Fractured sleep, Ambien, dial wingin' and other things

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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robysue
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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 2:39 pm

[1.] You have a set wake time, which is good, but the fact that your bedtime is variable due to you waiting until you're "tired enough" is not good. Your body naturally produces melatonin on a nightly basis, which is how your body triggers sleepiness. However, melatonin wears off quickly and if you go to bed too long after this it increases likelyhood of delayed sleep onset. Your body only produces this once a night, and will not produce it again for 24 hours. So, if you have a set bedtime your melatonin production will naturally align with that time frame, and lead to increased chance of falling asleep without use of sleepaides.
When I go to bed before I am sleepy enough (not "tired", but sleepy), as soon as I put the damn mask on, I become more alert and more uncomfortable and much, much more likely to toss and turn for significant periods during the night because I'm fighting the machine and that increases the aerophagia quite a bit. When I go to bed when I am sleepy enough, I can go right to sleep and the wakes are minimal and the aerophagia is not an issue.

The current sleep doc says I have a circadian rhythm problem, and that's certainly believable. The "fix" such as it is, is to try to manage it by keeping the sleep schedule from getting too far out of alignment with what I need to function at work through the use of a light box in the morning and Ambien (as needed) at night. And also being realistic about what a decent sleep schedule is for me: I can live with sleeping from 2:00 to 8:30 on a daily basis without it adversely affecting my life or my job when I'm sleeping decently, and I seem to sleep better if I don't try to push bedtime back too much earlier than 2:00.

And yes, I tried a small dose of melatonin at the doc's suggestion and it didn't work for me---instead of helping stabilize my sleep patterns, it did nothing except trigger more tooth grinding---both at night and during the daytime.
[2.] Time Awareness. The fact that you are able to record the exact time you wake, how long you were awake, etc; is also indicative of poor sleep hygiene. You should have all clocks, if any at all, positioned in a way that you cannot see them easily from bed. If it's easily viewable from bed, you end up looking at the time even when you didn't intend to. When you wake and immediately, whether intentional or inadvertently look at the time it begins to weigh heavier on your mind. This is the number one cause of sleep maintenance issues in the US.
As I said before: I do NOT clock watch. There is not a clock visible from my side of the bed and I have no desire to look at a clock when I wake up. And at this point, I have no alarm clock telling me "WAKE UP NOW" with a screeching noise. I pretty much get up when I'm done sleeping and that happens consistently between 8:00 and 9:00, and is usually pretty close to 8:30AM.

I know when I wake up at night only because the wakes are easy to identify in the Sleepy Head data when I look at it hours (or days) after the fact: Because of my stomach's sensitivity, I routinely turn my machine OFF and back ON (to reduce the pressure back to 6/4) whenever I wake up to realize I'm awake; so these wakes are easily traced in the Sleepy Head data.

My own view is that wakes I see in the Sleepy Head data that I don't remember are wakes that don't really matter that much as long as we're only talking about 2-4 wakes per night. But on some nights that I wake up thinking I've tossed and turned a fair amount? There are usually 5-10 wakes in the data and I'll sometimes remember about 4 or 5 of them. It's those wakes I remember without looking at the clock that I'd like to minimize in terms of both numbers of them and the length of any one of them.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 2:41 pm

You can become upset thinking "I've been up for the last hour"...."I only have 3 hours left until I need to be up for work".
Nope. I don't do this. If I start to get uncomfortable in bed for any reason I get up and go do something relaxing.

The trigger of my restlessness on bad nights is physical discomfort coming from my highly sensitive body overreacting to the physical stimuli coming from the PAP machine: At the beginning of a really bad night, the sensation of air being blown down my upper airway is more than merely irritating; it's down right uncomfortable. The intentional venting from my mask's exhaust vents feels like I'm sleeping with a jet engine when it hits my arms or my chest. When the exhaust flow bounces off the covers and back into my face, both my eyes and lips are miserable---I never much liked sleeping under a fan prior to starting CPAP, and PAP therapy triggers all the things that sleeping with a fan does. Chapped lips and dry eyes are not fun to deal with all year long. I have had to resort to sleeping in my husband's robe so that I can wrap it around my chest twice to keep the exhaust flow from bothering me. I often wrap the robe around my lips and chin to protect the lips from getting chapped by the exhaust flow and I protect my eyes by putting a cloth handkerchief over them; the corners of the hanky are tucked into the mask straps to keep them in place. On a bad night, I have to work hard on hose placement to try and minimize the feeling of air blowing on me as well as the inevitable feeling of air blowing into me. And all of this is worse---much worse---if I try to go to bed at a set bedtime instead of waiting until I am sleepy.

