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Poor results with CPAP - thoughts?
#1
Poor results with CPAP - thoughts?
Hi, I've been diagnosed with OSA for years but never had success with using the CPAP for any length of time until recently. I started using it every night in December 2018 continuously. Was using a Resmed S9 w/Airfit P10 size L nasal pillows and Climateline tubing. Have tried numerouos masks/styles/brands including some hacks I read about it, but this was the best combo so far (I also suffer with fibromyalgia, so getting comfortable is a torture under any conditions, never mind wrapped in all this crap!). Haven't had a sleep study in several years, waiting for one now. I was changing the pressure myself to try to get something to help. Finally went back to sleep doc who told me to set it at 12. That didn't help. He suggested an EPAP might work better for me, so I bought the AirSense 10 for Her. I am attaching a Sleepyhead chart so you can see my settings. I just picked a random recent day. I am still having way way too many AHIs!

I know one night can't tell a whole story, but until I get my new sleep test and see the doc again in a few weeks, I wondered if you all had any thoughts on what could be going on. I don't have a lot of faith in my doctor to be honest... or in the overnight test! They kick me out after a few hours and say they have enough data, but I feel they need to see a whole night's sleep, including my awakening and trying to go back to sleep, etc. to get a true picture. But what do I know??

I do not remember having a good night's sleep and waking up feeling refreshed ever in my life. I'm almost 60 now, and I just can't live like this anymore! I am determined to solve this problem. For years docs having been telling me that I will never fix my other issues with pain etc. if I can't sleep decently. So for five months I have been diligently using my machine, but seeing no benefit whatsoever. I could (and sometimes do) doze off over and over all day. I can take several-hour naps and still feel awful. My schedule had been extremely erratic, and I did follow my doc's instructions to try to make it more even, turning off screens an hour before bed, using melatonin, going to bed way earlier, getting out of bed at a reasonable time and not napping. But I still didn't see any difference! AHIs still far from normal.

Really appreciate any thoughts on what I can try, or what to ask the doctor... Many thanks.
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#2
RE: Poor results with CPAP - thoughts?
Hello and welcome to the forum! Don't worry or despair...you will get the help you need here. You already made the first important step by joining this forum and posting your Sleepyhead data. So congrats to you.

My advice would be that you need to up your minimum to about 10 for now (however, you may need to go higher depending on what happens) and I would set your max pressure to about 18 to see where the machine wants to settle in at. You are spending a lot of the time close to around 13. The machine is having to make some big changes and unfortunately it can take some time to get there. The good news is you have a relatively fast reacting APAP machine so that does help to some extent.

I would also consider turning off the ramp feature at some point in the future if you can and personally speaking, I don't use pressure support. Though if you find it more comfortable it may be worthwhile to keep for now. Also, it is not advisable to change too many parameters at once or else we will not know which changes had a beneficial (or negative!) effect. For now, just adjust your minimum up to 10 and maximum to 18. Give it a few days to see what it settles in at.

One other thing to consider is what kind of pillow you are using. I am seeing some clusters of Obstructive events which could indicate chin tucking. Are you using a very soft deep pillow? If so, I would consider switching to a more shallow and firm one with either memory foam or buckwheat husks as a filling. Some members with more severe positional events have experienced great success by using a cervical collar, the very soft cheap foam kind easily purchasable at Walmart or online. You may or may not benefit from using one but I would start with a harder and much more shallow pillow to start.

Best of luck!
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#3
RE: Poor results with CPAP - thoughts?
I will try resetting the pressure for a few days. I do not have the ramp setting on,  but I do have the "auto-ramp with sleep sense detection" on. I used to have ramp on 45 minutes, but I thought with this if I fall asleep faster it will kick up to the correct pressure sooner. I will leave that for the time being, I agree that changing multiple things at once only causes confusion.

I set the EPR high to make it more comfortable, but I do think it allows for more obstruction. Even when I'm awake sometimes and relaxed I suddenly snore or choke out my breath, so there is definitely something physical collapsing back there! Again I will wait a few days after changing pressure to deal with this.

My pillow is a fairly thin memory foam supposed-to-be-cooling pillow. I sweat buckets so don't think it's working very well, lol. I can't go with anything firmer, even with this one the pressure on my ear resting on it is too much! My Princess-and-the-Pea disease makes all this quadruply difficult. *sigh* I think the collar would make a huge difference, actually, if I could actually get used to it. I definitely end up very chin-tucked. I try to remind myself to straighten my neck, but again, assorted pains/discomforts have to be fought. I know back-sleeping is not good for me, and I prefer side-sleeping, but have torn rotator cuffs that cause shoulder pain, and I end up on my back at some point every night. So many conflicting issues!

I really appreciate your help. I will start with the pressure change tonight and check back in soon!

Amy
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#4
RE: Poor results with CPAP - thoughts?
I hear you about the EPR....I too have had similar feelings to what you experienced using EPR and to boot, it seemed to increase my CA events somewhat. Your pillow does sound fine. I would definitely try the soft cervical collar route. Again, you don't want something too firm or even too tight around your neck, but supportive enough to prevent you tucking your chin in.

