AHI defined differently on sleep study and on EncorePro2?

[napstress]

I had an appointment with my sleep dr this week. I've been on CPAP therapy for seven months. She says that CPAP therapy is working for me, basing her opinion on the AHI numbers from EncorePro2. I'm wondering why she would base her opinion on my AHI. On the sleep study she wrote, "The overall AHI was 0.2 events/hour and the overall RDI was 45.4 events/hour (....) The lowest fall in oxygen saturation was 95%." She wrote that I have mild-moderate OSAH, but told me I have UARS, not apnea (so insurance would cover CPAP therapy).

I asked her why she would look at the AHI numbers to assess whether therapy is working for me or not, given that I do not have apnea. It seems to me that EncorePro2 calculates the AHI = OA + H + CA, and those numbers have been low for me since the get-go. She tried to explain to me that the AHI on the sleep study is different from the one on EncorePro2, because EncorePro2 does not measure oxygen desats. But it seems to me that the oxygen desat number is neither here nor there, since it didn't drop very much on the night of my sleep study and is likely not an issue for me.

I could have sworn that a few months ago she said with UARS it's better to focus on the RERAs than AHI. But at this past appointment, when I mentioned Park quoting Krakow as having "a zero-tolerance for Flow Limitations," she said that she does not believe the FL data is accurate on EncorePro2. But Dr Park has said that RE = FL = UARS.

Can anyone help clarify her explanation or what my doctor might be thinking? Is it true that the sleep study and EncorePro2 calculate the AHI using different factors—and these factors are relevant in my case?

As far as "CPAP therapy is working for me,"I couldn't disagree more. I feel more tired than before starting CPAP therapy; I even look older and more exhausted. She puzzled aloud about why I am still tired. I told her flatly that it's because I have @#$%^&*-ing insomnia! (minus the symbols). She said she has no solutions for that. I'm feeling pretty frustrated and despairing. I have very sincerely been using the machine, educating myself about SDB, and have troubleshot everything I can think of.

Any insight into any of this would be greatly appreciated. I'm pretty down.

[HoseCrusher]

I believe that heart rate, brain activity, respiratory effort, oxygen levels, pulse rate, and flow are needed to accurately score AHI. The xPAP machines monitor only flow.

They try to do a good job, but they have limited data to go from.

[moresleep]

I believe that heart rate, brain activity, respiratory effort, oxygen levels, pulse rate, and flow are needed to accurately score AHI. The xPAP machines monitor only flow.

They try to do a good job, but they have limited data to go from.

The polysomnographic sleep study records all those things and more; but, the AHI, whether derived from the sleep study or your xPAP machine, considers only apneas and hypopneas--AHI=Apnea-Hypopnea Index, calculated simply as the total number of events divided by the hours of sleep. That's one of the AHI's limitations. It also gives the same weight to, say, a 15-second apnea that it does to a 60-second apnea, which is a rather serious flaw when it comes to using the AHI as a measure of severity. But, it's better than nothing...

How many hours are you sleeping per night? Even effective Cpap therapy cannot make up for lack of sleep, of course.

What machine do you have, and what does Encore Pro say about the state of your sleep?

[robysue]

As far as "CPAP therapy is working for me,"I couldn't disagree more. I feel more tired than before starting CPAP therapy; I even look older and more exhausted. She puzzled aloud about why I am still tired. I told her flatly that it's because I have @#$%^&*-ing insomnia! (minus the symbols). She said she has no solutions for that. I'm feeling pretty frustrated and despairing. I have very sincerely been using the machine, educating myself about SDB, and have troubleshot everything I can think of.

I could easily have written this a number of times during the last year. Heck, I have written words to this affect more times than I can count in the last year. And I've gone through the same frustration and despair while stubbornly making myself put the mask on every single night. Finally by month 10 I was starting to feel as good as I had pre-CPAP on most days and better than I had pre-CPAP on some day. Since so much of your history with the insomnia has reminded me of my own battles, hopefully you'll follow in my footsteps and start to feel better in another couple of months.

I've been seriously irked at how both my sleep docs and their PAs seem so puzzled by why I crashed and burned so hard right at the start and why I remained so sleepy and tired for so long. The thing that really got to me is that they all seemed genuinely surprised that my physical state and daytime functioning deteriorated so rapidly and so deeply---as if they'd never had a patient have that reaction before. And it sounds as though your doc is like mine.

So where to go from here? Well, I think you've nailed a significant issue on the head: The @#$%^&*-ing insomnia monster has to be tamed one way or another. And its cruel that the doc doesn't seem to want to help you.

So, I'll ask my standard questions:

What have you tried to do to help with the insomnia? And has any of it made even a marginal difference?

And can you describe the insomnia? Is it mainly bedtime insomnia---as in can't get to sleep at the start of the night? Or is it sleep maintenance insomnia---as in wake up way too many times and have trouble getting back to sleep? Or is it wake-too-early insomnia---as in waking up 1--3 hours before you want to wake up for the morning and being unable to fall back asleep at all? Or a combination of more than one of these?

And when did the insomnia start? Before CPAP or with the start of CPAP or after you'd been CPAPing for a while? And have you any idea on what kinds of things feed the insomnia? Is it sensory stuff? Or worries? Or both?

If you've tried all the standard self-help stuff for insomniacs, have you read Dr. Krakow's Sound Sleep, Sound Mind? He has a number of somewhat unorthodox suggestions on how to handle insomnia without drugs. He focuses on seven major steps towards being able to sleep soundly every night. It's worth a read to get some fresh ideas if nothing else.

I had an appointment with my sleep dr this week. I've been on CPAP therapy for seven months. She says that CPAP therapy is working for me, basing her opinion on the AHI numbers from EncorePro2. I'm wondering why she would base her opinion on my AHI. On the sleep study she wrote, "The overall AHI was 0.2 events/hour and the overall RDI was 45.4 events/hour (....) The lowest fall in oxygen saturation was 95%." She wrote that I have mild-moderate OSAH, but told me I have UARS, not apnea (so insurance would cover CPAP therapy).

Do you know how the hypopneas on that diagnostic study were scored? Under the AASM Recommended standard or the AASM Alternative standard? The Alternative standard does NOT require an O2 desat to be scored if there is an associated arousal. And it's possible that if your study was scored under the Recommended standard, many of those events scored as RERAs may have actually been events that could have been scored under the Alternative standard.

And (going out on a limb here with speculation), the doc's reasoning may be that those "alternative standard hypopneas with arousal that got scored as RERAs" would show up in the Encore data as "hypopneas" if they were still happening in large numbers. Now is this a valid assumption to make? I'm not trained in any part of sleep stuff and so I have no idea if it's a valid assumption to make. Maybe -SWS or deltadave might be able to answer that question.

She tried to explain to me that the AHI on the sleep study is different from the one on EncorePro2, because EncorePro2 does not measure oxygen desats. But it seems to me that the oxygen desat number is neither here nor there, since it didn't drop very much on the night of my sleep study and is likely not an issue for me.
...
...
Can anyone help clarify her explanation or what my doctor might be thinking? Is it true that the sleep study and EncorePro2 calculate the AHI using different factors—and these factors are relevant in my case?

Well, it's true that EncorePro2 doesn't use oxygen desats to score events since our machines don't have an oximeter attached to them. But desats are not required to score events on a NPSG either: An apnea gets scored if there's 10+ seconds of no air going in or out of the lungs during an epoch measured as SLEEP in the EEG data. And that's true regardless of what happens to the O2 levels. And under the AASM Alternative standard, if the rate of air flow drops by at least 50% from baseline for 10+ seconds in an epoch measured as SLEEP by the EEG AND there's an arousal at the end of the event, it gets scored as a "hypopnea with arousal" and counts---even if there is NO O2 desat associated with the hypopnea. Because they don't require an associated 4% drop in O2, these "hypopneas with arousal" would NOT be scored as hypopneas under the AASM Recommended standard. But their associated arousals could easily wind up being scored for the RDI since they would clearly be respiratory related.

In the PR System One machine, the only channel of data available for scoring any kind of respiratory event is the airflow into and out of the lungs. Apneas are pretty easy to machine score: You set a threshold for "0" airflow and anytime that threshold is met for 10+ seconds, you score an apnea. (Classifying the apnea as an OA or a CA is a whole 'nuther can o'worms though). To score hypopneas, there's an algorithm for determining when the air flow drops by at least 50% from baseline for at least 10 seconds. And the PR System One is supposed to score a hypopnea anytime that happens. With all algorithms, there are some flaws and sticky situations that can trick the algorithm. In the case of machine scored hypopneas, a critical part of the algorithm is in determining what "baseline air flow" actually is at any given time. It's got to be a moving average of some sort. But how long of a period and what you do if things are not really as regular as they should be do affect the scoring of hypopneas by our full data machines regardless of brand.

