New ASV user, frustrated and a bit confused.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
DavidT12

New ASV user, frustrated and a bit confused.

Post by DavidT12 » Sat Feb 18, 2012 9:12 pm

I received a Respironics AutoSV System One last Monday. I'm trying to adjust, but it has been difficult. I have a Resmed Mirage Quattro FF mask. I get the mask on comfortably and before I can get to sleep,the machine ramps up to breathe for me and the hard blast causes my mask to leak. I have to tighten it pretty good to keep it from leaking when the machine blasts me. Once I get it to where it won't leak, it hurts my nose and cheeks. I'm trying very hard to adjust, but it's frustrating when the machine hits me before I am asleep and the mask leaks. My breaths per minute is set to "Auto", but it keeps on blasting me every few minutes, making it difficult to fall asleep. Any suggestions on how to adjust or anything I should do differently?
Thanks,
David

DavidT12

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

Post by DavidT12 » Sun Feb 19, 2012 11:16 am

Well I made it 4 hours last night, but my nose and cheeks are still sore after being awake for 5 hours this morning. I wonder if this will get any better, because I still feel tire and I'm really glad I don't have to work today. I would really appreciate any insight from someone that has had these issues on an ASV machine...thanks.

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

Post by Bons » Sun Feb 19, 2012 3:19 pm

David,
Here's a couple of ideas until one of the better-informed ASV users comes on.
Go back to your DME and ask to try different masks, and try them at the highest pressure that you might need (they can use a straight cpap at the shop to try this out). You have a 30-day period after buying a mask during which you can exchange it for another model. Some masks work better than others when dealing with the rapid pressure changes that can happen with an ASV. One of the best masks for the ASV is one that covers the entire face such as the fitlife or total face (both made by phillips respironics). More surface area diffuses the pressure and avoids blowing out any one area, I guess. My flexifit 431 (fisher paykel) full face mask also handles the pressure faily well.
Instead of tightening the mask so much that it hurts, you can also try using a mask liner. Remzzz makes them, or you can try making your own by tracing around the mask on an old cotton t-shirt or flannel shirt (make about 1/2 inch larger all around) and then making a hole for your nose and mouth). It slows down the leak, and better yet, prevents that annoying farting noise that can wake the dead.
Also, find out what the rise rate and the ti settings are on your machine. They determine how quickly the machine switches from exhalation to inhalation pressures and can make things a little more comfortable for you.
I breathe too slowly to be compatible with my machine while I'm awake, so it annoys the heck out of me sometimes. But I find that when I am asleep, my body adjusts to the faster than I'd prefer breath rate and I can stay asleep. Took me months to fall asleep quickly with it, but determination to stick with it got me to that point finally.

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

Post by jamiswolf » Sun Feb 19, 2012 3:28 pm

Bons has given you some good advice.

Recognise that the problem you described is while you are awake. Auto setting can sometimes "jump-the-gun" and trigger a machine breath too early. Less of an issue while asleep.

You haven't listed your machine so I can't address any specifics. Adapt or Respironics?

Your machine in general is the most difficult to adjust to. The machine has to learn your breathing patterns.
J

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

Post by JohnBFisher » Sun Feb 19, 2012 6:29 pm

DavidT12 wrote:... I received a Respironics AutoSV System One last Monday. ...
First of all, welcome to the forum! I *highly* recommend that you register your username and register your equipment. That will tend to make it easier for us to tailor our response to your setup.

wiki/index.php/Registering_Equipment_in_User_Profile
DavidT12 wrote:... I'm trying to adjust, but it has been difficult. ...
I'll tackle the rest of your post without quoting all of it.

First, the ASV units are a PAIN IN THE BUTT when it comes to leaks. One trick I have learned that does help a lot is to use a mask liner. This is not just to protect your skin, but it helps reduce both the amount of leaking and the sound of the leaks. Normally the face mask tends to squeak and squawk as it leaks. Don't know about you, but I find it hard to sleep when it sounds as if someone is slowly letting out the air from a balloon. And let's not even mention how frustrating it is to awaken to the sound of "face farts". Ugh!

So, I recommend using mask liners. I know of three providers for them. Though I need to pay for them on my own (since my DME does not carry them), some DMEs do carry them. Ask. Here are the three providers of them, of which I am aware:

http://www.remzzzs.com/
http://quietusliners.com/
http://padacheek.com/

I have personally used both the liners form REMzzzs and Pad-A-Cheek.

Also, the Quattro FF mask can be a REAL pain in the forehead and nose. Pad-A-Cheek makes fleece padding to help reduce that pain.

