Update from the insomnia wars ...

[robysue]

As you may recall, at my December 30 semi-emergency appointment with my PA to discuss my lack of sleep and it's impact not only on my non-existent quality of life but that of my family as well, I made a major turning point in adapting to BiPAP therapy: I told the PA the most critical problem was NOT the BiPAP, it was the insomnia monster running rampant through my bedroom every night.

And that I needed help fighting it. Since all the good sleep hygiene tools I've used throughout my adult life to keep insomnia tamed are not enough to catch this monster and reign him in. The PA and I have been discussing sleep hygiene right from the start of my less than successful efforts to adjust first to CPAP and then to APAP. She's been impressed with the fact that I routinely use almost all of the standard sleep hygiene practices. But there has been one that I've never been good with: Strict bedtime and wake up times. And so almost two weeks ago my PA imposed a strict bedtime and strict wake up time on me in an effort to defeat the insomnia monster.

She let me pick my wake up time. So based on my spring semester and the fact that I just cannot see myself getting up really, really early every Saturday and Sunday for the rest of my life --- or at least the foreseeable future, I picked 7:30 am. That works---it's actually pretty much been my "summer" wake-up time during the week for years and my preferred wake-up time during the academic year if I didn't have an 8:00 or 9:00 class. My earliest class next spring is 11:00, and on MW, I teach until 9:00PM.

Then PA then told me my bedtime for the foreseeable future would be 1:30 AM---precisely six hours before wake up time. I'm NOT ALLOWED to go to be any earlier---no matter HOW sleepy I am. I must stay up that late. And if I'm not sleepy at 1:30, I have to stay up until I am sleepy enough to go to bed and try to go to sleep. And I still have to get up at 7:30 regardless of when I actually go to bed..

And, of course, if I find myself lying in bed for what I think is 30 minutes or more, I'm supposed to get out of bed and go into a different room until I'm sleepy. Or if I wake up and and can't get back to sleep---I'm to get out of my nice warm bed and go into a different room and do something else until I'm feeling sleepy. And no matter how many times I wake up, I still have to get out of bed by 7:30.

I'm supposed to keep track of when I go to bed, estimate how long it takes me to fall asleep, and how many times I wake up each night too. I'm also keeping track of when I actually do have to get out of bed and how long I wind up staying out of the bedroom. Of course all this time stuff has to be done without looking at a clock. Well, except for looking at the clock when I head off to bed or when I wake up. Even there, I've discovered that I can use Encore Viewer to help---if I really don't want to detour into the kitchen when I know it's after 1:30, I can fill in the "time I went to bed" based on when Encore Viewer says I turned the BiPAP on. I am using the Encore Viewer reports to fill in the times for when I get out of bed and when I return to bed so that I don't sit and watch the clock in the middle of the night. That's helpful actually.

It's been two weeks since I started this regime. I also started reading Sound Sleep, Sound Mind about the same time. I'm not yet that far into it. But it's been rich with food for thought and I'm very glad I bought it and I'm thinking much about what Dr. Krakow has to say. I have to say that while it sounds like my PA has me focusing way too much on time, in reality the way the sleep log actually works, the PA's approach is nicely reinforcing many of Barry Krakow's ideas about how insomniacs must learn to give up watching the clock.

Last night is in some sense a decent example of what I mean, although it was NOT a good night as far as the insomnia was concerned. For reasons I don't want to elaborate, it was almost 3:00 by the time I was sleepy enough to go to bed. I didn't actually look at the clock in the kitchen as I headed off to bed because I knew I could fill the time to bed slot in close enough in the morning. Had a bit of a rough time drifting off to sleep---was conscious of the 30 minute ramp getting up to full pressure (note: my ramp only goes from 7/5 to 8/6, so it's not like "full pressure" is a hurricane or something), and almost made the decision to get up, but decided to give myself a few more minutes and hit the ramp again. And then fell asleep almost immediately. Time to sleep? Maybe 35 minutes---but 10 minutes of that time is mask fiddling (machine is running, but I'm not yet in my final position with my eyes closed lying down and actively TRYING TO SLEEP. And the next thing I know I'm WIDE AWAKE with a NASTY PROBABLE MIGRAINE headache and I'm completely clueless about what time it is, but can tell it's got to be close to dawn. I've been waking up sometimes "too close" to 7:30 to comfortably get back to sleep on some days---when the alarm goes off, I have to drag myself out of bed. I'm really worried that it's after 7:00. I hit the ramp, but I can't get back to sleep. I hit the ramp again (before it gets all the way up to 8/6) and still can't get back to sleep and I admit defeat and get up and go into the dining room (where there is no clock and I have no desire to look at a clock because I really truly do NOT want to know what time it is at this point). I get a drink of water and that helps the headache. And I sit for maybe 5 minutes or 10 at most and go back to bed---never looking at a clock because all I have to write down in the sleep log is "I woke up once and had to get out of bed" And when I go back to bed, I fall asleep in about 15 minutes or so. I wake up one other time during the night (without the headache) and manage to get back to bed within about 10 or 15 minutes. Alarm goes off at 7:30, and I drag myself out of bed by 7:35.

