F&P Pilairo Q Nasal Pillow -Switched to DreamWear

[moonslice]

I'm looking at the pamphlet that came with and it doesn't say what this mask is actually made out of. I'm hoping I get used to the slight smell, or that it goes away after being unwrapped for a day or so. Got a slight headache after wearing it for a couple minutes.

I don't have a latex allergy, but I generally avoid PVC because I don't think it's healthy. Didn't think to ask about it before taking the mask home.

[Jay Aitchsee]

I think most mask cushions and pillows are made from silicone. It looks as if this one is too. See the F&P Website brochure. Any smell will most likely fade quickly.

[moonslice]

Thanks. The smell seems to have gotten better.

Is it normal that it gets wet under the nasal pillow above your lip while you sleep even if you don't use the humidifier? The first night I used it and the hoses and mask got wet, even thought it's set to the lowest humidity level. I tried without humidity last night (the second night) and everything stayed drier with exception of the part of mask that rests below my nose.

[Julie]

If your machine (+ humidifier) are on a level higher than you, put them a few inches lower as the water/condensation will then run back to the machine instead of to you. But it is so humid everywhere now - could that have had something to do with it?

[Pugsy]

The air you exhale contains moisture so it would/could be possible for that moisture to simply be condensation from the moisture in your own exhaled breath.

Positioning of the hose and/or machine lower is unlikely to help with that particular type of moisture due to the way the mask is made. It's just going to pool and has no where to go unless you slept face totally down... It's kinda a problem inherent to the way nasal pillows are made and used.

Using a barrel cozy to help prevent and/or absorb the moisture might help in this situation.
http://www.padacheek.com/PACSwiftII_Barrel_cozy.html
Only problem is I don't know that she makes one that will work on the Pilairo. You might email Karen at Padacheek and ask her if one of hers will work with the Pilairo which has a much larger nasal pillow.

Or you could maybe switch to a different nasal pillow that has a smaller overall nasal pillow that there is a barrel cozy available for it.

You might be able to make your own barrel cozy...just be very careful not to block the exhaust vent holes. I like Karen's because the material she uses feel like silk against the skin...super comfy.

[moonslice]

Thanks for the replies. The excess water issue seems to have been helped by putting less water in the chamber. I didn't fill it over the max line before, but I'm simply putting less now.

I still get that line of moisture under the mask above my lip and over by nose though. I tried sleeping without the humidity and I didn't like it.

I'm going to ask for a different mask tomorrow. I have been totally unable to get four hours of sleep with this thing. Not even. Close.

My data is about three hours a night and even that is only about 30 minutes of sleep with mask (I think) and I wake up feeling like I can't breathe. I just downloaded the DreamMapper app and I need to go scan my machine so I can register to use it. Maybe that will give me more data than I've been able to glean from turning the knobs on this machine. I'm still trying to figure out if the machine knows if you're asleep or when you have apneas. I asked for a machine with data but I didn't specify what type of data, so I'm hoping it does. Not sure what their reaction will be if I want to exchange machines. They said I could exchange masks though.

I know CPAP is supposed to make you feel wonderful, but this has been a week from hell. I'm also getting watery eyes during use, and cough and runny nose in the am. I'm not sure if CPAP can cause that or not. But my sore nose is probably from CPAP. I'm wondering if using the chinstrap would help. I haven't tried it yet, and that is one thing that the DME didn't really show me how to use. I need to dig it out of the case and try it.

Saw my ENT yesterday because he had wanted to follow up with me after the sleep study, and he said that I should give this at least a week. He also said he makes oral appliances for apnea. I told him I plan to lose weight to see if that makes it go away, and he said it would help but not cure it. I'm hoping he's wrong. I'm being really psycho about losing weight right now. I'm not overweight but my BMI is on the higher end of normal and I weigh more now that I have before. Want to drop 20 and see if all this goes away.

I also have to figure out if I can dim the light on that crazy bright display on the DreamStation. It lights up the whole room when you turn it off. I really think it's disturbing my husband's sleep.

Looking at the delivery ticket from the DME it charges only for a Mask Pilairo and headgear Pilairo (not for nasal pillows separately ). This is confusing since my prescription said I should get two nasal pillows per month. I got only one, but who knows how they charged for it -- maybe with the mask? I'd think they must break it out since they don't replace the mask monthly, but do replace the nasal pillow. Another question for tomorrow.

