robysue's summary graphs with UPDATE page 3

[NotMuffy]

To be frank, I'm somewhat perplexed by the low number of stage changes, particularly within first sleep cycles. I find it extraordinarily odd that someone with this horrible sleep architecture can, once the switch to sleep is flipped, have better sleep continuity than "normal" people (basically having only "lab effect").

You've lost me here. I understand what you mean by "horrible sleep architecture" on my diagnostic test.

Although "horrible" really doesn't describe a great deal of detail. Specifically, there may be several qualities that could qualify a sleep architecture as "horrible":

• Abnormal sleep stage percentages, particularly large quantities of wake and/or NREM1; and/or
• Frequent stage changes, resulting in sleep fragmentation, particularly involving Wake/NREM1 or NREM!/NREM2 transitions.

Further, while insomnia may not have a consistent sleep architectural "fingerprint", it quite frequently has a great deal of NREM1 and sleep fragmentation-- which, oddly, you don't exhibit..

In this brief discussion of sleep architecture:

The Good Ol' Days

An example of sleep fragmentation in the first half of the night is shown:



You can see the bouncing back and forth between Stage 1 and Stage 2 (this is a pre-AASM 2008 scored record).

So anyway, perhaps a further analysis of the raw data of the diagnostic study may be fruitful. Specifically, if that typical sleep fragmentation were present (but the record was "soft-scored'), then respiratory events may have been misinterpreted (or overscored) that were simply disrupted breathing, or post-arousal central activity, during sleep fragmentation.

[robysue]

The one easy question first:

RS: have you, or SU, tried simethicone for relief from aerophagia?

http://en.wikipedia.org/wiki/Simethicone

Tried simethicone many, many years ago during my first pregnancy: Daughter nestled up against my stomach and kicked whenever I ate. That stirred up everything and triggered severe gas problems. OB suggeseted simethicone. Didn't seem to do a dang thing for me most of the time. Most certainly didn't alleviate pain in the middle of the night if I took it before bed. And didn't act fast enough to make it worth getting out of bed worth it when I was 7+ months pregnant when the pain woke me up at night. And occasionally it seemed to make the gas pain worse: One big bubble proved no easier for me to burp than lots and lots of little bubbles. And seemed to hurt more.

[NotMuffy]

So "IMHO" if you've gone from relatively "good" sleep before treatment to "poor" sleep with treatment, now you have added "potential adverse health repercussions".

Mortality is a broad outcome measure, embracing death from all causes, and it's easy to think of conditions that might cause both increased mortality and shorter or longer sleep, without sleep duration itself contributing any causality at all. For example the short sleepers probably include alcoholics and depressed people who have higher suicide risks, plus people with chronic pain, metastatic cancer, and so on. The long sleeper groups, too, might include the chronically ill, and those with side-effects of treatment for disease. If you replace "potential" with "putative" it wouldn't strike me as stretching the data so much, but still, it doesn't seem to me that the gross correlation (i.e., Kripke) is a sound basis for RS to decide whether to persist, as your statement may imply.

Well, I think Kripke took a lot of that stuff into account:

With 1.1 million participants, this was the first large-scale population study of sleep to also take into consideration variables such as age, diet, exercise, previous health problems, and risk factors such as smoking, in comparing longevity among the participants. In other words, individuals with specific characteristics were compared with individuals of a similar age, health background, etc.

http://www.byz.org/~david/neuro/kripke.pdf

However, overall I think this discussion still has a ways to go.

[SleepingUgly]

I'm trying simethicone prophylactically for the team tonight! Course I have no idea what to set the CPAP on, and I'm sure that will account for more variance in my aerophagia than the the simethicone will.

Muffy, I think I'll come to your sleep lab and have you titrate me. What do you say?

[robysue]

Although "horrible" really doesn't describe a great deal of detail. Specifically, there may be several qualities that could qualify a sleep architecture as "horrible":

• Abnormal sleep stage percentages, particularly large quantities of wake and/or NREM1; and/or
• Frequent stage changes, resulting in sleep fragmentation, particularly involving Wake/NREM1 or NREM!/NREM2 transitions.

