Hi there - I've been lurking on apneaboard ever since my first sleep study, mild sleep apnea diagnosis, and CPAP prescription 5 months ago. I also caught a diagnosis of Delayed Sleep Phase disorder and was told I enter REM almost immediately upon falling asleep. At that time I was also diagnosed with asthma and got a maintenance inhaler and omnaris, a corticosteroid nasal spray, which has cured my life-long nasal congestion issues. I can smell things now. Who am I? I'm a 24 year old male, 5'11 183lb. I just graduated with a physics bachelor's a year ago and have been painstakingly looking for work since.
I was prescribed a ResMed AirSense S10 Autoset for Her in March of this year, 5 months ago. I started with an N30i. My CPAP was set at 4-6 by the doc. After the first night of feeling suffocated, I set it to auto 5-15 and EPR 3. Temp 30, Humidity 5 keeps my airways happy all night. I experienced my first decent sleep and woke up feeling hopeful for the first time in many years.
The N30i was great, but I had to learn to sleep on my back because I found it leaked too much on my stomach, my preferred sleep position for my entire life (mouth hung-open, drooling). It worked well, but I kept taking it off at night - I couldn't get more than 3 hours the first 2 months of therapy. Since the pandemic hit, both my DME and sleep clinic/doc's office closed down so I've been unable to get any help from them. I went out of pocket to try an F30i, an N20, and a P30i. The P30i stuck and got me my first few nights of 6h+ uninterrupted. I still take it off for 1-2 hours in the middle of the night, but I've learned to put it back on ASAP so I get 6 hours most nights with my CPAP. Leaks are at <5L/min. I've been optimizing my CPAP since day 1 according to advice of users on this thread - Sleeprider, you are a national treasure - the rest of the sleep-mentors on this board whom would make a list too long, you are an inspiration to me. 5 months later, I think I've done well for myself but turn here as I've exhausted everything I could have tried and feel there's something I'm missing.
So here's the meat of the situation:
Since day 1 my S10 CPAP has been bumping my pressure to 11 every night, sometimes to 14 - without fail - so I almost instantly raised my range to auto 10-14 and eventually fixed it at about 11. This seems to eliminate all OAs, but I struggled with an AHI of 8 owing all to CAs, the occasional hypopneas, a RERA or two, plus a supplementary avg 11/h user flags (UF1 at 5s 20% FL, UF2 at 5s 50% FL). Worst of all, I was waking up every hour or so with air coming out of my mouth, ending up without my mask for the rest of the night. I started mouth taping. That helped, but I was still waking every hour and flinging my mask off as air entered my mouth and blew up my cheeks. I tried a cervical pillow, a cervical collar, and finally got a chinstrap a month ago. Mouthtaping plus the chinstrap enabled me to finally sleep for about 6 hours with my P30i. However, the CAs, weird flow rate graphs, FLs, arousal with blown up cheeks and occasional middle of the night mask-flinging persisted, to a lesser degree. My respiratory rate hovered at a median 25, and 95% at 35. FLs at 95% from 0.1 to 0.3.
After months of lurking on this forum, I discovered EERS for my CAs - and I was so grateful. I fashioned a DIY EERS with the short N20 tubing stuck to the top of my P30i with electrical tape plus extra segments of regular tubing I cut into 6 inch segments, at least until I got the Whisper Swivel II - horrifyingly difficult and expensive to obtain in Canada. Cost me 40 bucks and a month stuck in shipping. The DIY fix worked best at 12" EERS - my AHI (and CAs) fell to about 2/h. TV went up from ~350 to 500. Resp rate went down from ~20 med to ~16 med. However, the FLs persisted with a vengeance. I swapped my DIY fix for the Whisper Swivel II when it arrived, which seemed to have been even less comfortable than my DIY fix. I started taking my mask off in the middle of the night for hours at a time, and my AHI from CAs was at about 4. My primary concern was still the FLs and high respiratory rate I could not treat with EERS. It's at this point I paid attention to some of the nights I had at the beginning of my CPAP journey with snippets of sleep containing no events, a smooth respiratory rate, no FLs - and to my dismay it was at a pressure of 6 with EPR 3 (on just two occasions - but I had never seen such a perfect sleep graph for myself). And so, I commenced a new self-titration, starting at 6 EPR 3 all the way up to 10 EPR 3 in fixed CPAP mode. I spent a few nights at each setting in pressure increments of 0.2-0.4, taking notes from OSCAR and recording what I did when I had good sleeps. At pressure 7.6 EPR 3 I had seemed to reduce the sleep fragmentation due to FLs I saw in OSCAR, and going up to pressure 10 did not reduce this further. So I stuck around 7.6, trying EPR at 1, 2, 3, and off. None of these seemed better than the other and I was still getting FLs with obvious IFLs, and periods of arousal with 35 respiratory rate. Since then I've been bumping my pressure back up in increments of 0.2 to slowly work back up to 11 and higher in hopes of reducing the IFLs, with the slower adjustment letting my body be more comfortable - and so avoiding pressure-induced CAs without the need for EERS which seemed to make my sleep less comfortable. I'm finally up to a pressure of 10 tonight. You're a real hero to me if you got to the end of this paragraph
