Why have prescription maximums (at least initially)?

PEF,

I'm going to write two responses to what you've said in your last couple of posts. This one is about the "technical" aspects of your therapy and your sleep. The second one will focus on your answers to Sludge's questions and less on the technical stuff.

According to Pugsy, your Flow Limitation graph on the Resmed has quite a bit of activity in it and you also mention UARS as a problem.

Is UARS an official diagnosis? Or are you putting things together from Sleep Interrupted and noticing that your pattern matches what Dr. Park says about UARS?

Now some responses to specific things you've written:

PEF wrote: The machines FELT very different. I don't know what it was. I used the Dreamstation for maybe a total of one month, split into about 2 weeks each. Both times, I could not get used to it and did not sleep well. My brain cried out for the Resmed. I felt the Resmed was "with" me, sort of "knew" me. I felt a strange sense that the Dreamstation was not in sync with my mind.

So the answer to the question of which machine to use is pretty simple: Use the S9 since you are more comfortable with it.

Yes, the S9 doesn't record RERAs and the Flow Limitation graph is more difficult to interpret than the Flow Limitation Tick marks on the DreamStation. But the point of therapy is to get some sleep. And if the DreamStation doesn't feel right, then it's NOT the machine for you.

And because I think you ought to be using the S9 rather than the DreamStation, in this post I'm not going to comment on the DreamStation for the most part. If there is some reason that makes you want to revist the question of whether to use the DreamStation, we can revisit that later. But you've made it clear that you and your brain prefer the S9 AutoSet and I see no good reason to argue with your brain and body's preference.

1. I am not after 0 AHI, but I would like it to be below 5 on both machines. But I do believe you that the numbers on both machines are good. I do think that my OSA is treated, but I am not sure about my UARS. That is such a complicated subject. that is why I wonder so much about RERA's and FL's.

As you already know, the S9 AutoSet does not record RERAs. I believe the S9 AutoSet for Her does record RERAs. But just like the PR DreamStations's RERAs, the "for Her" is inferring that a RERA probably occurred based on the shape of the wave flow. The PR machines are looking for evidence of a "recovery breath" or two following a sequence of flow limited breaths. I would assume that the "S9 AutoSet for Her" does a similar thing.

Now as Pugsy said: Flow limitations seems to be what's driving the S9 to increase your pressure to the max setting each night. I understand this problem well: Flow limitations and the PR search algorithm (which is looking for "baby flow limitations") is what drives my own IPAP to literally sit at max IPAP pressure for 50% or more of the night on most nights.

The question is whether the flow limitations that are showing up in the S9 Flow Limitation graph are "real" in the sense of being caused by an airway that is in danger of collapsing or whether they're caused by something else---something that does not actually respond to additional pressure by getting "better". In my case, I have evidence, gained the hard way, that no matter where I set my max IPAP, the IPAP is going to go up to max pressure. And if the max IPAP is less than about 12 or 12cm, it's likely to stay at max IPAP for a large chunk of the night without making any real difference in my Flow Limitation Index and making me feel a whole lot worse in terms of aerophagia.

Some things that would help me tease out just how bad your flow limitations actually are:

1) A picture of the daily data for the whole night from a bad night on the S9, where you get to define "bad night" in terms that are most important to you, that shows the following in this order:

• The event chart
  The Flow Rate graph
  The Flow Limitation graph
  The Pressure graph

2) A zoomed in picture of data from the same bad night on the S9 where you zoom in on the part of the graph where the Flow Limitation graph is the "busiest" or has the highest y-values. I'd like a zoom in that is between 5-10 minutes long. The graphs should be the same graphs as above.

3) A zoomed in picture of the data from the same bad night on the S9 where you zoom in a part of the graph where the Flow Limitation graph is as "boring" as possible---in other words, a place where you think you were asleep AND the machine is scoring no or very little flow limitations.

If you want spend a bit more time, you could also post the same data from a bad night on the DreamStation where the zooms would be for the part of the graph with the most densely packed FL ticks and a part of the graph with no FL ticks.

The point of all this is to see if we can establish what your normal breathing pattern looks like on the S9. And whether there is a significant visual change that is clearly apparent when the machine decides to start increasing pressure based on activity in the FL graph.

It cannot fix insomnia. My sleep onset insomnia has continued to be worse since I started CPAP. I don't know why because the mask and tape are very comfortable. I guess my brain just uses it as an excuse to do what it wants: to stay awake. I read Dr. Krakow's book and got a lot out of it. But it made me realize that I am not a normal person when it comes to sleep. For example, I just don't get sleepy at night. It takes medication to do that. In the morning, I never remember falling asleep. And if I do get sleepy, it only lasts a few minutes at most.

Have you heard of delayed sleep phase?

