CPAP therapy plain not working (various problems)

[Carleton]

Hi Djonne,

Sorry the F30i didn't work for you either. That's what I'm using now and love it.

First I tried a nose mask for a week and the air shot out my mouth like you said. Upset the wife, irritates all the tissues, and didn't wake me up until it woke her up.

Then I did the full facemask thing for a week. But no matter how I adjusted it, the mask would badly beat up the bridge of my nose. I looked and felt like I'd gone a few rounds with Mike Tyson and just couldn't wear it. I did buy a Boomerang nasal pad that makes it usable, but I much prefer F30i.

What I did to pick a mask was looking for youtube reviews of masks, and trying to find a reviewer with a similar shaped face to mine! The Lanky Lefty's face fit the bill and he gave glowing reviews of F30 and F30i. I think he said if you have a broader face and want that style of mask, the Dreamwear could be a good option.

Hope that helps a bit! I'm still trying to figure out my own CPAP so am not qualified to answer any of your other questions.


-Carleton

[Jlfinkels]

To throw an idea out for you to consider, I was having issues with air blowing out my mouth with nasal pillows which would wake me up or get me an elbow in the ribs from the boss. I tried tape and was not comfortable with it. I tried 4 different chinstraps as well with no luck, Zonker turned me onto using a cervical collar which has made all the difference for me effectively stopping my mouth leaks or dropping them to a level that it is no longer an issue.

Hang in there. We all have suffered frustration while getting the hang of this whole CPAP thing. It just takes time to find the right mix of things. Trust the smart folks on this forum to offer sound advice as they’ve all been through it as well.

[Djonne]

Thanks for your input! I've also watched a LOT of Lanky Lefty's videos on YouTube.. he's the main reason why I tried taping my mouth and also why I've been using fixed pressures with no EPR since he really seems to say that it's better than using APAP with EPR... which is really the opposite as what everyone's been saying here. I find it interesting AND confusing that he who seems to be an absolute expert in the field has such a different opinion regarding these things.

Actually the F30i and F30 masks aren't THAT terrible, but I totally hate the sensation of the mask pushing against my lower teeth... I can take any nasal mask without a problem... using a full face mask permanently will be a last resort for me. Also, every study ever seems to point to the fact that nose breathing is much better, so I'm trying to train myself to do that, but I haven't had any luck. Maybe the fact that I've been obsessing over this and trying different settings on the machine every night really makes it worse. Maybe if I kept the same settings and stopped worrying, things would improve! hahaha

Also, Carleton, when using the F30 or F30i, I was getting much more minimal leaks from the mask as well.. it's the comfort or lack thereof that's really, really annoying. But even with my N20, no matter how much I TRY to make it leak, it doesn't.. so my issue is really me opening my mouth and spitting air and not the mask itself since the mask is very very well sealed and also very comfortable. My results aren't that good, but they're still way better (about half the AHI) compared to when I was using the N30i and the P30i, although those were quite comfortable as well!


Anyway, I think I'll try the 8-12 pressure settings with EPR AND taping my mouth with Hypafix for a few nights and see where it leads. It's true that everyone that I know except me has had good results with auto mode... I have a few friends that use APAP and have AHIs below 1 every night... but they're people who've always slept well apart from their apnea problems... on the other hand I've had sleep problems for my whole life.

Oh and since I'm thinking about the sleep problems I've had for my whole life, I thought I could add that even when I was a kid and teenager I would most likely mouth breathe on most nights since I remember always waking up with a super dry mouth and disgusting taste in my mouth that only orange juice would take away So maybe it could take quite a while for me to get used to keeping my mouth shut if I've been sleeping with my mouth open for the past 30 years?!

[Carleton]

Hi Djonne,

I hear you! Recommendations for EPR are all over the map in videos too, and that probably just speaks to how different everyone's needs are. I've got another thread going here about my journey if you want to read. I'll keep an eye on this thread too in case I think of anything helpful to share.

Do you think your F30i Facecushion AND Headgear were the correct model sizes for you?

I have not had any success without EPR yet. Maybe once I actually tolerate the therapy I will try turning EPR off again. I'm hoping that since my pressure needs are quite low (I REALLY don't think I have obstructive apnea like my sleep test indicated), my Airsense 10 will keep working for me to some degree as a po' man's bilevel. I think it would take me a lot of conditioning to learn how to continuously "push" exhales without it being uncomfortable.

I have the same perspective on nose breathing...I breathe through both my nose and mouth during both day and night. For now my goal is to simply use CPAP/etc effectively with my current breathing style. Once that happens, I'll try to become a nose-only breather while sleeping. But that's a long bridge too far right now. My wife would be arrested for homicide long before I made headway.

