I'm losing hope, maybe someone can help

[UglyBob]

Hi everyone,

I started CPAP therapy just over a year ago. I know two other people with sleep apnea, and they both say it changed their lives. I wish I had that, but it doesn't seem like it.

POSITIVES

• The only positive thing I have noticed is that I get up less often to use the bathroom during the night

BIGGEST NEGATIVES

• Nose problems (more about this below)

• Stomach hurts in morning often

• Still wake up tired

• Noise from the air releasing from mask, hose, etc. drives me crazy and keeps me awake sometimes

• Leaks from mouth breathing (more on this below)

• Uncomfortable (I know, but it's still a big negative)

I think I need help figuring out how to properly set up the humidity settings. I have tried different settings but I can't figure it out. Sometimes I wake up and my nose feels really dry and it hurts pretty bad. Other times my nose feels, uh, wet and overactive. I don't really know how to describe it but it's also really irritating. I have an AirSense 10 AutoSet with the hose that allows temperature changes. I am pretty sensitive to dry conditions so I also run a humidifier in my bedroom. I don't know if that affects the humidity in the machine or not, but that has to stay in the bedroom in the winter. Can someone explain how I should be adjusting these settings? Please explain like I'm dumb!

Another nose problem is that nasal pillows, which is definitely my preferred mask type seem to occasionally cause, I guess, pimples on the inside of my nose or something. When this happens the nasal pillows are too painful to wear so I have to switch to a nasal mask. The cup type, not the ones that sit on your nostrils with a hole in them. I do clean my mask daily. Any idea why this happens and anything I can do about it?

I also know I'm a mouth breather. I've tried full face masks but they're hard for me to sleep in and I end up drooling, but it stays in the mask. I can't take that! I have tried so many chin straps but I guess I have a small (or oddly shaped?) head. The types that sorta pull back instead of up and have the split bands that hold it around the top and back of the head are always too big. The bands split so there isn't enough pressure to hold the chin. I had a Respironics one that I tried a few times but I could never get that to work. I have a few others too, but they don't work well without overtightening. I've tried headbands, cervical collars, the cats (they move), pretty much everything. The only one that has sorta worked is the KnightsBridge Dual Strap, but that makes it hard to wear certain masks and it is really uncomfortable on my forehead and under my chin. It also started making my grind my teeth again when I wear it. I've already broken a tooth from grinding in my sleep and dental work is so expensive. I don't want to risk that again. It seems that when I have more of my head on the pillow I breathe out of my mouth a lot less, so I've been trying that lately. I prefer sleeping on the edge of my pillow though.

The biggest problem though is that all of this doesn't seem to be helping much. I still feel so tired when I wake up just like I always did. Maybe it's just because it's been a weird year with the pandemic, and working from home and all that. I don't know. I just expected to notice a bigger change by now. I'll post some Oscar screenshots in the next post in case anyone sees anything that might help.

Thank you!

[UglyBob]

Here are the last few days using the N20 mask.

[UglyBob]

Here are the last few when I was using the P30i.

[Deborah K.]

I'm sorry you are not happy using your pap machine. Although you may wonder if it's worth using, consider that you are having nice AHI's, which you certainly would not without your machine. Using the machine is protecting your health in many ways. I hope you will get some good advice here from folks who can interpret your charts way better than I could. It may be that they can help you tweak your machine in order to be more comfortable.

If your nose gets sore from the nasal pillows, you are probably wearing them either too tight or the wrong size. Nasal pillows should sit gently, just a tiny bit into the nostrils. A lot of people find that even if they have small nostrils they are more comfortable with the large size pillows. I found that to be true. I used to use the P30i, and found it quite good. I don't know anything about the other one you mentioned. I washed the P30i very thoroughly every day, using a small toothbrush to scrub it in hot soapy water with dish soap in it.

For the dry nostrils I put a little dab of Lanishoh (a tube of lanolin sold in baby departments everywhere) on the end of each pinky finger and rub it up into each nostril as far as I can reach. This helps a lot!

As to humidity, I use a room humidifier every night all year long, and still run the pap humidifier full blast through a heated hose. That feels good to me. It sounds like you probably need it too.

Best of luck with whatever you try next!

