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Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
#1
Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Please bear with me if this is long as I’m trying to pack as much relevant info as possible. Maybe it’s TMI but I’m desperate. I’ll be eternally grateful to anyone who will even bother going through the whole thread.
 
I am diagnosed moderate OSA at 15-18 AHI and I've been suffering from very fragmented sleep ever since 2013-2014 and I can’t figure out why. I’m 34, 6’1, 186 lbs, Asian male. I’ve onset, middle, and late insomnia, but it’s the multiple awakenings every single night, sometimes taking hours to go back to sleep that have decimated me. I’ll usually have a long awakening after 3-5 hours of sleep lasting minutes to hours, then when I try to sleep again, I’d briefly wake up a few more times. 
 
I use APAP with a full face mask mainly, occasionally alternate with a P10. I usually waking up with one nostril completely congested despite having done a septoplasty and two turbinate cauterizations. I have a house dust mite allergy, but keeping my room clean, replacing all my bedding, and using a good air purifier doesn’t do anything for my congestion during bedtime. I’ve tried setting the machine to CPAP in the past and I still woke up all the same.
4 years on and it's been absolute death for me, putting me on the absolute brink. I've never suffered so much in my life as I did these past few years. I'm so painfully exhausted every day that I had to quit work and can barely function. I don't think I can even use the word "function" to describe it. I also get dizzy and lightheaded. I also have very severe ADHD and DSPD, both enormously amplified by the OSA. I go to bed at around 6 am on average. I've tried all kinds of different settings, but the awakenings persist. 

 
My centrals, while for the most part sub-threshold, have always seemed high, 2-4+, but it reaches 5+ several times a month. 
My central apneas had always made up the largest percentage of my AHIs. I set my EPR to 2, otherwise I get painful aerophagia. I’ve had a cephalogram done. I have small jaws. My airway is on the small side and I’m retrognathic with a class 3 anterior bite. Together with my nose swelling shut on one side every night, maybe it’s possible that I have comorbid UARS on top of OSA? When I google "UARS symptoms," I check literally every symptom on the list except for sleepwalking.
 
TMI part: Two things happened before I started awaking in my sleep: A suicide attempt in 2012 in which I ran the car engine for maybe 10-15 minutes in a closed garage just sitting in the driver’s seat, inhaling. I don’t recall suffering from any symptoms from acute CO poisoning; it was a half-assed attempt with a 9th gen Civic. Second is shortly after that I’ve abused weed and psychedelics for two years while taking citalopram. I went to the ER a couple of times because of my poly-drug abuse. Not sure if these things could have done any permanent damage that might contribute to my chronic insomnia.
 
Last CPAP sleep study from 2015:
·        Sleep onset 34.1 minutes and slept for 5 hours and 9 minutes with a sleep efficiency of 72.6%
·        Stage N1 sleep: 12% (normal: 5.71%)
·        Stage N2 sleep: 47% (normal: 56.89%)
·        Stage N3 sleep: 21.2% (normal: 12.46%)
·        REM sleep: 19.9% (normal: 23.47%) and REM sleep latency of 116.5 minutes (normal: 90 to 120 minutes)
·        There were 2 REM periods and 26 awakenings during the night.
·        CPAP pressure initiated at 5cm, increased to final of 9cm. AHI at 8cm pressure was 5 per hour.
·        Body position: 99.7% supine, 0.8% right.
·        Mean O2 saturation > 96.0%
·        Normal EKG, no arrhythmias
·        0 PLMI
·        57 spontaneous arousals, 16 respiratory arousals, 0 periodic limb movement arousals, giving an overall arousal index of 14.1 per hour (normal < 10 per hour)
·        Mild alpha EEG intrusion
 
Four sleep physicians all told me the same thing: that my OSA is effectively treated by CPAP, and that I have insomnia, which doesn’t really tell me anything. They would only tell me to keep better sleep hygiene, use relaxation techniques, and to exercise more. I understand those things are paramount, but none of that truly helped. I used to be very physically active and meditated a lot. Neither stopped me from the awakenings. I’ll be seeing a different ENT soon and I’ll ask if they could do a turbinoplasty and to look at my nasal valves. I tend to sleep longer and better on the very rare occasions when I wake up without complete congestion.
 
Does anyone have a remotely similar experience? Does this sound like UARS?
Was anyone here able to fix a chronic fragmented sleep problem like mine? 
Would an MRI reveal anything about my condition? 
What else could I try with my APAP or in general? 
Would it help to go on ASV? Would ASV trigger even more aerophagia?

For anyone in Ontario, Canada:
I’m on disability. How do I get a prescription/coverage for an ASV? 
Are there any sleep physicians near me who can help?
Also, are there any ENTs in Ontario who do submucosal turbinoplasties?
 
I know that’s too many questions to ask all at once, but I’m extremely desperate for solutions and any insight is appreciated. I’ll be beyond grateful if anyone can help me here. Thank you for your time.

I can't post images yet, so here's a link to some of my sleepyhead data, thanks.

imgur.com/a/btEl5Hj
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#2
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
"usually waking up with one nostril completely congested"  -- this is normal.  https://en.wikipedia.org/wiki/Nasal_cycle
I notice this a lot before I fixed my insomnia and got on CPAP.  I assume this still happens, but I just go back to sleep.

"I go to bed at around 6 am on average." -- as this is not due to work requirements you have some sleep hygiene issues to overcome.

UARS -- maybe.