Our issues sound a bit different though. I always sleep nice and deeply WITHOUT CPAP...but too deeply, and I probably forget to breathe. It's how I feel and move when I wake up and for hours afterward that's the problem. Like a desiccated vampire. I've always been like this that I can remember, but it's getting worse with age.

Good luck!!


-Carleton

[Djonne]

Oh really? I don't feel any discomfort when trying to fall asleep with or without EPR. Even if my pressure is at 12, I have no problem exhaling. I guess my brain disagrees once I fall asleep maybe?! But everyone apart from the Lanky Lefty seem to suggest I use EPR, including my pulmonologist and the respiratory therapist at my DME clinic so... maybe I'll give that a try. I really tend to switch settings every night and I'll try to hold back on that for a while.. I'm way too obsessed !

Also, I don't think I have much OSA either..! Most of the events in my test were hypopneas, but I really, really slept weirdly if I slept at all so both me and my sleep therapist think the test should be invalidated.

Everyone here seemed to suggest that I need higher pressures, but as I said, I got my best results with lower pressures, but I agree that by looking at the charts it wouldn't make sense... but it's still the case. My lower AHI was with a fixed pressure of 6 hahaha. Can you post a link to your CPAP story thread? I'd like to take a look yeah!

[chunkyfrog]

Two things worked for me on keeping my lips together--alternately, not together.
Chin-up strips--I made my own; applied like a bulldog mask.
And poli grip strips--
I cut them into short, narrow pieces, and used them between my lips,
leaving a small gap in the middle for coughing.
Both worked fairly well, until I decided to skip it; and realized my mouth was TRAINED.

[Djonne]

Woah,, I'd need a visual of these. I really can't picture any of this! hahaha

[Carleton]

Here's the link to my thread! viewtopic/t182503/Dreamstation-Puff-vs- ... 6a07f04eb9

My CPAP trial with inappropriate masks was ramping me up to pressures of up to 15 cm...it was really unpleasant. You can see what I've been doing on the thread above and I'll keep posting info as I get it on OSCAR.

My sleep test was similar to yours in that respect. I usually sleep like the dead, and wake up feeling like the dead. But during my sleep test at home I couldn't sleep with all that stuff hooked up to me. I might have slept 1.5 hours in total in an 8 hour night, as I kept track with the clock beside me, and woke up feeling like I hadn't slept at all, but strangely feeling quite energetic.

I wrote this anomaly all over my forms and brought it up several times in meetings. Still, the tech and doctor said they had "plenty of data," and diagnosed me with OSA. I think they probably make their money on 100%+ marked-up machines and just wanted to put me in the cattle chute of their usual OSA client. So here I am instead.

I've requested another sleep test to see if we can get results if a sleep that might actually be diagnostic, but haven't heard anything back yet.

My best AHI so far was ~5, with Min 5 / Max 7 / EPR 2. Because my airway is open all the time, I don't think I need the heavy duty pressures. For me they just cause leaks and eating air.

[Miss Emerita]

For leaks, if your jaw drops, try the Knightsbridge Dual Chinstrap or a soft cervical collar. Either will help to hold your jaw in place. Try the tongue technique to prevent air from getting into your mouth; practicing during the day can help. And if your lips tend to part, try Somnifix tape, which is very gentle and holds pretty well. If it helps, you can switch to something less expensive.

I have pretty good luck with the tongue technique, but I also need tape, because if even a little bit of air gets into my mouth, it'll pry open a little gap between my lips, and once that happens, the little gap turns into a big one.

I'll be curious to see a chart once you've tried three nights at the recommended settings. Please stack these graphs:

Events
Flow rate
Pressure (not mask pressure)
Leaks
Snores
Flow limitations.

And please include the left panel with the calendar turned off.

[Djonne]

Hmm I really don't think my jaw drops, but maybe. What tends to happen even with tape is that my cheeks puff and I end up blowing a stream of air through my pursed lips! But I'll keep trying to train with it.

Last night I used 8-20 pressure with EPR set at 3 AND tape and still had over 20L/hour of excess leaks. Haven't watched the data on Oscar because I now I can't improve any of it right now. I'll post the charts after three nights with those settings.

[Janknitz]

Have you tried fitting your mask at the max pressure you are using on auto? It sounds to me that what doesn't leak at 7 leaks at 12 or higher, so one way to stop that is to put it on a fixed pressure of 12, or whatever is the highest number you are using--strictly for the purpose of fitting the mask--then adjust the mask so it doesn't leak in your regular sleeping position and again on your back since you note rolling on your back, too. Then restore the settings you are using at night.

This may stop the annoying leak issues when the pressure increases.