[UglyBob]

If your nose gets sore from the nasal pillows, you are probably wearing them either too tight or the wrong size. Nasal pillows should sit gently, just a tiny bit into the nostrils. A lot of people find that even if they have small nostrils they are more comfortable with the large size pillows. I found that to be true. I used to use the P30i, and found it quite good. I don't know anything about the other one you mentioned. I washed the P30i very thoroughly every day, using a small toothbrush to scrub it in hot soapy water with dish soap in it.

Thanks for the reply. I do use the lanolin already. It's amazing how much that stuff helped in the earlier days. I forgot to mention that in my post.

The idea of larger sized pillows is interesting. I tried that on this P30i before, but the large size makes a whistling noise when I inhale. That did remind me of another mask I have though, the Swift FX.

The pillows on the FX don't go into my nose much. The P30i seems like the pillows are shaped in a way that forces them to go farther into the nose. I'm going to give the FX another try over the next few days. I remember it being the most comfortable mask I've used. I just really like the top of the head hose on the other mask.

Thanks again for the reply! Also, what mask are you using now?

[Deborah K.]

I use the Bleep system now and love it! As it's pretty new lots of people have trouble getting their DMEs to order it and their insurance companies to pay for it. I switched to a different DME and then spent a good bit of time on the phone with my insurance company to explain what codes they needed to bill it under. I get it for free now as I have good insurance. Some folks just buy it out of pocket. It's a little finicky to learn to use, but worth it to have no straps on my head and face, no mask on my face or in my nose and no pressure on my teeth.

[elsueno]

x

[Pugsy]

Pressures. Starting IPAP/EPAP of 9/6 looks like it is low because pressure always shoots up to at least 14/11 when it can. I’m guessing that both starting pressures should go up above 9/6, and that the PS between the two could increase. All that shifting of pressures causes its own problems (See Lanky Lefty video on this). What if you used the bi-level / bipap setting on your machine, and chose a specific IPAP and EPAP value to serve you the whole night? I* am guessing something like 12/6.

Please don't go suggesting bilevel with PS of 6 for anyone...PS of 6 could trigger centrals. You don't know enough yet to be offering any ideas in this area. That suggestion is potentially dangerous.

And yes...Jason doesn't actually endorse auto adjusting pressures of any kind...he's a big fixed pressure advocate. He's entitled to his opinion but he doesn't walk on water and his opinions aren't the gospel.

You need to learn to understand the pressure line graphs. His settings currently aren't 9/6....they are 13.4/16.4 (with ability to go to 15.4/18.0). He is using the ramp feature and it appears likely auto ramp from the way the pressure increases.

I know you just want to help but in this situation....you don't understand the pressure graph and advising bilevel with PS of 6 is potentially dangerous....maybe do a little more reading and asking questions yourself before going down that road.

[chunkyfrog]

Yes, thelankylefty is personable; and knows most of his sh*t, but somehow got stuck in the single pressure rut.
The advantage of having an APAP is that you can try it both ways--and use what works for YOU.
Single pressure lockstep can get people stuck with a BRICK--like driving at night with no lights.

[Miss Emerita]

Like others who have posted in your thread, I'm a Bleep user. One thing to stress about the Bleep is that no part of it goes INTO your nose at all. That might be a plus for you. For what it's worth, I use a CPAPology "Houdini" hose lift with the Bleep; the terrycloth hose cover provides enough friction to keep the hose in place inside the loop that it hangs from.

Have you tried a soft cervical collar to support your jaw from below? If you can adjust it just right, it'll keep your jaw in place without jamming your upper and lower teeth together. You may also want to explore using some tape on your lips to keep them closed. Somnifix strips would be one place to start if you'd like to experiment.

One small bit of housekeeping: could you fill out your profile with information about your machine and mask?

[Pugsy]

In reality the pressure itself really isn't varying all that much with the settings that are being used right now.
It's pretty much a fixed pressure just from the settings. The only real change is when ramp kicks off and that's it.
Max was 14.84 and the minimum is 13.4.
That's really just a 1.4 range and hitting that 14.84 is really very brief. For all practical purposes the machine is pretty much doing a fixed pressure anyway. It looks more impressive than it really is due to the scale of the graphs.