Further, while insomnia may not have a consistent sleep architectural "fingerprint", it quite frequently has a great deal of NREM1 and sleep fragmentation-- which, oddly, you don't exhibit..

Ok, now I'm really confused: You say that I don't have "horrible" sleep architecture since I'm not bouncing back and forth between NREM1 and NREM2? Or is it that in spite of that piece of good news, that my overall sleep architecture is "horrible" (on the diagnostic NPSG only? or all of them?) because of too much WAKE?

And any chance my improvement in the all important how do you feel? question made between the first and second bi-level studies might have something to do with my body finally figuring out how to get some NREM3 with the mask on my face?

As for the issue of insomnia: At the time of the diagnostic study, I my on-again/off-again insomnia was definitely "off-again". For me, I'd been sleeping decently enough during summer 2010: I was typically going to bed between 11:30 and 12:30 and getting up during week around 7:00 or 7:30, having not been able to force myself out of bed at 6:30 like I would have liked to. (More on this later.) Most nights it would take me anywhere from 30 minutes to about an hour to fall asleep. So sleep onset latency in the diagnostic test was very typical of my nightly sleep at the time. Once asleep, I would remember no awakenings at all on many nights. On nights where I did consciously wake up after falling asleep, I would frequently attribute the wake up to a physical disturbance of some sort: The neighbor's very loud A/C unit sits right outside our window (the houses are about 15 feet apart) and when it would cycle on, I would sometimes wake up. Hubby getting up to pee would sometimes wake me up. We sleep with our windows open, so thunderstorms and rain would wake me up (want to keep those awakenings for obvious reasons). And hot humid weather would trigger a great deal of restlessness. But overall if I'd been asked "Is Insomnia a problem?" last summer, I would have said, "No, as long as I pay attention to my sleep hygiene."

I started CPAP on September 23. I definitely felt like I was beginning to suffer my insomnia symptoms by the beginning of October because I'd begun to dread bedtime and I'd lie in bed fighting for sleep for an hour or more at a time. And that pattern felt just like many of my previous bouts of insomnia.

So let me describe my old familiar insomnia pattern: First, my previous bouts of insomnia have always responded to me just paying a bit more attention to my sleep hygiene. I've never asked for and never received a formal prescription for a sleeping pill like Ambien, Lunesta, Sonata, etc. Second, my previous bouts of insomnia have been largely bedtime onset insomnia: Lying in bed and not being able to go to sleep for more than an hour or hour and a half for weeks or months at a time when going to bed at my already semi-late bedtime. And in the past I've been able to deal with my bedtime onset insomnia by simply waiting until I got really sleepy to go to bed. [And not reading in bed and not watching tv in bed.] And I was till get up at the same time during the work week, but would usually sleep as late as I wanted on the weekends. Even in my worst bouts of bedtime onset insomnia, I'd usually only consciously wake up between 0 and 2 times a night. Sometimes once I was awake, I'd have real trouble getting back to sleep.

But unless the barometric pressure was rapidly changing or the heat and humidity was oppressive, I usually didn't have long periods of restlessness in the middle of the night during these previous bouts of insomnia. And likewise, last summer I don't remember being overly restless during the night except on hot, humid nights where the neighbor's A/C was really disturbing to me.

By sometime in November 2010, the CPAP-induced insomnia was not only including a bedtime onset component but also a pretty significant number of sometimes lengthy awakenings where as near as I could tell, what was waking me up was stress or discomfort or other sensory stimuli from the CPAP itself. And it would sometimes take a long time to get back to sleep from these awakings. The extended three hour wake after sleep onset period in the first bi-level titration study is an extreme example of what was going on. And understand: I really *thought* I was drifting between wake and NREM1 during that three hour period and wrote as much on the "morning after" report for that night. And this kind of being awake for hours AFTER I had gotten to sleep definitely felt different than my previous bouts with insomnia. Maybe that's why I crashed and burned so hard? I don't know.

