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Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
#31
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Sleeplover, I agree EPR 3 may help. I actually don't think you need to increase any pressure settings. Your current setting of 8 will yield a bilevel pressure of 8/5 which sounds pretty good.

You probably need to be evaluated professionally for bilevel and/or ASV. Your events are predominately central and your inspiratory wave-form is extremely weak and flow-limited. Using a higher EPR will give you some pressure support, but can't resolve CA.
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#32
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Sleeplover69, I empathize with your desperation. I do not have any expertise and cannot speak to cpap settings and equipment but I know that the therapy helps even if it is not a "sleep cure". The "sleep cure", really just an improvement but a very welcome one, for me came by way of my sleep doctor's diagnosis of advanced sleep phase circadian rhythm (as well as OSA). Wikipedia and Alaska sleep medical articles are good information sources. I have for years used used every article and publication published for sleep hygiene. I have perfect sleep hygiene and have for years. My biggest obstacle (aside from the OSA) was my fear of not being able to sleep. I kept trying to fit into the 9-5 world of sleep pattern and constantly failed, making me ever more desperate and losing ever more sleep. I had many of the physical and psychological symptoms you described, from chronic lack of sleep. I frequently was severely depressed and considered suicide to be able to end my desperate need to just sleep, to finally sleep, all I wanted was to sleep. Once I learned of the advanced sleep phase, it was a tremendous relief. I accepted that I just wasn't going to be able to go to sleep until 2am or even later if I got interested in something I was doing. That reduced the fear of not being able to sleep. It reduced my feelings of being a failure. It helped. Apap helps too, by giving me more quality sleep.

"If you have a hammer, everything is a nail." So you may well not have any rhythm issues and the sole difficulties are from the disturbance issues, which are numerous, and being addressed by the expertise of the board members. However, at the very least exacerbating the disturbance issues is what I read as fear of trying to sleep in mortal combat with fear of not getting enough sleep to survive. A vicious cycle.

Someone successfully used sleep restriction. That protocol did not work for me, but it may for you. Someone else referred you to a book on fragmented sleep which I am going to look into also. Just don't give up. There will be improvement. At some point you will have major improvement and it will feel like perfection!
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#33
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Welp, I tried 10-16/EPR 3 last night. Wave forms look somewhat better and flow limitations are 0? But yet again after 4~ hrs of therapy I started rolling in and out of sleep. Feeling like crap:


[Image: F5IWnxN.png]


[Image: Z2M3Ris.png]


It looks like I get more rounded inspiratory peaks, yet the flat tops persist and lots of them. Good news is that I'm not finding many of those ratty breathing clusters from previous days?

[Image: TMSO6Ei.png]

Also still getting plenty of these flat curves as well, which are picked up as hypopneas every now and then by the For Her.

I'm actually going to see my sleep doctor tomorrow, first time in over a year, and they're asking me to bring the machine with me. Guess I'll be bringing the For Her? I'm going to bring my laptop with me as well to show them these aberrant and weak breathing curves. What could I say to help convince them to try me on ASV or bilevel?
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#34
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
The graphs & waveforms do look better. OAs & CAs look about the same. 
Any chance of competent sleep dx & titration?
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#35
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
(06-04-2018, 02:42 PM)Greenbean Wrote: Sleeplover69, I empathize with your desperation. I do not have any expertise and cannot speak to cpap settings and equipment but I know that the therapy helps even if it is not a "sleep cure". The "sleep cure", really just an improvement but a very welcome one, for me came by way of my sleep doctor's diagnosis of advanced sleep phase circadian rhythm (as well as OSA). Wikipedia and Alaska sleep medical articles are good information sources. I have for years used used every article and publication published for sleep hygiene. I have perfect sleep hygiene and have for years. My biggest obstacle (aside from the OSA) was my fear of not being able to sleep. I kept trying to fit into the 9-5 world of sleep pattern and constantly failed, making me ever more desperate and losing ever more sleep. I had many of the physical and psychological symptoms you described, from chronic lack of sleep. I frequently was severely depressed and considered suicide to be able to end my desperate need to just sleep, to finally sleep, all I wanted was to sleep. Once I learned of the advanced sleep phase, it was a tremendous relief. I accepted that I just wasn't going to be able to go to sleep until 2am or even later if I got interested in something I was doing. That reduced the fear of not being able to sleep. It reduced my feelings of being a failure. It helped. Apap helps too, by giving me more quality sleep.