And then there's the bigger problem than a lack of an oximeter attached to our machines: They don't have an EEG either. So the machines score everything that looks like an apnea or a hypopnea---regardless of whether we're wide awake with our eyes open (and holding our breath) or deeply asleep. For someone with high sleep efficiency, that's not a real problem: If you are asleep 90+ percent of the time the machine is on, the probability of large numbers of scored events occurring while you are a wake is not that large. But throw in insomnia and the fact that our breathing is naturally more ragged when we're awake than when we're asleep, and chances of some measurable portion of the scored events actually occuring while we're awake goes up. In other words, the machine is likely to score events that would not have been scored during an NPSG because during the NPSG the EEG data would say the event occurred when we were AWAKE, and hence was not part of sleep disordered breathing.

I could have sworn that a few months ago she said with UARS it's better to focus on the RERAs than AHI. But at this past appointment, when I mentioned Park quoting Krakow as having "a zero-tolerance for Flow Limitations," she said that she does not believe the FL data is accurate on EncorePro2. But Dr Park has said that RE = FL = UARS.

It could be that your doc doesn't think of FLs as discrete events, but on the System One that's the way they are most definitely scored. And there seems to be mighty little out there about exactly what has to happen and how long it has to go on before the System One scores a FL that shows up as a tick mark in the EncorePro2 flow wave data. And then there's the quality (or lack thereof) of the way the flow wave is presented in EncorePro: It can be really tough to try to see where the "funny shape" on the inspiratory bumps are when looking at the wave flow in EncorePro: Particularly if you just happen to be a rather shallow breather to start with. All that may well play into your doc saying the FL is not accurate in Encore.

And when Park and Krakow are talking about "a zero-tolerance for FLs", they are undoubtedly talking about flow limitations seen in the very high quality wave form data by the tech running a titration study. And that's data that we mere patients are never shown by the way.

[napstress]

Thank you, all, for your helpful replies. A special thank you to Robysue: I really appreciate your thoughtful and thorough reply. It's taken me a full week to find the time to contemplate your questions and frame replies. Doing so has been an excellent exercise in summarizing for myself my story so far, and looking at my behaviors. Here are my answers:

A: Insomnia:

What have you tried to do to help with the insomnia?

What hasn't worked:
Blissful Joy & Blissful Sleep (Ayurvedic remedies); Pharma Kava; Melatonin, California Poppy; Passionflower, Valerian root, and Skullcap teas and tinctures—separate and together; Hydroxyzine; Vistaril; Badger Balm; Heaven King Bolus; Natural Calm & Ionic Fizz (Calcium/Magnesium products); Liquid Calcium/Magnesium; teas from an herbalist; acupuncture and teas from an acupuncturist; acupressure; Delta Sleep System CD; Yoga for Insomnia CD; Indian chanting CD; Yoga for Sleep workshop; Calm's Forté & Insomnia and Restlessness (homeopathics); An Shen Bu Xin Wan (Chinese tea pills); Sonata; Inositol; Bach Sleep Remedy & Rescue Remedy; Nus Vomica, Coffea Cruda, Ignatia Amara, Pulsatilla (more homeos), and Ambien. With the exception of the latter, none of these worked, or they worked for 2-3 nights and then stopped working, even if I revisited them years later. The Ambien, which I had been on for months, gradually sucked me down into a depression and the doctor who prescribed it for me told me to stop taking it.

What has worked:
-A half-Xanax in the middle of the night works, but I can expect to feel irritable and tired the next day.
-Authentic Movement before bed.
-4 hours of Latin dancing and a hard massage on summer break.
-1 hour of steady yard work.

have you read Dr. Krakow's Sound Sleep, Sound Mind?

I have read Dr. Krakow's amazing book, and find many of his suggestions helpful, especially:
-deliberately imagining things, like the route from my house to my favorite restaurant,
-doing something fun/comforting/pleasant when awake in the middle (now I do the following, in this order: 1) some of the mental activities from Hanson and Mendius Buddha's Brain, 2) use my StressEraser, 3) do Reiki on someone in need, and 4) look at picture books or read something soothing and engaging enough to get my mind off my worries, but not so much so that I am stimulated or wanting to keep reading), and
-feeling my feelings during the day. This last one is very hard to do, but it is helpful.

And can you describe the insomnia?

Before CPAP:
I'd fall asleep easily between 9-10pm (I had to force myself to stay awake from after dinner to bedtime). Slept in two shifts: first shift: 4 hours. Then awake for 2 hours. The second shift: 2 hours. I'd awaken for the day between 6-6:30am. These were my best nights. On my worst nights, I'd get about 5 hours of sleep. While an average of 6.5 hours of sleep a night might seem pretty good, losing an hour a night over 20 years was making me feel very tired. On breaks from school, I'd get seven hours straight for the first couple of weeks off—plus naps. I can't believe I'm nostalgic for my pre-CPAP insomnia!

On CPAP:
Same fall-asleep time as above, but awaken for the day earlier—between 4:30-5:30am—and now have a few awakenings over the course of the night, instead of just one, sleeping in 1.5–3-hour increments. Did not get my 2-week catch-up this summer. Exhausted.

what kinds of things feed the insomnia?

Worry. I sleep in cool, dark bedroom; rarely consume caffeine; and otherwise practice reasonably good sleep hygiene. Pre-diagnosis, I did a study of what I ate for dinner, whether I exercised that day and how long before bedtime I did so; whether or not I've had a nap, at what time, and for how long; and a variety of other factors. I came to understand that one thing, only, influenced whether or not I'd have insomnia: worry/ obsessive thinking. I can even nap during the day, not exercise, or have chocolate ice cream before bed and sleep through the night, if I'm not worried!

B. AHI question:

Do you know how the hypopneas on that diagnostic study were scored? Under the AASM Recommended standard or the AASM Alternative standard? The Alternative standard does NOT require an O2 desat to be scored if there is an associated arousal. And it's possible that if your study was scored under the Recommended standard, many of those events scored as RERAs may have actually been events that could have been scored under the Alternative standard.

And (going out on a limb here with speculation), the doc's reasoning may be that those "alternative standard hypopneas with arousal that got scored as RERAs" would show up in the Encore data as "hypopneas" if they were still happening in large numbers.

And under the AASM Alternative standard, if the rate of air flow drops by at least 50% from baseline for 10+ seconds in an epoch measured as SLEEP by the EEG AND there's an arousal at the end of the event, it gets scored as a "hypopnea with arousal" and counts---even if there is NO O2 desat associated with the hypopnea. Because they don't require an associated 4% drop in O2, these "hypopneas with arousal" would NOT be scored as hypopneas under the AASM Recommended standard. But their associated arousals could easily wind up being scored for the RDI since they would clearly be respiratory related.

1. So the next time I see her, could I frame my questions this way and address what you're saying and be intelligible to the doctor? 1) Were the hypopneas scored under AASM Recommended standard or the AASM Alternative standard? 2) If scored under the Recommended standard, may some of the events scored as RERAs actually have been events that would have been scored as hypopneas under the Alternative standard? 3) Are you thinking that those "alternative standard hypopneas with arousal that got scored as RERAs" would show up in the Encore data as "hypopneas" if they were still happening in large numbers? 4) If under the AASM Recommended Standard, were the hypopneas with arousal scored for the RDI instead of as hypopneas?

throw in insomnia and the fact that our breathing is naturally more ragged when we're awake than when we're asleep, and chances of some measurable portion of the scored events actually occuring while we're awake goes up.

2. This is why I remove the mask during my awake time: I want my numbers to accurately reflect what's going on while I am sleeping. When I first started on CPAP, I kept the mask on even when awake because I wanted to get used to it and overcome the fear of the mask and machine. Once I was able to get at least 4 hours of sleep with the mask on, I started taking it off when awake.

Your explanations about the FL make a lot of sense. Thank you.

[Mary Z]

From what I understand UARS is still a fairly new diagnosis and all docs may not be up on what little is known about UARS. CPAP is the treatment.
If you have not had a thorough physical I would recommend that complete with blood work to rule out other causes of your fatigue.
You certainly seem to have tried every available remedy for insomnia. There is a method, unfortunately I don't clearly recall the details, perhaps someone else can help me out. Essentially you work around the clock moving your bedtime and wake time back 1/2 hour until you've worked your way back to normal.
Perhaps a psychologist or other professional versed in insomnia could help. I agree it's miserable.
Good luck. I'm impressed that you have taken the time to review and answer questions. With your attitude you have a better chance for success.

[napstress]

If you have not had a thorough physical I would recommend that complete with blood work to rule out other causes of your fatigue.

Yes, I've had both. Even went to an Endocrinologist, who asked me what I am doing in her office with bloodwork looking that good.

