A Couple Questions

Now that I'm settled on the Trilogy, I have a couple of "things" I'd like to run by the wonderful people of this forum.

Number One: On the Trilogy, I have the ability to watch what's happening live since the display is so large and lighted. I have stopped obsessing and watching BUT I do keep an eye on it the first couple minutes to make sure I don't have a horrible leak. I've noticed that the leak rate can really vary, even if I haven't moved at all in several seconds. I can lay there, NOT MOVING OTHER THAN BREATHING, and the leak rate will show 35, 37, 32, then jump to 42, then down to 29, then back to the typical area of mid 30's. I don't understand why it would do this, especially if I'm not moving to cause a mask leak. It's not a problem - just curious.

Number Two: I am the first to admit that I do NOT practice good sleep hygiene. One of the "accept it for it is what it is" areas is that if I am not already dozing off when I mask up, I fight the ventilator (not intentionally, but it happens). So, I never slide down and hook up until I'm in that phase where I have no choice. It could be 11pm or it could be 1:30 - 2:00, usually sometimes between 11 - 12.

Here's my question: On the weekends (and once in a while during the week if I've had an especially bad night), I sleep later. My husband gets up around 7:00 - 7:30 and I feel so tired that I want to sleep longer. However, I tend to sleep in short segments (20-30 minutes) and keep waking up, feeling like I need to sleep more and going back to sleep.

Am I better off just getting up or taking another 2-3 hours of these quick naps? Sometimes I feel pretty good after doing this, but other days I feel awful and I can't tell beforehand.

Hi - I would try out the up early and longer naps for yourself if you can, because in the end only you can judge how well they work... not much help I guess, but so glad to see you're back in the driver's seat!

Madalot wrote:NOT MOVING OTHER THAN BREATHING, and the leak rate will show 35, 37, 32, then jump to 42, then down to 29, then back to the typical area of mid 30's. I don't understand why it would do this, especially if I'm not moving to cause a mask leak. It's not a problem - just curious.

Is the pressure absolutely constant during this period of time or is there any slight variance?
Obviously the difference is not a problem but just wondering if what you are seeing is normal vent variances with minor pressure fluctuations..

Your question about nap or stay in bed longer...obviously I am not in your situation so what works for me means absolutely nothing but I have found that I feel better if I sleep longer during the night as opposed to a bad night with short hours and a nap in the afternoon.
I can't seem to get a restorative nap in the afternoon. Just me being a weirdo I guess.

For you...perhaps a week long trial of each option and see if you can document a sort of a trend with how you feel....and toss out obvious horrible exceptions which are going to happen from time to time anyway.

Madalot,

I'm afraid I can't help you on the leak question.

But you write:

Madalot wrote: Number Two: I am the first to admit that I do NOT practice good sleep hygiene. One of the "accept it for it is what it is" areas is that if I am not already dozing off when I mask up, I fight the ventilator (not intentionally, but it happens). So, I never slide down and hook up until I'm in that phase where I have no choice. It could be 11pm or it could be 1:30 - 2:00, usually sometimes between 11 - 12.

Waiting to go to bed until you know you can get to sleep with the mask on instead of fighting the ventilator IS part of good sleep hygiene.

Here's my question: On the weekends (and once in a while during the week if I've had an especially bad night), I sleep later. My husband gets up around 7:00 - 7:30 and I feel so tired that I want to sleep longer. However, I tend to sleep in short segments (20-30 minutes) and keep waking up, feeling like I need to sleep more and going back to sleep.

Am I better off just getting up or taking another 2-3 hours of these quick naps? Sometimes I feel pretty good after doing this, but other days I feel awful and I can't tell beforehand.

Any chance how you feel after the naps is related to how long you spent napping? In other words, is it possible you feel better when the naps are limited to 1 or 1.5 hours and worse when they're longer than that?

And from a sleep hygiene point of view the relevant question may not be "do you feel better during the daytime after you take the naps?" The relevant question is: Do the naps make it take too long to get sleepy enough to go to bed for the NIGHT?

In other words, since you can't predict whether the naps will improve your daytime functioning, the question becomes: Do you wind up going to be significantly later than you'd like to at the end of the days where you do the napping?

So you might want to informally track as follows: On any day where you start the day off with the 2-3 hours of these naps, jot down the time you finally decide to call it a night. After a few weeks look at the data: If the naps don't seem to adversely affect your bedtime, then take the naps and don't worry about them. If the naps seem to be strongly correlated with later-than-you-wish bedtimes, then cutting back on the time or eliminating them might be worthwhile.

Pugsy, usually during that time, we're doing basic bipap of 15/9 -- no significant variances. I just find it weird that it can vary so much without my making a move.

I might give that week long trial both ways a try. Get up early even if I don't want to (yuck) and then try sleeping a bit later for a week. See if either seems better. Sometimes our life & schedule make me do one or the other. I HATE getting up early.

What prompted my question was this morning. My husband got up at 7:30 and we talked a bit, but I went back to sleep. Woke again around 8:10, then at 8:45, then again at 9:10 -- and decided to get up even though I really wanted to sleep more.