We all have our own circadian rhythm, and some of us just don't get sleepy at a "normal" time. Left to its own devices, most people's bodies will settle down into a roughly 24-hour cycle where they get sleepy at roughly the same time every 24-hours. And while most people get sleepy towards the beginning of the night, not everybody does. For example, left to its own devices, my body would prefer to sleep from 3:30 or 4:00am to about 10:30 or 11:00am, but that doesn't quite work with my day job as a college professor.

So some questions for you:

1) If you could sleep whenever your body and mind naturally got sleepy, when would your sleep window be? In other words, when would you naturally fall asleep without the medication and when would you wake up?

2) When do you need or want your bedtime to be? In other words, when do you need your body to be asleep in order to do the things you need to do in your life?

3) What medication are you taking to help with your sleep onset insomnia? When do you take it? How often do you take it? How well does it work when you take it?

I think the leak problem happens when the insomnia is bad and it takes me 3 or 4 hours to get to sleep, or more. I fall into a DEAD sleep, often grinding my face into the pillow and somehow rolling around on my hose (even with the hanger). My mouth will be dry in the morning and I will be vaguely aware of struggling a few times to keep my mask on and in place. On these nights I get about 4 to 5 hours at most. I usually don't feel great in the morning, but better that I would feel, pre-cpap. It is just frustrating to have a really good night with minimal leaks and the next spending 20% of the night in large leak territory.

When I can get to sleep within an hour, my mask stays in place, mouth leaks are minimal and I wake up feeling really good.

So LEAKS continue to be a BIG issue for your CPAP therapy.

Indeed, it may be that LEAKS are what you need to be focusing your attention on rather than the FL, RERA, and UARS stuff. How often do you have a "really good night" in terms of LEAKS and how often do you have a "really bad night" in terms of LEAKS?

Also it is not a surprise to me that you have more problems overall on nights where it takes you 3-4 hours to fall soundly asleep. My guess is that you probably also have more problems with aerophagia on nights where it takes you 3-4 hours to fall soundly asleep.

Some questions:

1) On the nights when it takes you 3-4 hours to fall asleep, are you lying in bed with the mask on fighting with the machine? If so, you ought to just get out of bed and go do something enjoyable to get your mind off the machine and go back to bed when you start to get a wee bit sleepy.

2) Do you have more aerophagia problems when it takes you 3-4 hours to fall asleep vs. a night where you are lucky enough to fall asleep much quicker?

3) What was your preferred sleep position before you started CPAP? Have you had serious problems trying to make that preferred sleep position work with CPAP?

4) Have you considered running the hose under the covers and next to your body rather than hanging it overhead?

5) What kinds of things have you tried to fix the LEAK problem beyond switching masks?

I have been obsessed with raising the pressure, I know that. I am bothered by the pressure graph hugging the top for most of the night. I made the graph look better by raising the pressure to max 10 one night, but did not sleep well, lots of leaks and stomach air. So I will just leave the pressure where I am most comfortable. I agree that comfort is most important. (emphasis added)

Again, why are you obsessed with making the pressure graph "look better"?

Think of it this way: If you were using straight CPAP, the pressure curve would be a straight, horizontal line at your (max) pressure for 100% of the night.

And, as you noted, increasing the pressure just so that you're not hugging your max pressure setting did NOT do anything positive for your sleep.

It's time to stop focusing so much on how good/bad the APAP data looks on paper and more on how good/bad you feel in the morning. If you feel decent enough in the morning and your pressure curve is at your max pressure for 50% of the night, why should you give a fig about the pressure graph? Particularly since your current settings are effectively treating the OSA and they are more than likely treating the UARS stuff "good enough"

Some things to think about: The more you worry about your sleep in terms of what's going "wrong" each night, the more likely you are to get "stuck" in very light Stage 1/Stage 2 sleep for very long periods during the night. And not getting past Stage 2 sleep into Stage 3 and REM is going to show up in terms of how lousy you feel the next day.

To answer question #4, I have both Flex and EPR turned off. I did some experimenting, but noticed no difference in comfort. Do you have any specific advice?

Go with COMFORT.

If you are equally comfortable with and without EPR, then turning EPR off makes sense: It's one less variable your body has to deal with. With EPR off you don't run the risk of feeling like the machine is trying to control your breathing if it has trouble tracking your breathing OR if you are very sensitive to when the pressure is increased during the exhalation-to-inhalation stage of your normal breathing pattern.

That said, some people with aerophagia problems find EPR or bilevel useful because it does minimize the amount of air being blown down your throat during exhalation. For me, the real fix for my very severe aerophagia involved three things: (1)a switch to BiPAP (from an S9 AutoSet with EPR = 3), (2) cognitive behavior therapy to drastically shorten my latency to sleep, and (3) time. You've been at this for a long time and you're still having pretty severe problems. So you might want to seriously consider whether shortening your latency to sleep would help your aerophagia as well as your total collection of sleep problems. And if the aerophagia has been pretty severe the entire time you've been on APAP, you might want to consider alternate xPAP strategies.