I wonder if that technique of restricting and shifting one's hours of sleep would apply in my case. I don't mind a 9:30pm-5:00am sleep schedule—I just wish it were unfragmented.

Thanks for affirming my attitude. Sometimes I worry that an unconscious negative attitude might be impeding my success with CPAP therapy.

[Perrybucsdad]

I don't know a lot about UARS, but I did stumble across something that a Dr Falcon wrote about a solution that worked for him. I can't vouch for it, but he simply states that he takes a Loratadine (regular old Claritin) just before he goes to bed (I guess that's they key... bedtime) and it solved his UARS issue. You can go here and see his first chapter of his book (granted, it's a sales pitch) so take it with a grain of salt (not literally ). But if it works, heck, why not I guess.

- John

[napstress]

Thanks, for the recommendation, John. I do tend to have allergies in the fall—and at least a small amount of nasal congestion every night. Looks like a good book.

[robysue]

Thank you, all, for your helpful replies. A special thank you to Robysue: I really appreciate your thoughtful and thorough reply. It's taken me a full week to find the time to contemplate your questions and frame replies. Doing so has been an excellent exercise in summarizing for myself my story so far, and looking at my behaviors.

You are most welcome! I'm glad my post helped you start thinking much more critically about the situation.

Let's focus for the time being on the Insomnia.

First, I'll give you credit: You really have tried a huge number of things to fight the insomnia over the years even though you've not had much success with them.

But in my humble opinion, the SINGLE MOST IMPORTANT THING you wrote in all your answers was this:

what kinds of things feed the insomnia?

Worry. I sleep in cool, dark bedroom; rarely consume caffeine; and otherwise practice reasonably good sleep hygiene. Pre-diagnosis, I did a study of what I ate for dinner, whether I exercised that day and how long before bedtime I did so; whether or not I've had a nap, at what time, and for how long; and a variety of other factors. I came to understand that one thing, only, influenced whether or not I'd have insomnia: worry/ obsessive thinking. I can even nap during the day, not exercise, or have chocolate ice cream before bed and sleep through the night, if I'm not worried! (emphasis added.)

In a nutshell, you've identified the real crux of the problem for yourself: WORRY.

Chances are that if you can get the excessive worrying under control, the insomnia will begin to abate.

Of course saying: Get the worrying under control and actually doing it are two different things. So where to go from here?

I'd start by revisiting one thing you read about (and may have attempted): In Sound Sleep, Sound Mind Krakow talks at length about how worry is the enemy of sound sleep. And he develops many strategies to help a chronic worrier to start to let go of their worries. I don't have the book in front of me, but I believe there's a whole chapter on the notion of "Closure"----the idea that each night we must bring some closure to the day before we can sleep soundly that night. It would do you good, I think, to reread that chapter carefully and start working through Krakow's exercises and tips and suggestions on how to achieve Closure each night before you actually go to bed. But you will need to work on achieving Closure for some time---as in many weeks or even several months---before it will become a positive habit for you instead of the currently well entrenched bad habit of allowing yourself to worry when you want to be asleep. So you can't just give up on this in a week or two or three and say, "Didn't work for me" and then go right back to worrying yourself out of the sleep you so badly need, crave, and want to have each night.

The SECOND most significant thing you wrote about your insomnia in my opinion is this:

What has worked:
-A half-Xanax in the middle of the night works, but I can expect to feel irritable and tired the next day.
-Authentic Movement before bed.
-4 hours of Latin dancing and a hard massage on summer break.
-1 hour of steady yard work.

So that half Xanax can be regarded as the deep, deep back up plan on the occasional disastrous night when ALL ELSE FAILS. You need to decide how frequent you're willing to take that half Xanax, given that you know how it will make you feel the next day. Maybe you'll decide that it's ok to take it once or twice a month. (Or maybe once or twice a week?) until you get that incessant worrying problem under control. But the over all idea is that as you rein in the unproductive worrying, the frequency that you take the Xanax should go down.

More positively: The four hours of Latin dancing and an hour of steady yard work have something big in common: Physical exertion. So something you can and should try to commit to is some form of physical exercise every day regardless of how tired you are from the insomnia. You likely can't do 4 hours of dancing every night. (But wouldn't it be fun if you could?) However I bet that between the necessary yard work, some dancing every week, and other places where you can build some physical activity into your schedule, you probably could increase the amount of physical exercise you get on a daily basis. And that may take the edge off the worries popping up near bedtime. Which, in turn, will help tame that insomnia monster.

I'll also note that the hour of steady yard work has to happen outside. (At least for most of us, the yard is still outside.) And I do know that for me, getting outside---in the fresh air---every day for at least an hour or so really helps with the insomnia. So if there's not an hour of yard work you're willing to do every day, think about other ways to get yourself out in the fresh air for a period longer than the walk to/from your car. Because driving to work doesn't count as "being outside". (But biking to work or walking to work does.)

I have to admit that I've never heard of Authentic Movement before. A quick google turns up this description on Wikipedia and this link to the Authentic Movement Community. My quick reading of some of the material on these pages makes me think that one of the things you get out of Authentic Movement (particularly before going to bed) is that it helps you focus your energy and thoughts inward in a way that meditation, yoga, focused relaxation, and, yes, even prayer, do for some people. In other words, there's something in AM that lets your mind turn off the worry channel and turn on some more soothing, sleep promoting channel of consciousness. And, pardon the bad and possibly insulting pun, but it seems to me that AM may help you get your wiggles out. In other words, though you'd never think of AM as "exercise", it may be that there's just the right level of physical activity that your body needs to get the wiggles out and be able to settle down comfortably in bed.

So that brings up the next set of questions for you to think about:

How often do you treat yourself to one of these activities that seems to help alleviate the insomnia? Once in a blue moon? Once or twice a month? Once a week? And when was the last time you did any of them on a regular basis?

I ask because consciously making time for these presumably pleasurable activities that seem to help you sleep better is an obvious thing to try for getting on top of the insomnia. But---and this is an important but---it's important to NOT turn these things that bring you some joy and comfort into dull, necessary, "chores" that you then worry about if they don't get done or you worry about when you do them during the day and still sleep poorly that night. In other words, make the conscious decision to pursue these kinds of activities on a regular basis because you enjoy them regardless of whether they are helping you sleep better in the immediate sense of tonight, this week, and this month. Don't even really bother trying to keep track of a correlation between doing them and how well (or badly) you are sleeping for at least four to six weeks---i.e. give it long enough where you know you're getting positive things out of these activities regardless of how well or how badly you are sleeping. Keep the emphasis on the total benefit doing these kinds of activities bring to your whole life so they don't become burdensome chores that must be done. And find enough of these pleasant, physical activities that you enjoy so you can mix it up and not do the same thing day after day after day after day after .... until you can't stand the thought of doing it any more because it's become a chore rather than a choice.

The THIRD most signficant thing you wrote is:

And can you describe the insomnia?

Before CPAP:
I'd fall asleep easily between 9-10pm (I had to force myself to stay awake from after dinner to bedtime). Slept in two shifts: first shift: 4 hours. Then awake for 2 hours. The second shift: 2 hours. I'd awaken for the day between 6-6:30am. These were my best nights. On my worst nights, I'd get about 5 hours of sleep. While an average of 6.5 hours of sleep a night might seem pretty good, losing an hour a night over 20 years was making me feel very tired. On breaks from school, I'd get seven hours straight for the first couple of weeks off—plus naps. I can't believe I'm nostalgic for my pre-CPAP insomnia!

On CPAP:
Same fall-asleep time as above, but awaken for the day earlier—between 4:30-5:30am—and now have a few awakenings over the course of the night, instead of just one, sleeping in 1.5–3-hour increments. Did not get my 2-week catch-up this summer. Exhausted.

and in a later post you write:

I wonder if that technique of restricting and shifting one's hours of sleep would apply in my case. I don't mind a 9:30pm-5:00am sleep schedule—I just wish it were unfragmented.

Let's do some arithmetic.

PRE-CPAP: On the "best" pre-CPAP nights you got seven hours of uninterrupted sleep---as in "no conscious wakes" even though you now know that the apneas were likely causing you to have interrupted sleep. And during the school year you'd sleep about 6 hours in an eight hour "time in bed" time frame. Or did you get up in the middle of the night for two hours every night? The result, however is much the same: In your head you had this idea that "sleep time" was supposed to be from roughly 9:00-10:00pm to 6:00-6:30am. In other words, in your mind you were allotting a minimum of eight hours of time for "sleep", but only sleeping for 5--6 hours per night. That's a maximum sleep efficiency of 75% since sleep efficiency is (Time asleep)/(Time in bed), and (6 hours of sleep)/(8 hours of time in bed) = 0.75.