Fortunately not every night is a bad night. On good nights, none of this visceral physical reaction happens when I put the mask on because I'm sleepy enough to not be distracted by it when I go to bed. The vast majority of my nights are neither really hideous or great; they're "so-so" in terms of the quality of my sleep and how I feel in the morning: I don't feel like I've been tossing and turning all night, but I do remember several wakes, most of which are short enough not to really worry me. But I also don't feel as rested as I do on the good nights. I wake up feeling "ok"---not very refreshed, but mostly rested and not particularly tired. But focusing on what I need to get done during the day is not particularly easy. And this was not a problem for me prior to starting CPAP.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 2:45 pm

My advice is simple on this, don't worry about the time, it's not going to help you sleep easier/better to know the time. Even when keeping a sleep journal, you should only be able to denote the time you went to bed and the time you woke for the day. You should only be able to denote how many wake periods you had and what the length of each wake period 'felt' like. [ I went to bed at 10pm and got up at 08:30am. I woke 3 times, with 2 about 5mins long and 1 that felt like an hour long]
I've kept a sleep log for most of the past three years. Right now, I'm on a two month hiatus from the sleep log because writing about my sleep every morning was just making my mornings more miserable and it was not improving my sleep. I'll probably go back to it in a few weeks, however, because it has been a useful tool in the past.

As for worrying about time: Again, I know I sound like a broken record, but I don't worry about the time at all when I'm in bed. As a college professor I have much more control over the hours I work than most people do. I'm on a class schedule that allows me to sleep until 8:30 without any problem. And I pretty much get up around 8:30 every day (seven days a week) without the need for an alarm clock. Hubby will make sure I'm awake if I'm not downstairs by 9:00 or so, but most mornings, I'm up before he starts telling me it's time to get up. My official bedtime has been at 1:30 AM ever since I started the six months of CBT-I back on Dec. 31, 2010. But as part of that CBT-I I was told to not go to bed at 1:30AM if I was not sleepy at that time. I've had that advice reiterated by my current sleep doc, with the additional advice of "Go ahead and take an Ambien between 1:30 and 2:30 if you're not getting sleepy and you want to go to bed."

Occasionally I will get sleepy enough to go to bed before it's 1:30AM. And I'll usually not fight it. But if I wind up in bed much before 1:00AM, there's a high probability that I will have a major wake around 3:00 or 4:00 with a lot of discomfort and trouble getting back to sleep.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by Madalot » Tue Mar 18, 2014 3:08 pm

Robysue,

I read every post you wrote today, but I knew most of it. I'm sorry that you felt the need to waste so much time and energy repeating all this to this person.

{{{{{{{{{Hugs}}}}}}}}}

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by Todzo » Tue Mar 18, 2014 3:25 pm

Probably you are headed for an ASV. The research I have read on the new “pressure and support change” machines indicates that when compared to recently titrated well managed CPAP they cause more arousals. I do not want arousals so I go with EERS[1,2]. Please do discuss with your doctor.

[1] Gilmartin G; McGeehan B; Vigneault K; Daly RW; Manento M; Weiss JW; Thomas RJ. Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS). J Clin Sleep Med 2010;6(6):529-538.

We hypothesized that manipulation of arterial carbon dioxide levels might provide an alternative treatment strategy. Specifically, keeping PCO 2 just over the apnea threshold would be predicted to buffer chemoreflex influences and make the disease more purely obstructive in physiology, thus remaining responsive to positive airway pressure treatment. Central apneas and periodic breathing can be generated when the arterial PCO 2 level falls below that required to stimulate respiration, a setpoint that is unmasked during sleep. 11 Preventing hypocapnia is a powerful stabilizing influence on sleep respiratory control.


[2] David M. Rapoport, M.D. Stabilizing Ventilation in OSAHS with CPAP Emergent Periodic Breathing Through the Use of Dead Space . J Clin Sleep Med. Dec 15, 2010; 6(6): 539–540.

