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Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
sleeplover69, while it may seem that ASV is a "better" CPAP replacement because it's costlier it's not really the case, ASV tries to make you breath the way it wants to and if you can do without ASV the better. The AirCurve 10 ASV can function as a auto bilevel or APAP but it is costly.
OTOH a bi-level in spontaneous breathing mode can give you even more pressure support which may be very nice. If you can buy it out of pocket it would be interesting to see how waveforms change with PS=4 or PS=5. If not, your flows are better with EPR=3 so I'm not sure that's really required and second you should give the EPR=3 with tighter range or fixed pressure settings some more time for your body and habits to adjust.
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Oh, my god. Ironically this thread is making me want to stay up to reply to everyone in detail. Sorry for the long post, I’m sleep-deprived wired.

Greenbean, I hate high functioning early-risers whom society caters to. They’re evil. Society then decides to screw me and my ADHD brokebrain with computer screens and blue light. It’s evil.

I found this: www. sciencedirect.com/science/article/pii/S009286741730346X
A dominant coding variation in core circadian clock gene CRY1 is associated with DSPD. The allele has a frequency of up to 0.6%. No difference in sleep patterns between hetero- and homozygous carriers of the allele.

“A subset of carriers reported a pattern of fragmented sleep consisting of brief sleep periods early in the night and extended naps during the day.” This was me as a kid.

There was a very strong association between CRY1 allele status and sleep behavior in the reverse-phenotyped families and the original pro-band kindred (Fisher’s exact p < 0.0001, odds ratio = 1928, 95% confidence interval) (I’m pretending to know what this means)

So part of it really is intractable, but how much of it is? You can’t set SRT times to something earlier at night to make it work for DSPD?
The four hours then awakening. I don’t know if that coincides with the hypnogram. My awakenings tend to be during or shortly after dreams. You and your sister might get something out of the book that was recommended by yrnkrn.
I forgot to ask if you’ve had an ENT look at your airway? I was told it’s rare to find an ENT that works with SDB up here where I live. What kind of cruel timeline allows for a country with the best doctors in the world not to have universal healthcare.
That’s a great idea sending dental impressions to the most erudite surgeons whom I could find.
No, my research is harebrained and very unthorough. “Friends” -- I have to research the meaning of this word.
I hope you’ll decide to get started with your own thread. You deserve so much better.

Sheepless, thank you so much for your post. Like, who deserves to suffer like us, right? Most people don’t. (THERE ARE SOME PEOPLE) But seriously, is it such a tremendous relief and moral support to connect with others going through the same thing. My heart goes out to you, too. There’s no doubt in my mind that there are many more like us out there lurking this thread and people who are going through the same hell who have yet to articulate their problems to understanding ears or connect to a network of similar sufferers. A thread or section for support and commiseration for our phenotype is a stellar idea.

I overheard a convo in a grocery store recently. Someone was complaining about some chronic illness and the other person asked why didn’t they just go to the doctors. The reason? They hate doctors. That person was me today. It was literally a waste of time. I can’t imagine how worse the experience with insurance would be. Were you recommended to try an ASV? It was actually Spy Car’s ASV thread that inspired me to start my own and led me to scouring other long threads. But I just now read that bilevel may be more appropriate for me. In any case, if it doesn’t shake out you got a super cool machine with market demand here that can work also as a bilevel. Fingers crossed though, your first day does sound promising. I’m really eager to hear how it goes for you and I’m super hopeful. Please keep us updated on your progress here.

Re: CBTI. It always feels like you’re left to hang to dry whenever doctors or other people suggest it to you. It feels almost accusatory, that your problem is all in your head. There could always be an aspect of that, fine. Or maybe it is all in our heads and a matter of an interplay between having a restricted anatomy and one’s unique sensitivities to it as better read posters have said. The question of etiology is tormenting enough. If the problem is medical, would CBT reprogram those sensitivities anyway to eliminate the arousals? What are the risks if it doesn't?