Which brings me to my last point in this post:

Have you ever considered trying straight CPAP instead of APAP? It could be that even with your exceptionally tight pressure range of 6.4--7.4 on the S9 that your body would be happier if you just set the thing at 7cm for the whole night. Then there would be one less "variable" that your body would have to deal with during the night. Your AHI would likely go up, but since the S9 is reporting an AHI < 1.0 most nights, you've got room to allow the AHI to go up, particularly if you feel better in spite of a slightly higher AHI.

I am in the process of designing a sleep log, based on Robysue's recommendations. It is not as easy as I thought it would be. I hope it will be worth the effort.

I'm glad to hear you're going to do a sleep log. Just keep it simple so it's not too much of a drag to complete each day.

MarkWill wrote:Curious to know what the value is in having a maximum for pressure with a prescription. My prescription is set to 6.0 - 12.0. I can understand the reason for the minimum, but not clear on why my machine would be restricted to 12. I am sure my doctor will be reviewing this data online and looking to adjust in due course but my initial impression on looking at SleepyHead is that I hit max a few times per night. It's not a huge amount but I do hit max.

What would be the disadvantage in setting it higher and letting my body indicate what it actually needs, rather than how my prescription is set (at least in the first few days or which which, I assume, are valuable for assessing how I am doing)?

Thanks.

Mark

No disadvantage...

PEF wrote: I will start with the 3 questions Sludge asked you about your therapy: That will also explain about the quality of my sleep.

1. I am not after 0 AHI, but I would like it to be below 5 on both machines. But I do believe you that the numbers on both machines are good. I do think that my OSA is treated, but I am not sure about my UARS. That is such a complicated subject. that is why I wonder so much about RERA's and FL's.

I talked about this in the previous post. Pugsy's had a chance to look at your Flow Limitation data, but I haven't. My guess is that your UARS is better under control than you think it is.

2. What is my short term goal? My goal was to stop certain symptoms that were happening to me while I slept at night and would often wake me up: weird incidents of LPR. Waking up in the morning with a sore throat, stuffed nose or asthma symptoms. I had read in Dr. Steven Park's book "Sleep Interrupted", that UARS can cause these symptoms. I also woke up with headaches, had to use the bathroom several times at night, etc. THIS GOAL HAS BEEN ACCOMPLISHED. CPAP has taken most of these symptoms away. I am so happy about that.

Your pre-CPAP symptoms were:

Waking up with a sore throat
Waking up with a stuffy nose
Waking up with asthma symptoms (when you don't have asthma?)
Waking up with headaches
Waking up several times during the night to go pee
etc. (What things in the "etc" are most important?)

On a scale of 0-5 where 0=No change at all to 5=completely eliminated, where do these things stand with your current APAP therapy?

3. My long term goal is to get better quality sleep. This has been only partly accomplished. I have some great nights, but still a lot of bad nights. I can't seem to get into a pattern where I have consistent ok nights and I am really not sure why. It may be that I am expecting too much from my therapy. I am determined to get as much out of it as I can.

In the words of Sludge: xPAP doesn't fix bad sleep. xPAP fixes sleep disordered breathing, but it doesn't fix any other sleep problem.

Ok, so I now feel pretty certain that my CPAP therapy is maxed out, after asking 3 experts over and over. My husband tells me I tend to want to tinker with things and I guess he is right. My other sleep issues are not related to CPAP therapy.

My guess is those experts are right. And so is your husband. And so are you when you state that your other sleep issues are indeed NOT related to CPAP therapy.

So what you've got to do is stop tinkering with the CPAP machine's settings and START tinkering with the things that are MOST likely to fix your other sleep problems

In reading your posts, your other sleep problems seem to include severe sleep onset insomnia with a very, very long latency to sleep, and two xPAP problems that may be aggravated by the severe sleep onset insomnia: Leaks and aerophagia.

You need to start by accepting this fact: If your sleep onset insomnia was 100% caused by untreated OSA/UARS, then xPAP would fix it---as soon as you are capable of actually sleeping well with the equipment. But it sounds to me like you've got a cluster of sleep problems and until they are all addressed, your long term goal of consistently getting decent sleep is going to be hard to accomplish. And if, as I suspect, there's more going on with your sleep than OSA/UARS, dial wingin' is not likely to accomplish your long term goal.

Hence the need for the sleep log.

Having said all that, it is clear that there are things going on with your APAP therapy that are aggravating your (non OSA/UARS) sleep problems.


Severe Sleep Onset Insomnia Problems
You write:

It cannot fix insomnia. My sleep onset insomnia has continued to be worse since I started CPAP. I don't know why because the mask and tape are very comfortable. I guess my brain just uses it as an excuse to do what it wants: to stay awake. I read Dr. Krakow's book and got a lot out of it. But it made me realize that I am not a normal person when it comes to sleep. For example, I just don't get sleepy at night. It takes medication to do that. In the morning, I never remember falling asleep. And if I do get sleepy, it only lasts a few minutes at most.

