Two Months, and I'm a Little Disappointed

[jjborders]

BACKGROUND: I did my first sleep study at the end of December. Went back to the sleep doctor, in early January, to get my results, and was diagnosed with severe sleep apnea (when sleeping on my back, side was no problem). Went home with an auto CPAP machine, and nose pillow mask that same day (setting 4-20). Took to the machine within a couple of days, and haven't really had much problem sleeping. Went in for my titration study in mid-February, and they determined that my ideal pressure setting was 10. The doctor kept me on the auto CPAP with a setting window of 4-12. I go to bed between 10:00pm and 10:30pm and get up during the week between 5:00am and 5:30am. One issue is that I consistently wake up at 3am (+/- 10 minutes), and the quality of remaining sleep is not as good.

CONCERN: I'm fine in the morning, but after lunch I crash hard, and would give anything to take a nap. It's embarrassing trying to stay awake in meetings. I had really high expectations that CPAP would be the answer to my daytime sleepiness, but so far I can't tell a whole lot of difference, and I'm getting a little disappointed. I read a lot of literature/testimonials on how the CPAP worked wonders. I'm still waiting.

Are my expectations unreal? Should I go to a straight CPAP versus the auto?

[cflame1]

If you're staying with Auto and your pressure is 10... then your bottom pressure is way too low. It should be about 8 (just a guess), otherwise it'll take too long to respond to events at 10.

[sleepycarol]

I am going with the starting pressure as being too low as well. I would set it higher as well.

It could be that you are still adjusting and with more time it will level off.

[Janknitz]

You have a data capable machine and I think it would be very helpful to look at the data to see what's going on. I'm wondering if you are having leaks or your AHI's could be under better control with a tighter range of pressures, but there's no way to tell from the limited data available on the screen.

You will need Encore Viewer Software, available for purchase from online vendors like our hosts for about $100. The info on the screen is not going to tell you enough. If you have a Mac or 64 bit machine, the software requires some workarounds.

[robysue]

Took to the machine within a couple of days, and haven't really had much problem sleeping. Went in for my titration study in mid-February, and they determined that my ideal pressure setting was 10. The doctor kept me on the auto CPAP with a setting window of 4-12. I go to bed between 10:00pm and 10:30pm and get up during the week between 5:00am and 5:30am. One issue is that I consistently wake up at 3am (+/- 10 minutes), and the quality of remaining sleep is not as good.

Undoubtedly that 3 am waking is a problem since you say the sleep after that is not so good. Couple of questions:

1) Is the pattern of waking up at 3 am new (as in since starting CPAP) or old pattern that predates CPAP?

2) Have you had a chance to look at any detailed data to see what's going on around 3 am? If so, what does your leak line look like and what do the events near that witching hour look like?

It's possible that you are entering an extended REM period and having a cluster of events that the machine is taking too long to respond to. Or it could be that as the machine starts to ramp up the pressure to respond to events, the pressure increase is waking you up. It's also possible that you're changing positions and triggering a significant leak.

If the problem is not leaks, then switching to straight CPAP set at 10 might very well help. Bumping up the min pressure for APAP might help---if the wakes are not caused by changes in pressure.

[DreamDiver]

I wonder how much doctors really know about the actual machines and what it's like to use one when they constantly leave patients on an auto range of 4/20cm or even 4/12. I know of almost nobody who can actually breathe below 6. It's a wonder you can keep the mask on with such a low start pressure. Like others, and keeping in mind that I'm not a doctor, if it were my machine, I'd change the lower pressure in the range.

First, I would look at my 95th percentile and median pressures for the last 30 days. I would then choose a lower pressure somewhere between the median and the 95th percentile as my start pressure. If they're less than a cm apart, I would choose the median as my low (start) pressure.

If my 95th percentile is less than a cm difference from the max pressure for the month, I might even consider raising the upper pressure just a touch.

Could you tell us what your median, 95th percentile and max pressures are for the last month?

[Pugsy]

One issue is that I consistently wake up at 3am (+/- 10 minutes), and the quality of remaining sleep is not as good.

CONCERN: I'm fine in the morning, but after lunch I crash hard, and would give anything to take a nap.

Are my expectations unreal?

Are you expectations unrealistic? Well...no but not everyone who starts down the cpap road will have those "Eureka" moments where they felt like they did 20 years ago. Many have to be happy with slow and very gradual progress. But we all wish we had them.

Get the software, determine if the therapy is being effective before beginning to even expect the Eureka moment.
Many times there can be little problems that need to be addressed. Leaks being a major one. Figure out why the wake up at 3AM and subsequent lousy sleep after that time. Even without OSA people who have fragmented sleep will have crappy days. Often people may have other issues that are still disrupting their sleep and causing daytime sleepiness. Meds? Pain? Mattress? or combination of things. Do your homework and take a hard look any other possible culprits.

Finally, sometimes even with the very best of therapy (confirmed by the software) it does take time to see improvements. It took me nearly 18 months of very good therapy (shown on the software) before I got all my other issues taken care of that caused my poor fragmented sleep and I no longer felt the need to take a nap..