Encore Viewer confirms that I went to bed at 2:50. So total time in bed is about 4:45 - 0:10 = 4:30 when you take out the 10 minutes I had to get up after that first wake up. Two wake ups for the night. One major---estimated time? Well I spent more time in bed than I should have before giving up, plus the 10 minutes out of bed, plus the 10 minutes to get back to sleep. Call it 50 minutes of lost sleep. Then there's the half hour of getting to sleep at the start of the night--so we're now up to 10+50+30 minutes of lost sleep. And then there's the 10 minutes for the second wake up. A total of 10+50+30+10=1:40 of lost sleep. So I guess I got about 3 hours of sleep.

Now the weird thing is pre-CPAP I would know when I woke up---even before looking at the clock most of the time. And remember I thought that wake up was really close to my wake up time of 7:30. Well, no, it wasn't. According to Encore, that first wake-up had to happened around 4:30 AM. And there was NO leak and NO apneas. Maybe a REM episode? Certainly the timing is about right?

At any rate, the insomnia data is showing that without Ambien I'm going to bed most nights between 1:30 and 2:00 with only 2 nights of the last 14 or so later than 2:00 AM. Unfortunately I'm also waking up anywhere between 2 and 7 times each night. Waking up as in consciously waking up enough to be aware of it. Who knows how many "spontaneous arousals" I might be having.

The apnea data is GOOD though. AHI's mostly hovering between 0.6 and 1.5. One night it jumped up to 2.4 I think. The RERA index in Encore has been hovering between 0.2 and 0.5. I have noticed that the PR System One is consistently scoring about the same number of apneas as the ResMed S9 was, but the System One consistently picks up a few hypopneas, where I could go days at a time without a hypopnea in sight on the S9. I think it's nothing more than a difference in scoring algorithms.

I'm averaging an Ambien about every third night. I'm very reluctant to take them any more often than that. I tend to feel a bit loopy in the morning, but I do think the sleep is pretty good. But even with Ambien, it takes me 10-15 minutes to fall asleep and I still have 1--2 awakenings that I remember each night. And that first night on Ambien, I had the episode where I must have both taken my mask off in my sleep (without turning the BiPAP off) and then put the mask back on in my sleep. Quite frankly that still creeps me out just a bit.

But is it working?

Well, I am beginning to feel more like my old pre-CPAP self in terms of my mental awareness. That's good. I feel there's a bit of sparkle in the eyes once in a great, great while. That's good. I'm still extremely exhausted. But if you were only getting an average of 4 1/2 to 5 1/2 hours of sleep (on "good" nights) how would you feel? The quality of the exhaustion, however, has changed. And this is significant: I no longer am finding myself with the strange unfamiliar exhaustion that I had during the early days of CPAP. No this exhaustion is a familiar one. And I know how to deal with it.

Most days I have several decided periods where I get a bit yawny, but I'm no longer yawning all day long. I am finding that I get very sleeping on the days following a bad night well before BEDTIME and I struggle between 10:30 an 11:00. But then (unfortunately) the body wakes up about 11:15. And of course that's probably why the PA doesn't really want me simply going to bed early.

The non-ambien nights where I've had only 2 wake ups correspond to nights with severe bedtime-onset insomnia. So I seem to be stuck (at this early stage in a long war) with "bed-time insomnia and few wake ups" or "get to sleep, but have massive numbers of wake ups" I loose as much sleep waking up 6--8 times as I loose simply not going to bed until 2:30 or 3:00 I think.

