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Wow I didn't realize this thread existed until tonight. Looks like there is a lot of useful information on here that I will have to go back and read through.
Sounds like the Comp Sleep Apnea and the ASV machine is a lot more complicated than your garden variety OSA and CPAP machine. I have been experimenting with a few things trying to change AHI numbers which I have by experimenting with side sleeping last night. Posted the results in another thread, however in a nut shell. Sleeping on my side for part of the night DID lower my AHI level down to 8. instead of the usual 10. - 16. level. However even with the lower AHI number I felt BAD all day today, just really really tired just like I did before using the ASV machine. Not to mention my back hurt most of the day as well.

So as you guys point out apparently it isn't just the AHI levels that determine how you feel everyday. It's strange trying to make logical sense of all the data everyday, since there are so many unknown x factors involved. However I am going to check out all the info I can on all this, and keep plugging away, thanks for bumping this thread up again.

Kody wrote:Wow I didn't realize this thread existed until tonight. Looks like there is a lot of useful information on here that I will have to go back and read through.
Sounds like the Comp Sleep Apnea and the ASV machine is a lot more complicated than your garden variety OSA and CPAP machine. I have been experimenting with a few things trying to change AHI numbers which I have by experimenting with side sleeping last night. Posted the results in another thread, however in a nut shell. Sleeping on my side for part of the night DID lower my AHI level down to 8. instead of the usual 10. - 16. level. However even with the lower AHI number I felt BAD all day today, just really really tired just like I did before using the ASV machine. Not to mention my back hurt most of the day as well.

So as you guys point out apparently it isn't just the AHI levels that determine how you feel everyday. It's strange trying to make logical sense of all the data everyday, since there are so many unknown x factors involved. However I am going to check out all the info I can on all this, and keep plugging away, thanks for bumping this thread up again.

And feel free to add anything you come up wtih. I'm beginning to think that this therapy is more art than science.

I posted this as a newbie intro and was advised that this is where the ASV folks are hanging! And that maybe there is another chronic pain patient on narcotic pain managment here? Anyway....for now I will just leave this as originally written and I am going to get to reading on this thread!


Hello!
I have been reading on this forum for a couple of weeks and still feel woefully ignorant. Everyone here seems so well informed about both the varied sleep apnea conditions and the wide range of equipment used to treat them.
Briefly, about me..I am a soon to be 55 year old female who was first dx with severe obstructive sleep apnea that for reasons too numerous to mention right now went untreated. At that time I had one study done. Fast forward to July of this year. I have had 2 studies done so far. The first one showed the same obstructive apnea although I think it was a little better than it was in 2009. I attribute that to the fact that the amount of narcotics needed to control my chronic pain were decreased by at least 50%. I have basically traded breathing for pain.
The next study was to titrate for a C-Pap and this study showed that when the obstructive apneas were addressed, central apneas emerged. Or something like that. This last study my type of apnea was labeled "complex." I have all 3 of my previous studies and it would be possible for me to C&P them, either in whole or in part if/when it would be helpful.
Anyway....has to be a question here somewhere, right? Going forward...my next study to try an ASV is scheduled for Sept. 28th. What do I need to know going into this? Are there different types of units? Somewhere I read that one type of ASV is much more comfortable than the other. What are my questions for my sleep doctor? ANY input will be more appreciated than I can begin to express. I am very excited to start this treatment and THRILLED to have found this forum.
One other piece of possibly useful info is that I sleep with O2 at 2L per nasal canula due to desaturations below 80%.

MsLis

Who does not have all those spiffy numbers/names/initials for her siggy yet! Top

Guest wrote: I posted this as a newbie intro and was advised that this is where the ASV folks are hanging! And that maybe there is another chronic pain patient on narcotic pain managment here? Anyway....for now I will just leave this as originally written and I am going to get to reading on this thread!

Chronic pain patient on narcotic pain management: that must be me!