First bit of detective work is the software. Check the reports to see if any thing there needs improvement.

[robysue]

I wonder how much doctors really know about the actual machines and what it's like to use one when they constantly leave patients on an auto range of 4/20cm or even 4/12.

It's the cynic in me, but I seriously doubt the vast majority of docs (as well as the nurses, PAs, and techs) have even the smallest inkling of an idea of what it's like to put the hose on night after night and try to sleep soundly with air being shoved down our throats and dealing with leaks, rainout, hose placement, and noise issues among other things. If they did, I don't think the pat answer to the common newbie sentiment: "I'm still not sleeping as well with the machine as I did before" would always be: "Just give it some more time."

I know of almost nobody who can actually breathe below 6. It's a wonder you can keep the mask on with such a low start pressure.

While I know that for folks who can comfortably breathe at 9, 10, 11 cm and above often feel as if they are suffocating at 4, 5, 6 cm, do keep in mind that there are some folks (like me) who not only do not need additional pressure, but are also extremely uncomfortable trying to breath at pressures over 7 or 8 cm. For me: 9 cm feels like I'm sleeping with a jet plane force feeding me air (I know---that's what my initial setting was). I can tolerate 8cm, but it still triggers aerophagia. At 7/4.5 I have no aerophagia and breathing feels more or less normal. Heck, for the first time since starting xPAP, I can even speak a few words to my hubby when necessary (Get the cat OUT OF HERE comes to mind) without getting a painful belly full of air.

[jjborders]

You have a data capable machine and I think it would be very helpful to look at the data to see what's going on. I'm wondering if you are having leaks or your AHI's could be under better control with a tighter range of pressures, but there's no way to tell from the limited data available on the screen.

My machine was reset last week, so I only have 6 days of data. I just looked and my average AHI is 3.9, and the 90% pressure is at 10.1

I'll look into the software. Of course I just got rid of two 32-bit XP machines.

[jjborders]

Took to the machine within a couple of days, and haven't really had much problem sleeping. Went in for my titration study in mid-February, and they determined that my ideal pressure setting was 10. The doctor kept me on the auto CPAP with a setting window of 4-12. I go to bed between 10:00pm and 10:30pm and get up during the week between 5:00am and 5:30am. One issue is that I consistently wake up at 3am (+/- 10 minutes), and the quality of remaining sleep is not as good.

Undoubtedly that 3 am waking is a problem since you say the sleep after that is not so good. Couple of questions:

1) Is the pattern of waking up at 3 am new (as in since starting CPAP) or old pattern that predates CPAP?


2) Have you had a chance to look at any detailed data to see what's going on around 3 am? If so, what does your leak line look like and what do the events near that witching hour look like?


It's possible that you are entering an extended REM period and having a cluster of events that the machine is taking too long to respond to. Or it could be that as the machine starts to ramp up the pressure to respond to events, the pressure increase is waking you up. It's also possible that you're changing positions and triggering a significant leak.

If the problem is not leaks, then switching to straight CPAP set at 10 might very well help. Bumping up the min pressure for APAP might help---if the wakes are not caused by changes in pressure.

1) Unfortunately I've had this awakening occur sometime during the night for quite a few years. Sometimes the gerbil gets on the wheel, and I start thinking about things that have to get done during the upcoming day. I've more or less come to accept it, instead of fretting about it, and that seems to help me get back to some type of sleep, but it's not as deep as it was. I talked to the sleep doctor last week about it, and he's recommending I skip the decaf tea (still has some caffeine) at dinner, and read for awhile before bed time. Avoid television and computer before bedtime.

2) Not sure how to check things at that particular time. I guess the software that everyone has mentioned can do this.

As for leaks, I don't think I have many. I did find out that nose pillows only have a limited life cycle. I was on week 6 with my first set, and the last couple nights I used them they leaked like a sieve.

[jjborders]

I wonder how much doctors really know about the actual machines and what it's like to use one when they constantly leave patients on an auto range of 4/20cm or even 4/12. I know of almost nobody who can actually breathe below 6. It's a wonder you can keep the mask on with such a low start pressure. Like others, and keeping in mind that I'm not a doctor, if it were my machine, I'd change the lower pressure in the range.

First, I would look at my 95th percentile and median pressures for the last 30 days. I would then choose a lower pressure somewhere between the median and the 95th percentile as my start pressure. If they're less than a cm apart, I would choose the median as my low (start) pressure.

If my 95th percentile is less than a cm difference from the max pressure for the month, I might even consider raising the upper pressure just a touch.

Could you tell us what your median, 95th percentile and max pressures are for the last month?

I only have 6 days worth of data as the machine was reset last week when they set me up with my prescription. I just checked, and the 90% average for the last 6 days is 10.1.

[robysue]

1) Is the pattern of waking up at 3 am new (as in since starting CPAP) or old pattern that predates CPAP?