"Was anyone here able to fix a chronic fragmented sleep problem like mine?"  -- Yes.  It was brutal but I think you are ready for it.  Google "sleep compression" or "sleep restriction" therapy.  It is not fun.  In a nutshell, you pick a target number of hours of good sleep that is less than you think you need to survive.  I was assigned five by my sleep doc.  Go to bed at the same time every night, not 6 AM!  After the number of hours you are alloted to sleep is over, you get out of bed.  Yes, that might mean you have slept little to none at all.  I did mention it was not fun, right?  Repeat every night.  After a few or several days, your brain will override your mind and keep you asleep.  Keep going for a week after that and then slowly increase your time in bed to the point where you are rested but still stay asleep.  I hated it, but it worked.
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#3
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
As for the nasal cycle, how much blockage at night is considered normal? My left side is definitely not normal. It's like 60% congested during the day and 100% completely blocked at night, whereas my right side, although much better, gets 80%-90% blocked at night from the nasal cycle. I'm not sure if that's considered normal for my right side? It's usually my left side that's blocked and my sinus CT scan shows that my left side is narrower with much bigger turbinates. Seems like CPAP does its job at reducing apneas with having only one functioning nostril at night, but from what I've skimmed on google scholar, most people with nasal congestion suffer from sleep disturbance and poorer quality sleep.

How are the number of hours assigned for sleep restriction therapy and how many days of it did you suffer through? How soon afterwards did you start seeing results? How much of your awakenings has it fixed? How consistent were your improvements?
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#4
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Also, I'd imagine you would limit or completely restrict caffeine and stimulant consumption during SRT?
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#5
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
sleeplover69, I don't have the burdens you have though I can relate to your suffering. Regarding your sinus and congestion issues, I can affirm that a nasal mask has helped me press through when I've been congested, and have read several anecdotes on the forum about others finding this effective.

Regarding restricting caffeine and stimulant consumption, that's prudent, and I would also say that restricting alcohol is advised as well, and no alcohol within a few hours of bedtime. (Though it's generally thought to be relaxing and promote sleep, it often is counterproductive — I can confirm this is so.)
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#6
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Could you post zoomed-in flow waveforms from various times in which you are 100% sure you were asleep?
Zoom in to graph width of 7-8 breaths, about 30 seconds.
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#7
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
(05-19-2018, 01:26 AM)sleeplover69 Wrote: How are the number of hours assigned for sleep restriction therapy and how many days of it did you suffer through? How soon afterwards did you start seeing results? How much of your awakenings has it fixed? How consistent were your improvements?

My hours were assigned based on the sleep lab results.  They said I was a "natural short sleeper".  I dispute that, but it worked.  You want to choose something a bit less than what would be a fully restful sleep if you were asleep during the whole time.

It was about a week before I started sleeping normally and, IIRC, I did it for two weeks.  It used to take me 1-2 hours to fall asleep and I woke frequently.  Now I fall asleep in 5-15 minutes most nights and wake once.  It has been about 10 years now.  I continued to drink coffee in the daytime, but always avoid stimulants after about 4PM.
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#8
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
(05-19-2018, 10:59 AM)yrnkrn Wrote: Could you post zoomed-in flow waveforms from various times in which you are 100% sure you were asleep?
Zoom in to graph width of 7-8 breaths, about 30 seconds.

[Image: pXqGuio.png]

May 16/18 - Asleep

[Image: m7XsioS.png]

May 16/18 - Asleep

[Image: irQCWkj.png]

May 18/18 - Asleep


[Image: ikcGV5W.png]

May 18/2018

Thank you so much. Also last night I woke up four times and at least three times were during a dream/REM sleep like on a lot of nights. I'll post more/screenshots and other replies later. Much thanks to everyone, btw.
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#9
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Could you set the Y-Axis limits of the flow graph to +-50 ? it is right-click on "Flow Rate", "Y-Axis", "Scaling"=Override, min=-50, max=50
Anyhow, the last graph seems to show some plateau and the graphs posted with the first message do show flow limitation sometimes, so UARS is possiblity.

1 Have you tried to lower 95% nightly flow limitation with higher minimal pressure than 6?
Considering 95% pressure was double-digit, min. pressure of 6 is quite low.
2 And/or with higher EPR?
3 Did it cause aerophagia or uncomfort?
4 A weird question maybe, do you find going to sleep with pressure 6 EPR=2 convenient? some people would find such low pressure to give feeling of not enough air (I would).
5 Have you tried Afrin (Oxymetazoline) for the congestion, once at night only?
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#10
RE: Please help! 4+ years fragmented sleep and insomnia – Extremely Desperate
Hey, thanks a lot, yrnkrn. What kind of curves are you looking for in flow rate that would suggest UARS? The flat tops at the peaks? Would you mind pointing out to me those plateaus and flow limitations that you saw in the last graph that indicates the possibility of UARS? What do you look for to connect it to UARS?

You're right at min 6 cm with EPR 2 feels too low. I'll try setting my min pressure to 7 tonight to see if it won't trigger any aerophagia. I had aero at 6-13 with 0 EPR. I've upped EPR to 2 and forgot to up my min pressure. I'll see how 7 min does with flow limitations.

I've also recently developed GERD on top of a history of IBS. I've really all the symptoms of UARS now except for sleepwalking, but my arms move sometimes in my dreams.

I've used Afrin before but heard stories about dependence and rebound congestion. Can you actually safely use it every night with no bad repercussions? Or should you only use it a few times every week? I'll go get some tomorrow to see if it makes a difference.

I'm always more than willing to provide any more data if you'd like. Thanks again.

[Image: zerVGsQ.png]


[Image: fbkpX36.png]


[Image: nxqfZ1q.png]
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