KTeague mentioned how important that tongue position is. I didn't believe it was possible, but by practicing all day except when eating or talking for a few days, it did become a habit I could sustain even during sleep. When you get it in just the right position, a sort of "suction" will hold it in place. Some people use a soft cervical collar to help support the chin and prevent chin drop during sleep.

Since a lot of your apnea is positional, you may want to consider staying off your back. Yes, it is easier said than done. Some people go to sleep with a backpack full of towels or a pillow that prevents them from rolling onto their back. I've heard of people sewing tennis balls in the back of their PJ top, or just use a pillow to prevent you from rolling over.

Hope you find these suggestions helpful

[Djonne]

Oh yeah I've tried fitting my mask at a pressure of 20... there is absolutely NO mask leak, it really is all mouth leak! And yeah, I've been thinking about using some things to try to keep form sleeping on my back... they suggested that back in 2014 when I had my first study, but when I only sleep on my side, my lower back hurts so much it's like I've been stabbed. Actually if that worked, I wouldn't even need a CPAP! At least that's what the first doctor said back in 2014.

I'll keep practicing the tongue position thing. Right now I'm trying to train with my pressure of 7-20, EPR at 3 and mouth taping... see if the leaks improve within a few days. If they do, I'll try to wean off EPR.

[Djonne]

Okay, here I just put up the charts of my last two nights. No surprise here.. more pressure = more leaks, no less apneas! And this was using surgical tape across my lips.. I really still manage to blow air through it.

I talked to my respiratory therapist again today and he maintains a fixed pressure around 6-7 is where I was getting my best results (I even got AHIs below 2 on SOME days with that setting), but then again, to him, an AHI under 5 is considered treated and he sees no need to improve past that.

I was really hoping I could get some new ideas, but it really seems like everything has been tried?!

I try to train my tongue to stay on the roof of my mouth, but that'll most likely take way longer to work ! hehe

Anyway, does anyone have any pointers after looking at my charts?

[Dog Slobber]

I'm not (necessarily) drawing the same conclusions you are.

And two nights data is *not* enough to draw any meaningful conclusions from. It's certainly not enough time to train yourself not to mouth breathe.

I also disagree with your conclusion that the increased pressure is solely responsible for your leaks. There are a lot of times where there has been increases in pressure with no leak, Leaks with no increases in pressure and even times with leaks substantial while the pressure was decreasing.

First of all, let's disregard the Central Apneas for now, there aren't many of them, they aren't heavily clustered. They're not a problem.

Take a look at your flow limitations, now look at the resulting pressure increase. This is the machine responding to your air passages closing. A lot of the times it is responding in time to address the flow limitations and likely prevent the apneas. But many of the times it's not, you get a dramatic increase in pressure and some Obstructive Apneas.

The solution is to increase your minimum pressure a little more. This can have benefit of addressing the flow limitations before they become problematic and potentially remove the need for the sharp increase in pressure.

The flow limitations are also somewhat clustered. This confirms your apneas are positional, but also suggests your apneas may be REM related. While in REM sleep you lose a lot of muscle tone and a lot of people are more prone Obstructive Apneas.

REM sleep can also be a huge contributing factor to leaks, and not necessarily increased pressure. You are associating the leaks with higher pressure, but a huge contributing factor could be REM sleep. The same loss of muscle tone that is contributing to your apnea is also prohibitive from you keeping your mouth closed and throat tight enough to stop your mouth leaks.

Finally, with you. We absolutely do not have any kind of a baseline to look at settings, make adjustments and find trends. Under OSCAR, under statistics, it tracks therapy settings and AHI. We can use this to actually track settings, make a change then watch the effect. But for this to be valuable, we change one thing and we leave it long enough to be statistically significant. No changing multiple things on a nightly basis, one or two nights is nothing.

Your AHI is not horrible. If you're looking for a magical setting that will give you an AHI under 1, and keep your mouth closed that's not happening, at least not overnight. This continuous pushing buttons, twisting dials needs to stop. We need to zero in on your optimal settings and you need to learn to get used to the device.

I suggest you leave it at 8-12 for a few more days so we can get a statistically significant baseline. Then move your minimum pressure up a bit. 8.4 to 9.0 whatever your comfortable with.

[Djonne]

Yeah I can try that! I just find it very confusing that everyone here says I need more pressure and both my pulmonologist and respiratory therapist at the DME say that I should use a fixed pressure or 6-7 because that's when I had the best results... I really find it hard to decide which option is the best, although I definitely sleep better with lower pressures.

Anyway, I'll keep try your 8-12 setting right now while keeping an EPR of 3 and we'll see! I'll keep using the tape as well, although it doesn't seem to help prevent mouth leak... at least it doesn't bother me!