In my opinion fixing the sleep onset insomnia is going to be an important step, probably the critical, key step in accomplishing your long term goal of getting high quality sleep on a nightly basis. Unfortunately, conquering sleep onset insomnia is not as simple as dial wingin' your APAP settings. The sleep log will be a useful start on bringing the sleep onset insomnia under control. Also think about and answer all these questions about your sleep onset insomnia:

When does your body want to sleep? And when do you want your body to sleep? These are not the same thing.

What medication are you taking for the sleep onset insomnia? What are the instructions for taking it? How well does it work? Almost always? Sometimes? Not very often? Have you tried alternative sleep medications?

Have you tried getting out of bed on the nights when you just can't get to sleep after 20-30 minutes rather than tossing and turning for 3-4 hours?

Do you watch the clock at night when you can't sleep?

When you are tossing and turning and unable to get to sleep for 3-4 hours, can you feel the aerophagia getting worse as your inability to get to sleep becomes prolonged?

Do you spend a lot of time worrying when you find yourself unable to get to sleep for 3-4 hours? Are you worrying about how little sleep you'll get before you have to wake up? Or are you worrying about big issues in your life that you can't solve at night anyway?

Do you have a bedtime routine? If so what is it? Does your bedtime routine include anything that is consciously designed to help you turn your mind's thinking OFF? Or is your mind still going full throttle when you go to bed?


Leaks
You write:

I think the leak problem happens when the insomnia is bad and it takes me 3 or 4 hours to get to sleep, or more. I fall into a DEAD sleep, often grinding my face into the pillow and somehow rolling around on my hose (even with the hanger). My mouth will be dry in the morning and I will be vaguely aware of struggling a few times to keep my mask on and in place. On these nights I get about 4 to 5 hours at most. I usually don't feel great in the morning, but better that I would feel, pre-cpap. It is just frustrating to have a really good night with minimal leaks and the next spending 20% of the night in large leak territory.

When I can get to sleep within an hour, my mask stays in place, mouth leaks are minimal and I wake up feeling really good.

So there appears to be a correlation between leaks and sleep onset insomnia. What's not clear is whether there is a causation relation and if so, which way the causation works.

In other words, it may be important to tease out the following:

Does tossing and turning from a night with bad sleep onset insomnia lead to leak problems? Or do leak problems lead to a worsening of the sleep onset insomnia?

If bad insomnia leads to more tossing and turning which leads to more problems with leaks, then fixing the sleep onset insomnia should help fix the leak problems.

On the other hand, if having trouble getting a good seal at the beginning of the night leads to frustration with the mask and machine, that can aggravate the sleep onset insomnia because your brain is now working overtime dealing with the dang leaks and "where can I put the mask to minimize the leaks, but this position is not comfortable, but if I move the leaks will start up again, so do I dare move, and I just can't stand it any more. And now the aerophagia is kicking in ...."

One possible "fix" for both problems is to just get out of bed when the leaks are starting up and you just can't find a comfortable position to fall asleep in that doesn't have noticeable leaks to keep bothering you. In other words, if you've tried to fix the leaks two or three times and you're still dealing with them after 20-30 minutes, get out of bed and go do something fun to get your mind off the leaks, the mask, and the machine. When you come back to bed, it may be easier to get the mask situated just the way you want to in order to minimize the leaking.

And then there's all the other standard advice for fixing leaks: Change the mask. Use a liner (if you are not using nasal pillows.) Loosen the mask's headgear. (Over tightening the head gear is the number one cause of leaks.) Use a special CPAP pillow with a cutout for the mask. Make sure your face is squeaky clean if you have oily skin. My guess is that you've tried some or all of them.


Aerophagia Problems
You write:

I have been obsessed with raising the pressure, I know that. I am bothered by the pressure graph hugging the top for most of the night. I made the graph look better by raising the pressure to max 10 one night, but did not sleep well, lots of leaks and stomach air.

Your questions about aerophagia are what initially caught my eye in your posts. Aerophagia at low pressures is just not well understood by most people here on the board or by many sleep docs. And unfortunately, it's not a hot area for research either.

If there's any chance you may have GERD, it's worth having that checked out: It is known that patients with both untreated OSA and untreated GERD have more problems with aerophagia. But it also possible to have aerophagia problems without GERD.

Standard GERD self-help measures can help manage aerophagia in some people: Don't eat too late. Pay attention to whether certain foods eaten at supper or during the evening make the aerophagia worse. Sleep with the head elevated (on a wedge or by elevating the whole head of the bed.) Sleep on your left side rather than your right side if you are a side sleeper.