But over all, I think there is a method behind this madness. And I think eventually my poor body that has been unable to sleep soundly for an entire night for so long---between the apnea and the insomnia---will eventually learn that getting a solid six hours of sleep is better for it than getting 7--9 hours of badly fragmented sleep---which is what I was getting early on during my CPAP adjustment in spite of the good AHI numbers.

And yet, it's going to be a long, slow slog through the spring. And I look at the time and it's well past time for me to shut the laptop and take the Ambien because last night was "a disaster"

[Muse-Inc]

Sounds like real progress! You've sure had a struggle with sleep...nice to see you're reporting improvements!

I find that if I constantly think about how much time I'm actually sleeping, I make actual sleeping more difficult (my clock is now covered at night to block its light as well as prevent me from paying too much attention to time). So now, I just note machine use on my log so I can track trends. Some short sleep nights are very restful while some 8-hr sleep periods are just plain not good nights. On the whole, I am sleeping longer and more restfully...both have been goals for some time. My sleep doc is great fan of sleep consolidation and suggested I pursue it if my frequent wakeups at the time continued. Luckily they are no longer so frequent...I surmise that taking an NSAID when I damaged my shoulder interrupted the cycle.

[Big S]

Thanks for the update, hang in there.

[robysue]

Sounds like real progress! You've sure had a struggle with sleep...nice to see you're reporting improvements!

It sure feels like I've made some baby steps in the right direction.

I find that if I constantly think about how much time I'm actually sleeping, I make actual sleeping more difficult (my clock is now covered at night to block its light as well as prevent me from paying too much attention to time). So now, I just note machine use on my log so I can track trends.

Yep--that's what the sleep log does---as counter intuitive as it sounds, "keeping track" of the number of times I wake up and when I'm going to bed and a quick summary of how I think I slept (each morning) in the DINING ROOM (not the bedroom) means that when I'm having a bad night, I'm not lying there thinking about how much time I've been lying there awake and how much time there is left to morning and how little time there is before I have to get up and ..... All of which feed the insomnia monster.

That sleep log surprisingly frees my mind at night to forget the clock (which, intentionally, I cannot see from my side of the bed) and when I wake up at night I really and truly do NOT have any urge to go find a clock to see what time it is any more. Rather I'm now doing something much more positive: When I wake up at night, most of the time the first thing that's going through my mind is now "what do I need to do to get comfortable again to get back to sleep?" That always involves hitting the ramp (it's only a small reduction in pressure, but just enough to avoid stuffed goose dreams). And then where's the chapstick? (My lips are constantly and severely chapped even though I'm using nasal pillows.) Where are the pillows? And the covers? And most of the time, if there's nothing else (like a headache), I manage to get back to sleep in about 5 or 10 minutes (I guess, since there's no clock anywhere nearby) without any insomnia inducing worries about time. And that is such a positive and refreshing change for the positive.

And the data hound in me can always use those "hit the ramps" in Encore Viewer to see when the wake-ups actually occured if I'm really curious the next morning. Sometimes it's interesting. Sometimes it's not.

Some short sleep nights are very restful while some 8-hr sleep periods are just plain not good nights. On the whole, I am sleeping longer and more restfully...both have been goals for some time. My sleep doc is great fan of sleep consolidation and suggested I pursue it if my frequent wakeups at the time continued.

This is the goal that my PA has talked about. And that's why she picked a six hour sleep period. I was getting plenty of 8-hour sleep periods off and on (though not on a fixed schedule) through the fall, but not consistently. The days after the 8-hour sleep nights were not much better than the days after the 5 hour nights as far as how I felt during the next day ..

And I have noticed that after the best (i.e. the most consolidated) of my nights so far on this crazy sounding schedule, the following day, I have felt better than I've felt in months. Not yet years. And I'm clearly beginning to function in the daytime when I get as much as four or four and a half hours of reasonably consolidated sleep now.

So I do think that if---or rather when I get this insomnia monster beaten---and my sleep properly consoldated, that I will finally start to feel better than I did before starting CPAP. And that will be due to two things: (1) BiPAP to treat the apnea which had been fragmenting the sleep and (2) the work to consolidate the sleep cycles to treat the insomnia which had been fragmenting the sleep.

[Madalot]

Glad to hear you're making some progress. I know it's a hard road for you! Keep up the good work.

