Inconsistent CPAP results

[cboyce]

I've been struggling with my sleep/CPAP for about a year now. I have very inconsistent usage, and by that I mean some nights I'll be able to sleep through the whole night with the mask, and others I'll wake up after a couple hours and not be able to get back to sleep with the mask on. The number of events I experience is also very inconsistent. Given the same amount of time, one night I might only have a few events, and another night I might have dozens. In an effort to try to figure out why I sleep better some nights, I'm trying to find different variables to control. I've been trying to normalize when I go to sleep and my sleep position, but I'm not sure what else to try changing. Any thoughts on what I can try to narrow in on what works and what doesn't? Here's a link to my CPAP data from last month in case it's helpful.

[Pugsy]

Hmmm.
You really are all over the place aren't you?
Obviously seriously fragmented sleep...any idea what wakes you up? Then can't go back to sleep? Sleep maintenance insomnia...did you have this occur before starting on the cpap machine?
During your sleep studies was there any mention as to supine position making any huge difference in events? REM?

You don't seem to need much pressure above 7 cm. Most of the increases that I saw were related to leaks more than anything else. On the off chance that pressure changes themselves may be impacting your sleep, you might want to tighten the APAP range pretty tight or even consider straight cpap.

Where to start? The fragmented sleep would be my first thought. Some serious detective work on what wakes you up and why can't you go back to sleep. Is it the cpap machine or something else? Meds? Pain? Bed comfort? Leak? Anything?

On the couple of nights with higher AHI and clusters...sleep position maybe? The minimum might be just a bit low for those nights but obviously is okay for other nights.

[cboyce]

Hmmm.
You really are all over the place aren't you?

That is very much how I feel!

Obviously seriously fragmented sleep...any idea what wakes you up? Then can't go back to sleep? Sleep maintenance insomnia...did you have this occur before starting on the cpap machine?

I'm not entirely sure what wakes me up at this point. I actually got a night-vision camera so I could record myself, I seem to sleep soundly until I get to my first REM section. Then I thrash around a lot, but I can't tell whether I'm still in REM once I start moving (just by watching the video that is). I'm also still working on syncing the time on my CPAP to the video time, since it's hard to correlate specific events at the moment. My feeling is that when I hit REM stage, my sleep is very shallow and so maybe the movement of the mask is disturbing me, or breathing differences in REM is causing the CPAP to kick in and wake me up. I have a lot of recollections of being half-awake and aware of the mask.

During your sleep studies was there any mention as to supine position making any huge difference in events? REM?

I was supine the entire time in my sleep studies, so unfortunately I don't have anything to compare it against (in my actual sleep studies). My current theory is that I have slightly fewer events on my side, but I move so much it's difficult to get my body to cooperate. I bought one of those night shirts with the built-in foam thing on the back, but I just wake up sleeping on it.

You don't seem to need much pressure above 7 cm. Most of the increases that I saw were related to leaks more than anything else. On the off chance that pressure changes themselves may be impacting your sleep, you might want to tighten the APAP range pretty tight or even consider straight cpap.

I'll give straight CPAP a shot. I always use the ramp feature, so I'm not sure how much I actually need the APAP as far as comfort is concerned.

Where to start? The fragmented sleep would be my first thought. Some serious detective work on what wakes you up and why can't you go back to sleep. Is it the cpap machine or something else? Meds? Pain? Bed comfort? Leak? Anything?

Most nights, I feel that it is the machine. I can usually get back to sleep when I remove the mask. I feel like I'm so "aware" of it when I wake in the middle of the night it's hard to fall back asleep with it. Though, I think the past couple weeks meds might be contributing to it. I've been taking zolpidem/Ambien regularly for quite a while now, and it's definitely less effective than it used to be. Getting of that is another goal, but I'm trying to tackle one thing at a time.

Thanks for the help, I've been less than thrilled with help I've received from my doctors so far and it's very encouraging to get feedback so quickly here!

[ameriken]

I've seen a couple of other threads (one was just posted in the past few days) where they are setting up a video or cam to record their sleep, and it both cases it was very enlightening because they're finding out that how they sleep is far different than how they thought they sleep. Been thinking about doing it myself, might be a good idea for you as you try to find what's disrupting your sleep.

