Help with Pantyhose Fix please

[jabberwock]

Okay, one night with the Twilight NP the way it came was enough for me, so I got out my trusty serrated steak knife and hacked away at it , after reading RGs compilation of Aura fix threads of course.

I am determined to make the decapitated version work for me, but it's not going too well so far. I decided instead of going out to buy a pair of tights, I would cut up an old t-shirt (have several that seem to have shrunk ) to make the straps. It happened to be a white t-shirt with a fair bit of stretch to it, so I figured it would do. I wrapped one of the strips through the bottom of the vertical grey hard plastic at the top of the interface, and then stabilized the pillow portion of the interface with the other strap, tying it upwards over the top of my ears.

Picture it.... I looked like I should have been in a WWI army field hospital . The problem is, the whole contraption still does not feel stable on my head. I love side-sleeping with it, but every time I move it shifts enough to cause leaks. What am I doing wrong ???

Also, is there any reason to leave the vertical hard grey plastic piece on the mask now that there is no headgear attached?

Oh yes, and I cut off a piece of the blue rubber from the headgear to put between my forehead and the top hard portion of the interface.

I really, really want this to work for me, and I will continue to tweak it as best I can, but I would welcome suggestions from those who have been able to make it work for them.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Aura

[Catnapper]

In my opinion the real fix for the Aura (whatever it is called now) is the strap across the nasal pillows. I use fishnet hose, for mine. Soft and very stretchy. Be sure to stretch the strap under the pillows and over the tip of your nose. Think of a sling, maybe. The strap does not have to be tight, but snug is good. Rested Gal ties her strap - but I sew mine to fit because I like it better that way. If you tie it, that is good too, but you see, it wakes me up to do that if I have to get up in the night. The strap at the top just holds things generally in place and does not need to be tight at all.

That is the way it works for me. Others probably have different fixes. I hope to read lots of them.

[tangents]

I cannot get my twilight stable with just the two ties either. I pull my hair into a high ponytail, and tie the interface hose to the ponytail. If you don't have hair long enough, then I think you could accomplish the same thing by supporting the hose directly over the mid-point or back of your head. OR, you could try tying the hose to the end of the grey thingy - I've been wondering if that would work for me, too, but I already cut mine off! Also, I use circular spongy makeup applicators (2) under the forehead part for cushioning. Let us know how you solve your dilema.
Cathy

[rested gal]

jab, do you have the main air hose hanging overhead so the air hose doesn't pull on the "Headrest" (yeah, the Aura has gone back to that name again...LOL!!) when you move your head or turn over?

As catnapper said, the main key to keeping the nasal pillows part stable is to use the lower strap as a sling of sorts. Not to just push them against your face, but to cradle them more from underneath than in front. With or without the headgear, that's the way I've always used the bottom strap...like a sling. I route the bottom strap upwards more toward the top back of my head than to just the back of my head.

You might try using something thicker than the piece of rubber strap as a forehead pad. Something thicker will keep the top farther out from the forehead, changing the angle down to the pillows. Making the whole thing sit at a different angle might work better for you. I eventually switched from using a piece of the rubber strap to using one of the dark grey foam filters for a Respironics machine. The foam filter as a forehead pad gave it just the right angle for me.

If part of the problem is the bottom strap slipping down off the upper back of the head, perhaps you might add a "cross piece" strap to go across the top of the head -- attached high on the sides of the bottom strap to keep the bottom strap from riding down.

Picture it.... I looked like I should have been in a WWI army field hospital.

Exactly!!

Oh, before you try all that stuff I mentioned, try this... when you feel a leak springing out at the nasal pillows, put your thumb and finger up on the two little tubes, as high up as you can. Pinch them closer together there with your fingers. If THAT stops the leak, then you need to tie or tape the two little tubes closer to each other. I have mine tied so closely against each other they look squashed, but air still goes through them fine.

Good luck!

[kteague]

RG's description of using the pantyhose tights strap as a sling for the pillows best describes what works for me. Haven't yet got the nerve to deconstruct mine. Waiting till I can replace it if the procedure goes wrong. The headgear does not work for me (as with many others apparently), so without the strap I could not use this mask.
Kathy

[ozij]

Try a folded tennis sock, legthwise, between you head and the headgear, Kathy.

O.

[tangents]

O,

Does that keep it from pulling out your hair?

Cathy

[ozij]

I think so -
O.

[jabberwock]

Thanks to all of you for your suggestions! I knew I could count on you...

Okay, so last night I did away with the tshirt strips and cut the legs off a pair of sheer pantyhose to use instead. I definitely preferred that -- softer. I used the bottom strap sling-style, tying it higher, almost on the top of my head. That worked better, except that it shifted a couple of times while I was sleeping on my side, and I thought for a minute I had gone blind

I will try putting something thicker behind the forehead piece, because I noticed several times that the rubber piece was sliding out of place. I did pinch the tops of the two small tubes together, but it didn't seem to make any difference. I will get a small piece of velcro ready anway.

I had it put together pretty well last night... what a treat to feel my cheek against the pillow again . I was pretty comfortable, and then I ROLLED OVER. It all turned to rat**** . I think what happened is that the hose tugged on the interface, twisted it to the side, the pillows popped out and the whole thing ended up hanging off my face ! I could have cried (but used a few choise four-letter words instead). I sat up, took it all off and redid the whole thing, but it never really sealed as well after that. I slept with it on anyway!

I do not have a headboard, but I "glued" a large 3M plastic hook to the wall about 18" above the mattress, hung a scrunchie on it and routed the hose through it. I wonder if the vertical grey plastic piece is preventing the hose from turning with me? Is it okay if I cut it off? There will definitely be no ponytail to tie the hose to, since my hair is about 2" long all over.