So "IMHO" if you've gone from relatively "good" sleep before treatment to "poor" sleep with treatment, now you have added "potential adverse health repercussions".

This statement has to be examined by me a bit more carefully too.

Last summer I undoubtably described my sleep to my PCP as "decent" except that hubby says I snore and sometimes stop breathing. And "decent" in the sense of "no insomnia as defined by me" and "decent" in the sense of waking up feeling somewhat more rested than when I went to sleep, but not ready to face the day rested. I was waking up with pain in my hands and feet every morning. The pain would slowly get better (not worse) during the day unless I was on my feet too long or typed too long. But it was there every morning and it was a factor in my feeling "somewhat more rested" on waking rather than "definitely more rested" or "much more rested" or simply "rested" upon waking up. I would have the occasional day a couple of times a month where I'd actually wake up feeling rested and refreshed in the classic sense of those words. But not very often---and I could easily go a couple of weeks between those really good days. Even on the best days, there was a morning headache. Most of the time the headache stuck around for the whole day too.

From September 23, 2010 until sometime in January 2011, the quality of my sleep with xPAP was substantially and undeniably worse than what I've described above. Why? I'm not at all sure---in spite of all I've written here.

But from the middle of January to the middle of March (before the maples started to bloom), the quality of my sleep had definitely begun to change even as the quantity of my sleep remained severely limited. Phrases like "woke up feeling almost refreshed" and "body definitely rested, mind somewhat relaxed" started to appear in the sleep journal. And on about half the mornings I was not needing to be dragged out of bed by hubby: I was actually ready to get out of bed when the alarm went off at 7:30. And by the middle of March, my self reported sleep efficiency had gotten to where it was running above 90% pretty consistently. And I'd begun to notice that my answer to how do I feel? had as strong of a correlation to the sleep efficiency number as the AHI. If both were decent to good, I felt better than I'd felt in a long time. If one was decent to good and the other wasn't too bad, I felt ok---and about as good as I felt last summer. But if both were less than decent, I usually felt pretty bad.

So at this point (six and a half months into using xPAP, I can't unequivocately say that "I sleep worse with xPAP than I did without it." I can say, "I used to sleep worse with xPAP than I did without it; now I *sometimes* sleep better with Bi-PAP than I was sleeping last summer and I often sleep no worse (subjectively) than I did last summer." Moreover, when I'm not wallowing in self-pity because of a bad night on both the insomnia and apnea ends and have a migraine to boo, I hope that I will one day have the high quality sleep that I sometimes get on a more or less constant basis.

So anyway, perhaps a further analysis of the raw data of the diagnostic study may be fruitful. Specifically, if that typical sleep fragmentation were present (but the record was "soft-scored'), then respiratory events may have been misinterpreted (or overscored) that were simply disrupted breathing, or post-arousal central activity, during sleep fragmentation.

Any tips on how to get the raw data from the doctor's office? Write a letter? I don't think a phone call will work---it took effort to get those first two studies's summaries from the secretarial staff that answer the phones. The PA gave me the other two when I met with her face to face.

[NotMuffy]

Ok, now I'm really confused:

Not wishing to be Contrary (J/K! Of course I do! Contrariness is one of Muffy's 5 Unavoidable Faults!), you're just saying that. I think you're one of the 3 smartest guys (and/or guyettes) here and have great insight and understanding about everything.

While a great deal of information has been presented thus far, we must keep in mind the words of the great Donald Rumsfeld, who said (paraphrasing)(severely):

TFIIK.

And any chance my improvement in the all important how do you feel? question made between the first and second bi-level studies might have something to do with my body finally figuring out how to get some NREM3 with the mask on my face?

Y'know, I looked at that (which would most certainly qualify as a terrific Rebound Phenomenon) and asked myself

Rebound from what?