I've be prescribed just about all of them and the most effective has been methadone, however, that has caused or aggravated my breathing issues. Another member sent me some info about methadone/narcotics and apnea, if you want to see it, let me know.

As for choices in machines, I use the Respironic BiPap ASV Advanced. There is another out there as well. If you read some of the posts by JohnBFisher, he's got some pretty good insight on both machines. Welcome to the forum!

Welcome MsLis, yes I guess this is where the ASV people hang out. I just found this a few days ago as I'm very new here also. These guys have been very helpful to me also, and have a lot of good info in this particular thread that I have found reading through. I also have CSA, complex sleep apnea. Found this out after they put me on CPAP for obstructive, and raised the pressure until I started having Centrals. I really didn't like CPAP anyway, as I found it vary hard to exhale against, and felt like I was suffocating half the time.

Like ameriken, I have the same machine he does the Respironic BiPap ASV Advanced. First thing I noticed was how EASY it was to breath with compared to the CPAP machine, never felt uncomfortable with it at all. Good luck at your next sleep study, and hope some of your questions get answered while reading.

Guest wrote:... maybe there is another chronic pain patient on narcotic pain management here? ...

Well, you won't be alone. We have several members in your situation.

Guest wrote:... I have been reading on this forum for a couple of weeks and still feel woefully ignorant. Everyone here seems so well informed about both the varied sleep apnea conditions and the wide range of equipment used to treat them. ...

Well, think of it as "on the job" based education. After 20 years of dealing with sleep issues you do tend to learn a little bit.

Guest wrote:... I attribute that to the fact that the amount of narcotics needed to control my chronic pain were decreased by at least 50%. I have basically traded breathing for pain. ...

Ouch. Out of the frying pan and into the fire. Well, hopefully you are on the path to put out that fire as well.

Guest wrote:... Going forward...my next study to try an ASV is scheduled for Sept. 28th. What do I need to know going into this? ...

First of all, depending on when your central apneas occur, you might find falling asleep with an ASV an interesting proposition. If, like me, you central apneas start as soon as you start to fall asleep, then you may be started awake as the machine suddenly ramps up the pressure. Remember, it uses the pressure to help sustain your breathing. It acts as a ventilator. And that can be a lot of pressure to get the job done.

BUT, you will quickly learn that you can just "let go" and let the machine do the work for you. I don't know about you, but that was VERY freeing for me. I still struggle with fighting going asleep on my "bad" nights ... like I've had this week ... but if I put my nose to it and work through that first few minutes, I often sleep soundly the rest of the night. Not that the apneas go away. I'm just asleep, so am unaware of it.

Guest wrote:... Are there different types of units? Somewhere I read that one type of ASV is much more comfortable than the other. ...

Phillips Respironics makes an ASV unit:

https://www.cpap.com/productpage/PR-Sys ... anced.html

As well, Resmed makes an ASV unit:

http://www.resmed.com/us/products/s9_vp ... adapt.html

Resmed actually invented the technology. They found, through a series of clinical trials that they are more effective than other previous therapies for treating various forms of central sleep apnea.

Guest wrote:... What are my questions for my sleep doctor? ... One other piece of possibly useful info is that I sleep with O2 at 2L per nasal canula due to desaturations below 80%. ...

Well, you might want to ask if you might be able to reduce the O2 levels ... How will that be determined? ... Should you use a full face mask? (I tend to recommend it, because the pressure at full blast will tend to leak out your mouth if you only have a nasal mask).

Guest wrote:... Who does not have all those spiffy numbers/names/initials for her siggy yet! ...

Sounds as if it is just a matter of time ...

Guest wrote:... Somewhere I read that one type of ASV is much more comfortable than the other. ...

Doh! I forgot to answer this one.

I tend to prefer the Resmed unit. However, it has fewer "dials" (aka settings) to adjust. And getting those settings right might be more important for your therapy. So the choice between the Respironics and Resmed unit might be dictated by the therapy. It might also depend on what the DME can/will provide.