“Ventilatory instability” in OSAHS can be understood as an intermittent “overshoot” of ventilation, thought to be due to two factors. At the end of apnea/hypopnea, there is a simultaneous relief of airway obstruction and a transient increase of ventilatory effort that is part of the arousal. Together, these produce a transient hyperventilation and consequent drop in alveolar and arterial PCO2. Perhaps due to excessive overshoot, mechanical reflexes or “chemosensitivity” to CO2, this transient fall in CO2 initiates repetitive cycles of “central” hypopneas/apneas and hyperventilatory intervals. While usually transient, these cycles of respiratory oscillations appear to persist in a subset of patients despite removal of the obstructive component. Clinical consequences and loss of benefit from CPAP may result as the obstructive cycles are replaced by central ones with similarly disrupted sleep, and poor CPAP compliance and clinical outcomes are not surprising. Many of the patients in the current report had this presentation.

Appreciation of the role that “instability” may play in periodic breathing suggests that blunting respiratory “overshoot” should be helpful—even if the original pathology was predominantly obstructive and is now treated with CPAP. Two approaches have been taken to “stabilizing” ventilation: adaptive servoventilation provides a variable “boost” to ventilation in the form of pressure support, thus damping the expression of varying respiratory drive; adding dead space to the ventilator circuit blunts the effect of hyperventilation on CO2 and thus stabilizes ventilatory drive itself. Either approach effectively provides a “shock absorber” that reduces oscillations of effective ventilatory output and thus prevents the initiation of cycling.
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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 3:45 pm

I'm guessing as well you have other areas in sleep hygiene that should be addressed, and highly recommend you do address them.
The sleep docs who have treated me during the last 3 1/2 years have told me that my sleep hygiene is actually pretty good. The variable bedtime is a problem, but given that it's caused by my waiting to go to bed until I'm sleepy and that I appear to have a real circadian rhythm problem, that's an issue that's a bit hard to address. But all the other standard rules of good sleep hygiene have been part of my lifestyle for years:
  • Bed reserved for sleep and sex? Yep.
  • Watch the caffeine? I've been caffeine free since July 2011.
  • Watch the alcohol? I'm a social drinker who has a beer once or twice a month, usually at supper time, and never within 4 or 5 hours of bed time.
  • Get enough exercise? I walk about 3.5 miles a day at least 5 days a week. I also do yoga. And ski in the winter time.
  • Don't eat too late? Supper, even when it's really late, is usually at least 4-5 hours before bedtime. And I do watch the bedtime snacks since eating too close to PAPing does cause aerophagia problems.
  • Take time to relax before bed? Yep. Although I really need to cut the tv and evening web browsing down. But I do try hard to give myself some real relaxation time without electronic devices before going to bed.
  • Don't worry about job stuff and other things you can't do anything about in bed? Closure issues were a problem for me 3 years ago, but I've worked hard on learning how to bring the day to a close and not worry once I'm in bed. The relaxation time before bedtime is critical for this.
  • Clocks in the bedroom? Nothing's visible from my side of the bed unless I sit up and put my glasses on. And I can't find my glasses without turning the light on. And I hate turning the light on. I don't even look at the clock anymore when I go to bed and I have no desire to look at clock when I wake up in the middle of the night. Half the time I don't look at the clock in the morning when I wake up until after I walk down the stairs and go into the kitchen for breakfast.
  • Start worrying about how little sleep you're getting when you wake up? Nope. First thing that goes through my head when I wake up enough to know that I'm awake is: How's the stomach feeling? And should I turn Kaa (the name for my BiPAP) off and back on to help ease the stomach. Second thing that goes through my head when I'm awake is: Am I too hot or too cold? If so, I address those issues by taking the robe off or pulling more covers on. And most of the time at that point, I'm ready to settle back down and get back to sleep. The brain only gets restless these days if there is physical discomfort OR if I've woken up from a disturbing dream.
  • Wake up at the same time every day, all seven days a week? I consistently wake up on my own without the aid of an alarm at some point between 8:00 and 9:00. And that's all seven days for the week. On the rare occasions I need to be up before 8:00, I will set an alarm clock that's above the headboard and out of sight. I don't like having to wake up earlier than 8:00 though.
  • Know the difference between feeling sleepy and feeling exhausted or tired? Yep. Sleepy is a rather pleasant feeling, involves both my brain and body, and is not stressful; exhaustion is a physical thing that is mentally stressful. I try to go to bed when I'm sleepy.
  • Bedroom dark enough for sleep? To be honest, our bedroom could be darker since it's on the street side of the house. But I don't want black out shades because I rely on that morning light to gently wake me up. Morning sun is more important than eliminating the last bit of street lamp light in the bedroom. (And there's not much street lamp light since our bedroom is higher than the rather dim old-fashioned street lamps on our quiet residential street.)
  • Bedroom quiet enough for sleep? With my severe tinnitus, I really don't like complete silence. And I also need something to mask the sound of my own breathing being magnified by the PAP machine. So I play Gregorian chant music at a very low volume all night long on a set of speakers above the head of the bed. I find them quiet, relaxing, and soothing. Since I don't understand Latin, they all sound alike (in one sense), I don't have an unconscious desire to "stay awake" until this or that chant starts to play. On the other hand there's enough variation in them that they don't sound exactly alike, so they don't become an irritating, repetitive noise.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by Todzo » Tue Mar 18, 2014 3:50 pm

