New guy, new mask, new problems...

[DenG]

Hi all, just found this site today.

Started CPAP 9/24/13.

Started w/ a Sleepweaver Elan mask.
I'm a side-sleeper who likes to bury my face in the pillow, and thought the soft cloth mask made sense for me.
Good theory, but not in practice.
It was pretty comfortable but has some design flaws.
Both sets of straps tighten at the same spot on the upper lip.
As a result, I got a sore on my upper lip and was constantly springing leaks at the bridge of my nose.

The main problem, really, was the leaks - the seal was always very tentative and I was constantly fussing w/ it to get a good seal.
I'd get it seated perfectly, but then the slightest movement and PSHHHHH!

Despite the problems, I was feeling much better - still tired but no longer so exhausted I couldn't function.
My theory is that I was no longer suffocating in my sleep, but still wasn't getting enough uninterrupted sleep.

After a week, I decided it was time to try a different mask.
Got the Wisp.

1st night was ok.
2nd night, for some dumb reason decided the straps were too loose, even though it wasn't leaking - woke up the next morning w/ a very sore and red bridge - also woke up feeling more tired than I had in awhile.
3d night (last night) - loosened the straps but the damage was already done - bridge of my nose is worse. Woke up today feeling almost as bad as before starting CPAP.

W/ both masks I woke up several times during the night - if anything, it seemed like I slept better w/ the Wisp, i.e. wasn't aware of as many awakenings. Still feel a lot worse since starting on the Wisp, though.

My machine says my AHI has doubled since changing masks - from <3 to >4.
Also, the L/min leaks went way up, even though I know the Wisp leaks less.
It seems the Wisp vents more air than the Elan, so that might explain that.

I have some theories about the AHI;
Am I right in assuming that if I get more actual sleep, my AHI will naturally go up (because I won't have a/h while awake)?
Then again, I don't feel like I've slept more even though I don't recall awakening as much.

Also wondering about rebreathing - the vent for the Elan is in the mask, for the Wisp it's in the hose elbow - I wonder if I'm rebreathing more CO2 w/ the Wisp.

Anyway, I better stop here, because my brain isn't working too well at the moment, having a hard time thinking/writing clearly (I'm sure a lot of you know the feeling).

The dilemma (part of it, anyway) is that I have to return one of the masks.
I received the Wisp as an exchange on Wed. and it included a RA for the Elan.
Not sure how long I can delay before they just charge me for the Elan.
But now I'm very conflicted as to which one to keep.

I know I'll need to fill in my equipment details and maybe even upload some machine data - just hope I can find the energy to do it.

[Julie]

If you get more sleep using the machine your AHI will likely go DOWN because you'll have had more time in decent sleep rather than in sleep full of apneas. That's the point of it and the reason we tell everyone to use it even for short naps.

[DenG]

Thanks for clarifying that, Julie.

Ok, so I've entered all my equipment into my profile and I've downloaded SleepyHead and imported my data.

Interestingly, I've had both my best and 2 worst nights, in terms of AHI, with the Wisp.
Started using the Wisp 10/2.
Best AHI:
10/3 - 1.70 (this was the night I tightened the straps and woke up with a sore nose)

Worst AHI:
10/4 - 4.24 (last night, and I feel the worst I've felt since my 2nd night of CPAP)
10/2 - 3.65 (first night w/ Wisp)

Overall AHI (11 days): 2.77

My pressure range is 7-15cmH20
It was initially 5-15, but the SleepWeaver Elan didn't inflate enough to seal at 5, so I figured out how to increase the min to 7.

I don't know whether to put a bandaid or some other pad on my nose and continue with the Wisp, or switch back to the Elan.
I'm leaning towards the Elan because I definitely felt better with it, but considering the trouble I had with it, that doesn't make sense to me.


edit: just to clarify, Julie - I've used the CPAP machine all night, every night since I received it.
Since the machine can't differentiate between sleep and awake - hypothetically, if I spend an entire night awake, with the mask on, the machine would register an AHI of 0.
Seems logical to me that all else being equal, a night with the mask on with more periods of sleep would mean higher AHI than a night with less sleep. No sleep = no apnea, more sleep (w/ or w/o CPAP) = more apnea.
No?