[Pugsy]

If you think most of the fragmented sleep is due to machine and/or mask related issues then that is a good of a place as any to start.

APAP works well for a lot of people but some people who are very sensitive to pressure changes may find it disturbing.
Also if the mask leaks a bit..then the machine will try to stabilize the pressure inside the mask with a bit more pressure which then may in turn feed the leak monster more and leaks can disturb sleep. Your APAP range is essentially wide open and some people do better with a tight range. I happen to use 10 cm minimum and 20 cm maximum because sometimes I need 18 cm but the pressure changes never bother me and I never know I hit 18 until I see a report.
Your APAP rarely gets to 10 cm. In theory it hurts nothing to have the maximum wide open because the machine won't go to where it doesn't think it should go but if you happen to be sensitive to pressure changes...well even a little could mess with your sleep.

7 cm...you shouldn't even need ramp but if you do keep the time short.
You might also consider changing the Flex setting to see if one of the other settings is more comfortable. Or even turning it off as an experiment.

Sleep maintenance insomnia due to cpap use. One of our other members (Robysue) has some experience with it. You can read some of her ideas about it here. http://adventures-in-hosehead-land.blog ... er_19.html

Meds for sleep? Well we can build up a tolerance to them. Something to talk to your doctor about.
I would have sleep maintenance insomnia due to pain if I didn't take something to help sleep through the pain.
Ambien does well but I have always been careful to go off of it for a while and take something else for a period of time so as not to build up a tolerance. Low dose of amitryptiline works well for me. Some people do well with Melatonin but I had extreme vertigo with it. Despite it being "natural" and OTC...it does have some nasty side effects for some people.

[nanwilson]

Could it be as simple as your evening regime prior to bedtime?
Couple of things that might help in that line of thinking.......
I can't eat or drink anything after 8pm, have fragmentented sleep if I do
if I have a big meal that takes longer to digest, I'm up about 1AM walking around the house
Can't drink alcohol in the evening, keeps me awake and I thrash around
Don't excercise in the evening..
I DO take amitryptiline at bedtime.
Just my thoughts as these are the things I have to keep in mind in the evening or else I don't have a good night.
Good luck

[robysue]

cboyce,

I've taken a look at the data you posted. My own take on the data in your Encore Viewer report:

1) As you yourself indicate, you've got some mighty inconsistent usage. 38% of the days in the period have less than four hours of use, and seven of those days have less than three hours of use. So we've got to help you figure out a way of getting to the point where you are sleeping with the mask 100% of the time.

2) Leaks are a nasty, but intermittent problem. What I mean by that is this: Of the seven days of detailed data, you've got two nights (11/1 and 11/2) with exceptionally good leak lines; two and a half nights (10/29, 10/31, and second part of 11/3) with decent leak lines; and two and a half nights (10/28, 10/30, and first part of 11/3) with some pretty significant, pretty bad leaking going on. Your long term goal is to get most (all) of your nights looking like the night of 11/1. So it may be very important to try to tease apart what's different on those nights in things that are not directly tied to the CPAP. More nasal congestion perhaps? More tossing and turning perhaps? Aging pillows starting to cause problems? More caffeine or alcohol during the day? And at the same time, you need to look at what is different on the nights with decent and exceptionally good leak lines: Early supper? Lots of time outside? More exercise than normal? Took a sleeping pill? Even something as simple as a shower before bed?

3) The AHI does seem to be bouncing around between very good (AHI<1.5) to not so good (AHI > 4.0). But we can't put all the blame on "Large leaks may mean the low AHI data is suspect" because the nights of 11/1 and 10/31 both have good leak lines and low AHIs. Indeed, the night of 11/1 is exceptionally good in both the leak line AND the AHI. And we also have two nights, 11/2 and 11/3 (second half), with good leak lines and high AHI. Pugsy's question about whether the diagnostic test showed a great deal of difference between REM and NREM AHI and between supine and non-supine AHIs is relevant. But it's also worth pointing out that these appear to be the only two days in the data period with AHI >6. And in looking at the rest of the summary data, it appears that no other day has an AHI > 5. And many of us have the isolated day or two here and there with higher than expected AHIs. Prudent watching may be all that is called for right now as far as the AHIs are concerned.