robysue wrote:
I'm guessing as well you have other areas in sleep hygiene that should be addressed, and highly recommend you do address them.
The sleep docs who have treated me during the last 3 1/2 years have told me that my sleep hygiene is actually pretty good. The variable bedtime is a problem, but given that it's caused by my waiting to go to bed until I'm sleepy and that I appear to have a real circadian rhythm problem, that's an issue that's a bit hard to address. But all the other standard rules of good sleep hygiene have been part of my lifestyle for years:
  • Bed reserved for sleep and sex? Yep.
  • Watch the caffeine? I've been caffeine free since July 2011.
  • Watch the alcohol? I'm a social drinker who has a beer once or twice a month, usually at supper time, and never within 4 or 5 hours of bed time.
  • Get enough exercise? I walk about 3.5 miles a day at least 5 days a week. I also do yoga. And ski in the winter time.
  • Don't eat too late? Supper, even when it's really late, is usually at least 4-5 hours before bedtime. And I do watch the bedtime snacks since eating too close to PAPing does cause aerophagia problems.
  • Take time to relax before bed? Yep. Although I really need to cut the tv and evening web browsing down. But I do try hard to give myself some real relaxation time without electronic devices before going to bed.
  • Don't worry about job stuff and other things you can't do anything about in bed? Closure issues were a problem for me 3 years ago, but I've worked hard on learning how to bring the day to a close and not worry once I'm in bed. The relaxation time before bedtime is critical for this.
  • Clocks in the bedroom? Nothing's visible from my side of the bed unless I sit up and put my glasses on. And I can't find my glasses without turning the light on. And I hate turning the light on. I don't even look at the clock anymore when I go to bed and I have no desire to look at clock when I wake up in the middle of the night. Half the time I don't look at the clock in the morning when I wake up until after I walk down the stairs and go into the kitchen for breakfast.
  • Start worrying about how little sleep you're getting when you wake up? Nope. First thing that goes through my head when I wake up enough to know that I'm awake is: How's the stomach feeling? And should I turn Kaa (the name for my BiPAP) off and back on to help ease the stomach. Second thing that goes through my head when I'm awake is: Am I too hot or too cold? If so, I address those issues by taking the robe off or pulling more covers on. And most of the time at that point, I'm ready to settle back down and get back to sleep. The brain only gets restless these days if there is physical discomfort OR if I've woken up from a disturbing dream.
  • Wake up at the same time every day, all seven days a week? I consistently wake up on my own without the aid of an alarm at some point between 8:00 and 9:00. And that's all seven days for the week. On the rare occasions I need to be up before 8:00, I will set an alarm clock that's above the headboard and out of sight. I don't like having to wake up earlier than 8:00 though.
  • Know the difference between feeling sleepy and feeling exhausted or tired? Yep. Sleepy is a rather pleasant feeling, involves both my brain and body, and is not stressful; exhaustion is a physical thing that is mentally stressful. I try to go to bed when I'm sleepy.
  • Bedroom dark enough for sleep? To be honest, our bedroom could be darker since it's on the street side of the house. But I don't want black out shades because I rely on that morning light to gently wake me up. Morning sun is more important than eliminating the last bit of street lamp light in the bedroom. (And there's not much street lamp light since our bedroom is higher than the rather dim old-fashioned street lamps on our quiet residential street.)
  • Bedroom quiet enough for sleep? With my severe tinnitus, I really don't like complete silence. And I also need something to mask the sound of my own breathing being magnified by the PAP machine. So I play Gregorian chant music at a very low volume all night long on a set of speakers above the head of the bed. I find them quiet, relaxing, and soothing. Since I don't understand Latin, they all sound alike (in one sense), I don't have an unconscious desire to "stay awake" until this or that chant starts to play. On the other hand there's enough variation in them that they don't sound exactly alike, so they don't become an irritating, repetitive noise.
I think you are the most diligent patient I have ever met.
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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by zoocrewphoto » Tue Mar 18, 2014 3:58 pm