And an hour of "lost sleep" was making you very tired (or it could have been the apnea catching up to you too). And what exactly does an hour of "lost sleep" mean in this context? An hour lying in bed NOT sleeping when you want to be asleep? Or getting seven hours of sleep when you're in bed for a grand total of maybe eight hours?

WITH CPAP: You're going to bed at 9:00-10:00 every night and waking up (for the day) at 4:30--5:30AM with "a few awakenings over the course of the night and sleeping in 1.5–3-hour increments. That's still about a 7 or 7 1/2 hour time frame for "sleeping." How many additional wakes are you currently dealing with?

My wild guess is that you're probably getting about 4.5--6 hours of (fragmented) sleep in that 7 hour "time to be in bed and asleep" time frame in your mind. How accurate is my guess?

So right now your mind thinks of 9:30--5:00 as an acceptable "sleep time", if only your sleep wasn't so fragmented. Well that means you're thinking in terms of a 7 1/2 hour "sleep time" when you've never consistently gotten more than about 6 hours of sleep during a night (pre-CPAP) during the school year. And you're likely only getting about 4.5--6 hours of (fragmented) sleep per night now. And you continue to go to bed at 9:00 hoping that tonight will be the first night in your adult life where you'll sleep soundly, without any interruptions for a solid 7 1/2 hours. But the fragmentation continues and you can't figure out why.

My humble opinion is this: Your body may simply need no more than 6 or 6.5 hours of uninterrupted sleep on the average night. But you've bought into the notion that everybody absolutely needs eight hours of sleep every single night. (Many insomniacs do believe this.) And that you'd feel ever so much better if you'd only get eight solid hours of uninterrupted sleep. (Many insomniacs also believe this.) And that in an effort to make the magic "eight hours of sleep" happen, you're going to bed so early that your body really can't manage to sleep through the entire night. So it wakes up. But your mind immediately focuses on:

It's not time to wake up yet. I need more sleep. I'm not comfortable with this CPAP blowing air up my nose. I've been lying here awake for HOW long? I have to get up in TWO HOURS. How am I going to function tommorrow? I can't get back to sleep. .....

And hence, by the time you do indeed drag yourself out of bed, you've worn yourself out with worrying about the insomnia and anything else that's come to mind to worry about. In other words, you may actually be spending too much time in bed---as in from "bedtime" to "time to get up for the day". You may indeed be able to get your sleep cycles to consolidate by using a sleep restricted schedule.

For me, a pretty severe sleep restricted schedule was indeed very important in reducing both the number of wakes I was experiencing each night and, more importantly, the length of those wakes. I still wake up anywhere between 2--4 times most nights. But on a typical night the wakes are now very short---as in 5 minutes or less. And so when I get up for the morning after a typical night, I no longer feel as though I've been tossing and turning every single night. But even now, if I go to bed an hour earlier than normal, I run a very real risk of waking up in the middle of the night and being very, very restless for anywhere between 20 minutes and an hour. And even one 20 minute restless period tends to make me feel as though I tossed and turned all night long.

So yes, I'd recommend that you at least try a bit of sleep restriction. Since you know you were capable of sleeping six hours in a given night pre-cpap, I'd start with trying to get a solid block of six hours of sleep. And since you tend to wake up around 5:00 and don't mind getting up at that (ungodly) hour, I'd say you really ought to be doing everything you can to delay bedtime until pretty close to 11:00 pm.

But be forewarned: A sleep restricted schedule is not for the faint of heart: You will likely feel really, really sleep deprived during the first two weeks or so. Maybe even the first month. But sometime within six to eight weeks you should start to notice three positive developments in your sleep: First, you should be able to fall asleep quickly once you are in bed. Second, the total number of wakes should start to drop. It may never drop to 0 consistently, but it will drop down to something you can live with. Third, the time awake at each awakening should drop towards less than 5 minutes. And once that happens, you shouldn't be waking up feeling like you've been tossing and turning and unable to get into a sound sleep every night. In other words, once your sleep efficiency gets up around 85--90%, you will feel like you are getting a decent night of sleep as far as the insomnia is concerned. You may be tired from needing more than 6 hours of sleep long term), but you won't be tired from tossing and turning all night long fighting for sleep. Once the sleep efficiency numbers are consistently above 85%, you can start working on moving the bedtime back in 15 minute intervals until your desired bedtime is reached. At each stage of the game, however, if that sleep efficiency drops to below 85% for more than an isolated night, you need to back up to the previous bedtime. And if you just can't seem to move the bedtime back any more, that may just indicate that you've found the true amount of decently consolidated sleep that you really need each night in order to function the next day. And it might be as little as 6.5--7 hours of sleep instead of the 7.5--8.5 that you currently think you need.

Which brings me to the FOURTH MOST IMPORTANT thing you wrote about your insomnia:

What hasn't worked:
Blissful Joy & Blissful Sleep (Ayurvedic remedies); Pharma Kava; Melatonin, California Poppy; Passionflower, Valerian root, and Skullcap teas and tinctures—separate and together; Hydroxyzine; Vistaril; Badger Balm; Heaven King Bolus; Natural Calm & Ionic Fizz (Calcium/Magnesium products); Liquid Calcium/Magnesium; teas from an herbalist; acupuncture and teas from an acupuncturist; acupressure; Delta Sleep System CD; Yoga for Insomnia CD; Indian chanting CD; Yoga for Sleep workshop; Calm's Forté & Insomnia and Restlessness (homeopathics); An Shen Bu Xin Wan (Chinese tea pills); Sonata; Inositol; Bach Sleep Remedy & Rescue Remedy; Nus Vomica, Coffea Cruda, Ignatia Amara, Pulsatilla (more homeos), and Ambien. With the exception of the latter, none of these worked, or they worked for 2-3 nights and then stopped working, even if I revisited them years later. The Ambien, which I had been on for months, gradually sucked me down into a depression and the doctor who prescribed it for me told me to stop taking it. (emphasis added)

That bold-faced sentence gives the impression that in spite of struggling with insomnia for years, you are still hoping and expecting to find an "instant solution" to your insomnia.

And so you've tried several drugs, numerous homeopathic remedies, herbal remedies, vitamin&mineral supplements, and a collection of insomnia treatments based on Ayurvedic, Buddist, Hindu/Indian and Eastern medicine without much luck. But all these approaches except for the prescription sleep meds from western medicine are designed as long term approaches to insomnia that can (and do) take weeks or months before they will be effective on a nightly basis. And you self-report that some of them worked for two or three days before they became ineffective and you quit using them. And others never worked at all---but you don't indicate how long you stuck with any of these approaches So a very relevant question is: How long did you give any particular approach before giving up on it?

Also notably missing from the things you've tried is plain old CBT for insomnia. Yes, there is some cognitive behavior stuff built into the Ayurvedic, Buddist, Hindu/Indian approaches, but there the behavior stuff is about teaching you how to relax and how to clear your mind (of worries perhaps?) and prepare for sleep, all of which is very useful. But spite of their strengths, these techniques do not really teach you much about how and why your current behavior patterns concerning sleep are likely aggravating your insomnia.

So my last piece of advice is this: If you do decide to try sleep restriction, you need to commit yourself to doing it for at least two solid months. And fully expect that during the first two weeks you will feel like hell. Because sleep restriction is NOT going to work in the first few nights. And even once it does start working, there will be a lot of two steps forward, one step backwards type progress towards getting the insomnia under control.

I wish you the best of luck in making whatever your chosen approach(es) to fighting the insomnia work. And if you'd like more details about my own experiences with sleep restriction as an insomnia-fighting tool, either post here or PM me and I'll point you to numerous old posts of mine written when I was actively working on the restricting sleep part of the program instead of the trying to move bedtime back part of the program, which has been difficult for me because apparently I don't really need much more than 5 1/2 hours of sleep to function, although I really would feel a bit better if I were consistently getting 6 hours of sleep each night.

[Elvin]

Thank you, all, for your helpful replies. A special thank you to Robysue: I really appreciate your thoughtful and thorough reply. It's taken me a full week to find the time to contemplate your questions and frame replies. Doing so has been an excellent exercise in summarizing for myself my story so far, and looking at my behaviors.

You are most welcome! I'm glad my post helped you start thinking much more critically about the situation.

Let's focus for the time being on the Insomnia.

First, I'll give you credit: You really have tried a huge number of things to fight the insomnia over the years even though you've not had much success with them.

But in my humble opinion, the SINGLE MOST IMPORTANT THING you wrote in all your answers was this:

what kinds of things feed the insomnia?