[Julie]

Ok, I get what you mean, but it's not like a mechanical thing - every night's different for all of us depending on what we eat when, if we had a drink, some kind of meds, a better bed or pillow, noises outside, etc. etc. and for anyone to expect zero consistently (or any low #) is probably not realistic. Don't fuss about that, just try to get the same hours of sleep nightly, starting at around the same time and with equipment set up as well as you can. That's good sleep hygiene. Worry about how you feel daily on an ongoing basis, not whether a single day is a disaster or miracle... maybe it's the best we can do for now.

[Sir NoddinOff]

With the Wisp just put some 3M NexCare multipore tape on the bridge of your nose until it heals. After several days the skin just below the bridge of your nose (BTW, where the mask is supposed to rest... maybe you need to go down a size) will heal up and get tough. Trust me. This method works. Also: Buy a Pad a Cheek liner and that will help you become accustomed to the Wisp system... it fits really nicely right out of the package. I use my Wisp at a pressure of close to 20cmH20 with no real rawness problems anymore.

[DenG]

Thanks.

Julie -
I've been doing my best to practice good sleep hygiene.
Didn't think about the fact that there are so many variables.
It'd be great if there was a way to incorporate a "sleep journal" into SleepyHead so you could track any variables along side the data.
(maybe there is)

Sir N.-
The medium size pinches my nostrils (which I heard is a common complaint) so I used the large.
Maybe I'll try the medium tonight if I can find something comfortable to put on the bridge of my nose (too tired to go out and get the 3M tape).
If not, I'm going to use the Elan for tonight.
If I decide to keep the Wisp I'll definitely look into the liner.

Has anyone else used any of the cloth masks from Circadiance?
The Elan really is very comfortable, it just can't maintain a seal.
It seemed like such a great idea, I had high hopes for it.
It could work a lot better if they just moved the top strap up by the bridge of the nose.

[robysue]

Since the machine can't differentiate between sleep and awake - hypothetically, if I spend an entire night awake, with the mask on, the machine would register an AHI of 0.

Actually, the answer is "NO, the AHI probably would NOT be 0.0 if you wore the mask for the night but you were awake the whole time.

Normal wake breathing is much, much more erratic than normal sleep breathing. And the normal variations in wake breathing are easily misinterpreted by the machine as "sleep disordered breathing events". When we're awake it's not uncommon for us to hold our breath for several seconds when we are concentrating on something---even something as simple as turning over in bed. Hold your breath for about 10 seconds and an OA or a CA is likely to be scored. Also we control how deeply we're breathing when we're awake. We may choose to take a series of deep cleansing breaths and then return to a more normal (but shallower) breathing pattern. If the drop in airflow is more than 50% of baseline, the machine is likely to score an H when this happens.

Seems logical to me that all else being equal, a night with the mask on with more periods of sleep would mean higher AHI than a night with less sleep. No sleep = no apnea, more sleep (w/ or w/o CPAP) = more apnea.
No?

In a lab, no sleep = no apneas scored because of the EEG data. On a CPAP machine, there's no EEG data and so any (normal) irregularity in WAKE breathing can easily be mis-scored as a sleep disordered breathing event.

Now some people have more problems with WAKE breathing irregularities being scored as OAs, CAs, and Hs than other people do. So the answer to whether more actual sleep with the machine may lead to a higher AHI really depends on the individual. If your wake breathing patterns are frequently mis-scored and your pressure is highly affective at preventing your apnea, then more sleep will likely mean a lower AHI. If your wake breathing patterns are seldom mis-scored and your pressure is just barely enough to prevent your most of your apneas, then a night with a lot of sleep may very well have the higher AHI because you are likely to spend more time in deep sleep and in REM sleep, which is when most people have the most trouble with their apnea. If you have a lot of problems with sleep onset apneas, however, dozing in and out of sleep may lead to the highest AHI: Being fully asleep may lead to fewer events than dozing does.

[Portlandguy]

I think we all have leak issues at some point. My nose got a painful raw sore with my first mask (responics comfort gel) and the leaks were awful. I went for a "Cpap Nap" to try in different masks... Might be worth checking into. I ended up with a ResMed Mirage Liberty Mask. It works much better for me, but I still have days occasionally where I am wrestling with the thing or I wake up and find I took it off at some point. I tried the Pad-a-Cheek liner for both masks I have. The help with comfort, but they cause to many leaks for me.

[DenG]

Thanks for the explanation, Robysue - makes perfect sense.