kaiasgram wrote:
BlackSpinner wrote:From this I gather you have massive reading comprehension issues or couldn't be bothered to read past the first paragraph in the first post.
+1
Additionally, the lack of education/understanding displayed in munkyBeatz's posts makes it disturbing that this person works in a sleep lab:
you have a mild case of OSA, since your pressures are relatively low
Alpha intrustion is simply alpha wave activity that is present during REM sleep
From 2012:
My background, to show I know what I'm talking about, includes 6.5yrs experience as a Registered Polysomnographic Technician and am currently the Technical Director of Operations for a sleep lab in the DFW area of Texas.

I suppose it is nice to have some actual examples of how the professionals really don't have a clue sometimes, and it is up to us to get our therapy working. It's not like the specialists know what it is like to sleep with a cpap machine or even understand the need for different pressures.

He would probably think my mom was fine with her old brick and straight 10 and ahi of 3.4. Never mind the fact that she quit breathing for more than a minute at a time *WITH* the machine. And since she wasn't feeling any improvement, she wasn't using it all night, so who knows how bad she was without it. Getting an auto machine with data that the (new) doctor could see made a huge difference. She feels a lot better, and uses it all night now because she can feel the improvement.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by avi123 » Tue Mar 18, 2014 4:08 pm

Reframe your mindset

Sometimes you need a little extra help to overcome sleepless nights. If trying
the above strategies on your own doesn’t seem to be helping, you might
want to talk to a behavioral sleep medicine specialist or a counselor or psychiatrist
who offers cognitive behavioral therapy for insomnia (CBT-I).
Your primary care doctor may be able to help you find such an expert, or
you can search online for a practitioner near you through the following organizations’
websites: American Academy of Sleep Medicine, the National Sleep
Foundation or the American Psychiatric Association. If you don’t have a computer,
your local librarian should be able to help you find information.
Cognitive behavioral therapy has proved to be a highly effective therapy for
people with insomnia, especially older adults for whom medications might
carry too many risks. People who received CBT-I during clinical trials experienced
greater total sleep time, less time to fall asleep and fewer waking periods during
the night. They were also able to reduce their use of medication. Importantly,
the benefits of this therapy seem to last much longer than the program itself.
During CBT-I, a therapist helps you to learn and implement many of the
strategies discussed in this report. The therapist may also include a cognitive
therapy component, which helps you identify and change unhealthy thought
and behavior patterns revolving around sleep. The therapist can help you deal
with the anxiety and stress that may have developed around your sleep habits
and help you establish healthier, more-realistic expectations.
A typical CBT-I program might start with an introductory educational session
on sleep, followed by sessions that help you re-evaluate and control the stimuli
in your bedroom and focus the time you spend in bed on actually sleeping.
Other sessions might address healthy and unhealthy sleep habits as well as how
to deal with stress and avoid relapsing into poor sleep habits.
Most people in CBT-I are asked to keep a sleep journal as they move through
the program. A sleep journal can help you identify what helps improve your
sleep and what doesn’t. A traditional CBT-I program usually lasts about eight
weeks. In some cases, the therapist may initially combine cognitive behavioral
therapy with medication to help you sleep. As you become better at reducing
stress related to insomnia and other factors and gain better control over your
sleep environment, your therapist can gradually reduce your dosage until you
no longer need medication.


Have you considered seeing a CBT"Shrink"?

