Seeking Advice Adjusting to CPAP (unique anatomical considerations)

[Zana]

Hi all,

I'm a 35 yr, mildly overweight individual that was recently dx with sleep apnea about 1 month ago. My original test was a home test that should AHI of 14.5. I am also a RN so I am bound and determined to make sure I eventually get used to it. However, I am having some peculiar issues adjusting and I am hoping for some suggestions.

You see, I have some unique anatomical problems. First and foremost, my nose and nasal patency are destroyed. I had a septoplasty around 20 yrs ago and 2 weeks after the procedure, my sister decked me square in the nose. We didn't have the money to get it revised and during adulthood and I put off getting it fixed due to busyness with everything else. That said, I've seen an ENT and was told it was so bad I need to see plastics. Thus I am waiting for that to occur.

All that said, I am a mouth breather out of shear necessity. The equipment I was provided included a Luna G3 APAP set at 6-20cm and originally a ResMed Airfit20 Full face. I found it incredibly uncomfortable so I was sent a F&P Evora Full Face. Good news is that It feels good. My device is showing 0.1 leak so I feel like I have a good seal. However, I am having a terrible time adjusting to the therapy as I am a light sleeper who additionally has back problems that often keep me awake. My issues are the following:

1. Chipmunk cheeks: I've read a lot about this on this forum, but most users report it in cases of nasal breathing. As I am forced to breath out of my mouth, it is especially bad and it makes exhaling very difficult. EPR has to be set pretty low because it exacerbates the ballooning feeling on my face. I've started shoving a pillowcase between my straps and cheeks with some success, but I am open to other user suggestions.

2. Sudden Arousal near the edge of sleep: Right when I near sleep I am overcome by a startling feeling as though I am suffocating. The strangest part is it is always accompanied by dizziness. Based on the machine readouts though, my AHI was only 1.8 with a CAI of 0.8. This one baffles me. Anyone with experience in dealing with similar issue is welcome to chime in.

3. Obvious one, Dry mouth: I know this is a common complaint in mouth breathers. I have my humidity set to 2 but more than that, I often wake coughing. Has anyone tried Biotene with any success?

4. Aerophagia: I've started wearing it during the day in an attempt to get used to it, but even wide awake, my machine raises it pressure to 10cm or more. My ramp of feature is turned off so i'm not sure why this is happening. Once I hit around 10cm, breathing becomes uncomfortable and I start to get stomach bloating. Obviously, this makes trying to sleep all the more difficult. Ramp up feature has not helped, as it always ends up occurring before I fall asleep

All of these add up to ~ 4hrs sleep total a night if that. I am getting discouraged but I know the importance of sticking with it. Suggestions would be greatly appreciated. Thanks for reading

[zonker]

3. Obvious one, Dry mouth: I know this is a common complaint in mouth breathers. I have my humidity set to 2 but more than that, I often wake coughing. Has anyone tried Biotene with any success?

welcome to the zoo!

and YIKES! makes me glad i never had a sister.

#3 is the only one i can really help with. i use xylimelts. tiny discs that fit between cheek and gum. they adhere all night and slowly melt to stimulate saliva. i use two.

others will come along to help with the other issues. i warn you that it may be hard to give you the best responses as here in the forum, we don't see a lot of luna machines.

any hoo, good luck!

[ChicagoGranny]

I've seen an ENT and was told it was so bad I need to see plastics. Thus I am waiting for that to occur.

Given that you are having a difficult time and assuming surgery will make it easy to breathe through your nose, you might want to consider putting off the use of CPAP until after you recover from surgery. If so, you should avoid back-sleeping. Typically, obstructive sleep apnea is much worse when back-sleeping.

I've started wearing it during the day in an attempt to get used to it, but even wide awake, my machine raises it pressure to 10cm or more. My ramp of feature is turned off so i'm not sure why this is happening.

The machine algorithms are designed to control the pressure when we are sleeping. Awake-breathing tends to be irregular and very different from sleep-breathing. The algorithm is unsuitable for use while awake.

[Miss Emerita]

If your ramp is off, your machine will in theory start at the minimum pressure you've set and then go up if and when it detects signs of obstruction (obstructive apneas, hypopneas, snores, flow limitations). This will happen whether you're asleep or awake.

