New to Cpap and dreading another night.

[khauser]

Knowing what I know about Pugsy, she probably LAUGHED HER *** OFF at "Bugsy", so don't stress over it.

I also have the heated tube with the System One setup. The tube does indeed feel warm, ESPECIALLY if I find it under the pillow, blanket, whatever. In open air I'm less likely to notice unless I HOLD it for some reason (with a good grip).

It's a good setup. No need to keep it under blankets ... the heated option makes than unnecessary. Your RT probably has more experience with the non-heated tubes (until very recently "heated" was not an option unless you got it from a third party).

The point of heating the tube is to prevent the humidified air from cooling which in turn would cause condensation (we call it Rain Out, because we get rained on, and OUT the mask goes! LOL ... that may not be the official reason...)

If you didn't have a heated tube then keeping it under the covers helps to reduce the rainout risk. But yes, with any nasal setup the hose can easily displace the cushion if dragged on. Well, any except the Tap Pap, which actually uses a mouth guard and your teeth to achieve incredible cushion stability. So far, I've only had one occasion where my Tap Pap pillows were dislodged by the hose. That's when I moved and the tube was "stuck" between the headboard and mattress. It about ripped out my teeth, and did cause the pivot to lose traction (thank God, say my teeth).

Tap Pap = GREAT Mask....

[Pugsy]

Knowing what I know about Pugsy, she probably LAUGHED HER *** OFF at "Bugsy", so don't stress over it.

Yep, I laughed. First thing that came to my mind was Bugsy Siegel. I was in one of those moods yesterday where I was rather grouchy (tax time again and I hate it) and once again my husband said "you need to do..." and it just got all over me..again.
He should know by know that telling me what I "should" do is not the way to word things.
Anyway....I was in a bit of a bad mood so I had to laugh about the Bugsy thing because I as about ready to order a hit on someone or have their legs broken...or fingers smashed.

[DJD52]

Once again Pugsy, thank you for suggestions. I'm such a ditz. Glad that I least made you laugh! That's always a good thing.

I'm in such a state that I can't remember a word from the time I read it until I type it!

khauser, I have had some experience with rain out. This GP put me on oxygen a few days after an at home pulse ox test because she freaked at the readings. I woke up with a snoot full of water and a killer headache the first night. I figured out quickly how to run the hose and it never happened again. Easy to happen in a cold room.
That Tap Pap is very interesting. I've worn so many mouth splints due to a bad case of TMJ, but not sure my jaw could handle that set up, worth asking my dentist about it tho. I really don't know where to go from the Pilairo. Too many choices for a newbie.

[Pugsy]

I really don't know where to go from the Pilairo. Too many choices for a newbie.

Look at the Aloha.

https://www.cpap.com/productpage/devilb ... -mask.html

It has a special piece of velcro for routing the hose that isn't shown in the pics at cpap.com


or the Swift FX

https://www.cpap.com/productpage/resmed ... dgear.html

While it doesn't have a special little thing to attach to the top headband it isn't hard to rig up something.

I used the Swift FX until the Tap Pap was released...so probably at least 2 1/2 years.
I have also trialed the Aloha for about a month last year when it was released. It ranked a real close second to the Swift FX in terms of how I liked it. Very stable and comfortable.
The reason it didn't beat out the Swift FX is my own person preference for "less on my face and had thing".....just me and my own preferences and why I went to the Tap Pap.

Those would be my first recommendations for a newbie wanting to try the nasal pillows.
The Opus 360 is pretty good too but the headgear not quite as easy to get situated just right. At least for me anyway.
The Aloha is probably a little more stable than the Swift FX (back strap likes to ride up a little) so for newbies I think it is one that should be at least looked at.
Over the years I have tried just about every nasal pillow mask out there. There's always pros and cons with any mask.
What we try to do is find one that has more pros than cons that fits our own personal preferences.
Mask preferences are highly personal. One man's treasure is another man's trash.

Do try some different nasal pillow masks if you are able. You never know but a different mask might be a lot better suited for you...of course it might also not be suited so great but you never know till you try and if you don't try you will wonder "what if".

