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new to cpap struggling and flailingMom
new to cpap struggling and flailingMom
Hello, first this board is amazing, I have been reading and reading here this week trying to get up to speed.

I'm really struggling to keep the mask on for any amount because I keep suffocating, jerking awake, over and over, it's awful.  I'm on a resmed 10 auto, dreamwear frame, first a nasal cushion, now trying pillows and tape because air kept flapping and burbling out of my mouth waking me up.  The tape mostly solved that part, but I hate it, perhaps I should try the dreamwear full face. But aside from the mouth flapping thing, I really struggle to just fall asleep at all on the machine because I start to drift and then it seems like my breathing gets really slow and then I suffocate and have to take a deep breath to recover. If I do manage to drift off, I jerk awake a moment later suffocating.  It is very distressing and anxiety producing. I tried turning up the min pressure thinking not enough air was getting through but it didn't help.  I'll be so grateful if anyone can help.  

I just figured out the Oscar thing (a little bit) and got the sd card reader etc and have a chart from the last two nights, which I'll put here.  The first chart has a long break where I had taken the mask off.  The second is only for a couple of hours.

Pre cpap sleep study was  AHI 26.7.  The study was 6 hours OA 43, Central 10, Hyp 106. Subjectively, I wake up with a headache and groggy AF most days which is why I went in for sleep study.  I'm 52 and a skinny long distance runner if that has any bearing.

THANK YOU so much for all this information here and for Oscar, because wow the dribble of info from the little Myair app they give you is basically useless.


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RE: new to cpap struggling and flailingMom
Sit up during the day, reading or watching tv, with the mask and machine on. This will get your body and mind used to the dang thing.

As you sit there, fiddle with your tongue to find the position where air is not entering your mouth. Opal Rose has a signature (or used to) that describes a tongue technique to help with lip leaks.

Mentally tell yourself that you are not starving for air. That there is enough coming to you. More than enough, actually.

If you have ramp turned on, consider turning it off. This gives you full starting pressure after just a few seconds and assists with the "I can't breathe" feeling.

Some people can get their new machine, turn it on, and settle right in. Others struggle. And both are okay.

As for those high CA counts, don't concern yourself with those just yet. It sounds like you are just starting out. Many of us have "CPAP induced central apnea" when first starting. The vast majority of the time, these go away with use. So don't focus on those right now.

Take a deep breath and count to zen.

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RE: new to cpap struggling and flailingMom
(06-27-2023, 03:59 PM)PaulaO2 Wrote: ........ Opal Rose has a signature (or used to) that describes a tongue technique to help with lip leaks.

Yep, here it is:

Tongue Suck Technique:
Place your tongue to the roof of your mouth with tip of tongue behind front teeth.  
Gently suck upwards and back.
This places the tongue in a natural position, with the back of tongue sealing the back of the throat so that if your mouth/jaw drops open while sleeping, no air will escape.

Understand that it takes time to master this, but if you have the patience to practice this, it is well worth it.
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RE: new to cpap struggling and flailingMom

Paula02 and Opal Rose are getting you headed in the right direction for sure. The Tongue Suck technique takes dedicated effort but so worth it in the long run. I've been practicing it for over two months, during the day when I think about it and each night as I drift off to sleep. Just recently have been seeing it payoff, actually woke up due to pressure going a bit high which normally would have had me all chipmunk cheeked out, or even motorboating through my tape and chin strap. Took a bit to wake up, wondering what was wrong. Hah! nothing was wrong, it was right, my tongue was firmly planted on the roof of my mouth sealed tight. it's not that way every time but certainly improving.

Good luck! Keep at it, that's how we get good at it.
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RE: new to cpap struggling and flailingMom
Many people experience more central when using EPR. I WOULD try a night turning OFF the EPR and see if that helps.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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RE: new to cpap struggling and flailingMom
Thank you all for your replies. I will try to calm down and hang in there lol. The thing about new people getting central apneas for a while is helpful. Thank you!
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RE: new to cpap struggling and flailingMom
Update and a question.

Update first, things have improved, AHI is regularly under 5 instead of 10 or 15 that first week or two. I added tape, which I hate, but after several nights of an hour on/hour off experiment examined with Oscar, tape is undeniably effective at reducing all events. I'm trying different kinds to improve the experience any amount.  Either way, my nervous system is starting to not pay so much attention to the octopus on my face and just breathe, so anxiety is less.  Thanks all who encouraged me to stick it out.

Question 1: I am posting last night's oscar which has O2 stats from a wellvue ring--which I got to help with anxiety because I figured look, self, if I've got O2 clearly I am breathing enough whatever it feels like!--and it shows several drops to 93-94.  I def wake up many times a night, even though my events are much lower than sleep study (AHI was 28 with apnea in of 9 and hyp index of 18).  From the chart it looks like the pattern is: I have centrals while trying to fall asleep, maybe a hyp right as I drop off, o2 goes down to 94%, the pap kicks in to max pressure, then I get into deep sleep for a bit, pap pressure drifts down, then I wake again. Repeat. So, is that accurate reading of oscar? (break in the line at around 1:20am is drinking water)

Question 2: I'm including a zoom of right after I fell asleep the first time, low o2 and a hyp to show that mashed wave form. Is there cause to try to do anything to move more towards a nice rounded wave form?  All of my flow rate graphs look like this, all nights, kind of sat-on-fedora jagged mushed lumps.

(I took the mask off the second half of the night to see what o2 would do without it, actually suprised it wasn't worse? makes me wonder if the cpap is worth it? But those sleep study numbers....)

Thank you for your insights!

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RE: new to cpap struggling and flailingMom
Hello, not struggling and flailing quite so much, lol.  Reading here has been so helpful.  I am adjusting to dreamwear pillows, can barely feel them, and NOT getting up with a headache everyday is amazing. So I'm pretty sure from an O2 perspective, therapy is working.  However I am waking up so often in the night. Last night was 9 hours in bed, 7.5 hours of actual sleep, but I woke up six times in there. I know I woke because I either take the mask off or I breathe sharply for three or four breaths to mark the flow rate line to show "I was awake here!" It's these little messages from my sleeping self because I do not remember all of these.  It's surprising how many of them I find in Oscar the next day, but I think it explains why I am so tired.  A couple are the usual culprits (drink water, pee), a lot are tape blow outs (still trying to optimize this, am having to apply new tape two or three times a night though from it just coming undone, I' using cover roll stretchl or medvance silicone or some of both), and some are just...mysterious. I'll post two of those.  Maybe it's flow limits?  Would that wake someone? If so, how to fix. I'm not waking from dreams that I'm aware of.  I have minimized the pressure swings by narrowing the pressure range, I've got EPR on 2, I'm reasonably happy with my settings unless you all see something off, I've added some melatonin, tricked out my mask with fleece covers. Maybe I just need more time to get used to it.  I am six weeks in at this point and very, very tired.  Any guidance is so appreciated.  Thank you!

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