[SnoozyQ]

I sympathize with your war. There are nights I just do not sleep, at all. I am almost annoyed to stay in bed, wishing I could get up, but I'm just not going to work at 3 am! I am a chronic clock watcher....I actually got rid of my alarm clock and use my cell phone as an alarm. At least that way, I hope I may not *always* be willing to find and fiddle with the phone to find the time, instead of rolling over to those glaring red alarm clock numbers in my face. My next feat is to move the phone out of arms reach....I'm not there yet.

Last night wasn't great for me either....my hip was driving me insane (I'm convinced RLS has moved from my calf to my hip). I paced the house at 1:30 with one of my dogs. When I went to bed around 10:30, I was soooo sleepy, but the one time I started to drift off, I was soon wide awake. It's like I have bed/sleep aversion.I dread bedtime. I feel like a cranky baby that automatically fights sleep, despite wanting to sleep.

I'm glad you are having some progress...big, small or in between, progress is progress and that's a GOOD thing!

[SleepingUgly]

Wow, you're an inspiration. I don't think I could get myself to do the sleep restriction therapy.

[carbonman]

robysue, it appears to me that you are an engineer.
Your brain is running on nitro.
You have graphs and charts and logs,
keeping track of every minute.
All these things give you the impression that you are
in control. Your TFI process is wildly out of control.
Your thoughts and calculations control you.

I would suggest that you take a very close look at
Dr. Krakow's puzzle therapy to slow your thoughts and
begin to let your feelings and especailly your image
processing take over. Even down to the point of
simply taking one puzzle piece and burning it into your
image process. All those things you do when you
wake at night are fueling your thought process.

Try this....throughout your day, MAKE yourself aware of
pleasurable encounters, see a beautiful sunrise or
what you saw on a walk in the park....whatever.
Force those feeling and images into your brain for
recall that night. Take pictures and look at them when you
are about to go to bed so the images will be fresh in your mind.
Then, instead of consentrating on pillows or chapstick or
covers.....let those images and feelings invade the calculations.

Let go.

[jazzer4]

Great advise Carbonman.
I use this everyday. Infact I always have a puzzle going.
I do a bit or at least look at it right before bed.
Then while going to sleep I picture the puzzle and certine pieces.
I try to bring those images to the top front of my head. sort of like looking up in my head, and place the image there.
I have noticed I don't "fall asleep", I "drift off to sleep". Looking at those images.

Robysue I hope you get it figured out. It's great your trying everything to make it work.
What your doing isn't easy. Everyone just wants to lay down and go to sleep. I sure do.
And, I think it's worse because we have all this stuff attached and going on around us.
Once your nose itches, then your leg, then the mask hurts on one side then...........
In our position it's best to fall or drift quickly to sleep. It sounds like your working to get there.
I'll keep reading your updates. Many good ideas in them.
Good luck girl.

[robysue]

IThere are nights I just do not sleep, at all. I am almost annoyed to stay in bed, wishing I could get up, but I'm just not going to work at 3 am!

One of the rules (which I'd already mostly internalized before this particular insomnia monster showed up): Don't stay in bed if you're annoyed to be there. I had to have this one reinforced, though, since getting mad at my CPAP equipment was a bedtime-onset insomnia trigger in the early days of the fall. Since declaring war on the insomnia, hubby has been really good at being my enforcer on this one. He gives me one warning to settle down if I start to get angry and then calmly tells me: "Keryn (the PA) says you have to leave the bed if you want to be mad. It's your choice." Most of the time I can settle down; sometimes I just get up and leave the bed for a few minutes.

Another rule (which I'd already mostly internalized before this particular insomnia monster showed up): Don't do work related stuff when you get up out of bed because you can't sleep---particularly at 3:00. Just gets you MORE agitated.

I am a chronic clock watcher....I actually got rid of my alarm clock and use my cell phone as an alarm. At least that way, I hope I may not *always* be willing to find and fiddle with the phone to find the time, instead of rolling over to those glaring red alarm clock numbers in my face. My next feat is to move the phone out of arms reach....I'm not there yet.

According to Sound Sleep, Sound MInd, most insomniacs have a really tough time letting go of the clock.