Good luck and keep us posted!
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#5
RE: Poor results with CPAP - thoughts?
I see snoring going on, and not a little of it.  The possibilities range from congestion to wrong mask (sorry if you have settled on one that you can tolerate well), to chin position, and on to mechanical problems from the nose and palate on down to the bronchia.  As already pointed out by marillion, even the pressures could be insufficient.

I won't suggest a remedy as I am not very adept or knowledgeable, but you'll get advice from at least two helpful and experienced members here.

Welcome to the forum.
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#6
RE: Poor results with CPAP - thoughts?
(04-29-2019, 02:49 PM)mesenteria Wrote: I see snoring going on, and not a little of it.  The possibilities range from congestion to wrong mask (sorry if you have settled on one that you can tolerate well), to chin position, and on to mechanical problems from the nose and palate on down to the bronchia.  As already pointed out by marillion, even the pressures could be insufficient.

I won't suggest a remedy as I am not very adept or knowledgeable, but you'll get advice from at least two helpful and experienced members here.

Welcome to the forum.

Thanks, Mesenteria. That's part of the frustration, obviously there are so many possibilities to deal with. Only some are under my control. So I will start here with adjusting pressure, etc. I can try to rule in/out whatever I can before reporting back to the doctor!
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#7
RE: Poor results with CPAP - thoughts?
First night after changing pressure. Interesting... I upped it to 10/18 and turned ramp off. It was a little weird when I put the mask on and my nose was puffing out, but not really uncomfortable, so I fell asleep in a "normal" amount of time. But I woke up having an "episode." Don't know what to call it, it happens maybe every few weeks. I wake up suddenly, in the midst of intense weird dreams, and feel like I am hallucinating. Not so much the dream images, but after I wake up, there are crazy spots and flashes of colors flying around in my head, often overlaid on the dream images which don't disappear when I wake up! It takes like 10-15 minutes before it all settles back down to normal. I feel like my pulse is racing, but in fact I don't think it is. I feel like I am suffocating, which I also don't think I am. Usually I rip the mask off and start taking deep breaths. Last night I kept it on for about 10 minutes, deep breathing through it. I noticed I had been sleeping on my right side, and my right nostril was completely blocked. This shouldn't have made any difference, since my left, upper nostril was free and open. This leaves me feeling extremely anxious, and I end up getting out of bed and doing stuff until it all fades away, then go back to sleep. 

I am attaching two charts - the regular one, and then one zoomed in around the time I woke up, so you can see if there's anything obvious that could be triggering this... I don't see anything, but don't know what I'm looking at anyway. I did go back to sleep with machine for a while, but also ended up dozing off later on the couch for an hour, then on a chair for 20 minutes... could lay right down and sleep again now, but will try to stay awake until bedtime. 

Anything look interesting here?

Also got a call finally from the sleep center, telling me they are waiting for approval from my insurance company, which could take up to 14 business days... Sad. When they call to schedule, I am going to tell them I need to stay there until 8am, not be kicked out at 4 or 5 or whenever I wake up. They say they have enough data by then. But my most intense sleep is generally between 5-7am, when my snoring is worst, my dreaming is most intense, and whatever weird things might happen will show up. My last sleep test I never even reached REM stage! Hope they won't give me a hard time about it.
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#8
RE: Poor results with CPAP - thoughts?
Most of your Obstruction is positional,  Try an anti-snoring collar, (Dr, Dakota is popular) It is similar to a cervical collar but just a strap in the back.  This will give you the biggest bang for the buck in reducing your AHI.
You do have significant snores, flow limitations and even some RERAs, which by definition is a series of flow limitations ending in Arousal. 
I would set your min to 11

On EPR, your therapeutic pressure is always the exhale pressure, so on CPAPs or APAPs be aware of the fact that EPR drops the EPAP by the increase in EPR.  This can cause some issues if you are not careful.
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#9
RE: Poor results with CPAP - thoughts?
Thanks, Bonjour. This is all confusing but interesting. I've always been told to train myself not to sleep on my back, but for neck crunching, back is definitely better. And with a collar I think this will be most likely the way I'll end up. I ordered the collar, but won't get it for about a week. I think it's odd that my charts indicate snoring, my husband hasn't heard me snore in months. I think it's just that he's finally able to sleep since I am using the CPAP, so he doesn't notice it! And I don't think my mouth falls open, since I clench my teeth firmly while sleeping and often while awake too! Always trying to remind myself to relax my jaw! And now I'm buying something to keep my jaw up... Will try one more night at pressure 10, then consider upping it again. 

Appreciate everyone's help while I learn what is going on with my body.
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#10
RE: Poor results with CPAP - thoughts?
As always, Bonjour has great advice!  Going up to 11 as a minimum is a great idea.  I would also consider dropping your EPR from 3 to 1 or even turning it off entirely if you can.  If not.  Just try it at 1.  I myself don't use EPR at all as I found it would cause / influence events and I always got better results without it.  I would allow for at least 3 days to see what these settings do for you.
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