Sleepyrider & yrnkrn: Thanks for all the guidance so far. I really am grateful. I can’t be more grateful enough alone from the morale boost. Thank you, everyone, really. I thought I was taking shallower breaths with EPR to 3, but my 95% tidal volume was actually a little higher. I was awakening like before so I was disheartened. I’ll report back to see how 8-cm fixed / EPR 3 will go. I’ll also ask to trial a bi-level once I’m done with the For Her.
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
You will never persuade your doctor to allow it, but you probably need higher pressure support to fully treat your inspiratory flow limitations, and as you add pressure support for that, central apnea may increase, which is where ASV comes in. This graph below in particular looks so painful. (hint: you can right click on the left margin of the Flow Rate graph and add a "dashed line" at zero) What we see here is a struggle to inhale. Flow starts and stops and eventually you relax and exhale, then the next flow limited inhale begins again. Note that everything above zero is inhale, and everything below is exhale. Using the zero line helps with interpretation. I do think that if your doctor is disinterested in your issues, you need to find one that enjoys the challenge and will work with you.

[Image: HGAhXJ2.png]
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
I couldn't possibly agree more...if a physician is looking only to the "treated" AHI number, and is then indifferent to everything else you think might be wrong about your treatment, you should probably start knocking on doors.  You owe him/her nothing but an example of integrity....yours.  You'll find a more helpful orientation in a primary care giver.
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Pain is all I know these days.

The sleep doctor - Maybe he's just swamped with an overwhelming patient load, but the dismissiveness and the utter disinterest to grok my chronic complaints were unacceptable. Yeah, he's just a bad doctor. Apparently I just read that he's also some people's GP, too. Uhhh. Funny thing is there were two other sleep physicians at the same practice who had less bad but similarly unhelpful orientations. My GP is just as bad.

8cm fixed + EPR 3 didn't work out for me. I tried it for a night and a half. On the second night I had very fractured sleep with multiple nightmares and a vivid one in which I was choking to death and woke up grasping for air. The CAs were higher on the nights with fixed pressure, too. I switched back to APAP that night and it felt better.

8-12cm + EPR 3 seems to work better and have better numbers, but I am seeing limited improvement with the awakenings and the unreasonable amount of fatigue that I have.

I'm back on my S9 because the For Her started raining out with its basic hose.

 [Image: ChqsTGE.png]

First night with 8 cm fixed + EPR 3. Most likely didn't sleep for 5 hours straight without any awakenings.

[Image: LYvR32p.png]

Round but flat

[Image: TI3jMYK.png]

Some weirdness followed by a cluster of hypopnea-like breaths before the RERA flag. Same thing happened the second night with 8cm fixed pressure.

[Image: RgDc2Bc.png]

How long some of my CAs last.

[Image: QGYezAe.png]


[Image: 55pbsC0.png]

Some awakenings were due to being hungry, cold, and having some IBS to deal with. The pressure settings sure didn't help though.

[Image: 0skyEmn.png]

Wow, only centrals and I don't remember awakening before the break at 5h38m, so maybe an improvement? Last few hours after the prolonged break were really fragmented though as always. I actually felt almost OK until I hit the gym at which point my energy level just fell off a cliff. The elliptical machine auto-stopped five times due to inactivity as I was trying to fight through the absurd fatigue just to get some light exercise in. I finally gave up the sixth time it shut off. I think how I perform at the gym is the real testament to how well I'd slept the night before. Lately it's declined to a point where I'm only able to do slow walking on the treadmill. On the bright side, at least I made it to the gym today? 

Some more wave forms:

[Image: thCYbCS.png]

[Image: uVQm6Yg.png]


[Image: 0CwFzIx.png]

I wonder why these aren't flagged as hypopneas.

[Image: NYdj8m6.png]

I wonder why the awakenings get so frequent during the last few hours of sleep. Waking up every hour or less. CAs just casually appearing at low pressures last night.

[Image: jnXvdeK.png]

I often get what look like to be recovery breaths followed by CAs.

[Image: tYIysgu.png]

A CA in between two recovery breaths? Actually I might have already been awake here, I'm not sure.