4) The "wakes" that clearly lead to mask removal (the only ones we can really see in Encore Viewer) don't seem to be triggered by anything that can easily show up in the data. Some of them appear to fit the "I didn't get to sleep so I took the mask off" patterns of use; others fit the "I woke up and couldn't get back to sleep, so I took the mask off" patterns of usage:

• On 10/29, the mask goes on at 9:39 and comes off a bit less than an hour later. Leak line is fine. No events. I suspect you may never have gotten to sleep and you just gave up this night?
• On 10/31, there are a couple of hypops and a couple of RERAs in the half hour before, so maybe that's what woke you up. The leak line goes up right the point where the machine is turned off. So my guess is that sharp uptick is just caused by you taking the mask off as you turned the machine off.
• On 11/2, you first mask up at some point after 9:12 pm for a few minutes, but then take it off. Again, my guess is that you actually never got to sleep before taking the mask off. Unlike the night of 10/29, you were able to force yourself to mask back up around 12:15 pm and slept with the mask the rest of the night. Of course, it wasn't the best night AHI wise.
• On 11/3, you mask up around 8:12 and take the mask off around midnight. The leak line looks good, but the pressure HAD started to increase due to a nasty cluster of events. The pressure could have woken you up. Or the events. Or your body may have been confused about whether it was time to get from a "nap" or time to try to sleep some more.
• Other than 11/3, all the other "MASK OFF for the whole night" times that happen in the wee hours of the morning (between midnight and 5:00AM) don't seem to be triggered by significant increases in pressure, leaks of any size, or even particularly nasty clusters. They just seem to be "random" wakes. Maybe you are waking up after a REM cycle (not uncommon) or maybe something else is waking you up. But what seems to be happening is that you notice you are awake, you then notice how awkward/uncomfortable the mask feels, and so you then choose to take the mask off and go back to sleep without it for the rest of the night

5) Which brings us to Bedtime. On the summary data, it looks like the first "Mask ON" times occur as early as 8:00pm and as late as midnight or a bit later. Moreover, ALL of the nights where you used the mask for less than four hours are nights where you attempted to mask up rather early---as in you apparently went to bed between 8 and 9 pm. Also notable is the fact that on ALL the days where you wait until at least 10 pm to go to bed, you seem to keep the mask on for at least 4 hours. So, it could be that you are simply trying to force the issue too much by trying to go to bed too early. Are you genuinely sleepy enough to sleep the whole night when you go to bed that early? Or is your body waking up after a long multiple hour "nap" just in time for you to have a frustrating time for "get to sleep for the rest of the night"? What do you think would happen if you simply moved your nightly bedtime back to 10:30 or 11:00 every single night? As in you just do not allow yourself to go to bed any early than 10:30 no matter how sleepy you are?

6) Which brings us to wake up time. What time do you typically get up for the morning? I ask because the MASK OFF times seem to be awfully early for waking up for the day---even on the nights where you get 6 or more hours of mask time. Because on about 13 of the 31 days in the report period, you had the mask on for at least four hours, but MASK OFF was still before or just at 6:00 AM, and sometimes MASK OFF was well before 6:00 AM. For example on the following nights, you have at least one continuous block of usage that is at least 5 hours in length with MASK OFF times no later than 6:00 AM:

• 10/6: Over 6 hours of usage, but MASK OFF is right around 6:00
• 10/8: Almost 10 hours of usage, but MASK OFF is right around 6:00
• 10/13: Over 8.5 hours of usage, but MASK OFF is right around 6:00
• 10/16: Over 7.25 hours of usage, but MASK OFF appears to be between 3:00 and 4:00 AM
• 10/17: Almost 5.5 hours of usage, but MASK OFF appears to be between 1:00 and 2:00 AM
• 10/18: Six hours of usage, but MASK OFF appears to be between between 1:00 and 2:00 AM
• 10/25: Just at 6.25 hours of usage, but MASK OFF is right around 4:00 AM
• 10/26: Over 7.25 hours of usage, but MASK OFF is around 5:00 AM
• 1/1: Almost 5.75 hours of usage, but MASK OFF is a bit before 4:00 AM
• 1/2: About 5.25 hours of usage, but MASK OFF is about 5:00 AM

So: Just what time do you NEED and/or WANT to get up by? Are you a morning person who wants to be up and functioning by 5:00 AM? Or are you someone who really wants to sleep until 6:30 or 7:00 AM every day? And are you just going back to sleep without the mask after you take it off when you wake up between 2:00 and 6:00? All this is important because figuring out what time you want wake up to be is going to be critical in figuring out where to go from here.