I wouldn't be surprised if your nose structure causes flow limitations, so that may be what the machine is responding to.

When you're using the machine while you're awake during the day or evening, just set your maximum to 9 so you'll keep yourself comfortable. Google <how to reset pressure on a luna cpap> to see how to do that, if you don't already know.

In fact, just an experiment you might try sleeping at night with a max of 9 and see what happens to your AHI. If the pressure is driven up mostly by those flow limitations, then your AHI might not be very different from what it is now. But if you try the experiment, you'll know one way or the other.

That business of startling awake is probably a sleep-transition issue; your neurochemical systems perform a complicated handshake as the daytime controls hand off to the sleep-time controls. With just a little luck, this will resolve itself on its own.

The wonderful Oscar software could tell you whether your couple of CAs were coming while you were falling asleep, but unfortunately Oscar doesn't work with Luna machines.

[Zana]

#3 is the only one i can really help with. i use xylimelts. tiny discs that fit between cheek and gum. they adhere all night and slowly melt to stimulate saliva. i use two.

Thanks for the suggestion, I ordered some on amazon and I am excited to try them out.

Given that you are having a difficult time and assuming surgery will make it easy to breathe through your nose, you might want to consider putting off the use of CPAP until after you recover from surgery. If so, you should avoid back-sleeping. Typically, obstructive sleep apnea is much worse when back-sleeping.

The machine algorithms are designed to control the pressure when we are sleeping. Awake-breathing tends to be irregular and very different from sleep-breathing. The algorithm is unsuitable for use while awake.

If I had a better time frame on how fast the surgeon can fix me, I might be inclined to do so. However, Being a RN, I've seen several horror-story patients that have had their lives ruined due to sleep apnea. One such person became paralyzed after falling asleep at the wheel because they had undiagnosed sleep apnea. Now that I am positive that I have significant desaturations and even though I'm classed just inside of moderate range, it is something that frightens me enough to be determined to get this working in the interim.

As for the wakeful algorithm, you make a good point. My pressures when I do actually fall asleep seem to peak around 8cm.

That business of startling awake is probably a sleep-transition issue; your neurochemical systems perform a complicated handshake as the daytime controls hand off to the sleep-time controls. With just a little luck, this will resolve itself on its own.

The wonderful Oscar software could tell you whether your couple of CAs were coming while you were falling asleep, but unfortunately Oscar doesn't work with Luna machines.

Yeah that startle reflex feels so strange, as it doesn't occur when I fall asleep without the cpap. The dizziness is also unique and it makes me wonder if it's an inner-ear thing or possibly even hyperventilation preceding a CA event. It occurs on my side or back. I noticed that if pressure is 8cm plus, my nose gets some airflow. I wore a oximeter to see what was going on and on my back, the reading is floored (100%). However when I'm on my side, it occurs as well. During those periods my nose is utterly useless and I've seen it dip to around 93%.

It makes me wonder if I am not having significant CA. I will say that even while awake, I often hold my breath unintentionally, especially during concentration. Makes me wonder if I've been living so long with this crap nose that my body has fallen into a bad routine.

It truly bums me about the Luna not being Oscar compatible. I wonder if I should get ahold of the company at try to exchange for a BiLevel machine that is compatible?

Anyways, thanks for your replies everyone

[ozij]

Welcome, Zana. Your determination is a great asset.

1. Chipmunk cheeks: I've read a lot about this on this forum, but most users report it in cases of nasal breathing. As I am forced to breath out of my mouth, it is especially bad and it makes exhaling very difficult. EPR has to be set pretty low because it exacerbates the ballooning feeling on my face. I've started shoving a pillowcase between my straps and cheeks with some success, but I am open to other user suggestions.

I find the quoted part of your description totally confusing.

• Chipmunk Cheeks: I only get those when my mouth is closed, and airs escapes from my nasal cavity into my closed mouth. When I open my mouth in a full face mask, I have no such problems. But you seem to get no air through you nose - so how are you getting your cheeks full of unexhaled air? Can you explain what you're talking about? Do your cheeks blow up when your mouth is open?
• The higher the EPR (exhale pressure releif) the easier it is to exhale - yet you find it more difficult?

