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

[love2sleep69]

I've cross-posted this identical thread from apneaboards, I hope that's OK: http://www.apneaboard.com/forums/Thread ... #pid259460

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. My airway is on the small side and I’m retrognathic with a class 3 anterior bite. Together with my chronic total nasal congestion, maybe it’s possible that I have UARS?

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?
I’m on disability and live in Ontario, Canada. How do I get a prescription/coverage for an ASV?
Are there any sleep physicians near me who can help?

I know that’s too many questions to ask 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.

Examples of my recent sleepyhead data, trying to show times near my awakenings:

https://imgur.com/a/btEl5Hj

[Julie]

Have you tried working with a therapist just on the insomnia/DSPD? And are you now taking meds for anything at this point? Certainly there are some for e.g. ADHD that could interfere with your sleep. You're right that there is a lot going on (or a lot that has gone on) and sorting out what's what now is not something we can necessarily do easily online. Specifically what settings have you tried recently and for how long each time?

You say you can't figure out why you've had fragmented sleep x a few yrs, but you also talk about serious mental health issues without going into possible help you might have had for it/them or how consistently, and of course they could certainly have plenty to do with your Cpap/Osa troubles.

What machine (model and full name plse) do you use? What mask(s)?

I highly doubt that an MRI would help anything and while an ASV might (eventually) it's important to first sort everything else out before trying one... throwing one more factor into the mix without isolating present variables may not help.

And what have you done to not sleep on your back which of course provokes many more apneas than side sleeping does.

Your 'sleep'(?) doctors may only be looking at your AHI and not understanding that centrals (or clear airways) make up so much of your results... do they not understand that Apaps don't help those and won't register on them?

[MrsRinPDX]

I am sorry to hear you are suffering. I can't address why it's happening, but I can tell you you're not alone. I was waking every two hours before I was diagnosed and treated. (Several years. ) Now I get roughly three hours of uninterrupted sleep at a time after being on a BiPAP machine for six months.

My AHI averages below a 1, so that isn't my problem. My sleep doctor has reviewed the numbers and does think things will get better as other health problems settle down. And ya know, things are slowly getting better.

I guess what I am trying to say is to hang in there. Our bodies are more complex than we sometimes give them credit for. Keep working toward a solution which may lie outside of sleep apnea.

[love2sleep69]

Hey, thanks for the responses.

I always had severe ADHD and DSPD my whole life, but I also used to be able to sleep 8+ hours uninterrupted until all of a sudden like a switch had been flipped after the OSA has emerged in full and I'm now lucky to get 5 hours at a time. Yeah, I think ADHD brains inherently have messed up circadian rhythms and disturbed sleep. I'm not enjoying this positive feedback super orgy with the OSA, ADHD, DSPD, and insomnia.

It's a needle in the haystack situation for finding Adult ADHD therapists here west of Toronto, Ontario. I called a lot of places and only got either an answering machine or told that they didn't accept new patients. As for CBT-i, my sleep doctors told me only to look up books on the subject to apply it myself. I found someone online, but they don't have many reviews so I'm hesitant. I've looked into neurofeedback for ADHD some time ago but I couldn't afford the several thousands of dollars for a treatment plan. I also considered DYI neurofeedback for ADHD a few years back when I had a lot more energy, but either way, the evidence for its effective was all over the place back then. I'll look in neurofeedback again to see if evidence for it is more robust now and for insomnia, which seems promising. Money is really my main issue. The question is, how to allot my limited funds among getting ADHD therapy, CBT-i, neurofeedback for ADHD or insomnia, or getting an ASV? I can't work and I have very little income.

I mean, what if just getting an ASV will solve my problems even if doing all the other stuff will help, too? Or maybe I'll put myself in debt to do all of the above. It's so hard to decide. I need help deciding. Are Barry Krakow's views on using ASV for complex insomnia still on the fringe in the medical community? Does he know something that other experts don't or is he just a salesman? I'm hoping for some accounts of people's experiences who've switched to ASV from CPAP for their broken sleep.

For ADHD meds, I only take Dexedrine only a few times a month or I won't be able to do basic things for myself. I drink half a cup of coffee first thing after waking up every day. Skipping it has no effect on my insomnia, it seems. I also either take Zopiclone or Ambien briefly every few months. I've quit all recreational drugs.

