Fractured sleep, Ambien, dial wingin' and other things

[Todzo]

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.

ASV paces the volumes of air used and so "blunts" (see the references in the previous posts by me) the hypocapnic and therefor brain starving and therefor air control altering swings.

Please bring this up with your doctor.

And please remember that all of your sleep studies (full PSG) combined over the years ammount to absolutly ZERO nights looking at how you sleep in your own home in your own bed. You really do not know what you do or do not have in fact.

I do hope you do find what you really need soon.

[zoocrewphoto]

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.

I'm totally with you on this one. I have been told many times to have a regular bedtime, but I have found in my own experience that going to bed before I am ready results in me being grumpy and stressed, and I tend to stay awake longer than if I had waited until I was tired and ready. So, I wait until I am tired, even if that mean I will have a short night. In cases where I am sharing a hotel room, I will read in bed or listen to music so that I am not disturbing my roommate, but I come prepared with something to do. That said, I am much better in hotel rooms and can fall asleep pretty fast now, even at an earlier time. That is something that I cannot do at home, and it puzzles me.

When I went to my sleep doctor in April of 2012 to get started with cpap, I was really worried that I would have a tough time getting treatment for sleep apnea without unwanted treatment for my sleep patterns. When I filled out the stack of forms before the sleep study, I added a note that my work schedule is based on my sleep schedule, not the other way around. I have accepted being a severe night owl, and I have no interest in changing that. I am hear to improve my sleep apnea problem.

I was shocked when he asked me if I knew I had DSPS (Delayed Sleep Phase Syndrome). He asked if my sleep pattern was working for me (yes) and then let it drop. He made no attempt to change my sleep pattern, thankfully. With my followup, he did suggest that I work on getting longer sleep, but he didn't care which end I added it to.

[robysue]

I was shocked when he asked me if I knew I had DSPS (Delayed Sleep Phase Syndrome). He asked if my sleep pattern was working for me (yes) and then let it drop. He made no attempt to change my sleep pattern, thankfully. With my followup, he did suggest that I work on getting longer sleep, but he didn't care which end I added it to.

Yes, my sleep doc's attitude towards my DSPS is that it's a problem only as much as it interferes with my life. That's why the goal is to try to keep my sleep schedule stable at 2:00ish to 8:30ish rather than somehow magically move it back to a "normal" 11:30ish to 6:30ish, like it had to be when I still had kids in the house to get up so they could get to school by the ridiculous hour of 7:30 on many mornings. The 2:00ish to 8:30ish schedule works fine for my job as a college professor, but letting it drift to 3:00ish-9:30ish or 4:00ish-10:30ish (like it would like to) just won't work for me.

[Sludge]

I have alpha wave intrusion.......which means just as you're reaching a lower stage of sleep, your brain wakes you up. There's a med for this, but I don't think it has good results. My doc really didn't want to put me on it.

Alpha intrustion is simply alpha wave activity that is present during REM sleep periods, and is usually indicative of pain. Many arthritic and pain management patients exhibit this. There's not a specific drug that helps to reduce alpha intrusion, as it's generally present as a result of pain. It can also be present in certain patients taking certain medications for depression/bipolarism/etc.

Actually, alpha intrusion is more closely associated with slow wave sleep (consequently, it is commonly referred to as "alpha-delta pattern").

Some folks are using Xyrem to treat alpha intrusion, but that's a pretty big hammer.

Then the F/U question would be:

Why would anyone want to treat alpha intrusion anyway?

I mean, it's just like, "there".

One would treat the causes, or suspected problems associated with it, not "it".

Then, one could start drug wingin':

Pregabalin
Gabapentin
Baclofen
Cyclobenzaprine
TCAs
Amitriptyline
Venlafaxine
Duloxetine
Milnacipran

And then GL with that MGR.

[Sludge]

... sludge jumps in by asking people with sticky problems probing questions ...

I feel compelled to ask a probing question now.

Let's see...