7) Which brings us to insomnia: Either you've got a pretty good case of sleep maintenance insomnia brewing along with wake-too-early insomnia or you're sleeping maskless for very long stretches. Either way, you've got problems with getting to sleep and getting back to sleep with the mask on your nose. And some insomnia tips might help you resolve some of your immediate problems.

Now to look at some qualitative stuff in response to questions cboyce asks.

I've been struggling with my sleep/CPAP for about a year now. I have very inconsistent usage, and by that I mean some nights I'll be able to sleep through the whole night with the mask, and others I'll wake up after a couple hours and not be able to get back to sleep with the mask on.

The data show that MASK OFF for the night is highly erratic. This is evidence that you are waking up and taking the mask off. But it's not being done after an hour or two of mask time: As often as not, you're waking up and taking the mask off for good between 2:00 and 5:00 AM after 4--5 or more hours of sleep. And as your data show, the earlier you go to bed, the more likely you are to take the mask off before 4:00 AM AND the less likely you are to sleep for more than four hours with the mask. That leads to the following two suggestions on things to try:

Suggestion ONE: Impose a much more rigid Time in Bed schedule for sleeping for the time being. This involves two parts: (1)Setting and enforcing a mandatory wake up time and (2) Setting an appropriate bedtime and waiting until you are sleepy enough to get to sleep and stay asleep.

• Fix a mandatory wake up time. Choose a time that fits your life style. It's got to be a time that you're willing to get up seven days a week. And it's got to be early enough for you to get to work, but late enough where you'll still be able to force yourself out of bed by it on weekends. Since you seem to be able to sleep with the mask until about 6:00 on many days, if 6:00 is not an unreasonable wake up time for you, then make that the wake up time. If you are often or always going back to sleep without the mask for an hour or two after waking up at 6:00 and taking the mask off, you'll need to break yourself of that habit if you want wake up time to be later than 6:00 AM.
• Fix a bedtime that is late enough for you to feel sleepy enough to sleep the whole night through. Ideally you should pick that bedtime about 7 or 8 hours earlier than you want your wake up time to be. So if WAKE UP is at 6:00 AM, you need to delay going to bed until it is 10 or 11 PM. Any earlier than that and you're risking not being able to sleep the whole night with the mask. AND NOTE: When you get three to four hours of decent sleep between 8 and midnight, it can become darn near impossible to get back to sleep simply because the "nap" has rested your body so much. So: Resolve to put off going to bed until 10PM and IF you're not sleepy at 10PM, stay up until you ARE sleepy enough to fall asleep with the mask on and stay asleep with the mask on.

Suggestion TWO: Do NOT allow yourself the luxury of going back to sleep maskless. The inconsistent usage pattern also indicates that your unconscious mind is still fighting the necessity of sleeping with the mask on all night, every night. And every time you go back to sleep without the mask, you perpetuate the problem because you allow your unconscious mind (and perhaps your conscious one too) to continue to believe that it is "ok" to sleep without the mask, and indeed that it is somehow "better" to sleep without the mask. You absolutely must train yourself to not go back to sleep without the mask on. If you wake up and cannot get back to sleep with the mask on in a reasonable amount of time, you need to get out of bed, go into a different room, settle yourself down, and then return to bed when you are both calm enough and sleepy enough to face masking up and trying again. It won't be easy at the start. You'll have some nights where you're out of bed more than you are in bed. But within a couple of weeks or so, the amount of time you spend out of bed should start to drop. And after another couple of weeks, you should be able to go back to sleep with the mask on your nose almost all the time.