During the analyses I described above, I noticed a ton of palatal prolapse looking events - an abrupt discontinuation in the exhalation curve to a flatline at 0 on the flow rate graph followed by irregular breath/flow patterns. I've read every single thread on this forum about palatal prolapse. This month I've attempted to test this hypothesis by taking naps while at my most awake in the middle of the day. I noticed for the first time I wake up IMMEDIATELY after falling asleep and seeing a flash of a dream - with a snort and a flapping sensation at the back of my mouth. I've since replicated this by falling asleep and waking up to this sensation every 5 minutes for the duration of 30 min naps. Turning off EPR did not improve FLs in the slightest, as suggested in many palatal prolapse threads. I have a huge tongue, as evaluated by a previous GP/doc, which I thought might cause this. I have been since the start practicing "tongue mewing"/training my tongue's posture as suggested in this board to keep it from falling back into my mouth - hasn't seemed to help yet. I tried what I could - I got a tongue-retaining device which is a suction bulb into which you stick your tongue and it hangs outside your mouth. An Amazon search will bring up a picture - let me know if this is unclear and I'll post one. The tongue retainer was terribly uncomfortable. It also precluded my use of mouth tape and I again began flinging my mask off, air coming out of my mouth. I also tried a boil-and-bite "snore guard" mandibular advancement device off of Amazon. The snore-guard/MAD made my teeth hurt - which was fine - but even with mouth tape and a chin strap air began coming out of my mouth again, mask-flinging and all. The clearance between my teeth afforded by the MAD made the mouth tape and chin strap inadequate. Finally, I know that an FFM might avoid palatal prolapse - but the F30i blew up my mouth in such a way that I couldn't even fall asleep with it at any pressure above 9. I hated it - keeping in mind I put in so much effort to get used to nasal pillows after mouth-breathing my whole life - and more importantly, today, I don't think palatal prolapses are my main issue.
My sleep doc just reopened 2 weeks ago at which time I had an exceptionally unhelpful appointment with him (ratemds backs me up with 10 scathing 2-star reviews for him - but I digress). I brought up a ton of OSCAR charts and snippets which I've analyzed over the past months leading me to believe I have a mixed bag of CAs, some palatal prolapse events, and most importantly, unexplained inspiratory flow limitations. The doc informed me that CAs even at 10/h are not an issue - that they do not treat those - and that my suspected palatal prolapse events are "signal loss" on the machine's end. He ignored the flow limitations and inspiratory peak plateaus I brought up. That was that. When I brought up to my sleep doc the palatal prolapse and that perhaps it was position and/or tongue related - I was dismayed to hear from him that while my AHIs were 13, as originally diagnosed and disclosed to me - that was just on my side, and predominantly CAs. My AHIs were 35 on my back, a mix of CAs and obstructive. Sleep doc says my position doesn't matter since CPAP treats the apneas - well, I haven't found this to be the case and now I'm training myself to sleep on my stomach again and have fashioned a backpack to keep from rolling onto my back. I spent the last few months painfully training myself to sleep on my back to reduce leaks. Turns out I've been screwing myself. Go figure - at least my back feels a bit better. I've got a referral to a new sleep clinic last week, but that may take a while and I'm told Ontario insurance will not cover another sleep study.
The last 2 days I've been sleeping on my stomach. I tightened my P30i to avoid leaks - I'm used to it by now so its OK, even when tight, and my leaks are again at <5L/min but now on my stomach. I confirmed with a nap while I was fully awake that sleeping on my back causes my sudden awakenings much more forcefully than sleeping on my stomach or side. It may be of interest that I can easily make a snoring sound while on my back, but hardly at all on my stomach. However... I still get long periods of high FLs (95% FL at 0.15) and respiratory rate spiking from 15 to 30, and a sudden change from an OK-looking flow graph to a very ugly one, and finally I wake up with my heart pounding. My "awake-naps" show me this happens exactly when I start to fall asleep and dream (an effect which I was hoping would have subsided by now).