"If you have a hammer, everything is a nail." So you may well not have any rhythm issues and the sole difficulties are from the disturbance issues, which are numerous, and being addressed by the expertise of the board members. However, at the very least exacerbating the disturbance issues is what I read as fear of trying to sleep in mortal combat with fear of not getting enough sleep to survive. A vicious cycle.

Someone successfully used sleep restriction. That protocol did not work for me, but it may for you. Someone else referred you to a book on fragmented sleep which I am going to look into also. Just don't give up. There will be improvement. At some point you will have major improvement and it will feel like perfection!

Hey, thank you so much for the heartfelt reply and morale boost, Greenbean. I am very grateful. Your account of fear and anxiety being pivotal to how insomnia manifests is exactly how the author describes it in the book that was recommended by yrnkrn. I found just avoiding as much light as possible hours before bedtime tremendously helpful for falling asleep earlier and sleeping longer. However, I haven't found sleep hygiene to help with the awakenings at all. I also don't have too much anxiety about falling asleep nor awaking from sleep. I used to, but I'm kind of past that. It's sort of like despair now. Though you're right about not letting the dread of poor sleep/(schedule) loom over and enthrall the schedule that is your life, which is something else that the author noted in the book. That is something to keep in mind. I do hope for the best but I am prepared for the worst everyday. 

You're right that it is necessary to stop the psychological positive feedback loops that amplify and emerge from disturbed sleep feeding back onto itself. Given my craniofacial deficiencies which have been confirmed by doctors, my medical/dental history, and what I'm seeing in this thread, I do suspect that the disturbances are largely SDB-related. Someone posted a good analogy by Barry Krarkow (or he himself did) comparing our sleep breathing to heartbeat in that much like your heartbeat, you would urgently treat the stoppages, but you also wouldn't for a second dismiss the arrhythmias which are just as critical to sustaining the temporary life-form of sleep. CPAP it seems just isn't sensitive enough to these arrhythmias and that's why some people are aroused/wake up many times despite therapy that's treating the longer disruptions. 

But another thing is that some people are just sensitive sleepers and are prone to PAP-emergent arousals and disordered breathing events. Like in my case I've been using CPAP for over four years and my AHI is predominantly CAs. I've also used a temporary MAD before. In my experience with the MAD, it felt like I'd wake up less and that it was a little easier to go back to sleep. But I was waking up with headaches, something that never happens with CPAP, and I felt just the same or worse. I can only imagine how much better my sleep could be with what MAD merely tries to poorly emulate, i.e. MMA surgery. Unfortunately, I was told I wasn't a good candidate given my weak TMJs. I'm stubborn and am now seeking a second opinion.

I will still consider sleep restriction therapy though. As of now though I'm looking at different machines and what I could do surgically to improve my airway. I take it you still suffer from fragmented sleep despite perfect sleep hygiene? If sleep restriction therapy didn't work for you, do you think CPAP alone is satisfactorily treating the airway aspect of your disturbed sleep?
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#36
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
(06-04-2018, 03:30 PM)yrnkrn Wrote: The graphs & waveforms do look better. OAs & CAs look about the same. 
Any chance of competent sleep dx & titration?

OK, so the sleep doctor I'll be seeing tomorrow is from the same place where I got my first ever sleep study done and a CPAP titration study done. I only slept for 2 hours and 6 minutes during my initial sleep study and they diagnosed me with moderate sleep apnea and insomnia. FWIW, the CPAP study recorded 57 spontaneous arousals and 16 respiratory arousals with an overall arousal index of 14.1 (normal: <10 her hour) over 5 hours and 9 minutes of sleep. The receptionist there however says they do diagnose for UARS when I called them to book an appointment and this sleep doctor is a pulmonologist. There's actually a couple of sleep doctors there that rotate. Yet the few times I saw them, they only ever recommended sleep hygiene and CBT-i when I told them about my grievances. I'm hoping that showing them the things we went through in this thread might change their response this time.