Why are you thinking of switching from an APAP to a bi-level?

Aerophagia: Starting at lower pressures and letting yourself get used to higher ones gradually can help getting over the aerophagia.

[Zana]

• Chipmunk Cheeks: I only get those when my mouth is closed, and airs escapes from my nasal cavity into my closed mouth. When I open my mouth in a full face mask, I have no such problems. But you seem to get no air through you nose - so how are you getting your cheeks full of unexhaled air? Can you explain what you're talking about? Do your cheeks blow up when your mouth is open?
• The higher the EPR (exhale pressure releif) the easier it is to exhale - yet you find it more difficult?

Why are you thinking of switching from an APAP to a bi-level?

Aerophagia: Starting at lower pressures and letting yourself get used to higher ones gradually can help getting over the aerophagia.

Yes indeed ozij... Chipmunk cheeks can occur quite prevalently even in mouth breathing cases (as it does for me). Most of the complaints of chipmunk cheeks reference your experience, as I'm sure the vast majority of people have relatively patent nasal airways. However, that doesn't mean they "only occur" in those cases. I suspect that it has to do with the incoming pressure from the cpap being considerably higher than the atmospheric pressure outside of the cheeks. It has occurred on both full face masks I've tried (Resmed Airfit F20 and F&P Evora Full Face). I suspect that the reason that you aren't experiencing the same thing to the magnitude that I am has to do with the fact that you have nasal patency which allows the pressure to equalize more effectively inside of your mask when you open your mouth. It could also be differing facial anatomy or even a mask fitting you better than it does me. Regardless, it happens very badly to me if the pressure exceeds 8cmH2O which is not only terribly uncomfortable, but also considerably harder to exhale against. It feels like I'm literally trying to blow up a balloon. Not at all conducive to falling asleep . It doesn't affect me as badly if my pressure remains <8cm but as soon as it goes above that, I turn into a human balloon. That is why I'm reaching out for suggestions from other primary mouth breathers that may be in the same boat for adaptive strategies that help them compensate.

As for the EPR on my Luna G3 APAP, having it on at all makes that problem FAR worse then stationary pressure setting. For example, if the machine decides that I currently need a pressure of 8cm, it will remain relatively close to 8cm regardless of whether I am inhaling or exhaling (less variance). However, when I turn on the EPR my machine makes the mouth ballooning problem WAY worse even on 1. The reason for this is that instead of having the inhalation pressure set to the current baseline of 8cm and just reducing the exhale pressure come time or my exhale, the machine ramps my pressure way up from baseline. Instead of providing my needed pressure of 8cm on inhale, the pressure shoots way up to 11 or 12cm on inhale and drops considerably below the 8cm baseline on exhale. This creates a sudden, forceful change in my mouth pressure which in turn makes the mouth ballooning absolutely terrible. It feels like a stinking seesaw in my mouth! Also not conducive to sleep.

That is why I asked other more experienced users about maybe switching machines. I'm not sure if all machines EPRs function similarly to my machine by seesawing back forth or if others will stay closer to the current needed pressure on inspiration and just reduce it slightly on expiration.

As for the switch from APAP to BiLevel, my patients always tell me it is far more comfortable than CPAPs with EPR. They tell me the change from high to low isn't as uncomfortable. Whether that would be true in my experience, who the heck knows. Add that with me potentially experiencing CA's more often than obstructions, I am curious if other experienced users thought that I might benefit from the switch.

[ChicagoGranny]

Chipmunk cheeks can occur quite prevalently even in mouth breathing cases (as it does for me).

The way this slang term is used it refers to the cheeks ballooning when the lips are closed air tight. The cheeks balloon out. When the mouth is open inside an FFM, the pressure is equalized and the cheeks will not balloon.

Instead of providing my needed pressure of 8cm on inhale, the pressure shoots way up to 11 or 12cm on inhale and drops considerably below the 8cm baseline on exhale.

This is a unique case. No machine is designed to do that. It would be good to see graphic examples on your OSCAR flow line. A bilevel machine would allow you to set a greater difference between inhale and exhale pressures than the highest EPR setting. This would seem to make the problem you are complaining about worse - a bigger pressure jump on inhalation.

