Pilairo!

[portiemom]

Well, I'm just not ready to give on the PIlairo, when I use it my AHI is between .03 and .08 so I took the headstrap off and will try the Bellario tonight! Hoping it works as I love this pillow system, just doesn't infalte enough to keep it off my upper lip which makes it too hot and uncomfortable. I'll post my results so wish me luck!

[SolSionnach]

I just ordered the Pilario... mostly because the Swift FX for her is just not cutting it for me. I'm doing quite well without a chinstrap, but it doesn't stay in place nearly well enough for me.
Last night I woke at 4am with HORRIFYING aerophagia pain, and I'm determined to find a nasal pillow system that works for me.
They have to get the script from my MD, but I talked with the people there, so I don't think it will fall under the radar.

Bellario? That looks good to me, too!

[gertrude]

Aaaargh. I had high hopes for the Pilairo!

The advertising features a delicate hummingbird, but I feel more as if I slept the last 2 nights with a hulking Hummer on my face.



Trying to laugh because I feel so lousy. Persistant headache and very sore nostrils.

The one-size-fits-all strap is definitely too tight for me. I wore it just above my ears the first night and across my ears last night. Both placements mash the Pilairo into my nose. Putting it on the top of the head makes it even tighter. Tried running the strap under my ears part of last night, but that's too loose and not a good angle. So I woke up with the pillows dislodged.

It's hard to know if the pillow part will work even if I lenghten the strap. (Part of the mask digs into my face -- not the plastic attachments to the strap, but something else.) So I'm faced with the decision to send this back to the dme or try to make adjustments with velcro as posted near the beginning of this thread. The stubborn part of me wants to keep trying, but I'll probably end up with something that can't be returned and doesn't work for me or anyone else.

I wish F&P would sponsor a "recall" of this Hummer and provide straps of varying sizes or one that can be adjusted with velcro in the middle of the back.

I'm glad this has worked so well for others, but to me it proves have individual and variable this mask selection process really is!

[Pugsy]

So I'm faced with the decision to send this back to the dme or try to make adjustments with velcro as posted near the beginning of this thread. The stubborn part of me wants to keep trying, but I'll probably end up with something that can't be returned and doesn't work for me or anyone else.

Call your DME and ask them if the mask has to be in original and unaltered condition if it is returned. Explain that it might work if you do a bit of lab ratting. When a mask is returned to a DME they normally toss it in the trash can.
They can't do anything with it. It can't be sold or really used as a demo since it has left the store.
When they fill out paper work to get reimbursed from manufacturer I don't think that it involves the actual physical returning of the mask to the company that made it. They might just tell you it doesn't matter. Never hurts to ask.

[gertrude]

Good idea. Thanks, Pugsy!

[portiemom]

I have tried every way I can think of to lab-rat the pilairo nasal pillows with each of the headgears I have, the Bella Loops, the Swift FX, the Swift LT. for her but the pillows are not stable enough to lift off my upper lip and for me I feel as if I have a jellyfish on my face. I love the idea of this type of soft pillow inflated on my face, perhaps a strap from the tip of the pillow plastic up over the forehead and connecting to the head strap would be a great idea to lift it off the top lip and if they could make the headgear strap non elastic the pillow could inflate more it would be a better fit for some of us. IMHO they need to work on this because the pillows are so darn comfortable, but so not inflating to the max to make it worth while for me to keep at this point,,,, Urrrg, I was soooooooo wanting this to work.....

[gertrude]

AAaargh. Turns out I can't return it at all. So I'll just lab rat away.

I waited until the 3 month mark when the insurance would cover a new mask, and ordered the Pilairo from the DME figuring that I would be able to return it if it didn't work for me. Turns out that's not possible. I understood from what the DME person told me with the last mask that I would have 30 days to return a new mask to try another. And that was consistent with what I read here about normal DME policies. Well it turns out that that return policy applies only to the very first mask that I got when I picked up my machine. (The one that caused the bridge of my nose to bleed.) One return only for my whole CPAP career. Of course no one bothered to be clear about that. And they don't give you anything in writing about return policies. So all future experimentation to try to find a better fit is on my own dime. I can get another mask through insurance in 3 months, but if it doesn't work I'll need to replace it on my own. And they don't carry the Aloha at all, nor will they order it. WHAT A RACKET this is. I know from reading on this forum that this is not a manufacturer's policy, but the DME's.

Sorry for the rant. The combination of no adequate guidance on what might be good for my face shape and no returns is just a recipie for spending more money at the DME. Well, it will go to our hosts instead.

[Mundy]

FWIW: try stretching the band on the Pillairo before you cut into it. I gave mine a good stretch and it seemed to loose a bit of its elasticity without breaking down.
I'm still deciding if I like it though The one size fits all doesn't seem to fit my nose well. I wake up with a burning sensation in my nose.

[SolSionnach]

I got my trial Pilario last night, and couldn't make it work... yet.

My nose got damp and sweaty from contact with the pillow, so today I spent some time with an old t-shirt and some scissors. I came up with something that will stay in place between me and the pillow... and I'm going to give it another try tonight.

I contacted Karen at padacheek to suggest a pillow liner, and she's working on a design for the Pilario! Her liners made my Mirage Quattro very easy to use - I hope that whatever she comes up with for the Pilario is as comfortable.