I also had my family doctor send in a referral to get a sleep study done at this place which looks to be more thorough?: https://sunnybrook.ca/content/?page=bsp-sleep-home
I called them and they also said they diagnose for UARS.
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#37
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Sleeplover69, the sleep hygiene rules that I instituted years ago I still use are just because they aren't oppressive (no caffeine after morning, no tv, bedroom is for sleep only, darkness, etc) and I'm fine with them. The rules "don't go to bed until you are ready to sleep", "get up at the same time each day" (usually meaning 6:30 - 7:00am for normal people) didn't work for me - but that makes sense now that I know I have the delayed sleep phase. It did not matter how often I got up that early (which was most of my working life anyway), I couldn't go to sleep before 2-4 am. No matter how beleaguered and tired I was during the world's normal wakening hours, I would get a surge of energy and alertness at 9-10pm. That is probably why sleep restriction and good sleep hygiene did not work for me. My clock is set differently. My sleep doctor thinks there will eventually be a chromosome for it identified. Same for people who have to go to bed early (like 8-9pm) and get up full of energy at 4:30-5am. Those people still fit in to the 9-5 working world so they aren't as freakish and get plaudits for being go-getters. (They don't know they are abnormals too, hehe.)

I don't know that I have fragmented sleep, but I noted that often you have four hours of good sleep first, and then more issues. I've noticed that my first four hours are usually really good (often perfect zero AHI now that I've made some adjustments) but often I briefly awaken and/or have events after that. Those times I just don't feel as rested even if I get up later. At some point I'll post some charts and ask for help understanding what's going on and see if it can be minimized. I want to read about fragmented anyway though because I think my poor sister who used to be the soundest sleeper in the world now has it.

I was also interested to note that have a narrow throat. My sleep doctor said I do too. I think cpap is the only thing for that, but I'll have to ask on here. I don't have any mandibular issues.

I see that you very thoroughly research and investigate. Have you considered in addition to a "regular" second opinion on MMA surgery having your CTs and records, and full mouth dental impressions (if they haven't been done, consider getting them) sent for review and opinion by whichever craniofacial surgeons nationally have the most expertise in that surgery? I can tell you won't blindly jump into surgery, but still . . . If you think surgery is a likely choice, start screening your friends. Line up a phalanx of normals, advanced sleep phasers and delayed sleep phasers, to give you 24 hour bedside coverage while you're in the hospital!

Seriously, I am very heartened by your commitment to getting answers, expertise, and effective treatment. It will come together for you. You will be able to rest easy (pun intended).
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#38
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
All right. This visit to the sleep doctor caught me off guard. It was a total shitshow with this place as usual. They called me literally the day before the appointment day and I was operating on 4 hours of sleep so I was ill-prepared and knackered to hell. His tone was overall dismissive as usual (he never even sat down, like, come on). His facial expression was disgust.

Whenever I tried to bring up the topic of RERAS and tried to connect my awakenings to my weak and flow-limited breathing. He says there's nothing more that they could do for me and that they've tried everything (i.e. hardly changed my CPAP pressure settings over 3 years, only cursory looks at the bare minimum data like total hours of usage, AHI, and compliance, giving me pills, taking away my driver's license, telling me that I need better sleep hygiene then sending me off on my way).

He implied since my AHI is low, my breathing and airway must be fine. When I mentioned UARS and flow limited breathing, he nods but then says don’t expect perfect breaths. No one has perfect breathing. I said it was suboptimal. What I really meant to say it looks dysfunctional, it's dysrhythmic, but it doesn't matter, he won't care. I show him my flat wave forms, idly scrolling through my laptop like a moron. It’s your mask intentionally leaking. You’re awakening because of other causes. He looks at my written report to fish for possible causes: Dexedrine can cause it. But I rarely take it. Depression can cause it. But I wasn't depressed whenever I got good sleep. Translation: Whatever it is, I don't want to have to deal with it. He tells me I’ll get better wave forms with EPR off. I didn’t mention that I had EPR off for over two years when I was complaining about the same problems. He concludes: Stop looking at your sleepyhead data.