1) Unfortunately I've had this awakening occur sometime during the night for quite a few years. Sometimes the gerbil gets on the wheel, and I start thinking about things that have to get done during the upcoming day. I've more or less come to accept it, instead of fretting about it, and that seems to help me get back to some type of sleep, but it's not as deep as it was. I talked to the sleep doctor last week about it, and he's recommending I skip the decaf tea (still has some caffeine) at dinner, and read for awhile before bed time. Avoid television and computer before bedtime.

I thought it might be an old pattern rather than a new one. Still disrupting of your sleep, but not likely tied directly to the CPAP itself? However, since you are new to CPAP, if you are having any sensory problems adjusting to CPAP, that could aggravate this problem. So prudent monitoring is reasonable: If the 3:00 AM wake up starts to get worse in the sense of what you worry about, additional time needed to fall back asleep (even if the sleep is only so-so in quality), or your simply feeling more anxious about it, then you will want to be proactive in treating it as a little baby insomnia monster to prevent it from growing into a full-grown insomnia monster.

And since the gerbil on the wheel can trigger the wake up, is there a way of insulating yourself from that noise? Move the gerbil cage? Have some white noise in the room you sleep in?

Skipping the decaf tea at dinner is a reasonable idea. As avoiding tv and computers (and texting via cell phones) are all good ideas. As for reading before bedtime: Make sure the reading material is NOT job related and is NOT overly compelling. Also you might want to do the bedtime reading in a different room than the bedroom---or at least not the bed. I would think reading a real book instead of a kindle might also be called for: There is something about the kind of light emitted by electronic gadgets that can disturb many people's sleep. And if there is a tv in the bedroom, you might want to kick it out. You might want to read up in general on sleep hygiene and see if there are any obvious things that you can do to improve yours even slightly. Adding some light exercise like a short walk or some relaxing stretching during the day might also help.

2) Have you had a chance to look at any detailed data to see what's going on around 3 am? If so, what does your leak line look like and what do the events near that witching hour look like?

It's possible that you are entering an extended REM period and having a cluster of events that the machine is taking too long to respond to. Or it could be that as the machine starts to ramp up the pressure to respond to events, the pressure increase is waking you up. It's also possible that you're changing positions and triggering a significant leak.

2) Not sure how to check things at that particular time. I guess the software that everyone has mentioned can do this.

As for leaks, I don't think I have many. I did find out that nose pillows only have a limited life cycle. I was on week 6 with my first set, and the last couple nights I used them they leaked like a sieve.

I think the software would really help sort some other issues out---even beyond potential leak problems and spotting a pair of almost worn out pillows.

[DreamDiver]

And since the gerbil on the wheel can trigger the wake up, is there a way of insulating yourself from that noise? Move the gerbil cage? Have some white noise in the room you sleep in? ...

I suspect he's talking about the metaphorical 'gerbil wheel' the mind sometimes finds itself on at 3am. Whitenoise might still help if the problem is a noise that can be masked that acts as an arousal mechanism: neighbor's dog barking, owls, etc. Earplugs might work too. One unexpected thing that works for me is to listen to a story in audio book format. It helps for it to be something not too engaging, as robysue also suggested for reading material -- something you've heard a number of times before. Classics are good for this. If your parents read to you as a child, it could actually trigger sleep in less time than you might expect. I use an mp3 player with the volume turned down just so I can barely hear it. Your mind is sort of on the story -- not on problems, and then you fall asleep.

[robysue]

And since the gerbil on the wheel can trigger the wake up, is there a way of insulating yourself from that noise? Move the gerbil cage? Have some white noise in the room you sleep in? ...

I suspect he's talking about the metaphorical 'gerbil wheel' the mind sometimes finds itself on at 3am.

My bad. In all the years of dealing with my outbreaks of insomnia, I've never thought of the "mind waking up and starting to think or race" problem as getting on a "gerbil wheel", although I can see why the metaphor is apt.

Whitenoise might still help if the problem is a noise that can be masked that acts as an arousal mechanism: neighbor's dog barking, owls, etc. Earplugs might work too. One unexpected thing that works for me is to listen to a story in audio book format. It helps for it to be something not too engaging, as robysue also suggested for reading material -- something you've heard a number of times before. Classics are good for this. If your parents read to you as a child, it could actually trigger sleep in less time than you might expect. I use an mp3 player with the volume turned down just so I can barely hear it. Your mind is sort of on the story -- not on problems, and then you fall asleep.

For me, having the iPod loop through a long Gregorian chant playlist all night long is what works. I keep the volume turned down to the point where I can barely hear it when my head is under the blankets ('cause that's the way I usually sleep). I think it works for me because the chants have this ethereal and timeless quality. On the one hand they all sound alike (so I can't identify where the iPod is in the playlist when I wake up) and on the other hand they also sound like they are constantly changing---kind of like the sound of cicadas on a summer night, but more melodious.

[Big S]

Robysue wrote:
I think it works for me because the chants have this ethereal and timeless quality.

Do you plan to make this playlist available to members?