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New ASV user, frustrated and a bit confused.

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Expand view Topic review: New ASV user, frustrated and a bit confused.

Re: New ASV user, frustrated and a bit confused.

Post by Kiralynx on Mon Mar 19, 2012 12:43 pm

DavidT wrote:I have tried putting the mask on and watching tv. As I sit there watching tv, it blasts me...I'm wide awake and haven't stopped breathing as I watched tv...I guess just not breathing often enough.??


A number of folk have recommended other full face masks for you. I was, and am, claustrophobic. I cannot stand having THINGS on my cheeks. The idea of a chin strap really freaked me out. I tried taping and nearly panicked myself through the roof.

There are two masks which work for me -- the Respironics Comfortlite 2, and the Aeiomed Headrest. I'm using the Headrest more often because it's smaller and cooler, and I'm dealing with a bunch of sudden heat flashes as a result of hormonal issues from my cancer surgery. (The bed fan, available from our hosts, helps.)

Now, I did need a chinstrap, but I designed and built my own -- I took a 4" diameter piece of hard foam, cut a piece 4" long, and drilled a hole with an apple corer through the center. Then I made a strap -- I currently use half of a worn-out CL2 strap to go through the center, and covered the foam with fleece from Pad-a-Cheek. Strap goes around my neck, and the foam tucks under my chin like a St. Bernard's brandy keg.

I also lab-ratted the Headrest (which has to be the most lab-ratted mask in the history of CPAPTalk) but cutting off the thick rubber straps and putting a CL2 strap on it, using an extra strip of velcro to hold the forward straps over the mask.

Having gotten this rigged, I attempted to sleep... and discovered that as I was falling asleep, my breathing got shallower and slower and shallower and slower. I'd never noticed it before. So I started consciously breathing. And counting my breaths, like sheep.

Typically, I would drift off to sleep, only to wake a couple hours later. So I'd start counting again, and drift off... to wake a couple hours after that.

Eventually, I apparently managed to train myself not to slow and shallow my breathing while I was falling asleep, because I didn't get the BLAST of air that some people report. Sometimes, I've awakened and wondered if the machine was even on.

Oh, I should note that I'm a side sleeper, and the CL2 and Headrest are ideal for that.

Re: New ASV user, frustrated and a bit confused.

Post by Snooozer on Mon Mar 19, 2012 8:07 am

I am fairly new to a full face mask too and was having leak problems. I ordered the sample pack of Remzzzs and was so pleased I have now ordered a months supply. May try to make some of my own as suggested on other posts eventually. They are very soft on the skin and I rarely have a leak now. My pressure isn't too high though (8), so I can't speak for higher pressures. Hang in there, you'll find a combination that works for you and you will be snoozing away.

Re: New ASV user, frustrated and a bit confused.

Post by JohnBFisher on Tue Feb 21, 2012 9:51 am

It sounds as if you are off to a good start. You can see why we agree that the transition to sleep can take some adjustment. It still awakens me when the pressure ramps up. But it no longer alarms me. Instead, you will probably come to welcome it, since you know sleep will soon follow.

Re: New ASV user, frustrated and a bit confused.

Post by DavidT on Mon Feb 20, 2012 7:58 pm

Thank you all so much for taking the time to comment on my posts and for offering encouragement. Last night I had my most successful experience yet. I made it just over 5 hours on the machine and had an AHI of 2.74. I had no Apneas, according to the data from the machine. The mole skin helped my nose somewhat and we'll see how it goes tonight. I'll try to relax and let the machine do the work tonight.

Re: New ASV user, frustrated and a bit confused.

Post by sandman19 on Mon Feb 20, 2012 4:30 pm

David T, Welcome to the forum. As usual, you have received a lot of excellent help-our forum is great that way. I am completing two weeks on the PR REMstar System One Auto SV Advanced with moderate beginning pressures. I leaked too much with nasal pillows and the Hybrid didn't fit well. In three nights I am very comfortable with the Mirage Quattro. With comments here on the forum, a video and my RT, I lossened everything up, I let it "fill" when I turn my ASV on, and gently finesse the mask onto my face. Although I sleep on my sides I lie on my for 10 minutes or so to let the mask warm up, do a short meditation to get my face muscles relaxed and gently make any small adjustments needed-usually none. When the mask is "rocking" with my inspirations/expirations and floating on my face, I can turn on my sides and sleep. Remember, FINESSE!