Now I no longer have to worry why the machine thinks I'm having a CA while I'm awake...
The air pulses when the machine senses an "event" and sometimes while I'm awake reading, I feel the pulse and realize I wasn't really breathing...
It was freaking me out! lol


I knew this was going to be tough to get used to, but no one told me about sores on my face!
I wish I could keep both masks, it's another 2 1/2 months until I'm eligible for a new one.
If I don't return one pretty soon they'll charge me for one.

Going to try to make the Elan work for me tonight - that thing would be great if it could just hold a seal.
Saw some tips about how to wear it in another thread, so maybe I can work with it.

One thing I realized early on is that there are about as many different preferences for masks as there are shapes of noses.
I've been told I have a "unique" nose.


ETA: Robysue - from reading around, I see you have a lot of the answers...
Any tips for how to deal with air in the belly?
I get pretty bloated some nights.
I can't feel myself swallowing the air, I just feel the bloat set in, so I don't even understand how it's happening.
It can happen at pretty low pressures too.

[robysue]

ETA: Robysue - from reading around, I see you have a lot of the answers...
Any tips for how to deal with air in the belly?
I get pretty bloated some nights.
I can't feel myself swallowing the air, I just feel the bloat set in, so I don't even understand how it's happening.
It can happen at pretty low pressures too.

It's called aerophagia. Search the forum for it and you'll get plenty of hints.

I have had a running battle with aerophagia right from the start. I don't usually get it very bad any more. But at the start it was one of the things that made my PAPing seem nighmareish at times. Two months into PAPing with multiple phone calls and "semi-emergency" meetings with the sleep doc's PA due to aerophagia, insomnia, and a serious crash in daytime functioning lead to the sleep doc switching me to a BiPAP in the hopes that it would help with the aerophagia. The switch of machine took the edge off the worst of the aerophagia and then over time my body has adjusted to sleeping a bit better with the BiPAP and with fewer wakes has come fewer problems with aerophagia. So if the aerophagia becomes a chronic and painful problem that's interfering with your sleep on a nightly basis, you should let the sleep doc know.

In the meantime, there are plenty of self-help things to try to minimize the aerophagia. Basic antiaerophagia tips include:

All the standard self-help stuff recommended for GERD sufferers: Don't eat too late and watch what you do eat at supper time. Raise the head of the bed a bit. Sleep on the left side if possible. And so on.

Pay some attention to the position of your head and chin. This varies somewhat from person to person. For me, tucking my head and chin down towards my chest while sleeping on my left side seems to minimize the problem. Sleeping with my neck extended in a straighter fashion seems to increase the aerophagia.

Keeping excess air out of the mouth seems critical for me. It took me a long time to learn how to use my tongue to keep air out of the mouth when the machine is on and I'm still awake. Once excess air gets into the mouth and the cheeks puff out, the (unconscious) temptation is to just swallow the air since opening the mouth to release the air just results in a huge flow of new air into the mouth.

Sleeping soundly sometimes helps with aerophagia. Arousals and wakes can trigger swallowing, which can trigger aerophagia, which can trigger more wakes and arousals, which triggers more swallowing, which triggers more aerophagia, which .... And at some point you wake up feeling like you swallowed a basketball. I think in my case I thinke the really painful aerophagia finally started to abate once I finally started sleeping with the BiPAP and only waking up briefly at the end of each sleep cycle on many nights.

Since you are running in auto and you say the aerophagia can kick in at low pressures, you may need to pay attention to the max pressure setting. Did you have a titration study to determine a pressure level? And what is the 90% or 95% pressure level running at? And how much time do you spend at max pressure? You may find that if you limit the max pressure to your 90% or 95% pressure that the stomach will be happier and the OSA will be sufficiently controlled. I've found that I have to keep a tight range on my max IPAP. It's clear from multiple titration studies that 8/6 is sufficient to control my apnea and my stomach cannot handle the pressure when it gets to IPAP = 9 and EPAP = 7 for any length of time. Hence I find that I do better with the max IPAP set to 8 even though it means that on most nights my IPAP is maxed out for 50% or more of the night and on some nights both my IPAP and EPAP are maxed out for long stretches.

[DenG]

Robysue - the depth of your knowledge is impressive!
And much appreciated.

Used the Elan last night, wanted to give the bridge of my nose a night off.
Had a decent night - I may end up keeping it.
Less aerophagia with the Elan, but still some.

I'm going out to buy some 3M NexCare multipore tape.
I'll give the Wisp another shot tonight.