But then there's this: When you are tossing and turning and NOT sleeping, but fighting with the mask, you are probably doing a lot of unconscious swallowing. And there's a nasty feeback loop that can get stared when aerophagia is a major issue:

• More restlessness leads to more swallowing which leads to more air in the stomach which leads to more aerophagia which leads to more arousals, miniwakes, and restlessness, which leads to more swallowing which leads to m ore air in the stomach which leads to more aerophagia which leads to more arousals, miniwakes, and restlessness .....

In other words, your very long sleep latency is likely a contributing factor to your aerophagia even if you're not keenly aware of the growing air bubble in your stomach when you are trying to get to sleep at the beginning of the night. And if the aerophagia is bad enough to wake you up during the night, then you probably are not sleeping well anyway due to a lot of spontaneous arousals caused by the aerophagia rather than respiratory-related arousals caused by the RERAs, Hs, and OAs that manage to slip through the PAP defenses.


Concluding Comments
My guess is that you need to start putting all your efforts into addressing the very long sleep latency that is the hallmark of your sleep onset insomnia. If you can figure out a way to cut down on your sleep latency, my guess is that you will start feeling better on a daily basis. There's no easy way "fix" the sleep latency problem, but there are things that can be done. In my case fixing the sleep latency problem required some seriously hard CBT for Insomnia (that I've written about in my blog). And to maintain the short sleep latency I need in order to keep my aerophagia under control and sleep reasonably well, I've had to admit that I do need sleep medication and a lightbox (during the winter) to help stabilize my bedtime and my wake up time. If they get too far out of whack from my desired sleep schedule, then almost everything related to my sleep goes to hell in a handbasket pretty quickly.

robysue wrote:As you already know, the S9 AutoSet does not record RERAs. I believe the S9 AutoSet for Her does record RERAs.

I think you meant AirSense 10 but typed S9.
None of the S9 machines do any RERA flagging.

It's the AirSense 10 that offers RERA flagging...now to confuse things...the AirSense manual clearly states that only the AutoSet for Her has RERA flagging...it's very plainly shown (unless there's a newer manual with changes to that graph that I haven't seen) that only the for Her model does the RERA flagging but I have personally seen reports from the regular AirSense 10 AutoSet showing RERA flags present...and we've confirmed with pictures that it is indeed the regular AutoSet being used.

I don't know if ResMed has elected to activate RERA flagging on the regular Autoset or if maybe these were units that got programmed differently by accident.

I am 99.9% certain that the difference is software programming in the bulk of the ResMed machines but I can't prove it.

I have just read through all of this and want to wait until I am more clear headed to post some answers.I did not get much sleep last night. Robysue, it will take me some time to get the graphs posted.

You are both right about the sleep onset insomnia. I guess I knew that all along. I can tell you that it is not the leaks that cause the insomnia, but the other way around. When I first get to bed, I am so happy to have my mask on and be off my feet (I have some serious back pain issues that are somewhat worse the last year and am in the process of getting new MRI's for the doctor - mostly age related stuff) But I need to make it clear that any back pain I might have mostly goes away about 30 minutes after I go to bed, so it is not the back pain that keeps me awake. This may sound strange, but often the back pain helps me get to sleep because it helps me focus on the relaxation of pain going away and keeps me from thinking about "life" issues that could keep me awake. I have no leaks from the mask and no discomfort. But gradually, the longer I can't drop off to sleep, I become aware that my tongue is getting tired on the roof of my mouth and air bubbles are making their way into my mouth and I am starting to feel like there is also air in my stomach. When this happens, I get up the first time. Usually I avoid the computer and I can't turn the TV back on because the noise will wake up my husband who also has serious sleep problems. I usually just sit in the LR, petting the sleeping dogs and listening to the ocean. I don't have a clock in the bedroom. During this 3 to 5 hour latency period I usually get up twice. I am describing a very bad night.

I do resort to Ambien if I have gone back to bed the second time and cannot drop off, but will have to explain about that in a later post.

I need to learn how to use the quote function effectively, so I can be more specific about which questions I am answering. I am working on that now. So back later and thanks SO MUCH for the attention you are both devoting to helping me.

"Is UARS an official diagnosis? Or are you putting things together from Sleep Interrupted and noticing that your pattern matches what Dr. Park says about UARS?"

No, it is not official. There is a very specific, very expensive, test for this diagnosis, based on the measurement of the buildup of pressure in one's chest, as measured by a catheter placed in one's esophagus. This really can't be done in a regular sleep lab. There is zero chance I will ever have access to this test. But I have had some personal contact with Dr. Park and, while he won't diagnose over the internet, he does think I am a candidate for this diagnosis. Insomnia is extremely common with this.

"So the answer to the question of which machine to use is pretty simple: Use the S9 since you are more comfortable with it."

Yes, I am back to using the Resmed exclusively.


"As you already know, the S9 AutoSet does not record RERAs. I believe the S9 AutoSet for Her does record RERAs. But just like the PR DreamStations's RERAs, the "for Her" is inferring that a RERA probably occurred based on the shape of the wave flow. The PR machines are looking for evidence of a "recovery breath" or two following a sequence of flow limited breaths. I would assume that the "S9 AutoSet for Her" does a similar thing.