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by Todzo » Tue Mar 18, 2014 4:22 pm

A recent study[1] found that beyond the obstruction that CPAP is able to treat there may be nonanatomic features that play an important role in 56% of patients with OSA (I find it interesting that when I look at the research looking into CPAP usability long term objectively I do not find above 60% and often below 50%).

The features that they looked at were:

A. hi respiratory control loop gain (a tendency to loose good control of breathing)
B. low arousal threshold
C. minimal genioglossus (tongue) muscle responsiveness

CPAP tends to exacerbate “A” as the pressure tend to be a plus factor for respiratory control loop gain.

CPAP has, in my opinion, high levels of noise, vibration, fast pressure changes, and initial back pressures upon the start of exhale which all tend to result in excessive arousals due to “B”.

Robysue I believe your problems are physiologically based. You are not crazy, you simply have a nervous system and/or breathing control system which needs help.

I hope you find the help you really need very very soon indeed!!



[1] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC
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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 4:40 pm

More issues specific to yourself need to be evaluated by your sleep physician to ascertain just what is the "big issue" that needs to be addressed.

Lastly, you might consider discussing alternative treatment methods for OSA with your board certified sleep specialist if you believe tolerance to PAP to be your biggest issue.
I have spent the last 3 1/2 years working with (multiple) sleep physicians who are board certified in sleep medicine and they are out of ideas and so am I.

And while the problem started out being tolerance of PAP, tolerance of PAP does not seem to be the continuing cause of my problem.

My sleep problem long ago morphed into some kind of insidious problem where I'm simply not getting very restorative sleep in spite of the following:
  • I can get to sleep quickly (within 10 minutes of going to bed) with the PAP---as long as I'm sleepy enough,
  • I sleep well enough to remember only a few wakes (as in 2-4 remembered wakes) when I wake up in the morning after a typical night (but the SleepyHead data indicates there are many more wakes than I remember),
  • I no longer wake up in serious pain from aerophagia on most nights---as long as I stick with my current tight Auto BiPAP settings,
  • I have a total estimated sleep time of 5 1/2 to 7 1/2 hours on most nights (I've never been one to sleep more than 8 hours unless I'm coming down with the flu or other illness),
  • I wear the mask the entire time I'm asleep every single night,
  • and I have good PAP data in terms of AHI (almost always less than 5.0 and usually less than 2.5) and leak data (total leaks right at the expected leak rate for my mask for most of the night, every single night).
And to be clear on the aerophagia issue: When I use my BiPAP in its current (nonsensical) narrow Auto range with min EPAP = 4, max IPAP = 8, the aerophagia is under control: I don't wake up with a basketball sized rock hard stomach. If I reset the BiPAP to a fixed pressure of 8/5, however, the aerophagia comes back with a vengeance, and everything goes downhill very quickly once the aerophagia comes back. Hence I am someone who does NOT do better on fixed pressure mode.

And to be clear about what the perceived problem with my sleep actually is: I think I am getting between 5 1/2 and 7 1/2 hours of sleep every night and I remember only 2-4 wakes on most nights, so I feel as though my sleep is relatively continuous most nights. But more often than not, I wake up feeling unrefreshed and not fully rested. And more often than not, my energy level is not enough to get me through my day and brain fog is a serious problem.

And that's just as true for the nights where I think I got 7 to 7 1/2 hours of sleep and don't remember more than 2 or 3 wakes during the night as it is for the nights where I think I only got 5 hours of sleep and remember 3 or 4 wakes. And on the nights where I remember more than 4 wakes, or I remember a restless period or two, I wake up feeling pretty wasted and have very little energy the whole next day.