I said I've been suffering for so many years and obviously CPAP is just not working out, it's not sensitive enough for my needs. Could I at least try bilevel? Isn't bilevel the next logical step? Not a chance. It's not suitable for you. It's for obese ladies and people with congestive heart failure only. Are there any ENTs that deal with SDB? Nope, not up here. You'd have to go to Stanford. All right, time's up, I'll see you in 2 years time. Really great bedside manners with that pat on the shoulder as he walked out the room, though. But I would have preferred a genuine "f*** you." instead. Health care in Canada, folks.

Last night's therapy, with raised bed posts 3" + wearing a soft cervical collar. Had a few brief awakenings within 4 hours then napped for a couple more minutes. 8 to 16 cmH2O pressure/EPR 3 as suggested:

[Image: tYPQI9t.png]

Numbers look good. But AHI isn't my problem.

[Image: a995OnP.png]

[Image: 3JDXGxt.png]

[Image: GZ2MH1D.png]

[Image: zrCgKXz.png]

My breaths rarely reach 25 on the flow rate. Compare this with 8-16/EPR 1 per below:

[Image: I7b0pH6.png]

The peaks look like peaks and they're higher

[Image: HGAhXJ2.png]

But then these clusters happen in between

What is my next step? I don't know. I feel like I'm done with CPAP. Even if doctors don't want to let me try other machines, they never cared to work with me to try to make CPAP work for me. God, I'm so close to paying out of pocket for an ASV. Can the AirCurve 10 ASV also function as a auto bilevel or APAP should ASV not work out? I guess it won't hurt to try CBT anyway even if I have good reasons to think that my sleep disturbances are mostly caused by my sleep-disordered breathing.
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#39
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
hello sl69. I really feel for you. in some ways we sound like 2 peas in a pod. there are others here with similarities too. I'm struggling with major fragmentation and like you suspect some kind of disordered breathing. from an unscientific common sense point of view, ragged flow rate waveforms look like they ought to be traumatic. I'm quite sure it feels traumatic. So I'm with you, seems like a no-brainer to me but I've found zero support anywhere for the idea disturbances might be caused by disordered breathing. wearing a soft cervical collar has been the single most effective adjustment for me to date. regarding asv, around here the general consensus is that cases like ours generaly fail to convince doctors and insurance, or insurance anyway, to support the move to asv. of course I have no idea if that's what you need; not even certain it's what I need. even so, in my desperation and not wanting to be held up by the system, I just managed to have my first night with the aircurve 10 asv. too early to know anything except it was easy, it feels better than apap. unfortunately no apparent value in reducing awakenings (yet?). I can feel the machine nudge me when I fail to breath rhythmically. it's a wee bit startling but it feels good. flow rate is not ideal (yet?) but looks to be smoother than with apap. just one night and I don't want to jinx anything, but while still sleepy, I feel much less 'hungover' than during 1.5 years with apap. I'll be here asking for help dialing in my asv and if you haven't already, search asv on the forum and read some of the other (long) threads with cases not conforming to conventional wisdom. at the very least it's good moral support and it might help you determine whether a different machine is in your future. maybe we difficult subjects should have our own little comisery section. like you I am not confident I suffer issues CBT addresses but we can't really know until we try (do you hear me trying to talk myself into it?). if we're not finding adequate relief, we pretty much have no choice but to try all reasonable suggestions. good luck and I hope you find some rest.
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#40
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Sleeplover, we recently made a breakthrough for you with the higher EPR. I think the difference is visible in both the AHI and the close-up wave forms of your breathing. If I could put you on a bilevel, that might be ideal, but I think with your Airsense 10 Auto set at low pressure using higher EPR we are making progress. If anything, I might set your pressure at fixed 8-cm and leave EPR at 3 and call it good. With more time at these most recent settings I think you are going to start feeling better. You really don't seem to need higher pressures, and the 8/5 bilevel pressure looks pretty good.
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