Worry. I sleep in cool, dark bedroom; rarely consume caffeine; and otherwise practice reasonably good sleep hygiene. Pre-diagnosis, I did a study of what I ate for dinner, whether I exercised that day and how long before bedtime I did so; whether or not I've had a nap, at what time, and for how long; and a variety of other factors. I came to understand that one thing, only, influenced whether or not I'd have insomnia: worry/ obsessive thinking. I can even nap during the day, not exercise, or have chocolate ice cream before bed and sleep through the night, if I'm not worried! (emphasis added.)

In a nutshell, you've identified the real crux of the problem for yourself: WORRY.

Chances are that if you can get the excessive worrying under control, the insomnia will begin to abate.

Of course saying: Get the worrying under control and actually doing it are two different things. So where to go from here?

I'd start by revisiting one thing you read about (and may have attempted): In Sound Sleep, Sound Mind Krakow talks at length about how worry is the enemy of sound sleep. And he develops many strategies to help a chronic worrier to start to let go of their worries. I don't have the book in front of me, but I believe there's a whole chapter on the notion of "Closure"----the idea that each night we must bring some closure to the day before we can sleep soundly that night. It would do you good, I think, to reread that chapter carefully and start working through Krakow's exercises and tips and suggestions on how to achieve Closure each night before you actually go to bed. But you will need to work on achieving Closure for some time---as in many weeks or even several months---before it will become a positive habit for you instead of the currently well entrenched bad habit of allowing yourself to worry when you want to be asleep. So you can't just give up on this in a week or two or three and say, "Didn't work for me" and then go right back to worrying yourself out of the sleep you so badly need, crave, and want to have each night.

The SECOND most significant thing you wrote about your insomnia in my opinion is this:

What has worked:
-A half-Xanax in the middle of the night works, but I can expect to feel irritable and tired the next day.
-Authentic Movement before bed.
-4 hours of Latin dancing and a hard massage on summer break.
-1 hour of steady yard work.

So that half Xanax can be regarded as the deep, deep back up plan on the occasional disastrous night when ALL ELSE FAILS. You need to decide how frequent you're willing to take that half Xanax, given that you know how it will make you feel the next day. Maybe you'll decide that it's ok to take it once or twice a month. (Or maybe once or twice a week?) until you get that incessant worrying problem under control. But the over all idea is that as you rein in the unproductive worrying, the frequency that you take the Xanax should go down.

More positively: The four hours of Latin dancing and an hour of steady yard work have something big in common: Physical exertion. So something you can and should try to commit to is some form of physical exercise every day regardless of how tired you are from the insomnia. You likely can't do 4 hours of dancing every night. (But wouldn't it be fun if you could?) However I bet that between the necessary yard work, some dancing every week, and other places where you can build some physical activity into your schedule, you probably could increase the amount of physical exercise you get on a daily basis. And that may take the edge off the worries popping up near bedtime. Which, in turn, will help tame that insomnia monster.

I'll also note that the hour of steady yard work has to happen outside. (At least for most of us, the yard is still outside.) And I do know that for me, getting outside---in the fresh air---every day for at least an hour or so really helps with the insomnia. So if there's not an hour of yard work you're willing to do every day, think about other ways to get yourself out in the fresh air for a period longer than the walk to/from your car. Because driving to work doesn't count as "being outside". (But biking to work or walking to work does.)

I have to admit that I've never heard of Authentic Movement before. A quick google turns up this description on Wikipedia and this link to the Authentic Movement Community. My quick reading of some of the material on these pages makes me think that one of the things you get out of Authentic Movement (particularly before going to bed) is that it helps you focus your energy and thoughts inward in a way that meditation, yoga, focused relaxation, and, yes, even prayer, do for some people. In other words, there's something in AM that lets your mind turn off the worry channel and turn on some more soothing, sleep promoting channel of consciousness. And, pardon the bad and possibly insulting pun, but it seems to me that AM may help you get your wiggles out. In other words, though you'd never think of AM as "exercise", it may be that there's just the right level of physical activity that your body needs to get the wiggles out and be able to settle down comfortably in bed.

So that brings up the next set of questions for you to think about:

How often do you treat yourself to one of these activities that seems to help alleviate the insomnia? Once in a blue moon? Once or twice a month? Once a week? And when was the last time you did any of them on a regular basis?

I ask because consciously making time for these presumably pleasurable activities that seem to help you sleep better is an obvious thing to try for getting on top of the insomnia. But---and this is an important but---it's important to NOT turn these things that bring you some joy and comfort into dull, necessary, "chores" that you then worry about if they don't get done or you worry about when you do them during the day and still sleep poorly that night. In other words, make the conscious decision to pursue these kinds of activities on a regular basis because you enjoy them regardless of whether they are helping you sleep better in the immediate sense of tonight, this week, and this month. Don't even really bother trying to keep track of a correlation between doing them and how well (or badly) you are sleeping for at least four to six weeks---i.e. give it long enough where you know you're getting positive things out of these activities regardless of how well or how badly you are sleeping. Keep the emphasis on the total benefit doing these kinds of activities bring to your whole life so they don't become burdensome chores that must be done. And find enough of these pleasant, physical activities that you enjoy so you can mix it up and not do the same thing day after day after day after day after .... until you can't stand the thought of doing it any more because it's become a chore rather than a choice.

The THIRD most signficant thing you wrote is:

And can you describe the insomnia?

Before CPAP:
I'd fall asleep easily between 9-10pm (I had to force myself to stay awake from after dinner to bedtime). Slept in two shifts: first shift: 4 hours. Then awake for 2 hours. The second shift: 2 hours. I'd awaken for the day between 6-6:30am. These were my best nights. On my worst nights, I'd get about 5 hours of sleep. While an average of 6.5 hours of sleep a night might seem pretty good, losing an hour a night over 20 years was making me feel very tired. On breaks from school, I'd get seven hours straight for the first couple of weeks off—plus naps. I can't believe I'm nostalgic for my pre-CPAP insomnia!

On CPAP:
Same fall-asleep time as above, but awaken for the day earlier—between 4:30-5:30am—and now have a few awakenings over the course of the night, instead of just one, sleeping in 1.5–3-hour increments. Did not get my 2-week catch-up this summer. Exhausted.

and in a later post you write:

I wonder if that technique of restricting and shifting one's hours of sleep would apply in my case. I don't mind a 9:30pm-5:00am sleep schedule—I just wish it were unfragmented.

Let's do some arithmetic.

PRE-CPAP: On the "best" pre-CPAP nights you got seven hours of uninterrupted sleep---as in "no conscious wakes" even though you now know that the apneas were likely causing you to have interrupted sleep. And during the school year you'd sleep about 6 hours in an eight hour "time in bed" time frame. Or did you get up in the middle of the night for two hours every night? The result, however is much the same: In your head you had this idea that "sleep time" was supposed to be from roughly 9:00-10:00pm to 6:00-6:30am. In other words, in your mind you were allotting a minimum of eight hours of time for "sleep", but only sleeping for 5--6 hours per night. That's a maximum sleep efficiency of 75% since sleep efficiency is (Time asleep)/(Time in bed), and (6 hours of sleep)/(8 hours of time in bed) = 0.75.


And an hour of "lost sleep" was making you very tired (or it could have been the apnea catching up to you too). And what exactly does an hour of "lost sleep" mean in this context? An hour lying in bed NOT sleeping when you want to be asleep? Or getting seven hours of sleep when you're in bed for a grand total of maybe eight hours?

WITH CPAP: You're going to bed at 9:00-10:00 every night and waking up (for the day) at 4:30--5:30AM with "a few awakenings over the course of the night and sleeping in 1.5–3-hour increments. That's still about a 7 or 7 1/2 hour time frame for "sleeping." How many additional wakes are you currently dealing with?

My wild guess is that you're probably getting about 4.5--6 hours of (fragmented) sleep in that 7 hour "time to be in bed and asleep" time frame in your mind. How accurate is my guess?

So right now your mind thinks of 9:30--5:00 as an acceptable "sleep time", if only your sleep wasn't so fragmented. Well that means you're thinking in terms of a 7 1/2 hour "sleep time" when you've never consistently gotten more than about 6 hours of sleep during a night (pre-CPAP) during the school year. And you're likely only getting about 4.5--6 hours of (fragmented) sleep per night now. And you continue to go to bed at 9:00 hoping that tonight will be the first night in your adult life where you'll sleep soundly, without any interruptions for a solid 7 1/2 hours. But the fragmentation continues and you can't figure out why.

My humble opinion is this: Your body may simply need no more than 6 or 6.5 hours of uninterrupted sleep on the average night. But you've bought into the notion that everybody absolutely needs eight hours of sleep every single night. (Many insomniacs do believe this.) And that you'd feel ever so much better if you'd only get eight solid hours of uninterrupted sleep. (Many insomniacs also believe this.) And that in an effort to make the magic "eight hours of sleep" happen, you're going to bed so early that your body really can't manage to sleep through the entire night. So it wakes up. But your mind immediately focuses on:

It's not time to wake up yet. I need more sleep. I'm not comfortable with this CPAP blowing air up my nose. I've been lying here awake for HOW long? I have to get up in TWO HOURS. How am I going to function tommorrow? I can't get back to sleep. .....