Surprisingly for me giving up the clock has NOT been as hard as I though it would be. Of course I am severly nearsighted. And for years I and my husband would regularly swap sides of the bed whenever I got tired of "my side" with the cock on it because I was tired of having to turn the alarm off every morning. So when I had to move furniture around anyway to make room for a small table (from when our kids were little) to go on my side for the CPAP, I banished the clock to his side of the bed once and for all so that HE could turn the alarm off ... And I've been peacefully ignoring the clock ever since even as the insomnia monster moved into the bedroom. And the sleep log had made it even easier to ignore the clock when I do wake up---even when I get out of bed now.

Between the two of us we have one tracfone --- that usually lives in my husband's van --- turned off. We don't even know its number.

Last night wasn't great for me either....my hip was driving me insane (I'm convinced RLS has moved from my calf to my hip). I paced the house at 1:30 with one of my dogs. When I went to bed around 10:30, I was soooo sleepy, but the one time I started to drift off, I was soon wide awake.

You have my sympathy. I was so relieved when the sleep study did NOT find RLS in my case. And a bit surprised since I tear up covers pretty good. But that maybe that I tear them up when I'm making my robin-nest and once it's made I settle down.

It's like I have bed/sleep aversion.I dread bedtime.

That was me from the end of September through the end of December. The funny thing about being told that I can't go to bed until it's 1:30 AM is that I now actually look FORWARD to going to bed again BiPAP and all. That's also progress.

I feel like a cranky baby that automatically fights sleep, despite wanting to sleep.

Been there, done that. More accurately: Been doing that for off and on for about 52 years now. At least the family stories of my babyhood and childhood have me as the one who was difficult to put down for a nap ...

[robysue]

Wow, you're an inspiration. I don't think I could get myself to do the sleep restriction therapy.

It's hard, but it's not (yet) as hard as I thought it would be. And writing about it helps me cope.

But let's see if I'm still saying that in another month ...

[Muse-Inc]

Oh, 2 other suggestions from my sleep doc:

when you wake up, count your breaths from 1 to 20, then repeat as often as needed; he uses this technique. Being very visual, as I count I picture the numbers form and fade...just enough to distract me from whatever else I might focus on. Works pretty well.

Get out to bed and go do something fairly boring for awhile if you don't fall back to sleep pretty soon.

RobySue, I use Badger lip balm (coffee or orange flavor), generous application...it lasts me thru the entire night, most of the others don't. Maybe you'll have the same good results. I get it at Whole Markets tho some health food stores carry 'em.

[robysue]

robysue, it appears to me that you are an engineer.
Your brain is running on nitro.
You have graphs and charts and logs,
keeping track of every minute.
All these things give you the impression that you are
in control. Your TFI process is wildly out of control.
Your thoughts and calculations control you.

I would suggest that you take a very close look at
Dr. Krakow's puzzle therapy to slow your thoughts and
begin to let your feelings and especailly your image
processing take over. Even down to the point of
simply taking one puzzle piece and burning it into your
image process. All those things you do when you
wake at night are fueling your thought process.

Try this....throughout your day, MAKE yourself aware of
pleasurable encounters, see a beautiful sunrise or
what you saw on a walk in the park....whatever.
Force those feeling and images into your brain for
recall that night. Take pictures and look at them when you
are about to go to bed so the images will be fresh in your mind.
Then, instead of consentrating on pillows or chapstick or
covers.....let those images and feelings invade the calculations.

Let go.

In some sense this is too true. But I'm not there yet. This is future work. And I must concentrate on first things first.

And one of the first things is dealing with my highly sensitive body and its chronic over stimulation from the CPAP every single night. And that over stimulation's contribution to the insomnia monster.

Many of the things that you think are evidence of my wanting to keep everything under control are, in reality, part of my current efforts to live more comfortably in my highly sensitive body, which is physically overwhelmed by what I have been going through this fall and at this point vastly over stimulated physically by the CPAP therapy every single night. My physical body is in need of physical soothing so that it can settle down enough to allow my mind to relax. Think of an overwound watch spring that has a chance to slightly unwind every day, but is then once again wound too tightly day after day. That's how my body physically feels right now. And crazy as it may sound, but until my highly sensitive body is physically more soothed into a less stimulated state, my mind will not be able to make it relax by imaging techniques and more focused mindfulness type approach like you are suggesting ("Try this....throughout your day, MAKE yourself aware of pleasurable encounters, see a beautiful sunrise or what you saw on a walk in the park....whatever.")