My pressure settings at usually 6-7 to 13, with EPR set to 2 now to eliminate the aerophagia. Here's my settings summary:

[love2sleep69]

I am sorry to hear you are suffering. I can't address why it's happening, but I can tell you you're not alone. I was waking every two hours before I was diagnosed and treated. (Several years. ) Now I get roughly three hours of uninterrupted sleep at a time after being on a BiPAP machine for six months.

My AHI averages below a 1, so that isn't my problem. My sleep doctor has reviewed the numbers and does think things will get better as other health problems settle down. And ya know, things are slowly getting better.

I guess what I am trying to say is to hang in there. Our bodies are more complex than we sometimes give them credit for. Keep working toward a solution which may lie outside of sleep apnea.

I hope you'll eventually sleep much, much better on the BiPAP and with your health problems being treated. After four years on CPAP, I still haven't seen any improvements. My AHI has never gone below 1 and rarely under 2. My health is only getting worse for wear. For me, I only feel despair most days, yet I still try to muster strength out of thin air to keep fighting. Hmm, I wonder if I can get a trial or covered for BiPAP. Thanks for the reminder.

[JDS74]

Part of the problem may be that you have developed a habit of being in bed and not being asleep in bed.
This is a habit that has to be re-programmed if that is what is going on.

The only thing I can suggest is a sleep hygiene approach.
When you waken during the night, try to go back to sleep. If you don't get to sleep within about 15 minutes, then:

1) Get up, turn off the machine, etc. and go to a different room.
2) Read an non-exciting book, listen to some calming music, meditate, etc. (i.e., do something boring) until you feel quite sleepy (tired doesn't count, sleepy does.)
3) Then go back to bed, mask up, etc. and try to go to sleep.
4) If you don't get to sleep within about 15 minutes, then repeat starting at 1) above.

Continue this cycle until it's time to get up for the day.
Do not take naps during the day.
Do try to go to bed at about the same time each day.
Do not read in bed, watch TV, listen to music, etc. Bed for now is only for sleeping.

[love2sleep69]

I've been working with the good folks over at apneaboard and it seems like while sleep hygiene is a factor, my awakenings are mostly to do with sleep-disordered breathing. I'm working on both at the same time. We've found that EPR to 3 on the S9 Autoset was a game changer, and together with narrowing down the pressure range my sleep had somewhat improved although it is still far from adequate. The pressure relief gave me smoother wave forms, deeper and more stable breathing, a bit and sometimes allowed a bit longer sleep before a prolonged awakening. One night I was able to sleep 6 hours with maybe 1 or 2 very brief awakenings. The arousals were still constant and the respiration overall looked weak and pained.

We felt like that's as far as we could push the S9 Autoset in terms of optimal therapy for me and that's where more pressure support comes in to clean up the flow limited breaths. Right now I'm about to be on night 4 of 7 trying to dial in a bilevel on trial from my supplier to see where we could take it. So far it's been disheartening though with the amount of centrals I'm getting which indicates I might have to move up to ASV, if I could get my hands on one. What's the overall sentiment here lately on ASV for UARS patients?

Last page of my thread on apneaboard: http://www.apneaboard.com/forums/Thread ... ate?page=9

Some SH data from the latest night with the bilevel:
https://imgur.com/a/BWF2tfa

There are certainly a lot of smart people here and I'll be so grateful for your help and insight. I'll appreciate if anyone has any thoughts or suggestions about where I can go from here. Thanks.

[musculus]

I've been working with the good folks over at apneaboard and it seems like while sleep hygiene is a factor, my awakenings are mostly to do with sleep-disordered breathing. I'm working on both at the same time. We've found that EPR to 3 on the S9 Autoset was a game changer, and together with narrowing down the pressure range my sleep had somewhat improved although it is still far from adequate. The pressure relief gave me smoother wave forms, deeper and more stable breathing, a bit and sometimes allowed a bit longer sleep before a prolonged awakening. One night I was able to sleep 6 hours with maybe 1 or 2 very brief awakenings. The arousals were still constant and the respiration overall looked weak and pained.

We felt like that's as far as we could push the S9 Autoset in terms of optimal therapy for me and that's where more pressure support comes in to clean up the flow limited breaths. Right now I'm about to be on night 4 of 7 trying to dial in a bilevel on trial from my supplier to see where we could take it. So far it's been disheartening though with the amount of centrals I'm getting which indicates I might have to move up to ASV, if I could get my hands on one. What's the overall sentiment here lately on ASV for UARS patients?