And hence, by the time you do indeed drag yourself out of bed, you've worn yourself out with worrying about the insomnia and anything else that's come to mind to worry about. In other words, you may actually be spending too much time in bed---as in from "bedtime" to "time to get up for the day". You may indeed be able to get your sleep cycles to consolidate by using a sleep restricted schedule.

For me, a pretty severe sleep restricted schedule was indeed very important in reducing both the number of wakes I was experiencing each night and, more importantly, the length of those wakes. I still wake up anywhere between 2--4 times most nights. But on a typical night the wakes are now very short---as in 5 minutes or less. And so when I get up for the morning after a typical night, I no longer feel as though I've been tossing and turning every single night. But even now, if I go to bed an hour earlier than normal, I run a very real risk of waking up in the middle of the night and being very, very restless for anywhere between 20 minutes and an hour. And even one 20 minute restless period tends to make me feel as though I tossed and turned all night long.

So yes, I'd recommend that you at least try a bit of sleep restriction. Since you know you were capable of sleeping six hours in a given night pre-cpap, I'd start with trying to get a solid block of six hours of sleep. And since you tend to wake up around 5:00 and don't mind getting up at that (ungodly) hour, I'd say you really ought to be doing everything you can to delay bedtime until pretty close to 11:00 pm.

But be forewarned: A sleep restricted schedule is not for the faint of heart: You will likely feel really, really sleep deprived during the first two weeks or so. Maybe even the first month. But sometime within six to eight weeks you should start to notice three positive developments in your sleep: First, you should be able to fall asleep quickly once you are in bed. Second, the total number of wakes should start to drop. It may never drop to 0 consistently, but it will drop down to something you can live with. Third, the time awake at each awakening should drop towards less than 5 minutes. And once that happens, you shouldn't be waking up feeling like you've been tossing and turning and unable to get into a sound sleep every night. In other words, once your sleep efficiency gets up around 85--90%, you will feel like you are getting a decent night of sleep as far as the insomnia is concerned. You may be tired from needing more than 6 hours of sleep long term), but you won't be tired from tossing and turning all night long fighting for sleep. Once the sleep efficiency numbers are consistently above 85%, you can start working on moving the bedtime back in 15 minute intervals until your desired bedtime is reached. At each stage of the game, however, if that sleep efficiency drops to below 85% for more than an isolated night, you need to back up to the previous bedtime. And if you just can't seem to move the bedtime back any more, that may just indicate that you've found the true amount of decently consolidated sleep that you really need each night in order to function the next day. And it might be as little as 6.5--7 hours of sleep instead of the 7.5--8.5 that you currently think you need.

Which brings me to the FOURTH MOST IMPORTANT thing you wrote about your insomnia:

What hasn't worked:
Blissful Joy & Blissful Sleep (Ayurvedic remedies); Pharma Kava; Melatonin, California Poppy; Passionflower, Valerian root, and Skullcap teas and tinctures—separate and together; Hydroxyzine; Vistaril; Badger Balm; Heaven King Bolus; Natural Calm & Ionic Fizz (Calcium/Magnesium products); Liquid Calcium/Magnesium; teas from an herbalist; acupuncture and teas from an acupuncturist; acupressure; Delta Sleep System CD; Yoga for Insomnia CD; Indian chanting CD; Yoga for Sleep workshop; Calm's Forté & Insomnia and Restlessness (homeopathics); An Shen Bu Xin Wan (Chinese tea pills); Sonata; Inositol; Bach Sleep Remedy & Rescue Remedy; Nus Vomica, Coffea Cruda, Ignatia Amara, Pulsatilla (more homeos), and Ambien. With the exception of the latter, none of these worked, or they worked for 2-3 nights and then stopped working, even if I revisited them years later. The Ambien, which I had been on for months, gradually sucked me down into a depression and the doctor who prescribed it for me told me to stop taking it. (emphasis added)

That bold-faced sentence gives the impression that in spite of struggling with insomnia for years, you are still hoping and expecting to find an "instant solution" to your insomnia.

And so you've tried several drugs, numerous homeopathic remedies, herbal remedies, vitamin&mineral supplements, and a collection of insomnia treatments based on Ayurvedic, Buddist, Hindu/Indian and Eastern medicine without much luck. But all these approaches except for the prescription sleep meds from western medicine are designed as long term approaches to insomnia that can (and do) take weeks or months before they will be effective on a nightly basis. And you self-report that some of them worked for two or three days before they became ineffective and you quit using them. And others never worked at all---but you don't indicate how long you stuck with any of these approaches So a very relevant question is: How long did you give any particular approach before giving up on it?

Also notably missing from the things you've tried is plain old CBT for insomnia. Yes, there is some cognitive behavior stuff built into the Ayurvedic, Buddist, Hindu/Indian approaches, but there the behavior stuff is about teaching you how to relax and how to clear your mind (of worries perhaps?) and prepare for sleep, all of which is very useful. But spite of their strengths, these techniques do not really teach you much about how and why your current behavior patterns concerning sleep are likely aggravating your insomnia.

So my last piece of advice is this: If you do decide to try sleep restriction, you need to commit yourself to doing it for at least two solid months. And fully expect that during the first two weeks you will feel like hell. Because sleep restriction is NOT going to work in the first few nights. And even once it does start working, there will be a lot of two steps forward, one step backwards type progress towards getting the insomnia under control.

I wish you the best of luck in making whatever your chosen approach(es) to fighting the insomnia work. And if you'd like more details about my own experiences with sleep restriction as an insomnia-fighting tool, either post here or PM me and I'll point you to numerous old posts of mine written when I was actively working on the restricting sleep part of the program instead of the trying to move bedtime back part of the program, which has been difficult for me because apparently I don't really need much more than 5 1/2 hours of sleep to function, although I really would feel a bit better if I were consistently getting 6 hours of sleep each night.

Hey robysue really like ur post u really described each and every thing in details thats very good thanks for sharing such a precious knowledge.......

[napstress]

Hi, Robysue.

Thank you, again, for an attentive and well-reasoned reply. I don't know how you write so much so fast: it takes me a week to process and respond to your responses!

1. Worry:
I looked again at the Day Is Done section of SSSM, and saw one tip that I hadn't yet tried: the Unfinished Business list. I have been doing it for the past six nights, along with the Authentic Movement again. The first night I did them, I slept 8 hours through the night! But the next five nights have been fragmented and short, again. Doing this reminded me of another similar good thing I had been doing for months, but got out of the habit of. I will persist in these three activities, because even if I do not see an immediate improvement on my sleep, they do feel good and could snowball.

I'm not sure what you meant by getting "the wiggles out" with Authentic, but if you meant getting the cranky creaks out of my spine and hips, that's exactly what it does—and no offense taken!

2. What works:

So that half Xanax can be regarded as the deep, deep back up plan on the occasional disastrous night when ALL ELSE FAILS. You need to decide how frequent you're willing to take that half Xanax, given that you know how it will make you feel the next day.

I tried a half Xanax this past Mon when I woke up in the middle. I had stopped using it for several months. After trying it again on Mon it knocked me out, cold—and also left me tired all day Tues. (I've tried taking it at the beginning of the night if I was feeling anxiety, but I'd still wake up in the middle). I'm thinking I don't want to use it as a sleep aid. Maybe just for anxiety. I'd rather be tired b/c short on sleep than tired b/c drugged.

You hit the nail on the head about the presumably pleasurable activities starting to feel like obligatory chores rather than choices. I used to dance for an hour every day, but stopped, partially for this reason. Your suggestion to mix up different types of physical activities is an excellent one. Today I will draw up a list of a few fun physical activities so I choose whatever appeals the most on any given day. Thank you!

3. Numbers of hours of sleep:
A sleep-restricted schedule: Yeeeccchhh... I am in awe that you were able to do it. I'm only considering it b/c you have found success with it. If I do it, I might start at the beginning of May, just before final exams. That way I can go through hell during my happiest time of year, the time of year when it doesn't matter if I am insane, and when I have some light to help keep me up toward the end of the day.

I'm wondering if it's possible to restrict my sleep schedule starting from the morning, though. A few sources I've read say that we get better-quality sleep in the beginning of the night. I know it's true for me. I can't see chipping away at the only part of the night that is relatively solid for me. Maybe I'll set my alarm earlier and earlier in the morning. Yes, I would like to read your old posts on this topic, as well as any other sources you might recommend.

About my sleep schedule:

On the "best" pre-CPAP nights you got seven hours of uninterrupted sleep---as in "no conscious wakes"

On my best pre-CPAP nights, I would get four hours of uninterrupted sleep (not six), then, after two hours of wakefulness, another two.