The number of events I experience is also very inconsistent. Given the same amount of time, one night I might only have a few events, and another night I might have dozens.

Most nights your AHI is pretty much where we want it to be. You've had two bad nights in a row AHI-wise. And even those two nights are not outrageously bad. That's not enough to worry about just yet. My take on this is that you first need to start wearing the mask ALL the time. Once you are wearing the mask all the time and sleeping pretty much through the night most nights, then it's time to start focusing on whether your AHI can be brought down. So I'd put this one off for a while: Teaching yourself to sleep WITH the mask on ALL night long is more important than chasing an AHI < 1 every single night at this point.

In an effort to try to figure out why I sleep better some nights, I'm trying to find different variables to control. I've been trying to normalize when I go to sleep and my sleep position, but I'm not sure what else to try changing. Any thoughts on what I can try to narrow in on what works and what doesn't?

Several things:

First, change only ONE or TWO things at a time. When you make a bunch of changes all at the same time, it's difficult to tease apart what's working and what's not.

Next, make the MOST IMPORTANT, MOST SIGNIFICANT changes with the HIGHEST potential payoffs first. In your case, that means you absolutely have to get to where you are capable of keeping the mask on all night long AND getting some kind of halfway decent sleep with the mask on your nose. In my opinion, you need to make TWO CRITICALLY IMPORTANT changes NOW----changes that have HIGH potential for significantly positive payoffs in terms of increasing your usage time and beginning the journey towards quality sleep with the mask.

The FIRST change I think you need to make right now is the BEDTIME / WAKE UP schedule. I think that you need to get BEDTIME and WAKE UP TIME normalized. Once you are sleeping more normally, then you can worry about changing other things.

The SECOND change I think you need to make right now is resolving to NEVER intentionally fall asleep without the mask on your nose. Until you force yourself to break the habit of consciously taking the mask off "just to get some sleep", you will never teach yourself to tolerate having that six foot hose on your nose all night long, every single night. Take it one night at a time: Each night before bedtime tell yourself: Just for tonight I will NOT take the mask off when I wake up and then turn over to go back to sleep without the mask.

I also think that to improve the overall, long term situation, you need some data that ENCORE cannot provide you with. A good night's sleep involves far more than simply using the machine the whole night with an AHI < 1.0. I know: During my first four months of PAPing, I was sleeping with the machine on my nose ALL NIGHT long, every night (and with 6--8 hours of usage almost every single nights) with AHIs consistently in the 0.5--1.5 range. And I still felt absolutely horrible both when I woke up and all day long. Fragmented sleep comes in many forms and I knew I was waking up a lot. And getting back to sleep was usually problematic. I knew I was tossing and turning a lot. And the bedtime insomnia was really bad. I was getting enough "hours" of (badly fragmented) sleep by sleeping fitfully far too long into the morning. And until I started tackling the insomnia as its own distinct problem, I was spinning my wheels in terms of making this crazy therapy work for me.

And what other data do I think you need to track? First, you need to record the standard sleep log data, which includes:

• Time to bed
• Time out of bed
• Estimated time to sleep
• Estimated number of wakes
• Estimated total sleep time
• Sleep efficiency = (Estimated total sleep time)/(Time in bed) where Time in bed = Time out of bed - Time to bed.
• A brief assessment of how you feel when you wake for the morning
• A brief note about anything you actually remember about the wakes. Notes such as "woke two times with a bad leak in my eyes" is enough detail.
• Be sure to document how many times you actually have to get out of bed because you can't stand to have the mask on your face one more minute.

Next I'd also keep track of some other things that are known to affect sleep---either in a negative way OR in a positive way. This includes things like:

• Time and size of last food before bedtime. Large meals shortly before bed often cause sleep problems.
• Alcohol and caffeine use---particularly in the afternoon and evening.
• All medicines---when you take them and what the dose is. Be sure to include OTC drugs AND supplements, even vitamins.
• Nasal congestion problems and what you did about them (neti pot? If so, when did you use it.)
• Exercise: How much and when during the day. Some daily exercise is good; too much intense exercise too close to bedtime can make things worse.
• Headaches and other aches and pains. It can be tough to get a good night's sleep when you're in pain. So keep track of when you go to bed in pain and what (if anything) you do to treat the pain when you have it.
• Stress level. For many of us, significant stress in our daily life leads to restless nights. If there's a major stressor going on, make a note of it in your log.
• Evening activities. In the last two hours before bedtime, what are you doing? Some common evening activities---such as watching TV and web browsing can aggravate sleep problems. Some common activities---such as taking a warm bath/shower or reading a real book can improve the night's sleep.
• An overall assessment of how you felt during the day as a whole. Did you function OK? Did you have enough energy to do what you wanted to do? Did you get sleepy, but after an hour or two recovered enough to enjoy the rest of the day?

