Pilairo!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Dormejo
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Re: Pilairo!

Post by Dormejo » Mon Jul 30, 2012 3:23 am

Third night into CPAP.

So far so good with the Pilairo. My only gripe is I have one sore ear where the strap/band sits during the night. I guess it must be luck if the one size fits all works, I'm impressed by the comments about the other masks and will most likely purchase a spare, not sure if I will buy another Pilairo?
Cheers
Sleep Well.....

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Pugsy
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Re: Pilairo!

Post by Pugsy » Mon Jul 30, 2012 9:30 am

Night number two with the Pilairo. Lowered the strap placement and no more nose discomfort and I suspect no more piggy nose.
I actually decided to look at the directions this morning and where I wore it the first night is where the picture shows it.
I don't like the strap touching my ears though. It tends to want to fold down the top of my ear so I went with about an inch above my ears. So can't go that low.

For some reason I am still feeling tiny amount of cool air blowing on my face where I should not be feeling air (upper lip area). No matter which way I turn the vent so I don't think it is the vent. It isn't loud though. At first thought the nasal pillow had become a tiny bit unseated but repeated reseating and making sure that it was on properly didn't help. Finally decided to heck with it and just went to sleep. Leak line report was unremarkable. I will try to play with it some today while awake and have more time.
I am pretty sure I am missing some little something. I didn't have that occur with the strap higher on my head the first night. So it may be related to strap placement and over all sealing.

AHI was better..2.84 and 2.07 of that was clear airway and I think I was awake during one little group of them. No big deal.

Interesting to note that with the Pilairo there is no way I would be comfortable using the mask if the machine wasn't on...like with a power failure. That thing has to inflate for air movement to be comfortable and we need pressure for it to inflate. I can't move enough air to do it myself.
This is the total opposite of what I found I could do with either the Aloha or Swift FX. I can breathe easily and comfortably with the power off just using the vent holes for air transfer with either of those masks.

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pacificpap
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Re: Pilairo!

Post by pacificpap » Mon Jul 30, 2012 1:16 pm

Third night on Pilairo, the first pillows I've tried. I don't find the fit too tight and I have a large head. But I do have pain in the nostrils in the morning, though it goes away quickly and seems to be getting better. Putting the strap below my ears makes the seating/angle feel weird. My leak line looks a lot like Pugsy's and similar to what I had with the FFM, but unlike the FFM leaks, the machine seems to deal with it much better because mask pressure isn't ever affected. So my AHI has been <= 1 and it's made a huge difference not only in terms of effectiveness but also comfort and being able to sleep without interruption. So I'm very happy with the Pilairo, my only complaint being the nasal pain.

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Pugsy
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Re: Pilairo!

Post by Pugsy » Mon Jul 30, 2012 1:28 pm

I think some of the nasal tendersness is simply from virgin territory having something up against it for the first time. The Pilairo covers and touches more of an area than my Swift FX nasal pillows. So maybe part from a little piggy nose syndrome and part from virgin territory. Especially for newbies who have never used nasal pillows.
Back when I first started therapy it took a couple of weeks for my nostrils to not have a little tenderness. Not hugely painful and went away rather quickly. I suspect the same thing will happen with the Pilairo once the nose gets used to having something pressing up against the nostrils as long as it isn't too tight to start with.

Now to add insult to injury. I seem to be getting a nice painful zit at the bottom of my nostril. Just a coincidence I know and totally unrelated to nasal pillows. Not my first one and won't be my last one. Very annoying though.

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sylvie
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Re: Pilairo!

Post by sylvie » Mon Jul 30, 2012 1:36 pm

Pugsy wrote:as long as it isn't too tight to start with.
This, folks, is the key.
Avoid tooth extractions (including wisdom teeth) & train-track braces; find a functional orthodontist at http://iaortho.org/.

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squid13
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Re: Pilairo!

Post by squid13 » Mon Jul 30, 2012 5:52 pm

Pugsy wrote: I seem to be getting a nice painful zit at the bottom of my nostril
If you have seen the movie My Big Fat Greek Wedding put some windex on it, it cures everything.

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portiemom
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Re: Pilairo!

Post by portiemom » Mon Jul 30, 2012 5:55 pm

Ohhhhhh how I wish this mask worked for me. I just love the pillows, except when it doesn't inflate immediately, because I can't breathe through it with the machine off. I am not sure I'm willing to mess with it, as I had a very sore nose this morning and the clips left deep marks on my face. Of course I do press my face into the pillow while sleeping.

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Dormejo
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Re: Pilairo!

Post by Dormejo » Tue Jul 31, 2012 12:45 am

[quote="Pugsy"]Night number two with the Pilairo

Pugsy thanks for your report...

How do you compare the Pilairo with the other masks you listed in your profile. I am thinking of adding another mask to my collection and not sure which way to go, given this mask the strap is very fine and not bulky.
Can you provide your thoughts??
Cheers
Sleep Well.....

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Pugsy
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Re: Pilairo!

Post by Pugsy » Tue Jul 31, 2012 7:54 am

Dormejo wrote:Pugsy thanks for your report...

