Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate

[yrnkrn]

I have highlighted the flat tops. Note the rise in the ResMed FL index just after these breaths.



The flat tops indicate you need to work harder than usual to breath. We can't know if this is what waking you up (UARS) or a but of harmless effort without a competent sleep lab. Assuming it is UARS, your goal would be to get your nightly 95% flow limitation to 0 where now it is 0.15. The means to achieve 0 FL would be higher pressures and/or high EPR or bi-level. Try both, raising min. pressure and EPR=0 or EPR=3. Go gently & slowly - give every experiment several nights to avoid making decisions based on one random night. If you develop aerophagia or many central apneas or any new problem go back a bit.

Other than air pressure issues, the book "The Sleep Solution: why your sleep is broken and how to fix it" by W. Chris Winter is the most insightful and funny sleep book I read. Dr. Winter really gets sleep. I highly recommend you read it end to end, esp the insomania chapters.

[sleeplover69]

This night was really bad. I was drifting in and out of sleep until 10:20 am and had more awakenings than I can keep track of. Some bad hygiene too staying in bed wide awake past the 15 min mark. I'll do better. I now see how flow limitations correspond with flattening of the peaks as the curves are rounder with a higher min pressure set a 7. Better 95% flow limitation now. Should I raise my min pressure? Raise min and set EPR to 3? Or I'll try this for a few nights first.












I also got the book you recommended, thank you. I'd actually come across it before at a book store and read a bit of it. Crick and Watson were/are such a-holes. I'm determined to finish it in a few days. Also what kind of metrics would a sleep lab need to have in order to diagnose UARS?

[yrnkrn]

A good sleep study keeps tab of many more signals in order to determine what is exactly happening, see https://en.wikipedia.org/wiki/Polysomnography
While slowly experimenting with pressure, do try to follow the book suggestions.

[Sleeprider]

Sleeplover, keep the same pressure settings, but decrease EPR to 1. Let's see what happens.

[sleeplover69]

So last night, I just sat in the dark for around 2 hours, trying not to go back into my bedroom until I got really sleepy. It allowed me to sleep for longer, but not better. I still got that long awakening at around 4 hours that took 10+ minutes to go back to sleep. Then afterwards, I could only sleep for small chunks at a time with multiple awakenings like every night. I was so sleepy I couldn't get out of bed.

I noticed I was taking hard breathes and my heart rate goes up the last few times I woke up.





Right before first awakening. Recovery breathes?



Zoomed in. Huh?



Few minutes before the above.



What is this? It isn't even flagged as anything.



Before another awakening.



A Thousand Plateaus.



The end of a bad run.

Hey, Sleeprider, thanks. I'll see what happens with EPR set to 1. I started using EPR again only this past month after two years with it off because I was getting a lot of very painful aerophagia lately. Which then came a little GERD which I never had before.

[Sleeprider]

That section at 09:35 with about 1-1/2 minutes of breathing cessation prior to an arousal got my attention. It wasn't even flagged. It was preceded by a segment at 09:32 with very irregular breathing. Another closeup at 09:46 appears to be clusters of near apnea that are not flagged, and this seems to occur during, or just prior to the first therapy break. Do you think you were awake for all of this?

You clearly need some help, and I'm at a bit of a loss as to what to suggest. What would you like to see happen? Do you think an advanced therapy like ASV would help resolve this?

[sleeplover69]

That section at 09:35 with about 1-1/2 minutes of breathing cessation prior to an arousal got my attention. It wasn't even flagged.  It was preceded by a segment at 09:32 with very irregular breathing.  Another closeup at 09:46 appears to be clusters of near apnea that are not flagged, and this seems to occur during, or just prior to the first therapy break. Do you think you were awake for all of this?  

You clearly need some help, and I'm at a bit of a loss as to what to suggest. What would you like to see happen?  Do you think an advanced therapy like ASV would help resolve this?