And what to do with this additional data? After a couple of weeks or maybe a month, you should start seeing what things correlate to:

• a good night in terms of treating the apnea (low AHI, good leak line, and appropriate usage)
• a bad night in terms of the apnea (high AHI, bad leak line, or way too little usage)
• a subjectively good night's sleep (in terms of getting enough total sleep and feeling reasonably rested/refreshed in the morning)
• a subjectively bad night's sleep (in terms of getting too little sleep or feeling lousy when you get up in the morning)
• a good day---in terms of daytime functioning, energy levels, and whatever else "good day" means to you
• a bad day---in terms of daytime sleepiness, exhaustion, and whatever else "bad day" means to you

Once you start seeing these kinds of correlations, then you'll know what kinds of things you might want to change next to start optimizing your CPAP therapy.

[robysue]

I'm not entirely sure what wakes me up at this point. I actually got a night-vision camera so I could record myself, I seem to sleep soundly until I get to my first REM section. Then I thrash around a lot, but I can't tell whether I'm still in REM once I start moving (just by watching the video that is).

Normal REM sleep involves muscle paralysis. In other words, in normal REM sleep, we can't thrash around because our muscles are paralyzed. (The muscle paralysis keeps us from acting out our dreams every night.) Now, it is true that in some sleep disorders, the REM muscle paralysis doesn't fully take place. But that kind of a disorder should have showed up in your diagnostic sleep test if you got into REM. So: Is there anything in the sleep test data that indicates you have more sleep problems than just OSA?

I'm also still working on syncing the time on my CPAP to the video time, since it's hard to correlate specific events at the moment. My feeling is that when I hit REM stage, my sleep is very shallow and so maybe the movement of the mask is disturbing me, or breathing differences in REM is causing the CPAP to kick in and wake me up. I have a lot of recollections of being half-awake and aware of the mask. (emphasis added)

The emphasized statement is a hallmark for plain old insomnia problems. My guess is that REM has nothing to do with it---except that maybe AFTER a REM cycle is over, many people do go back into Stage 1 or Stage 2 sleep (to start a new sleep cycle). Those of us with insomnia problems are pretty prone to going all the way to WAKE at the end of the REM cycle. And insomniacs are notorious for having trouble distinguishing between Stage 1/Wake and sometimes Stage 2/Wake. In controlled studies, it's been shown that if you suddenly wake a person up from Stage 2 sleep and ask: Were you awake before I woke you up?, non-insomniacs and insomniacs answer this question differently. Far more insomniacs will tell the researcher/tech they were awake before being being woken up than non-insomniacs.

My guess? I think the thrashing around is occurring in Stage 1 and Stage 2 sleep. And eventually, the trashing, the awkwardness of thrashing with the hose, subtle pressure increases either from compensating for leaks (triggered by the trashing) or in response to events, and the light stage of sleep all combine together to cause you to fully arouse to WAKE long enough to become keenly aware that you are now both AWAKE and NOT COMFORTABLE.

Where to start? The fragmented sleep would be my first thought. Some serious detective work on what wakes you up and why can't you go back to sleep. Is it the cpap machine or something else? Meds? Pain? Bed comfort? Leak? Anything?

Most nights, I feel that it is the machine. I can usually get back to sleep when I remove the mask. I feel like I'm so "aware" of it when I wake in the middle of the night it's hard to fall back asleep with it.

Part of the problem is that you keep allowing yourself to go back to sleep without the mask on your nose. So that allows your unconscious mind AND your conscious mind to keep believing that the mask is a foreign, strange thing that does not have to be tolerated. The only way that you will ever learn to not be "so aware" of the mask every time you wake up is to NOT allow yourself to fall asleep without the mask on your nose.