OK, got one (or so)...

• One of (or perhaps "the") reason you continue the xPAP journey is the improvement in arm and leg pain.
• Peripheral neuropathy appears to be a fairly well accepted possible complication of OSA.
• However, PN in those cases is attributed to oxygen desaturation.
• That said, sleep disruption might contribute to PN.
• In a review of some of your posts, I cannot find a single desaturation.
• So here's the question(s): What exactly are you trying to fix with xPAP? If it is offered that sleep architecture, total sleep time, sleep stage percentages, arousals from any cause and sleep efficiency are no better (or perhaps worse) with therapy, then can it really be said that the less tangible benefits (longevity)(that's about it) exist?
• In a plan that would include modifications, have you ever considered an objective trial of Provent (lab version with HST)? Removing any chance of aerophagia and relative invasiveness of xPAP might offer huge gains, and with Provent you should have a pressure buffer even beyond what you typically use now.
• If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba?

[robysue]

In a review of some of your posts, I cannot find a single desaturation.

You're right: Not a single official O2 desat has been scored on any of the sleep tests. And min O2 has been at or above 90% on all sleep tests, including both diagnostic tests.

So here's the question(s): What exactly are you trying to fix with xPAP? If it is offered that sleep architecture, total sleep time, sleep stage percentages, arousals from any cause and sleep efficiency are no better (or perhaps worse) with therapy, then can it really be said that the less tangible benefits (longevity)(that's about it) exist?

You asked this pertinent question three years ago when you were masquerading as NotMuffy: See viewtopic.php?f=1&t=62755&st=0&sk=t&sd#p586591. It was relevant then, and it's relevant now.

Back then my answer was a long and winding post at viewtopic.php?f=1&t=62755&st=0&sk=t&sd#p586747, but the start of my reply was:

OK, I have a question (or two):

What exactly do you hope to accomplish?

• Live longer
• Sleep better
• Feel better

Do you think AHI 0.0 will accomplish that goal(s)?

Well that is the $64,000 question, isn't it?

Right now I'd say that the only reason I keep paping is that I do feel better with PAP than without it. The three papless nights in the last year lead to substantial hand and foot pain in the morning and no increase in terms of daytime functioning, although there was less daytime sleepyiness on those days.

Based on those three data points, I can't seem to sleep well without the PAP: I wake up feeling nonrefreshed and unrested; and I feel really bad physically the next day (in terms of both pain and fatigue), although daytime sleepiness is not huge issue.

With PAP, I wake up feeling decently rested on most days, but not very well rested on others. I seldom feel genuinely refreshed, however. I occasionally have really good days, like yesterday, where I wake up feeling rested and refreshed. They are not as numerous as I'd like however. On almost all days, I feel pretty decent physically in terms of pain and fatigue, but the daytime sleepiness is much much greater with PAP than without it.

So right now, my goals with PAP are:

1. wake up without the hand and foot pain
2. wake up feeling rested and refreshed
3. feel physically well during the day in terms of being pain-free and not too fatigued
4. feel mentally well during the day in terms of being NOT sleepy and NOT cranky.

On almost every day, goals 1 and 3 are met.
On most days, goal 2 is partially met. I'd like some improvement here, though.
On most days, goal 4 is not very well met, although this is NOT as bad as it was back during 2010 and 2011. I'd really like some improvement on goal 4, and I suspect the "solution" is to get more actual sleep with fewer wakes (I'm not naive enough to believe I'll ever get to no wakes, nor do I believe that's necessary.)

In a plan that would include modifications, have you ever considered an objective trial of Provent (lab version with HST)? Removing any chance of aerophagia and relative invasiveness of xPAP might offer huge gains, and with Provent you should have a pressure buffer even beyond what you typically use now.

Have not considered this, but perhaps I should.

If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba? [/list]

These have not been suggested by any of the sleep docs. I know it's a naive question: But how would they enhance or improve my current sleep in a way the Ambien does not?