And how on earth is that headgear really $219? It's just a band, and not a very comfortable one at that. The rubber part nearer the face is extremely uncomfortable to me. They also charge $219 for the mask and $74 for 6 ft tubing and $445 for humidifier and weirdly only $210 for the CPAP Auto itself. Throw in about $20 for filters. All this is grand total of $1,201. I'm calling my insurance today to see if they really care about compliance at 6 weeks. That's part of what is stressing me out. I'm afraid I'm going to "fail" some test. My insurance said nothing to be about having to be compliant at 6-week follow-up, but my DME said if I wasn't they may not continue to cover.

While my prescription does not call for "cushion" I see it under the supply list. Is this an additional thing that would help with the type of mask I'm using, or does it go with another type of mask?

I wish I had taken note of the other mask I tried on. It's smaller than the one I have and is made completely differently. The DME said those were the only two small masks that use nasal pillows that she has. Is that weird? I keep hearing how there's this big world of masks, and I had two options.

[chunkyfrog]

Those are fantasy prices, used by local DME's everywhere.
Look up the same item on cpap.com for REALISTIC NUMBERS.

[moonslice]

Switched for DreamWear. Turned humidity to 0.

Also, recently got the DreamMapper app as it's the only way to tell your AHI with my CPAP Auto.

The numbers for yesterday seemed really off as I only wore it two hours and not much of that was asleep. Today, I wore the new mask for almost an hour to get used to it and I was awake the whole time. I looked at the AHI after and it said I had 9 hypopneas. How is this possible? I thought you only had them while asleep. I don't have central apnea.

Maybe I should start a new thread with this question, but I'm wondering if the DreamMapper cushion should feel so drastically different than the Pilairo as far as air flow. With the Pilairo, it formed a seal with your nose and you didn't feel any air around it, and you weren't as aware of the air at all. With DreamWear, there is no such seal I'm guessing because I can feel the air around my nose. Is this right? It is much more comfortable, but I'm wondering if feeling and hearing the air is going to be a problem for me and if it might be too loud for husband.

[moonslice]

So, was able to talk with DME and she said that it's normal to feel and hear the air more with DreamWear. I guess this is the compromise for the added comfort. But I'm wondering if it's going to be too loud for bed partner.

For the AHI on DreamMapper, apparently it's not very accurate. They get more accurate readings from the modem or chip. That doesn't seem fair. I guess my next question is, can I take the chip out of my auto and read it myself? Nothing saying I can't right?

Since turning the humidity down to 0, my nose feels drier after just an hour, but maybe it's the DreamWear causing that. She recommended turning humidity down to 0, which turns heat off, because of popping noise in hose. Or maybe it was because of watery eyes and cough in morning. We talked about several issues.

[Pugsy]

Use the available software to see your results...use that SD card...won't hurt a thing.
https://sleep.tnet.com/equipment
SleepyHead or Encore...both with work.

Google and read up on "cpap rhinitis". Some of your morning symptoms similar to an allergy reaction could be that your nasal mucosa doesn't like no humidity.
If the "popping" noise in the hose was condensation...and your nose doesn't like dry...it's better to address the condensation some other way than turning off the humidifier. It's fairly easy to remedy with either a hose cozy or a heated hose. I prefer heated hose because that way the humidity going to my nose stays at whatever level I choose and doesn't fluctuate. I have learned my nose likes consistency and not a lot of wildly changing humidity levels.

You have to ignore any flagged events by your machine when you know you are awake. Your machine doesn't know if you are awake or asleep...it only measures air flow and often when we are awake our breathing is much more irregular than we realize and often the machine will flag the irregularities by mistake. Any events flagged during known awake times have to be mentally removed from any AHI evaluations.

[moonslice]

Thanks Pugsy! I'll read up on the software, heated hose, etc.

First night with the Dreamwear: Headgear very comfortable - amazing. However, I am having trouble getting used to all the air hitting my face and eyes. With he Pilairo I didn't feel that, but I don't miss the sore nostrils. Also, it seems to work much better when you sleep on your back, which I'm not to supposed so.

My mask fit also read 88% on the DreamMapper App. Not sure how much attention I should pay to that. I'm going to buy an eye mask to see if that helps.