Last page of my thread on apneaboard: http://www.apneaboard.com/forums/Thread ... ate?page=9

Some SH data from the latest night with the bilevel:
https://imgur.com/a/BWF2tfa

There are certainly a lot of smart people here and I'll be so grateful for your help and insight. I'll appreciate if anyone has any thoughts or suggestions about where I can go from here. Thanks.

what's your sleep position? can you do stomach sleep?
why not taking allergy medicine (oral antihistamine or nasal spray)?

I think your SDB has quite a bit UARS components, which means you need to look at flow limitations, not AHI to guide treatment.

let's me look at your SH data and get back to you. If you can share SH files, that's even better.

[musculus]

Hey, thanks for the responses.

I always had severe ADHD and DSPD my whole life, but I also used to be able to sleep 8+ hours uninterrupted until all of a sudden like a switch had been flipped after the OSA has emerged in full and I'm now lucky to get 5 hours at a time. Yeah, I think ADHD brains inherently have messed up circadian rhythms and disturbed sleep. I'm not enjoying this positive feedback super orgy with the OSA, ADHD, DSPD, and insomnia.

It's a needle in the haystack situation for finding Adult ADHD therapists here west of Toronto, Ontario. I called a lot of places and only got either an answering machine or told that they didn't accept new patients. As for CBT-i, my sleep doctors told me only to look up books on the subject to apply it myself. I found someone online, but they don't have many reviews so I'm hesitant. I've looked into neurofeedback for ADHD some time ago but I couldn't afford the several thousands of dollars for a treatment plan. I also considered DYI neurofeedback for ADHD a few years back when I had a lot more energy, but either way, the evidence for its effective was all over the place back then. I'll look in neurofeedback again to see if evidence for it is more robust now and for insomnia, which seems promising. Money is really my main issue. The question is, how to allot my limited funds among getting ADHD therapy, CBT-i, neurofeedback for ADHD or insomnia, or getting an ASV? I can't work and I have very little income.

I mean, what if just getting an ASV will solve my problems even if doing all the other stuff will help, too? Or maybe I'll put myself in debt to do all of the above. It's so hard to decide. I need help deciding. Are Barry Krakow's views on using ASV for complex insomnia still on the fringe in the medical community? Does he know something that other experts don't or is he just a salesman? I'm hoping for some accounts of people's experiences who've switched to ASV from CPAP for their broken sleep.

For ADHD meds, I only take Dexedrine only a few times a month or I won't be able to do basic things for myself. I drink half a cup of coffee first thing after waking up every day. Skipping it has no effect on my insomnia, it seems. I also either take Zopiclone or Ambien briefly every few months. I've quit all recreational drugs.

My pressure settings at usually 6-7 to 13, with EPR set to 2 now to eliminate the aerophagia. Here's my settings summary:

mind to post your cephalometry here?

[love2sleep69]

Thanks much for the responses.

Sleep position - I am a back sleeper which I now remember is the worst for SDB. I use an Amara View, is it possible to backsleep with that? Side-sleeping should help with UARS, right? I've also just started developing LPR in the last few weeks.

Allergy Medication - I take cetirizine very occasionally because of fears of cognitive side effects. I use Flonase, but I don't find it does much of a difference with the vasomotor rhinitis at night. I'm looking to find an ENT to get a turbinoplasty.

Flow limitaions - Yeah, exactly. AHI isn't a problem for me, it's RERAs from flow-limited breathing. I'm testing a bilevel and my waveforms look much better but I'm seeing a lot of what looks to be recovery breaths in my flow rate. I've posted the SH data for that night and all the nights before up to 2 weeks back here: http://www.apneaboard.com/forums/Thread ... #pid262975

Some screen shots from last night with the AirCurve 10 VAuto: https://imgur.com/a/BWF2tfa

It's late here now but I'll post some data in this thread tomorrow when I get the time.

Here's my ceph:

[love2sleep69]

Two more nights testing out the Bilevel. I'm working on my sleep hygiene at the same time but sometimes it feels like it does nothing for me as I would awake just as often and just as long. I feel so defeated.

Bilevel Day 4 - Settings 7/12/4
Too many awakenings to count, I don't even remember when. I just took screenshots of every possible RERA and SDB-related events. Which ones look spontaneous or normal and which ones look breathing related?
https://imgur.com/a/JjfBocQ

Bilevel Day 5 - Settings 8/12/4
Same as above but with going dark over 2 hours before bedtime, many awakenings again but with a even more prolonged one partly due to delayed painful aerophagia.
https://imgur.com/a/bf5wifC

If anyone cares to skim through some of these screen shots, please advise. I have two more nights with the bilevel, what settings could I try next?