You need to work HARD on establishing a deep, three way connection in your unconscious mind, your conscious mind, and your body that:

• Time in Bed = Time to Sleep = Time to Mask Up

Once that connection is firmly established, you'll find that you will (slowly) become less aware of the hose on your nose when you wake up.

Please take the time to read through my Taming the CPAP-Induced Insomnia Monster essay. There's a link to it in my signature as well as in Pugsy's post.

Though, I think the past couple weeks meds might be contributing to it. I've been taking zolpidem/Ambien regularly for quite a while now, and it's definitely less effective than it used to be. Getting of that is another goal, but I'm trying to tackle one thing at a time.

I'd talk to the doc about the zolpidem losing its effectiveness as well as a strategy for getting yourself off of it. Part of that strategy will involve paying serious attention to your overall sleep hygiene. And part of sleep hygiene is establishing a regular sleep period, only going to bed when you are genuinely sleepy AND during your regular sleep window, only being in bed for a reasonable amount of time while trying to get to sleep or get back to sleep.

[kteague]

Looks like you're getting some good pointers to try to help with your sleep maintenance. I'll just add one more thing to the mix for you to consider. What exactly did your sleep study reports say about limb movements? And can you describe in detail what you see when recording your sleep at home? I ask because when my RLS and PLMD was not well treated, something as simple as caffiene or certain cold meds could turn me from being a restless sleeper into an almost violent thrasher. All the moving around caused it to be nearly impossible to keep my mask secure and leak free. Once I became irritated or even agitated, I was in such a heightened state of sensitivity I simply could not tolerate the mask touching my face or the straps on my head.

Just throwing that out there in case it is helpful to you or someone else reading this.

[robysue]

kteague,

You make some really great points about RLS and PLMD. I'm blessed that they've not been factors in my struggles this past year. That's for picking up on that very real possibility in the OP's current situation.

[kteague]

kteague,

You make some really great points about RLS and PLMD. I'm blessed that they've not been factors in my struggles this past year. That's for picking up on that very real possibility in the OP's current situation.

Sometimes I'm reluctant to say anything because my mind tends to go there maybe too readily, when it's more likely other factors are involved. You know, as hard as it has been with my limb movement issues, I still think I'd prefer something identifiable and treatable to a chronic unrelenting insomnia. My heart goes out to you and it's commendable how willing you are to share your experience so others might glean something of personal use.

[turbosnore]

If the awakenings in the night are spontaneous, you might also want to try some tryptophan tablets.
It's one of the common amino acids and not a synthetic drug.

It tends to keep the nightly spontaneous awakenings away.
It just takes a couple of days (maybe a week) to take effect.

I have heard somewhere that the effect of warm milk is based on the tryptophan content of the milk.

[avi123]

I've been struggling with my sleep/CPAP for about a year now. I have very inconsistent usage, and by that I mean some nights I'll be able to sleep through the whole night with the mask, and others I'll wake up after a couple hours and not be able to get back to sleep with the mask on. The number of events I experience is also very inconsistent. Given the same amount of time, one night I might only have a few events, and another night I might have dozens. In an effort to try to figure out why I sleep better some nights, I'm trying to find different variables to control. I've been trying to normalize when I go to sleep and my sleep position, but I'm not sure what else to try changing. Any thoughts on what I can try to narrow in on what works and what doesn't? Here's a link to my CPAP data from last month in case it's helpful.

Reply to: Any thoughts on what I can try to narrow in on what works and what doesn't? :

The same with me while using a Resmed machine. I have found that there is nothing to control except our own bodies and spirits. Apparently, as living human being we change daily. Let's control our own physical well being!

Those XPAPs that we are using in our homes were not made to detect sleep disturbances reliably, but only to blow air to keep our airways open. Except in very few cases, they are not meant to treat medical conditions.

Then on top of it, you got on this board, active posters, roaming around, and rendering medical advice and by doing so they impostor as mavins in sleep medicine. I would watch out!