I almost met my 4 hours compliance last night, but ended up being short 15 minutes! So, it's a week now, and I still haven't managed to sleep much with the CPAP. Haven't met the compliance at all, but I'm trying.

[Jay Aitchsee]

Thanks Pugsy! I'll read up on the software, heated hose, etc.

First night with the Dreamwear: Headgear very comfortable - amazing. However, I am having trouble getting used to all the air hitting my face and eyes. With he Pilairo I didn't feel that, but I don't miss the sore nostrils. Also, it seems to work much better when you sleep on your back, which I'm not to supposed so.

My mask fit also read 88% on the DreamMapper App. Not sure how much attention I should pay to that. I'm going to buy an eye mask to see if that helps.

I almost met my 4 hours compliance last night, but ended up being short 15 minutes! So, it's a week now, and I still haven't managed to sleep much with the CPAP. Haven't met the compliance at all, but I'm trying.

Moonslice, something doesn't sound right here. If you have the chosen the right sized cushion and have the headgear adjusted properly, I don't think you should feel any air hitting your face and eyes. Also, if the Dreamwear is properly worn and sized, it doesn't leak much unless it gets dislodged. At least, that's my experience. I think most agree the DreamWear headgear back headstrap needs to be fairly snug. Not uncomfortably tight, but snug.

[moonslice]

Thank you Jay.

I'm wearing a Medium headgear and a Small cushion. I expressed concern about feeling air and my DME said it's normal. But it just doesn't seem right to me. I keep looking at the images to make sure I'm putting it on correctly. I certainly don't want to deal with it all night if it's not helping me. Maybe it's worth calling and asking them to check my data for leaks. I believe they can do that remotely, or at least they said they could. I haven't installed any software to do it on my computer yet. And, as we've discussed, the DreamMapper app isn't very accurate.

It sits under your nostrils and doesn't fit into them, so it seems logical some air would escape, but it feels like a small fan is pointed at me.

Are you supposed to also feel air on the top of your head where it connects?

With the cushion contact, should you feel a firm "connect" that stays in place while you sleep? It really seems to have too much ability to move around to me. It seems to shift when I change positions.

I'm going on vacation in a couple of weeks, and I'm really hoping to have all his settled before then. I don't want to have frustrated nights on vacation! If that happens, I'll surely "fail" my 6-week compliance check/doctor appointment. However, my insurance says that they only care about compliance at some 30-day period during the first three months. Doesn't have to be the first 6 weeks.

The DME did tell me to take along an extension cord since a lot of hotels don't have outlets right by the bed. When I was there, they were also trying to help a guy who needed an extension cord for an airplane. This never occurred to me, but I never can sleep on planes anyhow.

[RogerSC]

Just a short comment from someone who's tried a lot of masks...I always wash the silicone parts before using a new mask or new nasal pillows with warm water and a mild dishwashing detergent. This kills the initial smell for me.

[Jay Aitchsee]

It sits under your nostrils and doesn't fit into them, so it seems logical some air would escape, but it feels like a small fan is pointed at me.

The cushion should seal around the outside of the nostrils. It cradles the end of the nose. Think of it as nasal mask, like the pilaro, but way smaller, just about as small as it can be without being in the nares. The opening of the cushion should be inside the outer edges of the end of the nose. There's a measuring template in the package that measures the width and length of the nose to determine what size to wear. When the cushion is properly seated on the nose, there will be no air leaking to the outside from between the cushion and the nose and you should not feel any air on your face or in your eyes, but there will be some venting directly from cushion front center where there is a small vent slit. When you put the right size cushion to your nose, it should feel like it "fits". You may need to move up in size. Or, tighten the back strap. Or, maybe even move down in size. Is it possible you have the cushion mounted backward? It goes one way with the size mark on the cushion to the mark on the tube.

Are you supposed to also feel air on the top of your head where it connects?

Yes, in addition to the cushion vent in the front center, there is venting from the connection at the top.

With the cushion contact, should you feel a firm "connect" that stays in place while you sleep? It really seems to have too much ability to move around to me. It seems to shift when I change positions.

Yes, this mask needs to be fairly snug, but not tight to point of uncomfortable. It seems to me the back strap is most critical. When you put the cushion under your nose and pull the strap over your head to the back, it will feel tight until the strap reaches the back of your head. The top strap should be snug as well, but not tight. Mine will move back and forth some at the top of my head.