So right now your mind thinks of 9:30--5:00 as an acceptable "sleep time", if only your sleep wasn't so fragmented. Well that means you're thinking in terms of a 7 1/2 hour "sleep time" when you've never consistently gotten more than about 6 hours of sleep during a night (pre-CPAP) during the school year. And you're likely only getting about 4.5--6 hours of (fragmented) sleep per night now. And you continue to go to bed at 9:00 hoping that tonight will be the first night in your adult life where you'll sleep soundly, without any interruptions for a solid 7 1/2 hours. But the fragmentation continues and you can't figure out why.

A few years ago, I consciously made the decision to give myself 9 hours to get however many hours of sleep I was going to get. It took the pressure off. I started coming from a place of acceptance—"given I have this insomnia, how can I work with it?"

Your body may simply need no more than 6 or 6.5 hours of uninterrupted sleep on the average night. But you've bought into the notion that everybody absolutely needs eight hours of sleep every single night. (Many insomniacs do believe this.) And that you'd feel ever so much better if you'd only get eight solid hours of uninterrupted sleep.

While I am willing to question the idea our culture and medical establishment promotes that we need eight hours of sleep per night, I base my idea that my ideal is 7.5 hours on two things:
1) that's how much I used to get (as an adult) before I had insomnia, and
2) on the rare instances when I sleep 7 or more hours, I feel much, much better than usual. I actually catch myself wondering why I feel so clear in my head and am in such a good mood—and then realize that it's because I got more sleep than usual, or I had a nice, hefty block (6 hours or more) of unfragmented sleep.

If I felt well-rested, energetic, clear-headed, without a lump in my throat, did not have an overpowering urge to nap starting at 10:30am, and/or was able to stay awake on outings to Barnes and Noble in the afternoon or watching a movie with my husband at 7pm, I would completely agree that I only need 6-6.5 hours of sleep a night.

I was hoping one of two things would happen when starting CPAP therapy:
1) If the numbers of microarousals were reduced, maybe that would lessen my odds of awakening completely.
2) Since CPAP therapy is (theoretically) improving the quality of my sleep, I might feel well-rested on whatever number of hours of sleep I actually get.

But my sleep is more fragmented and I am more sleepy. Hence, the despair.


4. What didn't work:

That bold-faced sentence gives the impression that in spite of struggling with insomnia for years, you are still hoping and expecting to find an "instant solution" to your insomnia (....) But all these approaches except for the prescription sleep meds from western medicine are designed as long term approaches to insomnia that can (and do) take weeks or months before they will be effective on a nightly basis.

It's true, I did try many of these approaches only for a few days. It didn't occur to me that they would take weeks or months before consistently being effective. Thank you for pointing that out. Several of the approaches, however, I have given a good, long try (like acupuncture, the teas, aromatherapy, and yoga. Also, I forgot to mention it, but I tried light therapy for several months). I have stuck with these things—and CPAP therapy for seven months, despite no experience of its actually benefiting me—because I understand that I've had insomnia for a long time and might take a while to turn around. I don't plan on revisiting the approaches I've already tried, though. If they take a while to start working, then they probably work on the whole body system; I'm afraid they will make me sleepier during the day.

Re: CBT: I have spent thousands of dollars on talk therapy and, while I loved my therapists and loved going to therapy, I deeply regret the waste of money. While I understand that CBT is different, I am unwilling to pay any more therapists. I wish that Byron Katie's Loving What Is, Marshall Rosenberg's NonViolent Communication, Norman Doidge's The Brain that Changes Itself, and Hanson and Mendius' Buddha's Brain existed 20 years ago. Working the principles in those books, which total less than $75.00, have done more for my distancing from my thinking, changing the worry channel, and engaging in more constructive behaviors with difficult people than all those years of therapy. Am I still doing them? The last one, yes. The first two, no. I will start working them again, directly: a couple of other things that feel good and, while no guarantee of a good night's sleep that night, might snowball.

I am aware that much of this response is "Yeah, I used to do that thing and it worked for the insomnia (or at least had some other benefit), but I've stopped doing it." Thanks for holding me by the hand and kicking me in the butt!

[squid13]

I found out about Dr. Falcon and Clairtin by reading this thread viewtopic.php?f=1&t=36738&st=0&sk=t&sd=a You have to read down a little before you get to him but it is a very interesting discussion.

[robysue]

Hi, Robysue.

Thank you, again, for an attentive and well-reasoned reply. I don't know how you write so much so fast: it takes me a week to process and respond to your responses!

It astonishes my less than verbal hubby as well. Writing has always come easily to me---when I care about the subject. I have a conversation in my head going on most of the time. Writing is essentially transcribing that conversation....

1. Worry:
I looked again at the Day Is Done section of SSSM, and saw one tip that I hadn't yet tried: the Unfinished Business list. I have been doing it for the past six nights, along with the Authentic Movement again. The first night I did them, I slept 8 hours through the night! But the next five nights have been fragmented and short, again. Doing this reminded me of another similar good thing I had been doing for months, but got out of the habit of. I will persist in these three activities, because even if I do not see an immediate improvement on my sleep, they do feel good and could snowball.

Make a commitment to stick with these three activities for at least three months. It takes that long for them to be habits that you do without thinking too much about them. And like any kind of behavioral approach to insomnia, they're not going to work every night. You might want to keep a simple sleep diary to try to figure out what tends to trigger the fragmented sleep on the bad nights. Just don't give up too soon.

I'm not sure what you meant by getting "the wiggles out" with Authentic, but if you meant getting the cranky creaks out of my spine and hips, that's exactly what it does—and no offense taken!

That's exactly what I meant by get the wiggles out.

3. Numbers of hours of sleep:
A sleep-restricted schedule: Yeeeccchhh... I am in awe that you were able to do it. I'm only considering it b/c you have found success with it. If I do it, I might start at the beginning of May, just before final exams. That way I can go through hell during my happiest time of year, the time of year when it doesn't matter if I am insane, and when I have some light to help keep me up toward the end of the day.

I'm wondering if it's possible to restrict my sleep schedule starting from the morning, though. A few sources I've read say that we get better-quality sleep in the beginning of the night. I know it's true for me. I can't see chipping away at the only part of the night that is relatively solid for me. Maybe I'll set my alarm earlier and earlier in the morning. Yes, I would like to read your old posts on this topic, as well as any other sources you might recommend.

and

While I am willing to question the idea our culture and medical establishment promotes that we need eight hours of sleep per night, I base my idea that my ideal is 7.5 hours on two things:
1) that's how much I used to get (as an adult) before I had insomnia, and
2) on the rare instances when I sleep 7 or more hours, I feel much, much better than usual. I actually catch myself wondering why I feel so clear in my head and am in such a good mood—and then realize that it's because I got more sleep than usual, or I had a nice, hefty block (6 hours or more) of unfragmented sleep.

The usual way a sleep restricted schedule works is you pick a wake up time that you think you can live with for the next three months. And pick a Time in Bed window that is just a tiny bit less than what you want your total sleep time to eventually be. And then count back to get bed time. So the whole idea doesn't need to be as stringent as my schedule was/is. Since you think you function best with 7.5 hours of sleep, start by trying to get 7 hours of consolidated sleep first. For you, if the idea of waking up at 4:30 is bearable, it might be worth trying going to bed at 9:30 and getting up at 4:30---at least on those restless nights of fragmented sleep. If getting up at 4:30 is not an attractive idea, you might want to try to delay bedtime by at least 30 minutes and go to bed at 10:00 instead of 9:30. Regardless of which end you try to trim the time, don't go to bed unless you are genuinely sleepy at bedtime. What's played havoc with me for so long is that I am a night owl and I just don't get very sleepy until its after 2:00 AM on most nights: If I could fall asleep at 1:30, I'd now be regularly getting the 6 to 6.5 hours of sleep that I personally need to function well and still be getting up early enough in the morning to not be rushing around all the time. But my body really wants to have its sleep between 2:30AM and 8:30AM, which just doesn't work with my current class schedule.

I was hoping one of two things would happen when starting CPAP therapy:
1) If the numbers of microarousals were reduced, maybe that would lessen my odds of awakening completely.
2) Since CPAP therapy is (theoretically) improving the quality of my sleep, I might feel well-rested on whatever number of hours of sleep I actually get.

But my sleep is more fragmented and I am more sleepy. Hence, the despair.