[Pugsy]

Hey Sludge,

Low dose trip...are you talking about low dose of something like amitriptyline? Like the 10 mg dose?

[echo]

Robysue, i know that the existence of "adrenal fatigue" is controversial, but it might still be worth looking into (since you seem to have run out of ideas!). A saliva cortisol test might be informative - perhaps you have high nighttime cortisol that's contributing to the wakeups, and low morning which contributes to the morning fatigue. Just an idea. As far as DSPS, most people would find it impossible to wake up at 8-9 am so I'm not sure that fits your profile.

[echo]

Ah nevermind, just re-read a couple of posts and you *do* have DSPS. How many of your spontaneous arousals occur during the first half of the night, presumably the times that your body typically *doesn't* want to be asleep?

[robysue]

Ah nevermind, just re-read a couple of posts and you *do* have DSPS. How many of your spontaneous arousals occur during the first half of the night, presumably the times that your body typically *doesn't* want to be asleep?

Depends on when I go to bed.

If I go to bed late, the wakes are evenly spread throughout the night when you look at trends of data versus any one particular night.

If I go to bed early and don't take the Ambien and look at trending data, there are a few more wakes earlier in the night. Or those wakes are more problematic in terms of getting back to sleep (like the sleep tests this summer).

If I go to bed early and do take Ambien, that pushes the wakes later into the night, after some of the Ambien has likely started to wear off.

[Sludge]

If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba? [/list]

These have not been suggested by any of the sleep docs. I know it's a naive question: But how would they enhance or improve my current sleep in a way the Ambien does not?

But that's not a naive question at all.

If you want a naive question, here's a naive question.

What exactly is it that you're trying to treat?

Because while these 5000 posts about insomnia have certainly been very informative, if you really have DSPS, which sounds like you do:

The 2:00ish to 8:30ish schedule works fine for my job as a college professor, but letting it drift to 3:00ish-9:30ish or 4:00ish-10:30ish (like it would like to) just won't work for me.

however, I'm questioning the

2:00ish to 8:30ish schedule works fine

because it seems like it doesn't; further since

Psychophysiological insomnia must be ruled out as a cause for the sleep onset insomnia characteristic of DSPD.

http://www.aasmnet.org/resources/practi ... hythm2.pdf

which means sleep onset insomnia/DSPS is an either/or diagnosis; thus

...my sleep doc's attitude towards my DSPS is that it's a problem only as much as it interferes with my life.

if you choose to have DSPS, and we're back here, now it's a problem; so to treat it, you have to let it

drift to 3:00ish-9:30ish or 4:00ish-10:30ish

because DSPSers have normal sleep, just later.

Consequently, it seems to me that all this effort to treat insomnia is resistant if what you really need to do is allow the DSPS to settle where it wants to be, or devote your attack to it (the DSPS) instead of insomnia (i.e., you can't fix what you don't have).

Concludingly, perhaps a better approach than "dial wingin'" might be "sleep wingin'"-- free-wheeling to find your true sleep block. If you end up sleeping like a rock from 0400 to 1030, then Book 'em DanL and That's All She Wrote.

[Sludge]

Low dose trip...are you talking about low dose of something like amitriptyline? Like the 10 mg dose?

But how would they enhance or improve my current sleep in a way the Ambien does not?

If the issue is some sort of peripheral neuropathy (which responds to xPAP)(but makes no sense to me for reasons above), then a drug wingin' approach might include something from the list previously noted-- sleep enhancer plus NP Rx. So you got your trip, your gaba (which enhances SWS), your traz...

I'm leery of Trazadone since I have some known genetic anomalies that affect the metabolization of many medicines including Trazadone.

OK, maybe not traz...

...OTOH:

Conclusion: There is insufficient evidence to assess the safety and efficacy of hypnotic medication in the treatment of DSPD.

[49er]

If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba? [/list]

These have not been suggested by any of the sleep docs. I know it's a naive question: But how would they enhance or improve my current sleep in a way the Ambien does not?

