) events (snoring, OAs, Hs, FLs, RERAs) occur and the auto adjust algorithm kicks in to raise the pressure or (2) the ramp time expires.

3) How long is the ramp time set for? And how long does it typically take you to get to sleep at the beginning of the night? And how long does it take you to get to sleep after you wake up in the middle of the night?

I notice my leak rate appears to be quite high, though I also know full face masks can allow that to a certain degree and still be normal.

Which Resmed FFM are you using?

Your total leak rate graph (which includes both intentional and unintentional leaks) is pretty consistently staying in the 33-39 L/min range except when you've taken the mask off without turning the machine off---i.e. the BND periods. My guess is that is very close to the intentional or expected leak rate for your graph. The 95% and max leak rate numbers are being thrown out of whack by the leaks caused by taking the mask off (the BND periods) influencing the leak numbers in a statistical sense.

So leaks do NOT appear to be the cause of your problems. Taking the mask off or partially taking the mask off in your sleep seems to be the cause of your problems in my opinion.

I'm not sure you're looking for advice on what to try next, but I'll offer some anyway.

Here's what I would suggest doing to get over the "take the mask off problem" and the "can't stand the high pressure when I wake up between 4:00 and 6:00 am" problem.

1) Experiment with a lower starting ramp pressure. What's the lowest pressure that you can comfortably inhale at? A lot of folks do experience air hunger when the pressure is set at 4 or 5 cm. But since a starting ramp pressure of 8cm still seems too much to handle when you wake up between 4am and 6am, a somewhat lower starting ramp pressure might help here. I'd suggest trying a starting ramp pressure of maybe 6cm for a while.

2) Make sure the ramp is set to SmartRamp. This will insure that the ramp doesn't start increasing the pressure as soon as you turn the machine on. But it will allow the machine to increase the pressure as soon as it detects snoring, FLs, RERAs, Hs, or OAs.

3) Make sure the ramp time is set to an appropriate time. If you never take more than 20 minutes to get to sleep or get back to sleep, the ramp time doesn't need to be set to 45 minutes. On the other hand if you often take about 20 minutes to get to sleep, its stupid to set the ramp time to 10 minutes.

4) Use a small piece of tape to tape the frame to your cheeks each night. The idea is not to try to make it impossible to remove the mask. You want just enough tape to make you aware that you are yanking something off your face. The tiny bit of pain from yanking a piece of tape off your facial skin make make you wake up enough to realize what you are doing.

5) Hit the ramp button when you wake up INSTEAD of taking the mask off. If the ramp pressure is set a bit lower than its current 8cm, you may find hitting the ramp button will provide enough relief from the seeming hurricane when you hit that difficult patch between 4am and 6am every night.

6) Work on reducing the AHI and the snoring AFTER you fix the problem with taking the mask off in your sleep. Once you have a week or two of nights where you don't have 90+ minutes of BND and/or 90+ minutes where the machine was taken off, you can start addressing the issue that your AHI is in the 3-5 range and the machine is detecting some snoring going on. A 1-2 cm increase in your minimum pressure setting is probably needed in the long run. But if you just bump up the min pressure from 9 to 10 or 11, you may aggravate the problem you currently have of feeling overwhelmed by the pressure at 4:00-6:00 am. Work on one problem at a time. Fix the fact that you are taking the mask off a lot during the night first. Then work on seeing if increasing the pressure to reduce the AHI and snoring can be done without triggering the problems leading to your taking the mask off every night.

[ankspondy]

First off, thank you SO much for taking the time to respond with such comprehensive feedback.

You are absolutely right. I only started using the auto off feature yesterday night (May 5th). The other nights, I've never used it before. I had just discovered it.

I consciously AND unconsciously take my mask off. It depends on the night BUT... more often than not, I am conscious of me taking it off because when I wake up, I go to the bathroom (whenever I wake up I ALWAYS go to the bathroom whether or not my bladder is full, ever since I was a kid, this is a hard ingrained habit).. come back and try to sleep with the mask again but then feel like it's too much to handle.. so after maybe half an hour of trying to sleep with the mask back on, I end up taking it off.