How do you compare the Pilairo with the other masks you listed in your profile. I am thinking of adding another mask to my collection and not sure which way to go, given this mask the strap is very fine and not bulky.
Can you provide your thoughts??
Jury is still out on the Pilairo for me. It has its pros and cons and you will find that every mask out there has some pros and cons.
Also you will find that sometimes my pros might be your cons.

I moved the strap even lower last night so that it barely touched my tops of my ears. So it had a tendency to fold my ear down a bit which I find annoying. No marks on my face this morning though. Finally it seemed to stay where I wanted. About as comfortable as just a little bit higher placement. Still no sore nose. I suspect the first night nose soreness was due to piggy nose from the strap riding higher on the back of my head...just about where the picture shows it riding. My leak line wasn't so great this morning but I don't think that it had anything to do with the mask. More like everything to do with open mouth. Still while I did go past 24 L/min line a couple of times it wasn't prolonged. Haven't looked real close but maybe 15 minutes total from 3 or 4 little short lived times to 24 line. For some reason I am staying more and more on my back and I think my mouth likes to fall open sometimes when I am on my back. Not all the time thank goodness. I don't want to be on my back because of back pain. Heck this morning I was dreaming my back hurt and I couldn't find my pain pill. Woke up...yep on my back. So I don't really think that my leak line's less than stellar performance was related to the Pilairo. I have seen the same thing with the Aloha and the Swift FX.

If the Pilairo had a smaller presence on my nose it could be a number one on my list. But it doesn't and it feels "large" on my nose and since I have my own "less on my face" thing...it comes up a little short in that category. It isn't unpleasant at all though. I don't wake during the night fiddling with it for sure. So it is quite comfortable. It's a keeper for sure for me.
Not perfect but then I can be real nit picky and say no mask is ever "perfect". I look at them really close when I try them.

I am thinking that the ones having issues with comfort (like piggy nose) may have a larger head than mine or perhaps wearing that strap to high on the crown. I don't care that they say "one size fits all" or not. There is going to be more tension with the straps when people have larger heads or wear that strap higher. No way around it. Yes, it will stretch and fit larger heads but I can see it not doing it comfortably for some people.

The pillow material for the Pilairo is awesome comfortable. Just wish there was a little less of it.
The Swift FX or the Aloha does have "stiffer" material but not all that horribly stiff and when worn really loose a person doesn't even barely feel it. I don't use the Bella Loops all the time. Sort of whenever the mood strikes me to change things. About 50/50 of the time.
Comparing those 2 (Loops vs Pilairo) is hard because the beauty of the loops is the absence of the strap. For someone who couldn't make the Loops work...for sure try the Pilairo though. The FX with the traditional head gear...man that is close one.
The Pilairo is going to be much more forgiving if someone has a tendency to wear the FX too tight and I think a lot of people do.
I don't though. I wear the FX so loose that I can put it on and remove it with one little pinky finger if I had to and do it quickly and easily.

I figured out where the air was coming from under my nose with the Pilairo the other night. There are some tiny vent holes down at the bottom. Majority of the vent holes are on top were you can turn them to whatever direction you want. There are vent holes at the bottom and probably those people using higher pressures might feel that air a little bit. This is not to be confused with the nasal pillow not being seated properly. These vent holes are quiet and produce a gentle barely felt breeze on the area between lip and nose. Rather cooling and soothing once I realized it was from the vent holes and no need to worry.

I need more time with the Pilairo to see where it is going to rank compared to the Swift FX (either headgear) or the Aloha.
I also need to take the time to put each one on for a few minutes and make note of how it feels and where...with each of those 2 masks back to back in short succession so I will "remember" the feel of each. I haven't used the Aloha since the first part of May so I have sort of forgotten how it feels.

For those with the strap marks with the Pilairo and everything else perfect. A bit of fleece using velcro closure should not be a problem. Can't be traditional sewn closure unless someone figures out how to undo one side of the Pilairo strap. Wouldn't have to be very long though. Just a short piece of felt wrapped around that part of the strap that touches the cheek. One could even use super glue I suppose or even tape.

At first I thought that for newbies the Aloha might be a better choice but after 3 nights with the Pilairo I think that for newbies it would be fine. The one size fits all thing eliminates the tendency for newbies to tighten the straps too tight. For most people I think just letting the strap ride lower on the back of the head instead of the crown will allow enough less tension for things to be comfortable. For people with larger heads and the tension is just not comfortable then it would be real easy to add and little extension to the head strap if wearing the strap lower on the head didn't solve the problem.
It is amazing how that little strap stays in place though. ResMed should take a lesson from F & P on that and use it on the Swift FX.

So like I said pros and cons. I need more time with the Pilairo to see where it ranks in my own preferences. At first I didn't think it would even be a keeper but with that strap sitting lower on the back of my head and never moving and now that I figured out it where that air is coming from and I suspect I will adjust to the wonderfully soft but (to me) very large pillow presence. Just need to give it about a month (like I did the Aloha) to see where it ranks.