Now as Pugsy said: Flow limitations seems to be what's driving the S9 to increase your pressure to the max setting each night. I understand this problem well: Flow limitations and the PR search algorithm (which is looking for "baby flow limitations") is what drives my own IPAP to literally sit at max IPAP pressure for 50% or more of the night on most nights.

The question is whether the flow limitations that are showing up in the S9 Flow Limitation graph are "real" in the sense of being caused by an airway that is in danger of collapsing or whether they're caused by something else---something that does not actually respond to additional pressure by getting "better". In my case, I have evidence, gained the hard way, that no matter where I set my max IPAP, the IPAP is going to go up to max pressure. And if the max IPAP is less than about 12 or 12cm, it's likely to stay at max IPAP for a large chunk of the night without making any real difference in my Flow Limitation Index and making me feel a whole lot worse in terms of aerophagia."

Yes, I believe I understand this. I have spent a lot of time reading your previous posts on the subject as well as Pugsy's post. I did buy the Dreamstation to get the large amount of data it provides.

I will get the graphs to you as soon as I can.

"Have you heard of delayed sleep phase?"

We all have our own circadian rhythm, and some of us just don't get sleepy at a "normal" time. Left to its own devices, most people's bodies will settle down into a roughly 24-hour cycle where they get sleepy at roughly the same time every 24-hours. And while most people get sleepy towards the beginning of the night, not everybody does. For example, left to its own devices, my body would prefer to sleep from 3:30 or 4:00am to about 10:30 or 11:00am, but that doesn't quite work with my day job as a college professor.

So some questions for you:

1) If you could sleep whenever your body and mind naturally got sleepy, when would your sleep window be? In other words, when would you naturally fall asleep without the medication and when would you wake up?

2) When do you need or want your bedtime to be? In other words, when do you need your body to be asleep in order to do the things you need to do in your life?

3) What medication are you taking to help with your sleep onset insomnia? When do you take it? How often do you take it? How well does it work when you take it?

Yes, I have heard of delayed sleep phase. This has been an issue for me all my life. Like you, if I could, my hours of sleep would be to go to sleep around 2 to 3am and wake up around 9am. Only twice in my life have I not had insomnia, one of these periods was for about 3 years when I worked second shift and lived alone, after my first husband passed away. But even then I was never able to sleep in after 9am, so always felt I could have used a little more sleep.

Now, I would like my bedtime to be 10 or 11pm and up time 6 or 7am, as it was when I was working. But when I was working, I needed medication to make this happen and that is a whole other story I will get to later. I cannot take the meds I was taking back then for a variety of reasons, the most obvious one being side effects. The big problem now is that my brain does not want to go to sleep until at least 2am, but still wants to get up at 6 or 7 am. I can go to bed anytime I want and get up anytime, but cannot seem to sleep past 7 or at most 8am. And I have tried keeping the noise down and the room dark in the morning, but it does not work.

I will take a break now and tackle the meds issue when I return. I appreciate your attention and do not want to be too demanding, so take your time responding, maybe you don't want to respond until I have answered everything. I am hoping, somewhere down the line, this thread can help someone going through what I am going through!

Robysue, Here is a part of a post you made about my sleep, which is spot on. I am often not able to distinguish between when I have been sleeping lightly and awake.

"It sounds like you are a typical insomniac. There have been studies done that show that insomniacs over estimate the amount of time they are awake during the night and under estimate the amount of time they are asleep. And sometimes their estimates are way, way off. I remember reading one study where they had both insomniacs and non-insomniacs sleeping in a lab. The tech would randomly come in and ask the subject, "Were you awake or asleep before I came in to wake you up?" Sometimes EEG showed the subject was asleep just before the tech came into the room and sometimes the EEG showed the subject was awake just before the tech came into the room. The non-insomniacs were quite accurate in reporting their correct sleep/wake status. The insomniacs were wrong more than 50% of the time---to put that figure another way, the insomniacs did worse that you would expect from random guessing. The hypothesis is that many insomniac brains have a difficult time establishing the difference between being in WAKE and Stage 1/2 (light) SLEEP."

OK on to meds. The other time in my life with no insomnia was from 1990 until 2006. During that time I took a very small dose of a combination drug, containing both Amitriptiline and Perphenazine. The latter is a typical anti-psychotic drug that is sometimes used to treat very severe cases of insomnia. Up until then, I had never taken anything for sleep. But after my husband passed away in 1987, my insomnia got so bad I was unable to work for a month. Nothing else worked. This drug was like a miracle. I became a normal sleeper. But by 2006, I was getting older and these drugs are known to be problematic for older adults. I gave up the Perphenazine and 1/2 if the Amitriptiline because of side effects.