Pre-CPAP I'd had my bouts with insomnia. But in the year immediately preceding my diagnosis and starting on CPAP, my insomnia was pretty much under control: I'd usually go to bed between 11:00pm and midnight and spend about 30-40 minutes lying in bed getting to sleep. That long latency to sleep was not a problem: I'd caress my hubby and do some pretty elaborate daydreaming. I had no trouble avoiding worrying about things during that time most nights and I wasn't a clock watcher. It just took me a long time to drift off to sleep. And then I'd pretty much sleep straight through (in the sense of conscious wake ups) until the alarm went off at 6:30 or 7:00 on most nights and have only one or two conscious wakes (often involving a bit of restlessness) on my "bad" nights. During that last year before being diagnosed it was getting harder and harder to force myself out of bed in the mornings. And I was waking up feeling much less rested and in much more pain than I had even as recent as 4 or 5 years ago.

Fast forward to three months AFTER starting CPAP: I was a walking basket case because of two facts:

1. Because going to bed at my normal pre-CPAP bedtime was leading to pretty severe bedtime insomnia and extreme discomfort in the form of aerophagia and other issues, I developed a nasty case of the bedtime dreads: I simply put off going to bed until I knew I could get to sleep fast enough to be asleep before the sensory overload from the machine woke me right back up. (Be thankful this has not happened to you.)
2. I also developed a nasty case of sleep maintenance insomnia of the sort you are currently fighting. On my first bi-level titration sleep study, I was WIDE AWAKE (as measured by the EEG) for three solid hours after I woke up after my first sleep cycle. And I didn't even think I was awake the whole time---I thought I was drifting in and out of sleep. I was shocked when the PA showed me the graph of the sleep stages. And because I'd been lying in bed at home for hours thinking that I was drifting in and out of sleep a lot of the time, I started to realize I was probably getting a lot less sleep than I thought I was.

Like you, I thought that as the CPAP took care of all the micro and mini arousals due to SDB, that I should expect the number of actual full-fledged wakes lasting long periods of time would go down. In other words, back before CPAP, every time I aroused, I think the conscious part of my brain did NOT sense that it had to wake me up further once the breathing normalized. And so my pre-CPAP sleep felt continuous to me in the morning even though it was highly fragmented by micro and mini arousals occurring all night long. But I've come to think that once my body was no longer arousing itself to breathe all the time, that it was still very, very sensitive to all kinds of night time stimuli---including the sensation of the air being blown down my airway by the machine. And I think all this extra physical stimuli triggered additional wakes.

My hypothesis is that since my body no longer needs to arouse itself to breathe, every time it does arouse itself because of some sensory stimulus, the conscious part of my brain goes, "Whoa there---why am I awake? It's not because I need to open that airway. There must be something REALLY wrong. Let's get all the way to wake and stay there long enough to figure out why I'm awake ..." And so the wakes, while technically fewer in number, are much longer and much more at the forefront of my memory of the night, and hence affect the subjective quality of my post-CPAP sleep far more than the numerous formerly "normal" pre-CPAP arousals due to SDB had affected the subjective quality of my pre-CPAP sleep. The net result is that my sleep WITH the CPAP subjectively feels far more fragmented than my pre-CPAP sleep had. And that, in turn, made me feel far, far worse in the daytime for the first six to eight months on CPAP. Notably with the sleep restricted schedule, my conscious mind finally began figuring it out about eight to ten months after I started CPAP: Now when I arouse/wake up in the middle of the night, I typically get back to sleep within 5 minutes or so. And so even with 2--4 wakes per night, my sleep is no longer subjectivlely feeling so fragmented. And as my subjective interpretation of the continuity of my sleep has changed, the more rested and refreshed I feel in the morning. And finally I'm even getting the occasional night with 0 conscious wake ups these days: I've had two of them in the last month!

It's true, I did try many of these approaches only for a few days. It didn't occur to me that they would take weeks or months before consistently being effective. Thank you for pointing that out. Several of the approaches, however, I have given a good, long try (like acupuncture, the teas, aromatherapy, and yoga. Also, I forgot to mention it, but I tried light therapy for several months). I have stuck with these things—and CPAP therapy for seven months, despite no experience of its actually benefiting me—because I understand that I've had insomnia for a long time and might take a while to turn around. I don't plan on revisiting the approaches I've already tried, though. If they take a while to start working, then they probably work on the whole body system; I'm afraid they will make me sleepier during the day.

There's no need to revisit previous approaches. My comment was really more to trigger the awareness that you need to focus on giving your current choice of anti-insomnia strategies enough time to start working. I think you got that point.

Re: CBT: I have spent thousands of dollars on talk therapy and, while I loved my therapists and loved going to therapy, I deeply regret the waste of money. While I understand that CBT is different, I am unwilling to pay any more therapists. I wish that Byron Katie's Loving What Is, Marshall Rosenberg's NonViolent Communication, Norman Doidge's The Brain that Changes Itself, and Hanson and Mendius' Buddha's Brain existed 20 years ago. Working the principles in those books, which total less than $75.00, have done more for my distancing from my thinking, changing the worry channel, and engaging in more constructive behaviors with difficult people than all those years of therapy. Am I still doing them? The last one, yes. The first two, no. I will start working them again, directly: a couple of other things that feel good and, while no guarantee of a good night's sleep that night, might snowball.

The beauty of much CBT, in my humble opinion, is that you CAN do it through self-help books (such as the ones you've listed and SSSM and other decent self-help books focusing how to handle insomnia). All it takes is for you to make the commitment to give the strategies in the books a real, honest trial that lasts long enough for it to work.

I am aware that much of this response is "Yeah, I used to do that thing and it worked for the insomnia (or at least had some other benefit), but I've stopped doing it." Thanks for holding me by the hand and kicking me in the butt!

You're welcome! I thought getting back in touch with some of the more hidden parts of your previous battles with the insomnia monster might prove to be enlightening to you.

[napstress]

Make a commitment to stick with these three activities for at least three months.

Thanks for saying this. I had heard that it takes 3 weeks to instill a good habit or end a bad habit. I would have given these things a month if you hadn't said to give them three.

Thank you also for the info on sleep restriction.

don't go to bed unless you are genuinely sleepy at bedtime

No problem there! I could fall asleep at 7pm but fight it until 9:00.

I developed a nasty case of the bedtime dreads: I simply put off going to bed until I knew I could get to sleep fast enough to be asleep before the sensory overload from the machine woke me right back up. (Be thankful this has not happened to you.)

Yes, I experienced a touch of this for a week or two and it was no picnic!

On my first bi-level titration sleep study, I was WIDE AWAKE (as measured by the EEG) for three solid hours after I woke up after my first sleep cycle. And I didn't even think I was awake the whole time---I thought I was drifting in and out of sleep. I was shocked when the PA showed me the graph of the sleep stages. I started to realize I was probably getting a lot less sleep than I thought I was.

This is fascinating to me. I have heard of people thinking they were awake but were actually sleeping more than they thought they were. But this is just the reverse!

And finally I'm even getting the occasional night with 0 conscious wake ups these days: I've had two of them in the last month!

YAY!


Back to the AHI question:

robysue wrote:Do you know how the hypopneas on that diagnostic study were scored? Under the AASM Recommended standard or the AASM Alternative standard? The Alternative standard does NOT require an O2 desat to be scored if there is an associated arousal. And it's possible that if your study was scored under the Recommended standard, many of those events scored as RERAs may have actually been events that could have been scored under the Alternative standard.

And (going out on a limb here with speculation), the doc's reasoning may be that those "alternative standard hypopneas with arousal that got scored as RERAs" would show up in the Encore data as "hypopneas" if they were still happening in large numbers.

robysue wrote:And under the AASM Alternative standard, if the rate of air flow drops by at least 50% from baseline for 10+ seconds in an epoch measured as SLEEP by the EEG AND there's an arousal at the end of the event, it gets scored as a "hypopnea with arousal" and counts---even if there is NO O2 desat associated with the hypopnea. Because they don't require an associated 4% drop in O2, these "hypopneas with arousal" would NOT be scored as hypopneas under the AASM Recommended standard. But their associated arousals could easily wind up being scored for the RDI since they would clearly be respiratory related.


1. So the next time I see her, could I frame my questions this way and address what you're saying and be intelligible to the doctor? 1) Were the hypopneas scored under AASM Recommended standard or the AASM Alternative standard? 2) If scored under the Recommended standard, may some of the events scored as RERAs actually have been events that would have been scored as hypopneas under the Alternative standard? 3) Are you thinking that those "alternative standard hypopneas with arousal that got scored as RERAs" would show up in the Encore data as "hypopneas" if they were still happening in large numbers? 4) If under the AASM Recommended Standard, were the hypopneas with arousal scored for the RDI instead of as hypopneas?

Do these questions make sense? Sometimes I ask the doctor something that I have an incomplete understanding of based on what I read on this forum. Then, when she does not understand my question, I cannot reframe it! I believe I am grasping what you were saying, here, but just want to make sure that my questions are clear to you before I try to pose them to her.