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Re: Test User's Overview of Apnicure's Winx system

Posted: Mon Jan 28, 2013 9:04 pm
by chunkyfrog
Hmm. I wonder what would happen if I reversed the polarity on a DC bait box aerator?
Maybe add a pacifier mouthpiece to non-collapsing oxygen tubing?
Probably not.!

Re: Test User's Overview of Apnicure's Winx system

Posted: Mon Jan 28, 2013 9:30 pm
by SleepingUgly
SleepingUgly wrote:BTW, is it even feasible to use the Winx with CPAP, or no way? (obviously this is only for true masochists...)
We could call it the "Suck and Blow" combo. Anyone want to try it?

Re: Test User's Overview of Apnicure's Winx system

Posted: Mon Jan 28, 2013 9:43 pm
by 4betterO2
cosmo wrote:Can air leak out of the mouth from this? Can you still use a CPAP with nasal pillow?
Ditto on this question, could it help people who cannot keep their mouth shut when using nasal pillows?

Re: Test User's Overview of Apnicure's Winx system

Posted: Mon Jan 28, 2013 9:45 pm
by 4betterO2
chunkyfrog wrote:Hmm. I wonder what would happen if I reversed the polarity on a DC bait box aerator?
Maybe add a pacifier mouthpiece to non-collapsing oxygen tubing?
Probably not.!

no, you have to pay and get the real thing.
Sorry I laughed, this is serious and I hope it does have promising results, possibly in more than one type of application.
Thanks Xney for sharing your experience with this new therapy.

Re: Test User's Overview of Apnicure's Winx system

Posted: Mon Jan 28, 2013 9:53 pm
by SleepingUgly
4betterO2 wrote:
cosmo wrote:Can air leak out of the mouth from this? Can you still use a CPAP with nasal pillow?
Ditto on this question, could it help people who cannot keep their mouth shut when using nasal pillows?
I need a cure for the jaw drop too, but I just don't think this is going to be it. Even if it keeps your mouth shut, can you imagine how it would feel to have air blowing up your nose and your palate/tongue and saliva suctioned simultaneously?!

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Jan 29, 2013 2:25 pm
by Xney
SleepingUgly wrote:How is it going with the Winx?

BTW, is it even feasible to use the Winx with CPAP, or no way? (obviously this is only for true masochists...)
No real updates at this point. The system's been great in terms of saliva, no problems there.

It's still loud-ish at times, and doesn't seem to turn off like the trial system did once a vacuum is achieved. Sleep isn't feeling too different from the CPAP, maybe because the constant pressure changes vacuum are keeping me up? It's hard to tell, going to try a Zeo to see if I can map out sleep stages, or something like sleep stages. It's possible the device is working great, and remaining sleep problem(s) are something else.

Also following up with Apnicure on the remaining things. They've been very responsive so far, but with a new system the options are kind of limited.

I'm thinking of asking the Dr's office to borrow the test machine for a few days, see if the sleep feels different on that one.

As far as it goes for others using it, I think the only concern I would have right now is the noise due to it being on most of the time. Dunno if that's intended, or something that's not supposed to happen. Could also be something due to me, such as it losing vacuum somewhat and having to adjust.

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Jan 29, 2013 2:38 pm
by Xney
4betterO2 wrote:
cosmo wrote:Can air leak out of the mouth from this? Can you still use a CPAP with nasal pillow?
Ditto on this question, could it help people who cannot keep their mouth shut when using nasal pillows?
I don't think it would be a good idea to try and combine them. You have positive pressure from the xPAP behind the soft palette/tongue area, and negative pressure in front of it. It doesn't seem like a stable situation to me. The positive pressure requires the tongue and soft palette to seal or it leaks out of your mouth, and there would be more incentive for that to happen with a negative pressure in the mouth area.

That being said, in terms of the equipment there's no reason you couldn't combine them. The winx is just in the mouth area with a tube sticking out, and the cpap is only in the nose area (with a nasal type mask)

Anything the winx would do, you can solve with more positive pressure, in terms of needing "more room" to clear obstructives. The reason to use a combination therapy would be to lower pressure requirements, or that's the only thing I could think of. Just seems very.. iffy... to me

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Jan 29, 2013 2:54 pm
by SleepingUgly
Xney, do you tend to be a light sleeper? If not, the fact that it's keeping you awake means it's almost guaranteed to keep me awake... Could the sound be blocked with white noise machines?