In general, I find it easier to breathe with the Resmed unit. But the difference is slight. I do have both a Resmed and Respironics unit, so I can and do compare the two of them. But in general, go with the unit that will meet your needs.

Hope that helps!

What is happening here? There are about 3 periods like this throughout the night.

Can I hang out too?
My latest problem is that I am noticing large leaks nightly that I was not having before.
I think I start out on my back, but end up on my side. I am using the pad a cheek as well.

Would that mean the mask is wearing out or something?

Wouldn't mind trying the Hybrid mask, anyone know where I can get it for cash?

pharm30 wrote:Can I hang out too?
My latest problem is that I am noticing large leaks nightly that I was not having before.
I think I start out on my back, but end up on my side. I am using the pad a cheek as well.

Would that mean the mask is wearing out or something?

Wouldn't mind trying the Hybrid mask, anyone know where I can get it for cash?

Might as well join the fray!

I suspect that your mask is wearing out. I find that after just three months my mask has had it. It is likely that the constant pressure changes wears out the cushion on the mask.

Something that seems to help is a mask liner.

CPAP.com might have a decent price on masks. Too bad the auction site is no longer up and running.

Hope that helps.

pharm30, as John suggested, you can go with a mask liner. Try Pad-a-Cheek. They've got a website by that name (http://www.padacheek com). A lot of folks here have had good luck with those liners sealing up leaks.

How old is your mask?

ameriken wrote:pharm30, as John suggested, you can go with a mask liner. Try Pad-a-Cheek. They've got a website by that name (http://www.padacheek com). A lot of folks here have had good luck with those liners sealing up leaks.

How old is your mask?

I have been using the pad a cheek for several weeks now, I think the mask is a little over a month old.
My leak data was pretty good for the last several weeks, up until a couple days ago.

pharm30 wrote:

ameriken wrote:pharm30, as John suggested, you can go with a mask liner. Try Pad-a-Cheek. They've got a website by that name (http://www.padacheek com). A lot of folks here have had good luck with those liners sealing up leaks.

How old is your mask?

I have been using the pad a cheek for several weeks now, I think the mask is a little over a month old.
My leak data was pretty good for the last several weeks, up until a couple days ago.

How well did you do without the liner? I know a lot of folks have had good luck with the liner so I bought it and it worked great for about a week or two. Then I started having leaks with it, even after washing it. I've stopped using the mask liner and went back to just the straight mask, keeping the pillows clean every day. I still have occasional leak problems, but for the most part, it works ok.

Well, I have registered. Now all I need is to find an avatar.

I am the poster who had all the newbie questions as I am coming up on my 4th sleep study to test out an ASV unit.

I am confused because I wrote out a rather long response that included thanking those that responded to me, espcially John and ameriken but now I cannot find it. Am i just missing it somehow? Before I write more I want to be sure that this post isn't floating around somewhere it should not be because I also posted about some respiratory arrests that I have had. Don't want to duplicate!

MsLis

MsLs,
The post is still there; scroll up and you should see it.

One thing about titrating the ASV. When you first start out on it while awake, it may seem like it is trying to force you to breathe at it's pace (decreasing pressure while you are still inhaling, and increasing while you are still exhaling). The machine will adapt to your own breath rate as long as you are breathing at a rate within its parameters. Just breathe over it and it will pick up your rhythm and adjust to you. Once it's at a comfortable rate, then you can let it guide you. It can seem pretty freaky at first. I breathe much slower when awake than when asleep, so I've had to learn to "dance" with my ASV and determine who should lead when.

Before you go, ask how experienced the techs are with ASVs. There was a big goof at mine when the machine was changing pressures way to quickly for me and making my hyperventilate. The tech responded by turning the rise rate setting down, which for some dumb reasoning by the good people at Respironics makes the pressure rise faster (normal thinking to an inexperienced tech made her think that down should mean slower and up should mean faster, but the opposite is true for that machine).