Last summer (2013) my current sleep doc was puzzled enough about my on-going and (at that time) worsening sleep problems that he ordered another round of in-lab sleep tests. The results were not particularly enlightening:
  • The PAP-less night confirmed that I do have OSA (although the AHI on the PAP-less night was only 15.1 this time instead of 23.1, like was on my original diagnostic study back in Aug 2010.)
  • The titration night confirmed my OSA is well controlled with BiPAP set with IPAP = 8, EPAP =5 (and the doc didn't recommend changing the tight Auto BiPAP range to a fixed pressure setting).
  • The sleep efficiency on both nights was pretty miserable, and the total sleep time with BiPAP was less than the total sleep time without PAP.
  • On both nights my answer to the question, "How much sleep did you get?" in the post wake survey indicated that I thought I got about 30 minutes more sleep than the EEG data says I got. (I'm that rare insomniac who gets less sleep than I think I get; that's been clear on all six of my sleep studies.)
  • There were far too many spontaneous arousals and wakes on both nights.
  • There were no PLMD problems on either night.
  • The initial latency to sleep was actually pretty good, particular considering that "Lights Out" was two hours before my usual bedtime, but on both nights, I woke up within 20-25 minutes of sleep onset and started tossing and turning and had serious problems getting back to sleep that lasted for a couple of hours according to the sleep data. (On both nights I was not aware of the fact that I had fallen asleep for 20 minutes at the beginning of the night; I thought it took me 1-2 hours to get to sleep on both nights.) On the titration night, I eventually gave up trying to get (back) to sleep and called the tech and asked if I could please read for a while. I read for about 60 minutes (according to the sleep study data, there was no clock in the room) before feeling sleepy enough to try to go to sleep again.
  • When I sleep without a PAP, I wake up with significant hand and foot pain that is not there when I sleep with a PAP. (That's from my own notes about the experience.)
Since the data from the in-lab sleep tests showed a large number of spontaneous arousals (and nothing else unusual) and my guesstimate of how much sleep I got was more than the EEG data indicated I got on the titration study, the sleep doc ordered an Acti-graph test where I wore an Acti-graph bracelet for a ten day period. The Acti-graph data was analyzed to determine how many likely awakenings I had each night in my own bed during the study period. My sleep log at the time indicated that I was remembering about 3-4 wakes each night; SleepyHead was showing that I was turning the machine off and on about 5-6 times a night. The Acti-graph data showed I was having an average of 9 wakes per night with an average of length of about 5.5 minutes. So again, the data indicated that I was waking up more frequently than I thought I was waking up at night back last August. And as far as I know, there's no reason to think that situation has changed much since then.

So at this point: The doc and I both know the problem is that I have an excessive number of spontaneous awakenings and arousals at night, and I remember only about half of the wakes in the morning. And the sleep doc's idea is that all the spontaneous wakes and arousals are what's causing my daytime problems. But because there is no identifiable cause of those wakes and because I don't remember half or more of the wakes, there's not much that can be done about them using the usual CBT-I tools, including tightening up on my already pretty good sleep hygiene, which I discussed in the previous reply.

In the previous War on Insomnia the only thing that really seemed to help reduce the excessive number of spontaneous arousals was a severely sleep restricted schedule of no more than 6 hours in bed at night. When I started the CBT-I on Dec. 31, 2010, wake up time was defined to be 7:30 and bedtime was 1:30 or whenever I got sleepy---whichever came LATER. I did that for over a year before slowly allowing myself to increase time in bed by moving wake up time from 7:30AM to 8:30AM. (I tried moving bedtime back towards 1:00AM, but every time I tried, the sleep fragmentation became worse.)

So the Ambien is a crutch right now---that's the language the current sleep doc has used. He doesn't expect Ambien to fix my problems and neither do I, but it can help them from getting substantially worse until either he or I has some other idea for tackling what's going on. The sleep doc also has told me that I do have reasonable expectations about what a decent night's sleep for me should/could look like: All I want is to be able to go to bed between 1:00 and 2:00, sleep reasonably well with no more than 2-4 short wakes that I either don't remember or don't remember clearly, and wake up around 8:30 or 9:00 feeling rested and reasonably refreshed and in no pain. And I'd like this pattern to describe most of my nights--as in 4-6 nights every week instead of describing 2-3 nights a week at most.

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 4:46 pm

Todzo wrote:Probably you are headed for an ASV. The research I have read on the new “pressure and support change” machines indicates that when compared to recently titrated well managed CPAP they cause more arousals. I do not want arousals so I go with EERS[1,2]. Please do discuss with your doctor.
I don't see how a machine that has even LARGER swings between IPAP and EPAP would do anything to help me. I don't have central apnea or complex sleep apnea and I don't have any reason to believe that my problem has anything to do with EERS.

I do think that ASV machines are tougher to get used to because of the potentially large swings in pressure. And with my aerophagia, I have no desire to find out if larger swings in pressure would increase the aerophagia.