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Jan 29, 2013 3:31 pm
by Xney
I'm not a light sleeper, no. Not a super deep sleeper, either. (Or at least, I haven't been either)

The noise level of the trial machine would start loud-ish as it creates the negative pressure, but then it settled down and was pretty quiet. I think that would be acceptable to almost everybody. The new machine doesn't behave the same way, for some reason or another.

Either way, you could potentially put the winx somewhere to dampen the noise if it was close enough. It doesn't feed you air, so it doesn't need to have an air supply like a CPAP does.

I forgot to answer the white noise question, but I'm not sure. The variable-ness is more annoying than the noise level, if I had to choose. It doesn't stop me from sleeping, but it could stop some people, I think.

Re: Test User's Overview of Apnicure's Winx system

Posted: Wed Jan 30, 2013 1:12 pm
by no_more_headaches
Since it pulls saliva, I am wondering if you eventually get dehydrated. Dehydration is a major reason for opening ones mouth.

Re: Test User's Overview of Apnicure's Winx system

Posted: Thu Jan 31, 2013 1:33 am
by Xney
With the new machine, it definitely dries out your mouth & tongue.

But your mouth can be "open", the front of the appliance helps keep the seal. The tongue is really the critical part. As long as it stays sealed to the top, presumably the benefits are working for you because it's pulled the tongue up. My experience is it stayed sealed unless you try to move the tongue deliberately. I would really like to see the data from it to tell, though.

Re: Test User's Overview of Apnicure's Winx system

Posted: Thu Jan 31, 2013 3:10 am
by RogerSC
Xney wrote:With the new machine, it definitely dries out your mouth & tongue.

But your mouth can be "open", the front of the appliance helps keep the seal. The tongue is really the critical part. As long as it stays sealed to the top, presumably the benefits are working for you because it's pulled the tongue up. My experience is it stayed sealed unless you try to move the tongue deliberately. I would really like to see the data from it to tell, though.
Just wondering how you're tracking your sleep data? I was looking at their web site today, and noticed that their success criteria was at least a 50% reduction in AHI, which I wouldn't call successful myself unless it got subjects down to close to the "normal" range. That would be my criteria for success, getting study subjects down into the "normal" AHI range. But as long as you know what they're calling successful, you can evaluate their study results. Actually, they have some very quantitative results posted on their web site from studies.

Have you had a sleep study with it? Or did they tell you that you were a good subject? The stuff I saw their web site implies that it's possible to identify people that will respond to it.

Kind of curious about this one, and wondering about measuring effectiveness. Also, how do you feel during the day compare to being on xpap (whichever pap you're on *smile*)? I gather that normal cpap wasn't doing it for you, is this better?

Re: Test User's Overview of Apnicure's Winx system

Posted: Thu Jan 31, 2013 5:33 am
by Xney
I had a sleep study with it. AHI on it was 0, RDI was 10 but most of that was when I was still falling asleep. So the numbers look good in the study.

CPAP/VPAP/ASV had good looking numbers but only got me to 50% better at best. I felt the sleep study winx and my trial winx were maybe doing better than that, but my actual winx, doesn't feel any better than the 50% level. Maybe a bit worse. I think the pump not quieting down could be disturbing my sleep somewhat. I have a Zeo I'm going to try and hook up this weekend to help track stages.

Unlike xPAP which measures the pressure changes with breathing, Winx has no idea about your breathing. I could see getting seal/leak data from it, but I doubt it will have breathing data. So I think a sleep study with it is very important before getting one, unless you just like to experiment.

My AHI on the ASV for 4+ months was 0, essentially. but it wasn't enough for whatever reason. Also possible there's something else going on, but none of the usual suspects so far.

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Feb 05, 2013 7:19 pm
by Xney
Update: talking to apnicure, they want to try a different machine. (They call it a console) So I should have a new one Thursday to try. I think mine is behaving a bit strangely.

Apnicure has been very helpful, so I have to give them props even though it's sort of trying to figure out new technology bugs.

Re: Test User's Overview of Apnicure's Winx system

Posted: Tue Feb 05, 2013 8:32 pm
by SleepingUgly
How is it that it's behaving strangely, making them want to replace it?