As to Jason preferring fixed pressures...he's a sleep tech and a good one and he thinks that most people do better on fixed pressures.
Another sleep tech might think that most people do better on auto adjusting pressures.
They are just like us...entitled to their opinions based on their personal experiences.

Jason doesn't like to use exhale relief either...
Again his personal opinion based on the fact that sometimes some people have centrals triggered by the bilevel situation that exhale relief triggers. In a sense MY OPINION is that this withholds comfort features from those people who can use bilevel pressures without causing centrals and maybe bilevel pressures are more comfortable and would let a person sleep better. I don't agree with penalizing most of the people just because of a maybe problem with a few people getting centrals triggered. That's my opinion.

Jason is a great guy but he is human just like the rest of us. Yes, he is a sleep tech but there are many sleep techs who will disagree with some of Jason's opinions. I used to stroll through the sleep tech forum back when I had time and wow...you should have seen the fights that went on among just the sleep techs on whose thoughts were "right". They made our fights here look like tiny spats not worth worrying about. Those guys wouldn't bend a bit or entertain anyone's else's opinion as to being right but their own.

As for OP's primary complaint...he's not feeling the good numbers like he thinks he should.
He has seen a reduction in nocturia...so we know the cpap is helping in that regard.
He is mentioning various complaints that add up to poor sleep quality which then of course affects how we feel during the day.
My own opinion...his settings aren't the problem so they aren't the fix either. The fix is addressing the various other complaints that are causing poor sleep quality...leaks, comfort, etc.
Goes back to what I have always said...good numbers don't mean squat and the cpap itself can't fix a problem unless the problem is airway related. His sleep quality is crap but not from airway issues. Fiddling with the settings isn't the answer here.
Trying to sort out all the other issues is the fix and unfortunately it's much more difficult than just a little tweak of the settings.

Unfortunately using cpap just causes comfort issues that mess with sleep quality and it's a long battle to fix those issues and why a lot of people give up on cpap because "it isn't helping"...in reality it is helping with the airway issues but people aren't feeling any better so they assume cpap isn't working. In this situation....nocturia is classic sleep apnea symptom and that has been reduced so we know that cpap is helping with the sleep apnea issues....unfortunately using cpap has caused some other issues that affect sleep quality that need to be sorted out.

[UglyBob]

One small bit of housekeeping: could you fill out your profile with information about your machine and mask?

Weird. I have the equipment selected and saved in my user control panel/profile. I figured it showed up but you're right. It's not listed, only the comments. I'll see if I can fix it.


Also, people keep mentioning the Bleep mask. I really wanted to love that mask. I tried so hard but sometimes the tape hurt my nose because of my problems with extremely dry skin. That's also the reason I can't use tape on my mouth. Maybe I'll give the Bleep another try one of these days.

[Pugsy]

Weird. I have the equipment selected and saved in my user control panel/profile. I figured it showed up but you're right. It's not listed, only the comments. I'll see if I can fix it.

It's not just you...it's everyone right now.
They did a maintenance update a few nights ago and this happens a lot...something gets broken and equipment doesn't show up.
You won't be able to fix it. Right now no one's equipment shows up...mine doesn't either.
I have lost count of the number of times this has happened over the years.

It has to be fixed by the forum IT people. We just deal with it for now.

[UglyBob]

For what it's worth, I use a CPAPology "Houdini" hose lift with the Bleep; the terrycloth hose cover provides enough friction to keep the hose in place inside the loop that it hangs from.

I use another hose holder. I can't remember what it's called, but it's one of the "popular" ones. Would you recommend the Houdini? I had been thinking about replacing mine since it doesn't seem to move as well lately.

[Miss Emerita]

For what it's worth, I use a CPAPology "Houdini" hose lift with the Bleep; the terrycloth hose cover provides enough friction to keep the hose in place inside the loop that it hangs from.

I use another hose holder. I can't remember what it's called, but it's one of the "popular" ones. Would you recommend the Houdini? I had been thinking about replacing mine since it doesn't seem to move as well lately.

Yes, so far so good with the Houdini. I've had it a couple of months. It swivels very smoothly, which I appreciate, since I turn over frequently from one side to my other. It is also easy to raise and lower the main mast, which telescopes. I do recommend using a hose cover that will create some friction so the hose stays put in the loop.