I'll report back tomorrow... Wish me luck!

[123.Shawn T.W.]

I met Pugsy and her husband yesterday at the truckstop, and bought hers!

Last night I had about two minutes of struggle with getting it positioned right to stop leaks, even though it hurt the inside of my right nostril, thought this is not gonna work, but I'll give it a try for a bit anyways ... then ... I remembered that I forgot my PapCap! (I like the mask head gear on the outside)

So ... Got it all back on and it felt more comfortable! Still not great, but I fell asleep in 5-10 minutes! I woke up about 1.5 hrs later and the inside of my right nostril was very sore, but being stubborn and tired ... I went back to sleep!

I woke up again in about 45 minutes! This time my right nostril was worse and the tip of my nose was sore! I said no more!

I also felt a bit sweaty under the 3000 pound butterfly!

I switched over to my Swift FX ... But, even then my nose was just too sore! After10 minutes, I took it off and put on the Mirage Quattro ...

Even now eight hours later ... My right nostril is very tender inside, and my whole nose feels like I was punched in the nose!

I'll let my wife try it, and see what she thinks ...

[Suzjohnson]

What a treat that you had an opportunity to meed Pugsy and her husband! I laughed out loud when you referred to the 3000 lb. butterfly. I had a same problem, including the sore nostrils when I began with this mask and found that it was simply too tight because when I held the mask out from my face a little bit the sensation of weight, naturally, went away as did the pressure on the inside of my nostril. Try lowering the headstrap in the back so that it sits in the crease where the ear and head join. Another thing I found that helped was to put my chinstrap on over the headband then pull the mask forward away from my face stretching the elastic before actually settling the mask on my face. I nearly sent the darn thing back but ended up with it back out of the shipping box and spending time stretching the heck out of the headband. There are a number of excellent ideas for getting more slack in the band further back in this thread that might help you or your wife achieve a better fit. Oh, nearly forgot. I had to increase my lower pressure to 8 to get the goofy thing to "float". Raising the pressure from 7 to 8 actually seems to have improved my AHI so it's worked out for the good all the way around. Good luck!

Suz

[Pugsy]

Yep, we got to meet Shawn yesterday. He is a great guy.
I saw his nose and his nostrils. The regular nasal pillows (like Swift FX) even in a Large size aren't going to work.
He has long slotted nostrils. The round cones of most nasal pillows aren't going to be large enough to seal well in his situation. His report from last night even with the problems with the Pilairo is greatly improved from his past reports.
I also had the sore nose and had to move the strap down to my ear. His head size isn't all that large but it is larger than my head and I know if that strap was too tight for me it is going to be too tight for him as it is right now.
I had not used the Pilairo very long before I offered it to him so I really didn't get a chance to maybe stretch out the strap.
I have also suggested moving the strap to right above his ear. Also I think Karen is working on a barrel cozy for it. I think that would also help with the tenderness.

I think Shawn sleeps on his right side..hence more soreness on his right side. Like me with my left side since I sleep on my left side and the Bella Loops bug my left ear.

Even with my 3 years experience with nasal pillows I found that my first night with the Pilairo I also felt like I had been punched in the nose...moving the strap helped tremendously. If that doesn't work for Shawn then I think a minor modification in the strap would help more. That and a barrel cozy might be enough to allow for more comfort.

[123.Shawn T.W.]

After some thought ... While out for a walk while waiting for four new tires on my trailer ... I found a thin piece of spring stainless steel maybe 1/8" wide and 1/32" thick I cut off a 2" long piece and bent into a twisted "S" to lengthen the headband about an inch on the left side (yes, I spend 50% or more on my right side) I then wrapped it with electrical tape, and tried it on! Seems much better!

I did per Pugsy's sugestion while meeting her, keep the headgear low just touching my ears ...

I may try it again tonight ... Depends how I feel ... Right now I still have a very slight amount of discomfort from my stubbornness ... I may give it a night off ...

[Pugsy]

I may try it again tonight ... Depends how I feel ... Right now I still have a very slight amount of discomfort from my stubbornness ... I may give it a night off ...

Give yourself a night off if the tenderness is still present at bedtime tonight. Need to be able to tell if the modifications helped or not and if you start out with a sore nose......and wake up with a sore nose you can't tell if it helped much unless you wake up with a horribly worse sore nose...

[the_nap_ster]

Yep, we got to meet Shawn yesterday. He is a great guy.
I saw his nose and his nostrils. The regular nasal pillows (like Swift FX) even in a Large size aren't going to work.
He has long slotted nostrils. The round cones of most nasal pillows aren't going to be large enough to seal well in his situation. His report from last night even with the problems with the Pilairo is greatly improved from his past reports.

This is so interesting. My husband has the same slotted nostrils, and I think that's one of the reasons he's doing well with the Pilairo. He got his second 0.0 AHI ever last night, and I believe a big part of that is because this soft silicone gives his non-round nostrils a much better seal.

Shawn, I'm so glad you've lab-ratted an extension for the headgear. I think this mask has the potential to be AMAZING, but F&P sacrificed a bit too much for the one-size-fits-all thing, especially with non-adjustable headgear. I sincerely hope they offer an adjustable headgear (or at least the option to buy different sizes!) soon.