Sorry for the late reply. Been a little busy on top of feeling like I've been hit by a truck every single day.
All those weird breaths and clusters occurred prior to the first therapy break and I was most likely asleep for all of that. If I were awake, it’d probably be an hour or more before that, but I don’t remember being awake that night. I made a note of it in sleepyhead. I'm seeing these weird breath clusters interspersed everywhere every night: 

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What is even happening here? Have you seen similar curves from other people? What could even explain these curves? Maybe my nasal congestion is playing a large role in the weirdness here? This all on top of all the weird and flat inspiratory curves. Would this strongly suggest that the awakenings are overwhelmingly due to SDB and it's not just all in my head? Or additionally, there is also something wrong with my head?
 
I try to be optimistic every night, but from reading my sleepyhead notes, this happens to me literally every night: 

A prolonged awakening at around the 4 hour mark, sometimes with my heart pulsing. Then it'll take me around 10 minutes to a few hours to fall back asleep. Sometimes I will have one or two brief awakenings before the prolonged awakening at 4 hours. Then after the 'halftime' I'll have several more brief awakenings when I go back to sleep. For most awakenings, and all the latter ones, I've noticed that each time it was during a dream and sometimes I'll wake up with heavy breathing and my heart racing slightly. It almost seems like I'm waking up for most REM cycles, but I don't even know if I'm getting much deep sleep either.
 
Also is it out of the ordinary to get an MRI to rule out anything weird going on with my sleep? Or might UARS solely explain these weird breathing patterns and awakenings? I pretty much have all the symptoms except for night sweats and sleepwalking. I really don't know what to do.

ASV: Someone on cpap-tawk mentioned that ASV in theory should be effective for people with mild to moderate sleep apnea who are prone to centrals, hypopneas, and flow limitations which seems to be the case for me? But I'm also prone to aerophagia unless I use the P10, but I have that nasal congestion to deal with, for which I'm seeing another ENT (who hopefully could fix with nasal canal surgery/turbinoplasty.) Also I don't know if sudden pressure rises would disturb my sleep?
 
Could bilevel help?

Anyone have suggestions? Different pressure settings in the meantime? I want to try to find a sleep lab that diagnoses UARS. Anyone in Ontario (GTA area) know any UARS-friendly sleep doctors and ENTs that deal with SDB? Should I get a sleep study done with a neurologist? (https://sunnybrook.ca/content/?page=bsp-sleep-home) Also, would sleep restriction therapy make any sense at all if my insomnia turns out to be SDB-related?

[yrnkrn]

Do you think you were awake for all of this?  

It's a critical question. Without EEG signals to make sure you were asleep, it's dangerous to draw conclusions from these breath patterns.
Jason shows here awful flow data - for an awake patient! When the patient was asleep, flow was normal.
Maybe you would like a repeat sleep study, focusing on these issues.

sleeplover69, have you read the book, especially chapters 8-9 ?

[sleeplover69]

Do you think you were awake for all of this?  

It's a critical question. Without EEG signals to make sure you were asleep, it's dangerous to draw conclusions from these breath patterns.
Jason shows here awful flow data - for an awake patient! When the patient was asleep, flow was normal.
Maybe you would like a repeat sleep study, focusing on these issues.

sleeplover69, have you read the book, especially chapters 8-9 ?

Yeah, of course I can't be 100% certain that I was asleep and I do want to get a sleep study done that's sensitive enough to figure out what's going on. But it's funny, because these patterns look like the ones at 28:00 to 29:00 which he flags as hypopneas and RERAs.

I also finished the book. Thanks for the recommendation. Some very helpful tips. I have much better sleep hygiene now and decreased anxiety about my sleep. I do seem to be able to get a little more things done when I change my perception about how I've slept and rethinking my sleep identity in chap 10, but not so much at the gym in which I'm only declining, so it seems like coping/placebo vs nocebo? I'm even getting custom shades done for two rooms at home because of this book that will cost me almost a grand CDN. I can sleep a little longer, but my awakenings are more or less the same. I know it's only been a few days of changes, but the book hardly touched on SDB, which I wish it did and which I think is still a crucial, even primary, piece of the puzzle.

[sleeplover69]

I have a chance to test run the AirSense 10 Autoset For Her next week for two weeks. Worth a shot? Any pointers for using that machine?