I decided to let the pillows leak if they wanted to, and actually slept pretty well after redoing the whole contraption. But I still haven't figured out the leak rate on my machine. I am using the 420E as a straight CPAP right now, so that at least if there is a leak the pressure won't go through the roof and wake me up. Last night's data showed an average leak of about .55/ls with, I think a low of .48 and high of .58. What does that mean? Is it good or bad? Overall, my sleep cycle was 75% normal, which is above average for me. AHI was not so good... 4.2.

Was it leaking badly, or should I continue doing what I have been doing, with the exceptions as noted above and wait to see if it will settle down?

Bonnie

[Dark_Star]

Way to go Bonnie!

The pantyhose straps are what "does the trick" ...

The Twilight NP (de-capitated) setup is verrry comfortable. I actually look forward to going to sleep. I usually start out on my back and then end up on my side. It is amazing to get 6-7 hours of sleep! Last night my 6 year old crawled into bed with me in the middle of the night and I did not even notice .... in the old days my snoring would keep him away!

[rested gal]

I had it put together pretty well last night... what a treat to feel my cheek against the pillow again .

YES!!! That's what I love most about the Headrest (Twilight-Aura.) Feels so good to sleep on my side with head in the old natural sleep positions, cheek snuggled flat down against the pillow.

I do not have a headboard, but I "glued" a large 3M plastic hook to the wall about 18" above the mattress, hung a scrunchie on it and routed the hose through it.

I don't have a headboard either. What you fixed sounds good. My arrangement is a swivel arm plant hanger screwed into the wall, also about 18" above my head. The arm of the plant hanger (with scrunchie dangling out at the end) extends out from the wall about 8 inches and can swivel all the way to the left or right when I turn over. I wonder if extending the scrunchie outward from the wall prevents the hose from tugging better than having the hose scrunchie attached almost directly to the wall.

I wonder if the vertical grey plastic piece is preventing the hose from turning with me? Is it okay if I cut it off?

Dunno if that's interfering or not. My guess would be it's not making any difference; but sure, it's ok to cut it off.

I decided to let the pillows leak if they wanted to, and actually slept pretty well after redoing the whole contraption.

Good. If the sound or feel of the leaks themselves don't bother you enough to keep you from going to sleep, they are probably not "bothering" the machine much either. The machine will compensate for slight leaks, even if the leaks go on all night.

But I still haven't figured out the leak rate on my machine. I am using the 420E as a straight CPAP right now, so that at least if there is a leak the pressure won't go through the roof and wake me up. Last night's data showed an average leak of about .55/ls with, I think a low of .48 and high of .58. What does that mean? Is it good or bad?

I'll defer to another 420E user, like ozij, who's better with decimal points than I am!

I looked back through a lot of my old SL3 reports and can't locate where you're seeing leak data stated that way. But I was so accustomed to looking only at the leak graph line on the 96 hour graph, perhaps I didn't know where to look to find the leak rate given as average/high/low leak rate. The 96 hour graph is almost the only thing I ever looked at during the year or so that I used the 420E. Sweet little machine! My leak rate usually stayed pretty close down at .4 l/s on the leak line of the 96 hour graph.

AHI was not so good... 4.2.

That's still a "good treatment" AHI since it's under 5.0. As I understand it, most normal people who don't qualify as having OSA can have some apneas and/or hypopneas during the night, so you're doing well even with some leak problems yet to tweak out. (Heheh..."qualify"...ain't we privileged? )

Was it leaking badly, or should I continue doing what I have been doing, with the exceptions as noted above and wait to see if it will settle down?

Of course it's nicer to have a leakproof seal. There are times when I wake up during the night to feel a bit of air leaking. Usually I can just shift the pillows a bit with my hand to stop the leak, and go right back to sleep. I think as the night goes on some moisture (not really "rain-out") or skin oils can sometimes make any nasal pillows a tad slippery and more apt to move a little.

[ozij]

Bonnie,
I too found that I need something thicker between my forehead (hairline) and the mask (what is left of it). On my face, the seal seals better when it's angled out a bit. With the scrunchy attached to a nail (I looked for a swivel arm plant hanger more that once!) hose management is touchy. The length has to be just right - not too much and not too little for the whole thing to swivel along with me. Sounds like yours may have been a little short. Try fiddling around with where you place the scrunchy on the hose till you find the length of hose that doesn't snag on your pillow and doesn't pull the mask off. I can just reach up to the scrunchy to do that when I'm lying down.

If you set your machine on APAP with the top pressure equivalent to the bottom pressure, you'll have CPAP therapy, with all the data included in an APAP report.

The 420e reports liters per second of leak, unlike other machines that report liters per min. .55 l/s is 33 l/m (liter per minute) and how good or bad that is also depends on your mask and pressure. At a pressure of 7 my average leak is .40 l/s with the Aura.

It's the minimum and maximum difference that let you know you have some real swings, and the fact the your averages is nearer the maximum than it is to the minimum shows - what you already know - that you had some higher leaks.

In APAP mode (even with top and bottom pressure equivalent) the 420e show a pink line which - as far as I know - is the maximum leak the machine can handle and still give therapy. This too varies according to pressure. You'll have to see how many times, if at all your (red) pressure line crosses this maximum leak line, and for how long.

If you export the data, you'll find that the *.96h report give you the exact number of "maximum computed leak" as well as the minimum and maximum measured. I'v don't know if this is true in CPAP mode as well as APAP mode.

O.