Mask I use is a Resmed F10.

As for my ramp settings, I chose a higher ramp (45 minutes) because I also have insomnia, and it does take me some time (30-40 minutes) to fall asleep.

In terms of the comfort of pressure, It's between 7-8 cm is where I'm fully comfortable. But I'll just point out one caveat. I do take medication to sleep at the beginning of the night and this helps me relax my airway and I'm able to tolerate a higher pressure, but by the time I wake up at like 4am, the medications already worn off so I find it harder to take the pressure. In regards to my brain getting 'used' to the therapy, yeah maybe, I mean hell, I've been having OSA for more than 20 years (which I didn't know). To be fair, I DO feel better.. I guess just not where I want it to be. And I know AHI isn't everything. Can't just treat the numbers.

My mask fit % is always 99%+ according to my machine.

At your suggestion for tonight, I will try a lower ramp, taping my full face mask so I don't pull it off.

[robysue]

I consciously AND unconsciously take my mask off. It depends on the night BUT... more often than not, I am conscious of me taking it off because when I wake up, I go to the bathroom (whenever I wake up I ALWAYS go to the bathroom whether or not my bladder is full, ever since I was a kid, this is a hard ingrained habit).. come back and try to sleep with the mask again but then feel like it's too much to handle.. so after maybe half an hour of trying to sleep with the mask back on, I end up taking it off.

You've got a bad habit established and bad habits are hard to break.

When you say the pressure feels too much too handle, do you mean the pressure is hard to exhale against? Or is the problem that air gets into your stomach? Or is it just that your face or nose doesn't appreciate the wind when you turn the machine back on.

As for my ramp settings, I chose a higher ramp (45 minutes) because I also have insomnia, and it does take me some time (30-40 minutes) to fall asleep.

Have you got the SmartRamp setting turned on? If not, I would suggest turning it on.

In terms of the comfort of pressure, It's between 7-8 cm is where I'm fully comfortable. But I'll just point out one caveat. I do take medication to sleep at the beginning of the night and this helps me relax my airway and I'm able to tolerate a higher pressure,

What medication are you taking at the beginning of the night? Any chance there is a longer acting version of it available?

but by the time I wake up at like 4am, the medications already worn off so I find it harder to take the pressure.

AND

In terms of the comfort of pressure, It's between 7-8 cm is where I'm fully comfortable.

If I were you, I would turn the beginning ramp pressure down to 7cm. If you can't stand that pressure when you wake up between 4 and 6 am, then turn the beginning ramp pressure to 6. You need to find a beginning ramp pressure that you are comfortable breathing with even at 4AM.

The nice thing about the Smart Ramp feature is that it does NOT start to increase the pressure until events start to occur OR the ramp time is completely up. So if you have the ramp set at where you can breath comfortably at 4AM, it won't increase the pressure while you are trying to get to sleep. If you fall asleep sooner than you usually do and some events occur, the machine will increase the pressure even if the ramp period is not yet finished.

In regards to my brain getting 'used' to the therapy, yeah maybe, I mean hell, I've been having OSA for more than 20 years (which I didn't know). To be fair, I DO feel better.. I guess just not where I want it to be. And I know AHI isn't everything. Can't just treat the numbers.

To get to where you want to be you need to figure out a way of sleeping with the machine all night long. The fact that you are usually sleeping for a full sleep cycle or two without the mask every single night is the most likely explanation of why you don't feel as well as you want to.

My mask fit % is always 99%+ according to my machine.

Not a surprise: Except when you took the mask off without turning the machine off, your leaks are well under control.

At your suggestion for tonight, I will try a lower ramp, taping my full face mask so I don't pull it off.

Good luck and let me know how things go.

Keep in mind that you will likely need to use your new set up for a week or so before you really know whether it's helping or not.