Now, I still take my .25 amitriptiline each night. For several years in the past I took Ambien to help with the sleep onset insomnia. Other sleep meds never worked for me. I would take them, they would knock me out for 2 hours and I would awaken, not able to get back to sleep, often for the rest of the night. They actually made the problem worse. However, I have had some issues with Ambien. Often it would not work when I took the full dose before bed (750mg). I quickly realized that it did not really matter if I cut these pills in quarters and only took a quarter before bed. A really small dose worked just as well as a larger dose, IF I WAS REALLY TIRED. So after giving up on Ambien several times, I finally settled on a pattern of use that works pretty well. Ambien has a short half-life, so if I take a quarter before bed and I am still awake an hour to 2 hours later, I get up and take another quarter. If this does not work, I may take a third quarter, but very seldom. Often I do not take it before bed at all, but might later. I generally take 1/4 to 1/2 of a 750mg pill per night. Sometimes I have a week or two when the insomnia is not bad, so I stop taking it. It works better when I start again. Earlier this year, I stopped taking it for 3 months. that about covers the meds.

"Again, why are you obsessed with making the pressure graph "look better"?"

I will get off the pressure thing.

"Go with COMFORT.

If you are equally comfortable with and without EPR, then turning EPR off makes sense: It's one less variable your body has to deal with. With EPR off you don't run the risk of feeling like the machine is trying to control your breathing if it has trouble tracking your breathing OR if you are very sensitive to when the pressure is increased during the exhalation-to-inhalation stage of your normal breathing pattern."

I have tried both Flex and EPR (set to 3). But I don't notice any difference. I never feel the machine is trying to control my breathing. And I have never found it hard to exhale even with higher pressure than I normally use. So I will leave those off.


"That said, some people with aerophagia problems find EPR or bilevel useful because it does minimize the amount of air being blown down your throat during exhalation. For me, the real fix for my very severe aerophagia involved three things: (1)a switch to BiPAP (from an S9 AutoSet with EPR = 3), (2) cognitive behavior therapy to drastically shorten my latency to sleep, and (3) time. You've been at this for a long time and you're still having pretty severe problems. So you might want to seriously consider whether shortening your latency to sleep would help your aerophagia as well as your total collection of sleep problems. And if the aerophagia has been pretty severe the entire time you've been on APAP, you might want to consider alternate xPAP strategies.

Which brings me to my last point in this post:

Have you ever considered trying straight CPAP instead of APAP? It could be that even with your exceptionally tight pressure range of 6.4--7.4 on the S9 that your body would be happier if you just set the thing at 7cm for the whole night. Then there would be one less "variable" that your body would have to deal with during the night. Your AHI would likely go up, but since the S9 is reporting an AHI < 1.0 most nights, you've got room to allow the AHI to go up, particularly if you feel better in spite of a slightly higher AHI."

My aerophagia is not severe. I had problems with it the first month or so, but time took care of it. It was when I raised the pressure above 8 on the resmed and above 9 on the Dreamstation that it became much more of a problem. BUT, as I said earlier, nights when I can't get to sleep for hours, I can feel it starting and I have to get up. After laying in bed for about 1 and 1/2 hours, I can feel the air sneaking in from the left side where I have a missing molar and soon after, I can feel some in my stomach. So 2 things cause the aerophagia, the sleep onset insomnia and raising pressure too much.

I have thought about going with straight CPAP often. I am going to try it tonight.


"Your pre-CPAP symptoms were:

Waking up with a sore throat 4
Waking up with a stuffy nose 4
Waking up with asthma symptoms (when you don't have asthma?) Yes, no asthma, 4
Waking up with headaches 5
Waking up several times during the night to go pee 5
etc. (What things in the "etc" are most important?) headaches and sore throats

On a scale of 0-5 where 0=No change at all to 5=completely eliminated, where do these things stand with your current APAP therapy?"
Answers above.

Break time!

Roby Sue and PEF, you might be interested reading this exert in the book, Insomniac by Gayle Greene, that shows that the issue of sleep state misperception is a lot more complex than researchers would previously lead you to believe.

https://books.google.com/books?id=-tGpp ... en&f=false

49er wrote:Roby Sue and PEF, you might be interested reading this exert in the book, Insomniac by Gayle Greene, that shows that the issue of sleep state misperception is a lot more complex than researchers would previously lead you to believe.

https://books.google.com/books?id=-tGpp ... en&f=false

Thanks for the link.