I guess my only real issue with the Pilairo now is that huge hummingbird pillow on my nose. I know it is wonderfully soft and I don't wake up during the night worrying with it....I just like less on my face. Now if I didn't have such great success with the Swift FX or Aloha...no contest.

Also remember....I have used either the Swift LT or the Swift FX for over 3 years. I am used to that type of pillow system.
The Aloha is similar system. The Pilairo is a totally different pillow system and it is going to take me a bit of time to get used to it. Sometimes change is difficult to adapt to.

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portiemom
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Re: Pilairo!

Post by portiemom » Tue Jul 31, 2012 9:07 am

Pugsey, '
In your opinion, is there a cover type thing that can be made for the Pilairo near those clips, they seem to leave a big mark on my cheeks as even when I put the straps low on my ears the whole pillow base leaves bad marks. Perhaps my pressure set at 9.4 is not enough to inflate the pillows adequately for my face?

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KimberlyM
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Re: Pilairo!

Post by KimberlyM » Tue Jul 31, 2012 9:36 am

What is everyones EPR settings? I find that when the EPR is set to 1 or off the mask stays inflated and is more comfortable, but I can't breathe out that way. Maybe those who are happy with the mask don't use the EPR feature?

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pacificpap
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Re: Pilairo!

Post by pacificpap » Tue Jul 31, 2012 9:39 am

My EPR is at 3 and there's definitely some mask movement as a result. I don't mind it too much, and the EPR really helps me.

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sylvie
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Re: Pilairo!

Post by sylvie » Tue Jul 31, 2012 9:41 am

I don't use the EPR feature.
Avoid tooth extractions (including wisdom teeth) & train-track braces; find a functional orthodontist at http://iaortho.org/.

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Pugsy
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Re: Pilairo!

Post by Pugsy » Tue Jul 31, 2012 9:43 am

portiemom wrote:In your opinion, is there a cover type thing that can be made for the Pilairo near those clips, they seem to leave a big mark on my cheeks as even when I put the straps low on my ears the whole pillow base leaves bad marks. Perhaps my pressure set at 9.4 is not enough to inflate the pillows adequately for my face?

Oh yes, fixing up some sort of fleece cover would be easy. Let me play with it a bit and see what I can come up with. If we could slide on one of Karen's side covers it would be perfect but I can't see anyway to slide something on...hence the need to secure with velcro or something. I would think a medium weight fleece would add enough padding to do away with the marks.
I have some extra fleece and some glue..will try that first.

I know what you mean about the inflating thing. Since I am using VPAP with 9/13 I have the 13 side of it to help.
Let me also play with something around 9 or 10 straight cpap to see if that makes a difference with the inflation. Last night I spent more time just fiddling with it to evaluate the inflation thing. I put the pillows up to my nose and didn't secure it with the strap to see if my breathing would be easier (like with power off) and it was and I was able to inflate it with my own breath and not rely on the machine to do it. I wonder if the added tension of the strap placement sort of squishes the pillows just a little and thus makes it harder to inflate. Try it yourself...don't use the straps at all. Just hold the pillow up to your nose like you would if you wear it at night and see if you can breathe easier with it. It was hugely more comfortable to me that way then when I first start with it right before machine kicks in.

Those wondering about EPR...I use a VPAP 9 exhale and 13 inhale. Imagine your EPR at 4 and that would be what it feels like and yes there is a definite increase and decrease in the inflation of the pillow. I am getting used to it though. It was annoying at first but now I barely notice it.

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Pugsy
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Re: Pilairo!

Post by Pugsy » Tue Jul 31, 2012 10:16 am

Pugsy wrote:
Oh yes, fixing up some sort of fleece cover would be easy. Let me play with it a bit and see what I can come up with.
Anyone who has the Swift FX and is having marks on the cheeks. Use the Swft FX supplied side strap covers. Easy to apply with its velcro closure and the fit is perfect. Slide the end all the way to the base where pillow attaches for complete coverage. More than enough length is left on the other end.
I am unsure if it is enough padding to prevent the cheek marks but I think it depends on facial tissue, tension and just how easily some people get marks and others do not. Worth a try though. Might be enough and doesn't add bulk to the overall straps.
Quite comfy from initial trial.

I seem to have misplaced the fleece I was thinking about to make some homemade covers but found the Swift FX supplied covers which aren't enough for the FX and thought maybe they would work for the Pilairo. Worth a try.
In the meantime I need to go find that fleece material that I have misplaced.

Edit: I found my fleece. Just like Karen's at Padacheek that she uses for the Swift FX side strap covers...so that weight.
I have one side of the Pilairo covered with the Swift FX supplied Pink covers and I have the other side with the slightly denser fleece. I just taped it around the strap and that little buckle thing. Tonight I will wear the Pilairo with the strap high enough on my head that I am pretty sure I would have cheek marks. I want to see if the pink covers are sufficient or if added density is needed. Initially both sides are quite comfortable and the added bulk is not an issue.

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I may have to RISE but I refuse to SHINE.

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