But that's not a naive question at all.

If you want a naive question, here's a naive question.

What exactly is it that you're trying to treat?

Because while these 5000 posts about insomnia have certainly been very informative, if you really have DSPS, which sounds like you do:

The 2:00ish to 8:30ish schedule works fine for my job as a college professor, but letting it drift to 3:00ish-9:30ish or 4:00ish-10:30ish (like it would like to) just won't work for me.

however, I'm questioning the

2:00ish to 8:30ish schedule works fine

because it seems like it doesn't; further since

Psychophysiological insomnia must be ruled out as a cause for the sleep onset insomnia characteristic of DSPD.

http://www.aasmnet.org/resources/practi ... hythm2.pdf

which means sleep onset insomnia/DSPS is an either/or diagnosis; thus

...my sleep doc's attitude towards my DSPS is that it's a problem only as much as it interferes with my life.

if you choose to have DSPS, and we're back here, now it's a problem; so to treat it, you have to let it

drift to 3:00ish-9:30ish or 4:00ish-10:30ish

because DSPSers have normal sleep, just later.

Consequently, it seems to me that all this effort to treat insomnia is resistant if what you really need to do is allow the DSPS to settle where it wants to be, or devote your attack to it (the DSPS) instead of insomnia (i.e., you can't fix what you don't have).

Concludingly, perhaps a better approach than "dial wingin'" might be "sleep wingin'"-- free-wheeling to find your true sleep block. If you end up sleeping like a rock from 0400 to 1030, then Book 'em DanL and That's All She Wrote.

Great post Sludge as I was wondering the same things but was unable to articulate it as well as you have. The only additional points I would make is do I assume Roby Sue, you don't want to go to bed at the times that Sludge suggests because of your current course schedule? Could that be adjusted in the future to accommodate what Sludge is suggesting?

49er

[avi123]

... sludge jumps in by asking people with sticky problems probing questions ...

I feel compelled to ask a probing question now.

Let's see...

OK, got one (or so)...

• One of (or perhaps "the") reason you continue the xPAP journey is the improvement in arm and leg pain.
• Peripheral neuropathy appears to be a fairly well accepted possible complication of OSA.
• However, PN in those cases is attributed to oxygen desaturation.
• That said, sleep disruption might contribute to PN.
  [/color]
• In a review of some of your posts, I cannot find a single desaturation.
• So here's the question(s): What exactly are you trying to fix with xPAP? If it is offered that sleep architecture, total sleep time, sleep stage percentages, arousals from any cause and sleep efficiency are no better (or perhaps worse) with therapy, then can it really be said that the less tangible benefits (longevity)(that's about it) exist?
• In a plan that would include modifications, have you ever considered an objective trial of Provent (lab version with HST)? Removing any chance of aerophagia and relative invasiveness of xPAP might offer huge gains, and with Provent you should have a pressure buffer even beyond what you typically use now.
• If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba?

[*]Peripheral neuropathy appears to be a fairly well accepted possible complication of OSA.
[*]However, PN in those cases is attributed to oxygen desaturation.
[*]That said, sleep disruption might contribute to PN.

Comments,

It seems to be lots of guessing, I suffer from PN in the soles of my feet and none of the above apply to my case. .

Roby Sue's leg and hand pain could be neurogenic, i.e. originating from the spine.

[robysue]

If you're stuck with 5-6 hours of sleep (not bedtime)(holding off on fiddling with DSPS for the moment), how about enhancing existing sleep with low-dose trip or gaba? [/list]

These have not been suggested by any of the sleep docs. I know it's a naive question: But how would they enhance or improve my current sleep in a way the Ambien does not?

But that's not a naive question at all.

If you want a naive question, here's a naive question.

What exactly is it that you're trying to treat?