Alternatively, I would recommend you ask your DME about the Quattro FX FF mask. It is a full face mask that does not have that annoying forehead pad. Not everyone can use it. But most of us find it easier on the face than the Quattro FF mask with the forehead pad.
DavidT12 wrote:... My breaths per minute is set to "Auto", but it keeps on blasting me every few minutes, making it difficult to fall asleep. ...
It is quite likely that as you fall asleep you stop breathing. This is actually pretty normal. The transition to and from sleep involves a shift in how the body regulates breathing. When you are asleep it uses a more primitive mechanism that relies on your acid level of your blood. You see, as CO2 builds up in your blood it triggers a breath. Since the transition is a time when this trigger is not fully engaged, it is fairly common for an apnea to occur at sleep onset. And yes, it is VERY frustrating.

Of course, if you had the problem I did - I would stop breathing for a minute or more at a time as I fell asleep - you would quickly learn to rely on that sudden increase in pressure. It means that even if you fail to breathe the machine will help sustain your respiration. It shifts into Ventilator mode and sustains your breathing. I find that increase very reassuring. But I've been using CPAP/BiPAP and now ASV for more than 20 years.

So, don't be discouraged that it is taking some time to adjust to it. You will be surprised how rapidly you will be able to adjust to ASV therapy.
DavidT12 wrote:... Any suggestions on how to adjust or anything I should do differently? ...
One thing that can help is to use it while watching TV or reading a book. It allows you to adjust to wearing the mask and breathing with it. This might make it easier for you when you wear it at night.

Hope those ideas help. Best wishes as you adjust to your new therapy.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
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"I get up. I walk. I fall down. Meanwhile, I keep dancing” from Rabbi Hillel
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tonycog
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Re: New ASV user, frustrated and a bit confused.

Post by tonycog » Sun Feb 19, 2012 6:33 pm

I can relate to the "blast" of air that you describe. I struggled with my ASV for quite some time before making peace with it. If you stick with this you will adapt to it and get to the point that you don't notice it much. It's just such a big change and it will take some time. You should search for your mask in this forum and feel free to ask more questions about your mask and the leak problems you are having. I am confident that you can find some solutions.

Tony

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

Post by DavidT » Sun Feb 19, 2012 6:55 pm

Thank you all for responding!!! I've shared my frustrations with my wife who is sympathetic, but it helps more to hear from people that truly understand what I'm going through and who can offer advice.

I like the idea of the total face mask...has anyone else had success with the total masks on ASV? (something that doesn't push on my nose and cheeks sounds great, but how is it with pushing on the forehead and does it dry your eyes out?)

Also, good advice to go into my DME office even though it's 35 miles away. I have to use Apria (no choice with my insurance) and they say I only get ONE mask exchange, so I need to get it right or I'll be in a major bind. 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.

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. 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.

I think I stated in my first post that my machine is a Respironics Auto SV Advanced System One....guess I need to figure out how to add that in my signature line.
Last edited by DavidT on Sun Feb 19, 2012 7:05 pm, edited 2 times in total.

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

Post by DavidT » Sun Feb 19, 2012 6:59 pm

I typed my post above when only two people had responded...then my wife called me to dinner...I just saw that others had responded. THANK YOU for taking the time to help me....I really need it and was ready to give up a few nights ago. I will reread everything and try what I can tonight. I appreciate your time and assistance!!!

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

Post by DavidT » 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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NateS
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Re: New ASV user, frustrated and a bit confused.

Post by NateS » 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

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

Post by Bons » 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

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

Post by DavidT » 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.

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

Post by Grand-PAP » 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
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!

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

Post by JohnBFisher » 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.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: User of xPAP therapy for over 20 yrs. Resmed & Respironics ASV units with EEP=9cm-14cm H2O; PSmin=4cm H2O; PSmax=15cm H2O; Max=25cm H2O
"I get up. I walk. I fall down. Meanwhile, I keep dancing” from Rabbi Hillel
"I wish to paint in such a manner as if I were photographing dreams." from Zdzisław Beksiński

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

Post by JohnBFisher » 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.

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Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: User of xPAP therapy for over 20 yrs. Resmed & Respironics ASV units with EEP=9cm-14cm H2O; PSmin=4cm H2O; PSmax=15cm H2O; Max=25cm H2O
"I get up. I walk. I fall down. Meanwhile, I keep dancing” from Rabbi Hillel
"I wish to paint in such a manner as if I were photographing dreams." from Zdzisław Beksiński