Comments to : I've been struggling with my sleep/CPAP for about a year now. I have very inconsistent usage, and by that I mean some nights I'll be able to sleep through the whole night with the mask, and others I'll wake up after a couple hours and not be able to get back to sleep with the mask on.

Usually, at midnight I try to fall a sleep with the mask on. If I don't succeed to fall asleep within 15 min then I try without the mask. I do it b/c I know that I usually get up to pee after 3 to 4 hours. So then I put the mask on and in my case I have no problems falling back to sleep right away. If for any reasons I can't fall back to sleep I take 0.5 of Xanax and if it does not work after 15 min I take 7.5 mg of Zolpidem. This happens in rare occasions.

If I fall asleep at midnight with the mask on but wake up after 3 to 4 hours to pee I then continue without the mask but put the mask on after the next peeing break.

Overall, I am not an avid CPAPer to insist to sleep with the CPAP for more than 4 hours a night. Being a retiree I often nap (less than one hour) either before or after noon and always without CPAP.

But now with the new standard time I have yet to find out.

[cboyce]

Wow, thank you to ameriken, Pugsy, nanwilson, robysue, kteague,turbosnore and avi123! It really makes me feel more hopeful with all the input and outpouring of help everyone has offered.

As a few people have observed, my sleep schedule has been erratic, and in retrospect I think it's been bit of a self-defeating cycle; I feel like I need 10 hours of sleep to be rested, so knowing I have to get up by a certain time, I "make" myself go to sleep with zolpidem. When it wears off and I'm not actually that tired, it makes sense that I'd get restless, and because I haven't trained myself to keep the mask on or get up, I end up taking it off, then sleeping poorly for the rest of the night. Then it feels like I need 11 hours of sleep, rinse and repeat. I think 6am is a pretty realistic time for me, so the first thing I'm going to try to tackle is a more regular sleep schedule. As robysue's very thorough reply noted, I seem to sleep better with the mask when I go to sleep later, which makes sense since I'm actually more tired then. Pugsy's link and robysue's reply have also helped me really take to heart how important it is to integrate the mask into "what I do" when I sleep. Though I haven't got a good pusle oximeter to actually measure things when I sleep without the mask, I seem very very fidgity when I don't wear the mask (in the video I've taken so far).

I've had 3 sleep studies done, and for anyone interested, you can check them out at here. The username and password are both "cpap". In my initial study, I didn't appear to have enough events to warrant a CPAP then, but when I went back I did a full night with a mask. There doesn't seem to be a whole lot of detail about movement in the sleep study notes, though I managed to get zero minutes of REM sleep during the 360 minutes I was asleep. There's also a note of complex sleep apnea (CPAP induced) but I'm not sure if that's something that I can detect with the maching I have. I have a screenshot of some more detailed data from last night. I don't really have any idea how to interpret the data, other than to take the machine's word for when events occurred. When my breathing changed on the graph, I usually saw myself adjusting position in the video, but the timing between the video and CPAP data isn't exact enough to determine if I started moving, and my breathing changed because I was breifly aroused from sleep, or if my breathing caused the movement.

In the mean time, I'll be making a concerted effort to keep the mask on and get a regular schedule. Thanks again for all the support, it's been an enormous help.

[robysue]

Those XPAPs that we are using in our homes were not made to detect sleep disturbances reliably, but only to blow air to keep our airways open. Except in very few cases, they are not meant to treat medical conditions. (emphasis added)

Really avi123? xPAPs are designed to specifically treat obstructive sleep apnea, which is indeed a very real medical condition.

xPAPs may also be appropriate tools for treating other forms of sleep disordered breathing (SDB)---an umbrella term to include such medical conditions as OSA, central sleep apnea (CSA), complex sleep apnea (CompSA), and upper airway resistance syndrome (UARS). Now its true that straight CPAP/APAP/Bi-level may or may not adequately deal with CSA and CompSA; many folks with these medical conditions need the fancier, more expensive AVS and Bi-Level S/T machines.

Now I'll grant this point: Using an xPAP is not going to magically fix all medical problems: xPAPs treat SDB and, in the case of OSA, they typically treat it very very well. If you've got other medical problems, they'll still need to be appropriately treated even though you use an xPAP.