Are you using a ramp to help ease into the pattern of the ASV? Many people like it.

My wife and I both have problems mainly with central hypopneas and apneas-hence the ASV. However, we have many of them in Stage One sleep while we still have some awareness-may even think we are awake. In that state it seems strange at first to have the machine ramping up so much to help us breath through the centrals were are not aware of. I now think of it as my "friend" that will work so I can totally relax and sleep. I actually enjoy putting the mask on and letting the machine take over while I drift into Morpheus.

Good luck!

Sandman19 (I will get the machine info listed soone).

Re: New ASV user, frustrated and a bit confused.

Post by JohnBFisher on Mon Feb 20, 2012 3:36 pm

[email protected] wrote:I just solved a problen like this for my mother ... I took 2 face mask liners + sandwiched a piece of PELLAM between them. Secured both sides w/fabric glue + cut the outline of the liner. Mask fit perfectly, no irritation, no leakage. She had just had a stroke + was left w/a bit of a droop on 1 side.

You can find PELLAM in most fabric stores, craft stores, etc. It comes in several thicknesses + is really wide; you'll only need 6-8" of it. It is used as a batting for comforters + lining heavy coats, etc. It is washable - but I'd stick to hand washing.

Hope this helps!

Barb - who is not dead yet - :lol: :lol: - I *love* the idea. One thing I've noted is that throughout the night the contour of my face changes. I suspect that as I go deeper in sleep my muscles relax more. I know my mouth opens - which also changes the contour of my face. Additionally, this would allow the mask and face to change independently and would act to "caulk" between the face and mask. Brilliant. I will have to try this. It might also be the type of thing that Pad-A-Cheek would like to create for those of us using ASV units.

THANK YOU for sharing this excellent idea. I *WILL* try it. My wife quilts, so this should be pretty easy for me to put together form scraps.... BRILLIANT!

Re: New ASV user, frustrated and a bit confused.

Post by [email protected] on Mon Feb 20, 2012 2:59 pm

I just solved a problen like this for my mother ... I took 2 face mask liners + sandwiched a piece of PELLAM between them. Secured both sides w/fabric glue + cut the outline of the liner. Mask fit perfectly, no irritation, no leakage. She had just had a stroke + was left w/a bit of a droop on 1 side.

You can find PELLAM in most fabric stores, craft stores, etc. It comes in several thicknesses + is really wide; you'll only need 6-8" of it. It is used as a batting for comforters + lining heavy coats, etc. It is washable - but I'd stick to hand washing.

Hope this helps!

Re: New ASV user, frustrated and a bit confused.

Post by Mary Z on Mon Feb 20, 2012 10:04 am

I use the FitLife Total Face Mask, but am currently on Bilevel. I have very little problem with leaks.
They allowed me to use the FitLife during my trial of ASV. During my sleep study with ASV the mask had some bad leaks as the pressure really ramped up. I know ResMed only recommends certain of their masks to be used with ASV. I am starting the process to get ASV and will report back on the mask issue. I have bad problems with breakdown on the bridge of my nose (I do prefer FFMs and am a mouth breather) so I really hope I can continue to use the FitLife with my ASV.

Re: New ASV user, frustrated and a bit confused.

Post by JohnBFisher on Mon Feb 20, 2012 8:26 am

DavidT wrote:... I like the idea of the total face mask ... has anyone else had success with the total masks on ASV? ...

To the best of my knowledge there is no one on the forum that uses the total face mask. I suspect it would have as much or more problem with leaks as a full face mask.

DavidT wrote:... I have to use Apria (no choice with my insurance) and they say I only get ONE mask exchange ...

I think the mask manufacturers are the ones that eat the cost of the mask. But I don't know for certain. Some DMEs make weird rules that do not make any sense based on the business. Apria is one of them.

DavidT wrote:... I asked about trying my current mask (Resmed Mirage Quattro) under the highest pressure when they brought the machine, but the therapist said that wasn't possible with the ASV. ...

Sigh! Those therapists know less than the doctors about these machines. Just hold your breath. That's the best way to ramp up the pressure to the highest pressure.

DavidT wrote:... I'm going to try mole skin on the bridge of my nose tonight, but I don't see any way that this mask will work for me. My nose and cheeks have been sore all day and it feels like (stings and small bumps) a little rash is forming where the mask sits around my nose...arghhh. ...