[Always tired]

Change is good; especially when your face is new to this stuff and gets sore easily.
You may be cinching the FX up too tight; it should ride lightly on the bottom of your nose,
air pressure pushes it up like a puckery little kiss.
Alternate mask shapes will let your nose heal.
Cloth masks are very gentle on the face, in many positions.
If the triangular SleepWeaver (Advance) is too large, the élan has 3 sizes,
though the smallest is separate from the kit.
Welcome!

ChunkyFrog,
You do have a way with words!
And it explains the problem so well, heck I think I might try my Aloha tonight.
A T

[DJD52]

I had decided earlier that the Aloha was looking really good and was actually thinking about sending for one on our dime and not waiting for the RT and med supply co. I came online to find your post Pugsy and had to laugh. You "rock"!

I managed to rig things to get my hose attached on top of my hose or to my forehead today so can see that having the hose more stable and up would def help eliminate that hose pull, but, I can't imagine spending the night in that rig.
I purchased cloth and grip headbands, and used a knee high to tie the hose in place. The cloth slides off my hair and the rubberish grip material increased my headache and rubbed my face. Conclusion is I really need to get another mask asap. The Pilairo just isn't for me. Evidently my lower cpap pressure doesn't inflate the Pilairos butterfly area behind the nasal pillows and the double ply latex sticking is causing increasing red itchy rash. Concluding that I can't tolerate latex/plastic on my face so I can't have a date every night with the Pilairo.

Hubby would prefer I wait for the RT to change out the Pilairo and not spend $ but he doesn't have to deal with it... YET?
I'm thinking just send for the Aloha and change out the Pilairo for an Elan through the RT and med supply, at least I'd have a change if needed for now. Like the rest of you, I'm sure I'll be trying others over time.
I promised to try the humidity change so I will wait at least till morning to decide. (If I have another crap cpap night I'll be on the phone!)
Fear of fitting a mask myself is a disadvantage but at least I know I can DO this cpap marriage deal!! Just need to find "the" most comfortable for me.

[Pugsy]

If you buy the Aloha from cpap.com (our forum host) you can get return insurance.
$13.90
That way if you hate it you can return it within 30 days and get your money back less the insurance cost.
They will need a copy of your RX though. Do you have a copy?
I bet you like it though. The reason the return insurance is so low is because they don't get many returns.
Some of the other masks the insurance is $40 to $50 and more....lots of returns.

Yes, the lower pressure is probably a negative for the Pilairo. It needs to inflate well and it takes a bit of pressure to get it done.

Don't be afraid to change your humidity yourself....that's a thing that pretty much everyone says the patient is allowed to change based on what they are feeling. No one knows what you are feeling except you.
And just because the RT thinks that so and so humidity works for all the people...he/she may not know as much as he/she thinks.
It's your nose and you aren't doing anything bad by changing the humidity.
Very few doctors or DMEs are so strict about the humidity.

[DJD52]

[quote="Pugsy"]If you buy the Aloha from cpap.com (our forum host) you can get return insurance.
$13.90
That way if you hate it you can return it within 30 days and get your money back less the insurance cost.
They will need a copy of your RX though. Do you have a copy?
I bet you like it though.



No I don't have a copy of the RX. I haven't seen my GP since before the first sleep test and I never did see the specialist who read the results and sent them to her. (so I haven't even been told exactly what was in the test) The cost for the Aloha was $88 I think at Cpap.com... I'm sure it would beat out this Pilairo.

I have another night in, so one week down.
I did wear the headband lastnight, put a sock over the hose held in place by a doubled wrist strap and just 'routed' the hose under the headband (placed like a sweat band) On the plus side, this helped a lot to keep the Pilairo stay more stable and the dry knot has eased off quite a bit also due to increasing humidity. On the negative side I experienced my first leak, (I was awake) and info showed increased ATI in the info. (usually is 1 to 1.5, averaging 1.2 over the last 6 days but lastnight was 2.5) And no, I don't know good or bad. I am diagnosed mild to moderate, more toward moderate so thinking not bad. During sleep test wearing the Swift FX I had 0 ATI the sleep tech said.