While the first option would be "it's really drug-induced sleep", another possibility (even before

I definitely felt like I was beginning to suffer my insomnia symptoms by the beginning of October because I'd begun to dread bedtime and I'd lie in bed fighting for sleep for an hour or more at a time.

I would have said Reverse Lab Effect.

Last summer I undoubtably described my sleep to my PCP as "decent" except that hubby says I snore and sometimes stop breathing.

Post-arousal centrals (a normal phenomenon) do that too.

I was waking up with pain in my hands and feet every morning. The pain would slowly get better (not worse) during the day unless I was on my feet too long or typed too long. But it was there every morning and it was a factor in my feeling "somewhat more rested" on waking rather than "definitely more rested" or "much more rested" or simply "rested" upon waking up. I would have the occasional day a couple of times a month where I'd actually wake up feeling rested and refreshed in the classic sense of those words. But not very often---and I could easily go a couple of weeks between those really good days. Even on the best days, there was a morning headache. Most of the time the headache stuck around for the whole day too.

Since we have already decided that your sleep physician is a LSOS, it may be reasonable to assume that everything he is associated with could be similarly contaminated. If so, then an alternative explanation is needed to explain that symptomology, and "smoldering viral syndrome' (something like CFS) would fit the bill a heckuva lot better than insomnia and/or xPAP intolerance.

Any tips on how to get the raw data from the doctor's office? Write a letter? I don't think a phone call will work---it took effort to get those first two studies's summaries from the secretarial staff that answer the phones. The PA gave me the other two when I met with her face to face.

Then have the PA do it.

Keeping in mind that Muffy is Cynical (Fault #2) and Reads Too Much Into Everything (Fault #4) I predict the doctor's office is going to go ballistic when you ask for it.

[secret agent girl]

Hmm, this is kinda like deja vu.

All over again.

For the severalth iteration, if my PM's can be believed.

This round, I'm making popcorn and margaritas. Except I'm not having the popcorn--it would mess up my low-carb eating plan.

[robysue]

Welcome back secrete agent girl!

And pass me that popcorn you're not eating.

[NotMuffy]

In re: the comment noted on the BiPAP1 titration, noting the apnea count may be incorrect:



that parameter concerns arousals-- therefore, those apneas did not have associated arousals.

Which certainly seems quite odd, unless the apneas were post-arousal.

Or, given their position, sleep-onset centrals:

[robysue]

NotMuffy,

That note was written by me about a question I had when looking at the study. Thanks for giving some insight into why those numbers may well be correct in spite of the data on the next page.

I really appreciate the time you've taken looking at my data and explaining what you think is going on. I haven't written a long response because I'm still digesting what you've said. But there are follow up questions forming in my mind and when I get them better articulated to myself, I'll be sure to ask them. But I did want you to know that I am grateful for your insight.

robysue

[robysue]

TS=That said

I think you've nailed one of my on-going issues with xPAP in general. I don't yet have a clear outcome variable---not in the sense of something that's measurable. At this point, however, I want the EDS (which *started* with the beginning of xPAP) to go away. I want the joint pain to stay away now that it is gone: It's a truly weird outcome expectation for xPAP---but there it is: That's the one thing that I know for sure that xPAP has done for me and I want that to continue. So perhaps the better way of putting an (unmeasurable) outcome variable: Since xPAP seems to reduce the overall low-grade inflammation in body, I'd like it to continue reducing/eliminating the constant low-grade inflammation in my body. And thus at least partially address a number of inflammation-related issues beyond joint pain. How I measure this (beyond joint pain) is beyond me.

In terms of AHI, I seem to feel better when the AHI is below 2.5 and worse when it's above 3.0. More subtly, though, I feel worse when I have a cluster or two of events containing 6 or more events in a short (30 to 40 minute) period of time.

And the immediate short term goal is to find a pressure setting that is low enough for the stomach to tolerate and high enough to minimize the tendency to have clusters of events. I doubt I'll ever get down to no clusters every single night. But if I can get to a point where I have clusters on only one or two nights a week (instead of three or four) and not have two nights of clusters in a row, I'd be quite happy on the AHI end of things.