They tell me the change from high to low isn't as uncomfortable

This is not true, see the previous paragraph.

Add that with me potentially experiencing CA's more often than obstructions

How do you know they are central apneas? How many are you actually having? How long are they? (Click the Events tab in OSCAR.) Are you familiar with transition apneas. The machines report these as CAs.

[Pugsy]

(Click the Events tab in OSCAR.

The equipment I was provided included a Luna G3 APAP

I don't believe that the Luna will work on OSCAR.


There is some sort of software available though. I am not familiar with it at all.
https://www.apneaboard.com/forums/Threa ... ts-Meaning
The above link may require a person to be a registered member and logged in at the apnea board forum to see the information and get the links to download the software that will work on the Luna

[ozij]

Let's try to focus on some things we can all agree on:

There's no OSCAR support for Luna machines.

You, Zana have trouble exhaling when the pressure is higher than 8.

When you set the machine to what you think is exhale pressure relief, it behaves in a way that sound like it's set on automatic pressure adjustment.

When the inhale pressure is higher that 8, while using a full face mask, your cheeks blow out.

And, at a pressure higher than 8 you get aerophagia.

[ozij]

https://www.directhomemedical.com/machi ... manual.pdf
The term "EPR", Resmed's term for pressure relief does not appear in the manual.

Reslex
A therapy feature that is enabled by your home care provider to provide pressure
relief during exhalation

Do you have the clinician's manual for the Luna? Can you tell us how the Reslex functions?

[stevenal]

I can see having a pressure differential across the cheek with an open mouth and FFM. Atmospheric pressure outside and therapy pressure within. Perhaps there's a FFM that covers more of the cheek keeping it all equal?

[ozij]

Here's a video about setting up the Luna 3G APAP
At 4:37 he disucsses Comfort settings.
https://www.youtube.com/watch?v=pAyIaMNvXlM

[Zana]

1. The way this slang term is used it refers to the cheeks ballooning when the lips are closed air tight. The cheeks balloon out. When the mouth is open inside an FFM, the pressure is equalized and the cheeks will not balloon.

2. This is a unique case. No machine is designed to do that. It would be good to see graphic examples on your OSCAR flow line. A bilevel machine would allow you to set a greater difference between inhale and exhale pressures than the highest EPR setting. This would seem to make the problem you are complaining about worse - a bigger pressure jump on inhalation.


3. This is not true, see the previous paragraph.

4. How do you know they are central apneas? How many are you actually having? How long are they? (Click the Events tab in OSCAR.) Are you familiar with transition apneas. The machines report these as CAs.

1. That's quibbling over semantics, but if it makes you feel better, we won't call it chipmunk cheeks in this case. Stating thatt they "will not balloon" as a matter of fact statement when I'm telling you that is exactly what is happening to me is not helpful commentary. A short search of this forum contains several users stating trouble with the exact same problem. The fact is, my cheeks "balloon" out severely at pressures over 8cm when breathing out of my mouth. It does "NOT" equalize which is why I am asking for assistance in the first place. Perhaps it's attributed to the severity of my nasal obstruction which creates a pressure variance preventing equalization. It's more severe on back but happens in side positions as well. Regardless, it freaking sucks because falling asleep with my face blowing up like a balloon is nearly impossible! Simply telling me that my experience is not valid is a pretty crap way of addressing someone looking for advice.

2. That is what my machine is doing.... That is why it feels so uncomfortable. It shoots up to 12-13cm from 8cm when the EPR is on and shoots down do ~ 6ish on exhale. This causes the mouth ballooning to be more severe. That's why I just leave it off all of the time as it is the most comfortable. If machines aren't supposed to act that way, then that is helpful information as I could address this with my supply company. As far as the BiLevel being more comfortable, I'm just reporting what my patient's have told me feels the most comfortable. I presumed that the enhanced sensor suite may make the transitions between the two pressures less jarring. However, Since I've not had the dang thing on my own face, I can't state what my experience would be. If you've personally used one and are telling me that you don't think it'd be more comfortable, then this is also helpful information.