Over all..I've got a good start! BUT... I am looking forward to something simpler and/or more stable as a night time partner. Aloha, Swift FX for her, Elan, and I want to talk to my dentist about the TAP PAP at some point. It may actually help with my TMJ..he will know.

Too bad we can't just run to walmart, get a new mask with easy returns.

[Pugsy]

We can get enough of the Swift FX mask parts on EBay that you can build your own mask.
Replacement parts don't require a RX but a full mask package does..how stupid is that
Buy the replacement parts without RX and build your own mask.

Short on time or I would go shopping to see if there are any good deals on EBay today.
I haven't seen much ALoha stuff there ...just mainly ResMed and Respironics stuff.

Or ask here on the forum...someone may have one that didn't work for them they would sell at a discount.

[DJD52]

Pugsy,
Someday I will learn how to add the part of a message as a quote to comment to. I haven't gotten that far yet.
Again, thank you. I didn't see that this message was here and I'm sorry I didn't reply. How do you know when someone replies to something you post?

Anyway, last crap cpap night with the Pilairo. That affair is OVER, I want a divorce!
I almost stomped it at 2am. I swear that when laying on my side the nasal cushion on the bottom collapses. (and I don't use a feather pillow) It just seems it's hard to inhale unless I'm on my back. I do have nasal congestion at night even with Flonase and a very recent Kenolog shot from my ENT. So, between the butterfly part being totally flat (due to my low pressure of 6 maybe?) and the lack of stability in headgear for side sleeping aiding hose drag on the mask (tried everything to route it not to pull on the mask) suffocation, sore nose inside and out, the redness/itch/bumps on the smallish area where the mask rests on my face, (sensitive skin and rosacia) ....my determination went AWOL lastnight in a hissy fit.

Called RT and told him. It seems the dme isn't quite what I thought it was when push came to shove.

I so understand why many of you have a favorite and a few masks to change out or fall back on!
I think I need to talk to my GP and get an RX (open preferably if possible) for cpap.com.

[DJD52]

Actually, the Aloha would have been my choice. Checking on how to swing that one.

[ultra runner]

Have you tried sleeping on a slant? Raise the head of your bed up 5 inches. PUt blocks, or anything hard that wont compress in a few weeks under both legs of the head of your bed. this will allow gravity to open up your air passage, making is easier to breath. Your blood pressure will drop slightly, and gravity will improve your circulation. This should relax your body enough to get the REM sleep your brain needs to restore itself.

[DJD52]

Thank you for the suggestion ultra runner.
I can't elevate the head of my bed as it's a water bed bookcase headboard attached to a soft sider water bed frame with drawers under it and a comfort sleep number air mattress now used in place of softsider. I can't move it at all... other than to pull out the drawers or tear it down. Actually getting comfortable isn't a problem.
I did fine with comfort and my nasal congestion before the Cpap/Pilairo. I just rolled over when one side of my nose got congested. I used a humidifier by the bed and a room air purifier too. (dogs in the bedroom) I have no BP problem. Quite frankly was shocked to be diagnosed with sleep apnea as I don't snore, but, doctor picked up on symptoms and I guess sleep tests don't lie.

[godwisper]

me too am having problems with the Pilairo....it wears ok and I always wear the strap over my ears...problem is that I get really sore nose after few minutes...tried lanolin and still no go.....1 in 10 it is ok for the rest of the night and I feel really relaxed but 9 out of 10 I literally have to change to my full face mask as I cant stick it and really hurts the inside of my nose....whats good about the pilairo is that I dont get any leaks and since I am a bit allergic to silicone it uses minimal straps and silicone on my face....

[Kenwood]

Do try some different nasal pillow masks if you are able. You never know but a different mask might be a lot better suited for you...of course it might also not be suited so great but you never know till you try and if you don't try you will wonder "what if".

I'm the "Poster Child" for Pugsy's quote!! Just read my thread and see.