So possible outcome variables are:

• body pain (0-10) -- not sure what you mean by other inflammation-related issues beyond joint pain, so not sure if that can be subsumed here or needs its own category
• the feeling you get when you have clusters of events--whatever that is, I'm not sure (I don't think the outcome variable should be the # of clusters of events, as that is likely to become a self-fulfilling prophecy)
• # of headaches and possibly severity of them

Side effects:
[*]stomach/aerophagia

If the "feeling" above associated with clusters of events is actually EDS, I wonder if it's not the cluster of events that is causing it, but the INTERACTION between the cluster of events and sleep deprivation ala sleep restriction. I understand the need for sleep restriction, but you're basically sleep deprived, so anything that disrupts your sleep a bit can potentially cause more symptoms than if you had more sleep (or so goes my theory that sleep quantity can partially, but not completely, compensate for sleep quality).

SU, I've been giving this post a whole lot of thought ever since you first posted it. I think you are onto something here. But I think I also have to find a way of figuring the insomnia variables (mainly sleep efficiency and total time in bed or total sleep time) into the mix

You are definitely correct that # of clusters and # of events in clusters[/b] should not be an outcome variable. The point is not to artificially lower my numbers down without seeing any benefit in how I'm feeling. The point is to find a decent balancing place: Pressure high enough where the events are controlled to the point where my outcome variables (in terms of waking up feeling refreshed, body/joint pain, and daytime headaches) are acceptably "better than" pre-CPAP; and that my daytime functioning is "better than or equal to" my pre-CPAP functioning; and low enought to keep the negative side effects (mainly aerophagia and cpap-related disturbances to sleep, but also some of the anger/angst) are kept at a level I can tolerate. Classic variation on the max/min problem by the way.

I am also battling aerophagia now.

Best of luck from my stomach to yours

[robysue]

The same basic question has been asked (in different forms) by both NotMuffy and SleepingUgly: What is it you want to get out of BiPAP? This question has prompted some serious thinking on my part. And one of SU's responses suggested taking a good hard look at "Output variables" rather than "Input variables." (I love it when folks talk to me in math-geek language!) And thinking about whether I have indeed been confusing the two and worrying too much about "input variables" that I in some sense cannot completely control.

And I've read and re-read my own responses to the question What is it you want to get out of BiPAP? pretty critically the past several days. Thinking's a useful thing to do---and sometimes it comes up with an idea or two that may be useful.

So---in all this thinking and writing, I've realized that there are a few things (number of headaches, severity of joint pain, and less restlessness at night in the sense of tearing the covers apart and keeping my husband awake) that have definitely IMPROVED since starting xPAP. There is one more thing---feeling genuinely rested and refreshed upon waking---that is slowly beginning to occur more frequently than it did pre-CPAP: Pre-CPAP I'd wake up feeling refreshed maybe two or three times a month. In good weeks now, I'm waking up close to feeling refreshed several times a week and I'm waking up genuinely refreshed at least once a week. So there's good reason to believe that this is something that BiPAP just might be responsible for. And I want to make sure the insomnia monster does NOT interfere with the CPAP's work on these "outcome" variables. Although, to be fair, waking up refreshed on most mornings requires both the CPAP to be effective (enough) and the insomnia to be effectively tamed.

But waking up refreshed is only part of the story: My daytime functioning took a real hit last fall, as did my energy levels. Now some of the "blame" for this undoubtably lies with the serious insonmnia I develolped during the fall. But learning to sleep with the CPAP seems to be what triggered the insomnia and CPAP issues still sometimes wake me up. So there are some "negative" effects of the combination of xPAP and insomnia that I've been living with aerophagia, daytime sleepiness, brain fog and reduced engery levels that I need to get under control in the sense of being reduced to levels I can tolerate on a daily basis.