Will I nap this afternoon? I probably won't take an intentional nap (meaning I won't lay down) but sitting in my chair -- I'm likely to doze off without meaning to. Happens every day.

robysue wrote:Waiting to go to bed until you know you can get to sleep with the mask on instead of fighting the ventilator IS part of good sleep hygiene.

Oh, that's nice to hear. I thought I was screwing up by not going to bed at a consistent time every night. Some nights I WANT to go to bed early, but know what will happen on the ventilator so I don't. I ALWAYS wait until I can't stay awake. Nice to know that's actually smart.

robysue wrote:So you might want to informally track as follows: On any day where you start the day off with the 2-3 hours of these naps, jot down the time you finally decide to call it a night. After a few weeks look at the data: If the naps don't seem to adversely affect your bedtime, then take the naps and don't worry about them. If the naps seem to be strongly correlated with later-than-you-wish bedtimes, then cutting back on the time or eliminating them might be worthwhile.

I will give this a try. I've done this, to a point, in the past, and never could get a "pattern" that would point me in one direction or the other. But I think it's worth looking at again, just to see.

Time to get out the old notebook! Thanks!

Madalot wrote:

robysue wrote:Waiting to go to bed until you know you can get to sleep with the mask on instead of fighting the ventilator IS part of good sleep hygiene.

Oh, that's nice to hear. I thought I was screwing up by not going to bed at a consistent time every night. Some nights I WANT to go to bed early, but know what will happen on the ventilator so I don't. I ALWAYS wait until I can't stay awake. Nice to know that's actually smart.

The first rule for insomniacs is: Only go to bed when you are sleepy enough to get to sleep after all. And when there's a mask involved, you have to be sleepy enough to fall asleep with the mask on.

robysue wrote:So you might want to informally track as follows: On any day where you start the day off with the 2-3 hours of these naps, jot down the time you finally decide to call it a night. After a few weeks look at the data: If the naps don't seem to adversely affect your bedtime, then take the naps and don't worry about them. If the naps seem to be strongly correlated with later-than-you-wish bedtimes, then cutting back on the time or eliminating them might be worthwhile.

I will give this a try. I've done this, to a point, in the past, and never could get a "pattern" that would point me in one direction or the other. But I think it's worth looking at again, just to see.

Time to get out the old notebook! Thanks!

If you find "No discernible pattern" to whether the napping causes problems with bedtime getting pushed back later than you'd like it to be, that means "napping doesn't tend to adversely affect bedtime."

Best of luck as you gather the data.

robysue wrote:

Madalot wrote:

robysue wrote:Waiting to go to bed until you know you can get to sleep with the mask on instead of fighting the ventilator IS part of good sleep hygiene.

Oh, that's nice to hear. I thought I was screwing up by not going to bed at a consistent time every night. Some nights I WANT to go to bed early, but know what will happen on the ventilator so I don't. I ALWAYS wait until I can't stay awake. Nice to know that's actually smart.

The first rule for insomniacs is: Only go to bed when you are sleepy enough to get to sleep after all. And when there's a mask involved, you have to be sleepy enough to fall asleep with the mask on.

I think I am breaking PART of this rule by being in bed, but it can't be helped. I lay in bed, watching TV, reading or playing word games, but not sleeping, sometimes for 3-4 hours. With my physical limitations, I can't be up and about the house. Moving around is such an effort for me that it typically wakes me back up, so I MUST be in bed, waiting for that sleepy feeling.

There are a few times that I feel that I'm ready to sleep, but decide I need to use the bathroom before going to sleep. Once I do that and get back in bed, I'm awake again and have to entertain myself until the "sleepies" hit me again.

Your leak rate sensor may see your exhale as a reduced net flow and your inhale as an increased net flow. This would cause fluctuations in the reported leak rate.

To check this you can plug your mask and just let it flow through the vent. Then watch the leak rate. If it is stead, then my wild guess has some merit.

I was just reviewing the book "The End of Illness." In it Dr. Agus talks about the bodies need for predictability. You should try to have a set bed time and a set wake time if you want to have the best quality sleep. The same goes for eating. He has found that if you miss your mealtime, your body goes into mild distress until you finally eat something. We all know what happens as a result of the body going into distress during sleep apnea. It sounds like this could be almost as bad and Dr. Agus thinks that set times and predictability promote health and helps you avoid illness.

He has other ideas that seem a little controversial, but it is an interesting read and something to consider.

Madalot wrote:usually during that time, we're doing basic bipap of 15/9 -- no significant variances. I just find it weird that it can vary so much without my making a move.

It is moving by its own settings. EPAP and IPAP varies...vent rate will vary with each change upon inspiration and exhalation. Long before the events start making the machine do the other stuff.

Pugsy wrote:

Madalot wrote:usually during that time, we're doing basic bipap of 15/9 -- no significant variances. I just find it weird that it can vary so much without my making a move.

It is moving by its own settings. EPAP and IPAP varies...vent rate will vary with each change upon inspiration and exhalation. Long before the events start making the machine do the other stuff.

Makes sense. I won't give it anymore thought. Thanks.