Due to the stubborn FLs and frequent arousals I continue to experience, I have suspected UARS for a while. My sleep doc didn't like this idea. I didn't like it because - well, what am I going to do to fix it? So I explored other avenues such as playing with my pressure, sleep position, and tongue/jaw. If I understand correctly, the appropriate treatment for UARS is BiPAP. Why UARS? I see tons of IFLs and poor flow rate without any events in my OSCAR graph nights after night. My IFLs appear to correspond to "Upper airway reopening after initial collapse", class 2 flow limitation from this study: [PMC4688581 until I get permission to post links ]. I see a ton of other much weirder IFLs all night. Aside from the obvious IFLs in my flow rate graph, I suspect I have mild COPD from years of rather hardcore marijuana smoking (the only thing that allowed me to sleep before CPAP) and severe bi-annual bronchitis infections accompanied by asthma. The corticosteroid inhaler prescribed by my sleep doc is helping tremendously with this... but I still have FLs. I know, I know, why did I do nothing all this time if I couldn't sleep? Well, I've been dealing with my medical issues since graduating. Really, I was just a kid before then. All I can say is that now, I'm doing my best.
And that finally brings us to today. My latest 30-minute "awake-nap" was most telling, as I slept on my stomach and still experienced arousals every 5 minutes as I dozed off into a dream, waking up immediately to a pounding heart. This corresponds to OSCAR showing a perfect flow graph and respiratory rate with no FLs for 5 minutes, then suddenly IFLs appear and respiratory rate shoots up. Repeat. I'll leave this off with some OSCAR screenshots - it's tough to pick from the hundreds I've taken for my own needs. I've tried to make it short, but in being descriptive to match the length of this post, it may seem excessive. Sorry - and again, you are a hero to me. I've included my 30 minute nap from today, and the past few nights of sleep - each with an overview and a snippet of "good sleep" periods with pretty flow rate graphs and "bad sleep" periods with enigmatic flow rate graphs. Also, a representative snapshot from just one night of what I suspect are palatal prolapses.
At this point, here's my working hypothesis: I doze off and enter REM/dream -> loss of muscle tone -> emergence of IFLs and poor flow rate -> CO2 goes up -> HR goes up -> body wakes up out of REM -> respiratory rate goes up to blow off CO2 -> I wake up. Rinse and repeat.
TL;DR: CPAP prescribed 5 months ago. 13 AHI on my side, mostly (likely misappropriated) CAs. 35 AHI on my back, mixed apneas. Have tried to optimize for 5 months myself before asking for people's time (looking at you, Sleeprider). Autoset bumping pressure to 11 and sometimes to 14. CAs, FLs, high resp rate, arousals persisted. EERS significantly reduced CAs but reduced comfort. No relief from FLs and arousals. Self-titrated from 6 EPR 3 up to 10 EPR 3. Eliminated CAs, No relief from FLs. Some palatal prolapse events regardless of pressure, mostly eliminated by sleeping on my stomach. Have been "tongue mewing"/training my tongue's posture for 4 months, have tried a cervical pillow, cervical pillow, chin strap, mouth tape, tongue-retaining device, boil-and-bite MAD. Getting 6h+/night, low AHI, but no relief from FLs and arousals. Much improved daytime fatigue but still unable to get through the day without long naps. Suspect UARS due to obvious IFLs in flow rate graph, conscious arousals with high heart rate happening corresponding to FLs, skyrocketing respiratory rate, all in a repeating pattern. Seems to be REM related. I love CPAP... but please, help me.
This post must seem absurd - I tried to keep it simple, and here we are. I've edited it for readability so much that I think it can only deteriorate now! I've done everything I could, spent countless hours this month reading OSCAR graphs and writing notes instead of applying for jobs (to which I feel I would fail the interviews unless I can figure out my sleep). I need your help. If you read any portion of this post, you have my personal and unabated gratitude - I hope to be able to pay it forward one day soon.
Cheers.
Comprehensive Imgur album with 15 OSCAR screenshots with descriptive captions: imgur.com/a/EXnYbeI
Overview of last night.
Snippet 1 from last night: IFLs and high respiratory rate.
Snippet 2 from last: I wish I knew what was going on here.