[Image: xGlhMiw.png]

Much earlier though. Sometimes the CAs precede big breaths

[Image: ZkkrxXp.png]

More solid example from a few nights ago. Sorry if that was too many screen shots. Often when I see CAs, they follow after these big recovery breaths, which leads me to believe that some of them may not really be CAs? Occasionally though I do see CA precede these big breaths. So I wonder if ASV would make it worse or better for me. Bilevel might after all introduce more CAs with higher PS, but if you avoid ASV the better because it's preferable not to have to wrangle with a machine that breathes for you? How much more pressure support does a bilevel offer over ASV?

Not sure where to go from here. Should I tough it out with 8-12 + EPR 3 for a few more nights first? The awakenings are just so consistent with APAP, especially the last few hours of therapy, and together with the impotent inspiratory breaths I have little faith in using APAP anymore. I'm too tired to think.
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
In terms of using your CPAP therapy, you need to listen to yourself for what is most comfortable and tolerable in terms of pressure range and EPR. Most people with your issues have a higher AHI, and tend to have more events with EPR and variable pressure. So you don't fit all the expected patterns of someone that typically gets on ASV. Similar to some other members, I think if you are ever able to obtain advanced ASV therapy, you will find it changes your life pretty dramatically. There is a lot of irregularity in some of your respiration at times. Have you been evaluated for restless leg syndrome?
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Another night with 8-12cm + EPR 3:

Though I feel exhausted today even with taking Dexedrine, I think I'm making improvements. Or it's a fluke. I managed to sleep for 6 hours with maybe one awakening that I'm not sure about, however the fatigue is still unreasonable though as I counted at least 25+ possible arousals. My sleep hygiene was even awful in terms of limiting screen time as I was using the computer with fl.ux cranked up until I wanted to sleep. My sleep efficiency was better though.

[Image: HnXtO9y.png]

Zero obstructive apneas, now it's all flow-limited respiration, RERAs, irregular breaths, and centrals.

[Image: z81MVZ9.png]

Some round, mostly flat

[Image: 8IGG0OY.png]


[Image: H9tLm5S.png]


[Image: 1LLtvt8.png]

Irregular breathing and centrals

[Image: 4B451SI.png]

Flat ugliness sprinkled throughout in between more normal-looking wave forms

[Image: Dl8aINI.png]

I don't even know.

[Image: Rmu88iU.png]

Lower, flat peaks toward the end of therapy

Yeah, given all this weird breathing patterns, I'm convinced to take that gamble with ASV. What does auto bilevel offer over ASV, though? It's just that I feel like I have only one shot at this given my limited funds and income and I'm heavily leaning towards ASV. My only concern is if I'm a light sleeper and if ASV might wake me up when it tries to fix the centrals.

Restless legs - Given how I toss my bedding around at night, I think I do sleep a little restlessly but my sleep study didn't indicate anything abnormal. If it counts for anything, I've found myself acting out my nightmares, waking out of them swatting away dream bees and extending out my arms and hitting the wall or something. I need to call sunnybrook.ca/content/?page=bsp-sleep-home to see if they got my doctor's referral yet for a sleep study. How could I find out if I've restless legs or arms on my own? Use a fit bit or a night cam?
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Auto bilevel cannot treat central apnea. It is simply Auto CPAP with pressure support. The ASV provides treatment on a breath by breath basis to provide the amount of pressure support needed to even out respiration (periodic breathing) or cause you to take a breath during CA and maintain your breathing rate and volume. There is really no substitute for complex or central apnea.
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
(06-09-2018, 08:56 PM)Sleeprider Wrote: Auto bilevel cannot treat central apnea.  It is simply Auto CPAP with pressure support.  The ASV provides treatment on a breath by breath basis to provide the amount of pressure support needed to even out respiration (periodic breathing) or cause you to take a breath during CA and maintain your breathing rate and volume.  There is really no substitute for complex or central apnea.

I guess I might have complex apnea then or something approaching it? I'm about to pull the trigger on the ASV next week, but I'm just concerned about wild pressure fluctuations possibly causing arousals or if fixing the centrals can actually cause more arousals. But for any reason, I can always turn off the ASV and use it as an auto-bilevel, right? How do I determine which ASV would be best for me? Resmed or PR?
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RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Both are very good machines. But as you use Resmed now maybe stick with Resmed - no scientific reason
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