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Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 4:52 pm

Todzo wrote: I think you are the most diligent patient I have ever met.
The First War on Insomnia was (and remains) one of the most difficult undertakings I have ever done in my life. The discipline involved was tremendous and can only be compared to what I needed to finish my PhD dissertation in mathematics.

Doctors tend to underestimate what it really takes to comply with their orders. I've been told by my new PCP that I'm one of the most compliant patients he's run into and that he and most docs don't expect the average patient to do more than 50% of what they're told to do.

But it takes a toll after a while. And I'm tired of fighting the battle night after night. I want to be lazy and do things that are bad for my sleep hygiene. That's why bedtime is so variable: It's the one slip that is "tolerable" in my too disciplined mind---tolerable in the sense of being justifiable since there are two competing "sleep hygiene rules" that can't both be followed. I'd rather go to bed when I'm good and sleepy instead of trying to maintain a regular bedtime.

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Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 5:00 pm

avi123 wrote:Reframe your mindset

Sometimes you need a little extra help to overcome sleepless nights. If trying
the above strategies on your own doesn’t seem to be helping, you might
want to talk to a behavioral sleep medicine specialist or a counselor or psychiatrist
who offers cognitive behavioral therapy for insomnia (CBT-I).

...

Have you considered seeing a CBT"Shrink"?
Been there, done that, and have the T-shirt.

I spent six months doing official CBT-I. It was one of the hardest things I've ever done. It was worth it. I would NOT be sleeping as well as I am right now if I had not done the CBT-I.

But at the end of the six months, when I was unable to successfully start increasing my total time in bed by moving bedtime back from 1:30 AND the First War on Migraines was interfering with the progress in the CBT-I due to side affects of migraine meds, I was fired as a patient by the PA who was doing an excellent job with the CBT-I.

I have a list of potential CBT-I therapists from the current sleep doc. I have not yet found the strength to face climbing back on that particular horse just yet, in part because I know that I already do all the easy stuff. And the hard stuff? I'm just not ready to go back to a mandatory six hour time in bed window right now.

The problem is not that I feel my nights are sleepless. The problem is that even though I fall asleep quickly enough and remember very few wakes in the morning, the sleep is just plain nonrestorative, most likely because I have a whole lot more wakes than I actually remember having---given what the data from multiple sleep studies and my own machine seems to say about the number of wakes I experience. And those wakes are not respiratory related or PLMD wakes according to the sleep test data.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

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Re: Fractured sleep, Ambien, dial wingin' and other things

Post by robysue » Tue Mar 18, 2014 5:15 pm

Madalot wrote:Robysue,

I read every post you wrote today, but I knew most of it. I'm sorry that you felt the need to waste so much time and energy repeating all this to this person.

{{{{{{{{{Hugs}}}}}}}}}
Yes, I've wasted a lot of time on this today. Probably way too much.

But there was something in munkyBeatz's post that just plain struck a raw nerve. S/he basically said all the things that were told to me way back when by Sleep Doc #1 and Sleep Doc #2 some 3 1/2 years ago.

Telling me to work on my sleep hygiene was the straw that broke the camel's back. I've worked too long and too hard to be told that working on my sleep hygiene will magically fix my problems. It's not that I don't believe in sleep hygiene---I do. Anybody who's bothered to read my posts knows that. If it were not for some really high quality sleep hygiene in my part, I'd be sleeping even worse than I currently am.

And all the comments about "don't watch the clock" also struck a sore nerve. I've not looked at a clock in years and years---as in before this whole CPAP adventure began. And again, if munkyBeatz had bothered to look at any of my posts or followed the link about Taming the CPAP-Induced Insomnia Monster, s/he would have know that watching the clock is NOT the cause of my ongoing problems.

But more than anything else, it was the cockiness of the tone: Here's all you need to do and I know this is all you need to do because I've been a sleep tech/rt/whatever for [n]n[/b] years .... As if none of my doctors or I would have thought of any of this in the last 3 1/2 years.

I know that munkyBeatz meant well. But I can't help but think a better approach would have been to have asked me some questions about what had been tried and how well it worked rather than jumping in with stock answers to questions I was not asking. It's striking to compare how munkyBeatz jumped in with "all the answers" to my problems with how sludge jumps in by asking people with sticky problems probing questions before telling them what he thinks they ought to do.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5