3. Fair enough, see previous paragraph.

4. How do I know I'm having central apneas? My composite AHI score is consistently > 75% CAI according to my current machine. Compound this with the research that seems to match my jarring symptoms of sudden startling with the feeling of acute dizziness and sudden SOB sensation near the wake/sleep transition, it makes a good case for the possibility. It almost feels like I'm suddenly falling, a good description of vertigo. See this study from the NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7725531/. There are several medical journals describing this subject. This morning I had 6 of these episodes (CAI) out of AHI 7 while trying to fall asleep, and thus had terrible difficulty falling asleep . Now, I can't say for certain that this is happening since my machine is not OSCAR compatible (dang it) and I can't run my own polysomnogram at home. It is concerning and frustrating none-the-less. That is why I wanted to see if individuals with personal experience with BiLevels or ASV (either nasal or mouth breathers), felt more comfortable using the machine as if I don't acclimatize to the CPAP due to this issue, I may be required to get one regardless.

[Zana]

I can see having a pressure differential across the cheek with an open mouth and FFM. Atmospheric pressure outside and therapy pressure within. Perhaps there's a FFM that covers more of the cheek keeping it all equal?

May be, I've seen the literal Full Face mask from Phillips but it appears to slope in more quickly around the cheeks as well. Wouldn't be sure unless I tried it. Maybe I just need a CPAP Helmet! I've had the company send me 3 masks already to try so I kinda feel bad for asking for another lol. I will say that outside of the mouth ballooning on any of the masks, I have found the F&P Evora Full Face to be pretty comfortable. It's the only one that I've been able to get any sleep on. I'm thinking jerry-rigging may be my best option for the mouth ballooning. Maybe I'll sew some fabric covered cushions to hold my cheeks down.

Let's try to focus on some things we can all agree on:

There's no OSCAR support for Luna machines.

You, Zana have trouble exhaling when the pressure is higher than 8.

When you set the machine to what you think is exhale pressure relief, it behaves in a way that sound like it's set on automatic pressure adjustment.

When the inhale pressure is higher that 8, while using a full face mask, your cheeks blow out.

And, at a pressure higher than 8 you get aerophagia.

Well what really causes the issue at > 8cm is the mouth ballooning issue more than anything. If I go to hold down my cheeks and keep the EPR off, it 8cm is pretty tolerable. When I do finally fall asleep, my machine is reading my average pressure of around 6.5 +/- 0.5 during actual solid sleep which creates no ballooning at all fortunately. It's the dang falling asleep that currently presents the biggest challenge between the mouth ballooning and my sudden starling accompanied by substantial dizziness/vertigo when I near the edge of falling asleep. The machine tells me these are likely CA events and they are very uncomfortable.

Now, the EPR subject. Pardon, I was using the EPR term as a generic description for the function. On the Luna machine, it is called "Reslex" which is the machines form of expiratory pressure relief. My machine is on auto-cpap mode but I find the adjustments that the machine normally makes to be completely tolerable, as it raises it quite gradually. This is with both the "ramp-up timer" and EPR off. What the machine is doing with the EPR on at all, even at just one, is creating a rapid, large influx in pressure every inhale. For example, if the machine senses I need 8cm to maintain my airway, with the EPR off, the pressure stays very consistent. However, if I turn the EPR, on every breath that I take causes the pressure to rapidly shoot up all at once. Even though my body tells the machine I need 8cm, when I go to inhale the pressure of the machine skyrockets to 12.5cm or higher in an instant, and then falls to about 4cm on exhale. As I get ballooning starting around 8ish, as you may imagine a sudden influx or pressure all the way to 12-13cm when the machine knows I only need 8 creates awful seesawing sensation in my mouth, lungs, and makes the mouth ballooning terrible! It doesn't seem like the machine should behave this way which is why I was hoping others would chime-in regarding the subject. I've taken to just leaving the EPR (known as Reslex on the Luna) off entirely rather than becoming a human puffer fish.

Aerophagia really only seems to get really uncomfortable when I start hitting 9.5-10cm >. I will say that when I do actually fall asleep for a substantial amount of time, I still wake up with stomach gaseousness even though my average is only 6.5 +/- 0.5. Fortunately if I leave the EPR off, I never really hit 9.5>. It'd just be nice to have an EPR that may increase my comfort level instead of making it tremendously worse.

Regardless, thank you guys for providing aid. I can't/won't fail at this, so I appreciate the support.