And so the reason that I'm focusing on low level comfort things (Where's the chapstick?) right now when I wake up at night is this: My mind needs to learn how to automatically help my highly sensitive body deal the physical stimuli that occur at night that tend to overstimulate it since those physical sensations are still part of what's waking me up. So something like Where's the chapstick? is important because finding it and applying it both soothes the unpleasant physical stimulus coming from my badly chapped lips and prevents it from getting worse. Likewise the focus on the pillows and blankets is really more about a focus on comforting my overstimulated physical body and soothing it back to state of being physically relaxed enough for sleep to come before my mind becomes anxious. So its a matter of training my mind to more or less automatically take care of my body's needs without becoming overly anxious or overly alert.

Continuing with the chapstick theme. The idea is to replace what USED TO HAPPEN when I woke up with chapped lips a mere three weeks ago:

• I wake up and become aware the lips HURT because the chapping is worse.
  
  Brain says to itself (because my brain ALWAYS talks to itself when it is conscious):Where's the chapstick? I have to fumble around because I can't find it. Turn on the light. Ok. Now there it is. Ok. The lips are better. Turn the light off. NOW what's wrong? OH NO. That g*d* tickle in the back of my throat is back. And I have to cough. Sit up, turn the machine off. Take the mask off. (So I don't get air in my tummy) COUGH COUGH COUGH. Am I done? Let's put the mask back on. Ok start the machine back on. Now the nose itches. Another COUGH COUGH COUGH. Now there's air in my stomach. .... and the tickle is back with every breath. Yeah, the machine is trying to stuff air down my throat again ..... GOD I HATE THIS MACHINE WHY DO I HAVE TO HAVE APNEA?
  
  And at this point both my body and by mind are way to alert and upset to get back to sleep in a timely fashion.

Working with and to accommodate the physical needs of my highly sensitive body, now, it looks more like this:

• I wake up and become aware the lips HURT because the chapping is worse.
  
  Brain says to itself: Where's the chapstick? --- Oh yes I remember, it's in my hand, so I can just put it on, the lips will feel better, and go back to sleep

In an ideal world, my brain should be able to take care of my body without needing to think about its most basic need to be soothed at night. But I'm not there yet.

[jazzer4]

Chapped lips therapy that works for me....

Wet lips then seal in moisture with Vaseline. No rebound. Works overnight.
I do this as a preventative too.

Like any other moisturizer first you need the moisture then the sealer.

All you stated make so much sence to me as I have been (am) there too.
Practice, practice, practice as you know. Soothing the body is necessary when your in the state your in, I understand as I did (do) that also.
With practice maybe you'll be able to get past that and onto the next step. I'm a bit ahead of you in the process, but it's working for me.
I admire your tenacity.

[robysue]

Chapped lips therapy that works for me....

Wet lips then seal in moisture with Vaseline. No rebound. Works overnight.
I do this as a preventative too.

That's the foundation. Been doing this for years even in the summer time. But the CPAP/Swift FX exhaust flow bouncing off everything and onto my lips broke through this daily regime that I've been doing for years, and I wound up with the worst case of chapped lips that I"ve had since I was a kid in the Upper Midwest. Seriously: The nasty red kind that goes all the way up to your nose and almost all the way down to your chin.

The lips are almost, but not quite healed. (Hence the need to literally sleep with the chapstick in my right hand so that I can reapply it every time I wake up in addition to doing the standard wet them and seal with vaeline several times a day routine.) The chapping is now largely confined to the lips themselves and I no longer look diseased, thank goodness. But it doesn't help that hubby confessed that the humidifier on our forced air heater is NOT working this winter due to a corroded water tube. And that it won't be fixed until next summer when he has the chance to replace it. *bleh* He's not the one with dry skin ...

Soothing the body is necessary when your in the state your in, I understand as I did (do) that also.
With practice maybe you'll be able to get past that and onto the next step. I'm a bit ahead of you in the process, but it's working for me.
I admire your tenacity.

Thanks! It's nice to know someone else has been through this kind of constant physical overstimulation and that I'm not alone in that regard. I know that I will get through it --- somehow, somewhen --- it's just the doing it that's got to be done, and that's the frustrating part. One step at a time ....