Tomorrow I'll have to decide which one to send back.

The Elan is so much more comfortable, and making it very loose helped the seal and resolved the irritation on my top lip and the feeling like my bite was being changed.
We'll see what happens tonight w/ the Wisp, but I'm leaning heavily towards keeping the Elan and making it work.

Thanks to users @chunkyfrog and @Stormynights for the tips on how to "ride" the Elan on this thread: viewtopic.php?f=1&t=92073

[DenG]

Hi all - I'm back.

It's been a rough 2 1/2 months.
I had the Sleepweaver Elan working pretty well for me for a little while, but over time it became less and less able to stay sealed.
It got to the point where it would keep me awake all night - having "blow outs" and then fussing with it to try to get a proper seal.
I think it must have just stretched with use, because by the end of the 3 months it just would not maintain a seal at all.

So, when the 3 months was up, I decided to try nasal pillows, which my research told me was probably the best option for me, being a side sleeper.
Didn't really have the energy or mental clarity to do much research on which nasal pillows would be best for me.
Ended up choosing the F&P Opus 360 because the ball & socket hose swivel seemed like a good idea and because it had good user reviews.

I received it Friday and today I'm back to feeling as bad as ever.
This set up does not work for me at all.
First off, the mask frame defeats any benefit for a side sleeper, as it has rigid plastic arms that extend from the nose back to mid cheek bone.
So, even sleeping with my nose out over the edge of the pillow, my cheek is still in the pillow, therefore the frame arms push the pillows off to the side.
This caused me to wake up with a very sore nose.
I even tried sleeping on my back (can't do it) and the pillows still irritated my nostrils to the point of pain and loss of sleep.

I tried all 3 sizes of pillows and had the straps loose enough that they were barely holding the mask to my face.

There is no doubt that the Opus 360 is not going to work for me, and neither is the Elan, unfortunately.

I'm unsure about what to try next...
I think a nasal pillow mask without the rigid side arms might work better, but I'm worried that my nose is just not anatomically compatible with nasal pillows.

In the sleep lab, according to my report, I used a Respironics True Blue nasal mask (small).
Seems strange that I would have used a small considering I definitely have a larger than average nose.
Anyway - I don't recall mask comfort being an issue during that overnight.
Then again, being tangled up in all the wires and things was bothering me so much that I might not have noticed the mask being uncomfortable, not to mention I was not using my own pillow.

I didn't choose that mask when I started my therapy because I read myself to sleep and, in the lab, the bracket for the forehead brace made reading difficult.

At this point though, I'm thinking my safest bet when I exchange the Opus would be to go for that same mask I used in the lab.

Sorry for the long post - I have a really hard time being succinct when I'm well rested, never mind when I'm this tired.

I only had maybe 2-3 weeks worth of decent nights since starting CPAP, and the past several weeks have all been bad.
I'm suffering and feeling desperate.

Just looking for advice and opinions on whether or not I should try a different nasal pillow mask or just go ahead and get the nasal mask I used successfully that night in the lab, or maybe try a different nasal mask.
Keeping in mind that the main issue is that I am a side sleeper and I frequently roll over and switch sides during the night.

edit: realized it might be useful to mention that my average pressure is 10.

Thanks in advance,
Dennis

Oh, BTW - the Elan is currently in the washing machine getting a hot water wash.
I figured there's a chance that it might shrink and improve its ability to maintain a seal.
And at this point it's worth the risk of ruining the mask because it's noty useable in its present state anyway.

[Portlandguy]

I used to sleep sideways, but I trained myself to sleep on my back. It was hard at first, but got easier over time. Also, have you tried a CPAP pillow with the cut outs?

[flyingwithoutwings]

I'm a serious side sleeper also. I tried the Swift FX nasal pillows but they just don't work for me. I also tried the Elan but only had one good night with them, after that, I could not stop the leaks. I now use the Wisp, loose at the top, snug at the bottom and do really well. Only minor leaks, not enough to wake me up.

I used to sleep sideways, but I trained myself to sleep on my back. It was hard at first, but got easier over time. Also, have you tried a CPAP pillow with the cut outs?

I thought we should try to avoid sleeping on our backs.

[digitalepiphany]

The Swift FX works great for me, as far as having my head buried in the pillow is concerned. I leak air through my lips, but rarely have any leaks from the pillows themselves.