Thanks, 49er. I spent the last hour reading the excerpts from this book. I can really relate to this. 1. the total frustration with professionals
2. CBT - this worked marvelously well for me to treat the depression I experienced after my husband died. Once I realized that I was depressed because I was thinking depressing thoughts without realizing it was effecting my mood, I began to watch for those thoughts and openly challenging them. Once I "got" it, I made a really rapid recovery. It worked so well and was so simple. However CBT for insomnia has never worked for me. I have tried it over and over, if fact, I actually think the effort makes it worse. In fact, a Psychiatrist actually explained why it does not work for me. It is a long explanation, but suffice it to say that CBT requires a "rational mind". Not all parts of our brains are rational, for example the LIMBIC part of the brain, which is mainly concerned with safety and survival. Somehow, during my childhood trauma, my limbic brain decided "sleeping is not a SAFE activity". This probably happened during my 3 weeks spent in the hospital when I was about 3 years old. You cannot give an irrational part of the mind a rational protocol and expect that it will work. This is the Psychiatrist who gave me the low dose of Perphenazine. This probably "turned off' that thing that disallowed sleep. I took this an hour before bedtime and puff - sleep anxiety GONE.

In fact I worked with a really good spiritualist on this, after I had to stop taking this drug because of side effects. The "root" chakra is thought to correspond to this "limbic brain". So we did many exercises to strengthen this chakra. I won't go into a long thing, but suffice it to say that I was only partially successful with this line of attack. I still do use it and often play chakra meditation tapes when I have some of my worst times.

I really wanted to just say THANK YOU for this thread.

Thank you to OP, MarkWill and also a huge THANK YOU to PEF for trying to seek help in public and in front of us all.

It is so difficult to seek help when you do not know the vocabulary. Do not have the computer skills. Do not even know how to quote.

Hard to explain your symptoms and keep at it searching for answers when it would just be easy to say ...
"OK, I got it thank you" (even when you don't )

Pugsy and RobbySue and all the experts on this thread (49er ) are amazing.

I want you to know other people are being helped by your efforts here.
...and *for me* watching 'live' just makes it sink in so much better than just reading old threads somehow?

I'm not sure why that is?

CPAPTALK is a real blessing ~~~
Thank You again!

Pugsy wrote:

robysue wrote:As you already know, the S9 AutoSet does not record RERAs. I believe the S9 AutoSet for Her does record RERAs.

I think you meant AirSense 10 but typed S9.
None of the S9 machines do any RERA flagging.

Yep, you're right. Thanks for pointing this out. I'm not as up to date on the Resmed machines as I should be

It's the AirSense 10 that offers RERA flagging...now to confuse things...the AirSense manual clearly states that only the AutoSet for Her has RERA flagging...it's very plainly shown (unless there's a newer manual with changes to that graph that I haven't seen) that only the for Her model does the RERA flagging but I have personally seen reports from the regular AirSense 10 AutoSet showing RERA flags present...and we've confirmed with pictures that it is indeed the regular AutoSet being used.

That's a useful factoid to know about.

Doe the clinical stuff say anything about the criteria the AirSense 10 AutoSet uses to score a RERA?

Thank-you, Grace, you are so wonderful. To be going through so much yourself and to be so kind and attentive to others is beyond perfection!

I sent a PM to MarkWill apologizing for hijacking his thread.

robysue wrote:Does the clinical stuff say anything about the criteria the AirSense 10 AutoSet uses to score a RERA?

I've never seen any definitions to that effect.

robysue wrote:My guess is those experts are right. And so is your husband. And so are you when you state that your other sleep issues are indeed NOT related to CPAP therapy.

So what you've got to do is stop tinkering with the CPAP machine's settings and START tinkering with the things that are MOST likely to fix your other sleep problems

In reading your posts, your other sleep problems seem to include severe sleep onset insomnia with a very, very long latency to sleep, and two xPAP problems that may be aggravated by the severe sleep onset insomnia: Leaks and aerophagia.

You need to start by accepting this fact: If your sleep onset insomnia was 100% caused by untreated OSA/UARS, then xPAP would fix it---as soon as you are capable of actually sleeping well with the equipment. But it sounds to me like you've got a cluster of sleep problems and until they are all addressed, your long term goal of consistently getting decent sleep is going to be hard to accomplish. And if, as I suspect, there's more going on with your sleep than OSA/UARS, dial wingin' is not likely to accomplish your long term goal.

Hence the need for the sleep log.

I agree with all this. My OSA/UARS is treated while I sleep, but this therapy cannot help me when I am not sleeping. My xPAP therapy has only made my sleep onset insomnia slightly worse.

But I have a more basic question. I do know that I have a lot of fear/anxiety around the issues of sleep. And I have been told why this is by Psychiatrists that have treated me. They assumed that childhood trauma is the cause. But what if I think I may have gotten over that and the real reason may be that my limbic brain is fearful of sleep because of breathing problems? What if I am afraid of choking in my sleep? My husband has seen me choke in my sleep several times and it frightens him. On at least a couple of occasions I remember he had to roll me over and wake me up for fear of something bad happening. That is why I want to really stick it out with xPAP therapy. Another intriguing question is what part bad sleep and breathing problems may have played in my inability to successfully process my childhood trauma and get through it successfully? In other words, could the Psychiatrists have played down the role of sleep quality in this whole thing and played up the idea of childhood trauma being so crippling for me as an adult?