Hmmm... Sounds as if you might have a sensitivity to the silicone seal. The mask liners might make a LOT of sense. REMzzzs provides a "sample" pack, which costs less if you are uncertain about using them.

Another point to consider is that the Quattro Full Face Mask (and the Quattro FX) should not be tightened too tightly. Again, you can simulate an apnea by just holding your breath. That's one way to see how well it holds against the pressure changes. Still, I *know* that it takes more pressure than most users require. It normally takes a while for the mask and strap marks to leave my face each morning.

DavidT wrote:... guess I need to figure out how to add that in my signature line. ...

You've registered on the forum and registered your equipment. You are making great progress there. Though it won't make much difference on this post, in the future you'll find it makes it easier for others to tailor their remarks to your gear.

DavidT wrote:... Don't know how long I'll make it with the machine tonight, but I'm going to try. Thanks for your advice and encouragement. ...

One day at a time. I used my CPAP/BiPAP and now this ASV unit just one day at a time ... for more than 20 years. And it's the advice and encouragement of others that has made that possible. Others helped us. We try to help others. It's one reason this is such a remarkable (and vibrant) forum.

Re: New ASV user, frustrated and a bit confused.

Post by JohnBFisher on Mon Feb 20, 2012 8:12 am

Bons wrote:... Using the machine when awake to get used to it is a good idea when using a straight cpap or bipap, but I'm going to respectfully disagree for once with the board guru on all things ASV and suggest that it may not be a good thing with the ASV. ...

Actually, I was hoping he WOULD have those blasts of air. It's one way to become accustomed to it. We all tend to breathe a bit irregularly while we are awake and it is a great way to start to become adjusted to those wild changes of pressure. It's also one way to see how the machine can actually start to teach us to breathe a little more regularly while we use it.

Re: New ASV user, frustrated and a bit confused.

Post by Grand-PAP on Mon Feb 20, 2012 8:07 am

Bons wrote:Breathe over the machine - if you continue to inhale when it thinks you should be exhaling and vice versa, it will adapt to you, and when you fall asleep you will adapt to it.

And when you scream into the face mask from sheer frustration, it makes a really cool noise :roll:


Ditto on Bons' comment regarding breathing over the machine. After four of five nights of fighting it, I relaxed, breathed normally and now I'm normally asleep within 5 - 10 minutes.

David, I also had the bridge of the nose problem. Mole skin helped a little, but the final solution was a pad-a-cheek liner. Since I got it, the problem has been eliminated.

Bons' screaming comment also has merit!

Re: New ASV user, frustrated and a bit confused.

Post by DavidT on Sun Feb 19, 2012 8:57 pm

Thanks for the advice. I don't mind wearing it while watching t.v., but perhaps it hightens my anxiety when it blasts me while just watching t.v. I'll take your advice tonight and see...can't hurt.

And YES, I have already screamed into the mask...thank goodness my wife is sleeping with my daughters while I adjust.

Re: New ASV user, frustrated and a bit confused.

Post by Bons on Sun Feb 19, 2012 8:49 pm

David,
Using the machine when awake to get used to it is a good idea when using a straight cpap or bipap, but I'm going to respectfully disagree for once with the board guru on all things ASV and suggest that it may not be a good thing with the ASV. At least, with my irregular breathing pattern anyway, it was a lesson in futility. You might just have to tough it out and eventually it will get easier to sleep with it. It took me weeks of being awake up to an hour, but eventually I managed. Breathe over the machine - if you continue to inhale when it thinks you should be exhaling and vice versa, it will adapt to you, and when you fall asleep you will adapt to it.

And when you scream into the face mask from sheer frustration, it makes a really cool noise :roll:

Re: New ASV user, frustrated and a bit confused.

Post by NateS on Sun Feb 19, 2012 7:49 pm

DavidT wrote:I have tried putting the mask on and watching tv. As I sit there watching tv, it blasts me...I'm wide awake and haven't stopped breathing as I watched tv...I guess just not breathing often enough.??


David,

If you go back to your Profile page and select the text to enter all your equipment information, you might get some additional, machine-specific tips from those using the same equipment.

Nate

Re: New ASV user, frustrated and a bit confused.

Post by DavidT on Sun Feb 19, 2012 7:14 pm

I have tried putting the mask on and watching tv. As I sit there watching tv, it blasts me...I'm wide awake and haven't stopped breathing as I watched tv...I guess just not breathing often enough.??

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