And so I've decided to try (for at least a week) to track these "outcome" variables in a spreadsheet chart that I'll fill in at night reflecting on the day as whole. The chart is intentionally designed to force me to be brief instead of ruminate: Rate on a 0 to 5 scale how much of an issue each thing was during the day for me. Won't worry at all about adding in the AHI or insomnia data until after a week has gone by since i'm already tracking that data in the morning and then more-or-less trying to forget it after breakfast.

Perhaps with a bit of time I'll be able to sort out just where the balance point between enough pressure to manage the apnea and not to much to trigger the aerophagia.

There's more I want to write in response to some of NotMuffy's comments, but this is enough for tonight since it's just about an hour to bedtime and I really ought to get off the computer.

[rested gal]

Hmm, this is kinda like deja vu.

All over again.

For the severalth iteration, if my PM's can be believed.

This round, I'm making popcorn and margaritas. Except I'm not having the popcorn--it would mess up my low-carb eating plan.

Well, well

How interesting to see you here actually typing again, secret agent girl
And how interesting to see what you chose to type into this thread

570 posts (at the time of this writing)
568 of them (at the time of this writing) consisting of dots

I'm not going to use dots in my post
Gonna keep them out of reach

[SleepingUgly]

Robysue, is it possible to not even look at the AHI and events on a daily basis and perhaps just download the data weekly? That way you will be "blind" to that aspect and only be ratings things based on how you feel and not the number of clusters you see in the data. After a week you can go back and see if they correlate.

[robysue]

Robysue, is it possible to not even look at the AHI and events on a daily basis and perhaps just download the data weekly? That way you will be "blind" to that aspect and only be ratings things based on how you feel and not the number of clusters you see in the data. After a week you can go back and see if they correlate.

This is a head/heart thing SleepingUgly: Intellectually I know I ought to do the download weekly. And eventually I think I will be able to download data less frequently. But not just yet.

At this point, those AHI and leak numbers (mostly positive most of the time) are still emotionally important to me in the morning to keep on plugging on. And at this point, I'm not too worried about my emotional/intellectual reaction to the AHI numbers skewing things too much if the AHI is less than 2.5. The days with AHI > 3 do start my day off badly, I have to admit. But (and it's an important but) if the insomnia inputs are decent on a "bad AHI" day, writing the insomnia log tends to get me back in a good mood. And vice versa: When the insomnia log is full of bad news---lots of restlessness, late to bed, long latency to sleep, aerophagia-triggered wakes, etc., decent apnea input variables help get me back into a good mood. If both sets of input data are bad (which is NOT common AND seems to be getting rarer), I've usually got a migraine/sinus/tension headache that's more painful than my daily headache anyway and NOTHING except time is likely to lighten my mood since I'm in pain. And unless the migraine is a killer of a headache, I have to be very careful of taking pain medication because rebound headaches.

And at this point, I still have to track the insomnia input variables (time into bed, time to sleep, # of wakes, total estimated sleep time, sleep efficiency) every day in the insomnia log in order to determine when I can attempt to move bedtime back by another 15 minutes. Currently bedtime is officially 1:15, but I'm still consolidating it---most nights I'm in bed between 1:15 and 1:25 and there's been a slight uptick in latency to sleep, but a more disturbing uptick in time asleep lost to restlessness in the middle of the night has occurred this week. I'm hoping it's only a cold coming on. But it's clearly enough to prevent me from trying to move the bedtime back to 1:00 am yet.

So I don't want knowing substantially more about the insomnia input variables to be influencing things more than the my lack of knowledge of the apnea input variables. And by 1:00AM when I'm filling in the daily "I did I feel" numbers, I can pretty much tell you that whatever I did/read/wrote between 7:30 and 8:30 in the morning is pretty much forgotten: I'm one of those people who "journals" to consciously let go of things rather than remember them: That's actually why my notes in the insomnia log are longer than my PA wants them to be---if I write down every thing I remember about everything that bugged me during the night, then my mind can and will let go of the details and forget about the stuff I wrote and get on with the day.