Because while these 5000 posts about insomnia have certainly been very informative, if you really have DSPS, which sounds like you do:

The 2:00ish to 8:30ish schedule works fine for my job as a college professor, but letting it drift to 3:00ish-9:30ish or 4:00ish-10:30ish (like it would like to) just won't work for me.

however, I'm questioning the

2:00ish to 8:30ish schedule works fine

because it seems like it doesn't; further since

The sleep schedule works "fine" in terms of the requirements of my day job: If I get up by 8:30 or so, I can get to my first class well enough prepared to teach it. And if I'm in bed by around 2:00ish and get decent enough sleep, I'll have enough energy (most of the time) to get through my "day", which doesn't end until 9:00pm on Mondays and Wednesdays due to an evening class.

Whether the sleep schedule works "fine" for my body is a whole different question, and the answer is "not as well as sleeping from 3:30ish to 10:00ish would. But sleeping until 10 just won't work with the job requirements.

Psychophysiological insomnia must be ruled out as a cause for the sleep onset insomnia characteristic of DSPD.

http://www.aasmnet.org/resources/practi ... hythm2.pdf

which means sleep onset insomnia/DSPS is an either/or diagnosis; thus

...my sleep doc's attitude towards my DSPS is that it's a problem only as much as it interferes with my life.

if you choose to have DSPS, and we're back here, now it's a problem; so to treat it, you have to let it

drift to 3:00ish-9:30ish or 4:00ish-10:30ish

because DSPSers have normal sleep, just later.

Consequently, it seems to me that all this effort to treat insomnia is resistant if what you really need to do is allow the DSPS to settle where it wants to be, or devote your attack to it (the DSPS) instead of insomnia (i.e., you can't fix what you don't have).

Ok---We'll quit calling my problem insomnia. Particularly since I've now had the extremely rare occasion of two exceptionally good night's sleep in a row.

And I'm actually willing to say that because on the average nights I don't feel like insomnia is hideous monster it was back in 2010-2011. But still, the middle of the night wakes do catch up with me once there are enough of them or if they involve one or more long, restless periods:

I feel at least halfway decent during the daytime as long as I remember no more than 2-3 wakes, there are no more than 4-5 wakes that show up as OFF/ON cycles in the SleepyHead data, and there's no 20+ minute long restless period during the night. But if I remember 4 or more wakes or if the SleepyHead data shows 6 or more wakes or if there's one or more long restless periods, I feel pretty wiped and cranky the next day.

As I said before: The last two nights have been exceptionally good nights for me in terms of sleep and how I have felt during the day (so far for today).

And they've been good on all the (subjective) things that seem to matter: I felt rested and (somewhat) refreshed on waking and woke up pain free. Yesterday the energy levels were fine all day long, and the brain fog was minimal. (We still have to see about today, but so far, so good.)

They've also been good on the objective data: Both the number of wakes that I remember and the number of wakes that show up as Off/On cycles in SleepyHead that I don't remember are way down these last two night; sleep latency is short enough so the BiPAP doesn't cause discomfort at the beginning of the night; sleep efficiency is up; and the AHI is back down to below 1.0* (Yesterday, I did not have a chance to even think about looking at the data until late evening, so I was most definitely not reacting to the data in terms of how I felt.)

*Note: I can't tell any real difference between how I feel after a night with a 2.5 AHI vs. a near 0.0 AHI, and trying to keep the AHI below 1.0 is NOT one of my goals. But I do feel worse (mainly pain) when the AHI > 4.0, and so I'd like to try to keep the AHI below 3.0 consistently. (Days following nights with AHIs between 2.5 and 3.5 are inconsistent: Sometimes I feel and function just fine, and sometimes I don't.)

Concludingly, perhaps a better approach than "dial wingin'" might be "sleep wingin'"-- free-wheeling to find your true sleep block. If you end up sleeping like a rock from 0400 to 1030, then Book 'em DanL and That's All She Wrote.

Once summer comes I may just do this (again). But once the Fall semester starts, I really do need to wake up by 8:30AM. So is it better to do the "sleep wingin" this summer or not?