"Winx" machine sleep study

[Xney]

Just finished a sleep study with a "Winx" machine, which I think just got FDA approval.

To clarify why, I've been an xPAP user (CPAP, VPAP, ASV) for over 3 years. For whatever reason, despite good numbers after an arduous journey to using it successfully, I just don't feel awake. It's like xPAP only helps about 50%. You can search for my old threads if you want to learn more.

Anyways, this is quite honestly just something my doctor and I are trying. I think CPAP would still be the first line of choice for anybody for treatment, and it'll always be better because you have data that you can track. But if for whatever reason it's not working, another alternative is good, maybe.

I've also tried a dental appliance, which only dropped my AHI from the 40s to the 20s, so I figured it wouldn't be too much of an adjustment trying to sleep with this thing. My initial sleep study with CPAP was not fun!

So, if you've never heard of this machine, it works by negative pressure rather than positive pressure. It sucks up your tongue to the top of your mouth, which creates space behind your throat. CPAP "pushes" your throat open with pressure, the Winx "pulls" your throat open. This is another reason CPAP is probably better for most people, because you can almost always find a positive pressure amount which opens things up, whereas I think the negative pressure can work for some people, but not others. I'm not a doctor or a scientist, this is just my impression as a long-time xPAP user.

This is the thing you wear in your mouth:



It creates a vacuum when you 'seal' your throat. When you swallow, the back of your throat closes, and then the vacuum will keep it closed. (It may not close or stay closed for everybody, I think) Then the vacuum will slowly pull your tongue up and keep it there - you can feel this happening. It's a pretty weird sensation at first, and it took me a little time to get used to it. But after a while it didn't feel like something that would keep me up.

I had to take it out a few times overnight to "reset" it - it felt like I had to give my tongue a break. I think it would be something that I'd need to do less and less over time, maybe not at all - just guessing here.

In terms of sleep, I probably got about 5, maybe 6 hours on my sleep study. That's pretty good for me - I don't tend to sleep well in sleep studies. The sleep felt okay, considering everything. I'll have to see what the sleep study says in terms of breathing issues, desats, and arousals. My impression right now is that I'd probably want to try it for a few weeks and compare it to CPAP. At least, I can't think of anything more to try with xPAP. I've tried everything I can think of with it.

Anyways, that's my experience so far. When I get my sleep study, I'll post the info from it.

[chunkyfrog]

I really hope it works for you.
It kind of makes sense if the obstruction is in the "right" place.
This is the first time I've seen a picture of the "part they dare not show".

[Xney]

Thanks - I hope so too! It's weird using it, but no weirder than CPAP.

I have no clue on what the numbers will show, or if it matters. I have straight AHI=0s pretty much on my ASV for 3 months.

[Xney]

by the way, can I just say how much I hate cleaning off all the gunk from sleep studies?! Argh.

If you want to be a rich man or woman, invent a better way to do a sleep study - get something where you don't have to adhesive everything to the patient.

[johnthomasmacdonald]

xney- Have you considered combining the dental appliance with either the cpap, asv or winx? I've found that while the dental appliance doesn't solve my sleep apnea on its own it allows me to drop the pressure so far that the cpap experinece actually becomes rather pleasant - pressure of 6 verses 13-17 depending on the night. I still have an ahi of around 1-3 ( untreated i'm 21) and it is all central - any lower ( even by .2 ) and the obstructions return with an ahi increase to around 7-10

[sylvie]

This is exactly what I've been trying to tell folks! A combination of dental appliance (advancing tongue away from the back of the throat) and CPAP will get you your desired result. Why? Because even though someone's AHI is low--It's Not Low Enough!--apneas, even few of them, do damage and inflict tiredness. What gives me the right to say this? Because from being a longtime reader of sleep apnea forums, people's complaints are the same over and over: "My AHI is low and I'm still tired." When you keep jacking up the pressure to overcome the tongue block--the high pressure then causes problems (e.g., glaucoma, wakeups, aerophagia). At my first visit to the sleep apnea dentist, his exact words were: "People have obstructive sleep apnea because of the tongue." I know there are a combination of other factors, but he is largely correct in describing the majority of people suffering from OSA. I know this doesn't cover everyone's situation--but I can guarantee it covers a whole heck of a lot.

Oh, and while I'm on topic, oral appliances, FOR THE MOST PART, will not get your AHI low enough! Dentists, of course, don't want to tell you this, but their selling point should be that a combination of appliance and CPAP will significantly make it possible for one to get excellent therapy--more excellent than CPAP alone!

The WINX test company that Xney is talking about is cognizant of the appliance/cpap combo need, thus proving my point. It only makes sense: you need a "mechanical" / "mechanical" approach, for lack of a better word.

Last point: Yes! I still have to battle fatigue a little.....but it is miniscule compared to pre-cpap (I'm sure some don't have any more fatigue). Why still the small amount of fatigue? I believe that long-term untreated sleep apnea causes a degree of irreversible damage, which will result in having to overcome a certain amount of tiredness. However, I don't believe it is the kind of tiredness Xney is describing. He is right to pursue the WINX test option.

This posting is only meant to help, not to argue with anyone.

[Xney]

xney- Have you considered combining the dental appliance with either the cpap, asv or winx? I've found that while the dental appliance doesn't solve my sleep apnea on its own it allows me to drop the pressure so far that the cpap experinece actually becomes rather pleasant - pressure of 6 verses 13-17 depending on the night. I still have an ahi of around 1-3 ( untreated i'm 21) and it is all central - any lower ( even by .2 ) and the obstructions return with an ahi increase to around 7-10

Yes I've used the dental appliance in combination. It didn't change anything except make leaks worse (tape doesn't really work with an appliance)

My AHI on the ASV is 0 and has been for 3 months. Or sometimes it's .1 or .2.

[Xney]

Oh, and while I'm on topic, oral appliances, FOR THE MOST PART, will not get your AHI low enough! Dentists, of course, don't want to tell you this, but their selling point should be that a combination of appliance and CPAP will significantly make it possible for one to get excellent therapy--more excellent than CPAP alone!

I think an appliance could help some people in combination with CPAP. If you need a lot of pressure to open the throat, I imagine for some people it would be a lot less pressure in combination with something pulling your jaw forward. I'm not sure how you would tell who it would work well for ahead of time, and dental appliances are pretty expensive. Insurance doesn't like to pay for them.

In my particular case, my AHI is already 0 on the ASV so it can't make it any better.

The WINX test company that Xney is talking about is cognizant of the appliance/cpap combo need, thus proving my point. It only makes sense: you need a "mechanical" / "mechanical" approach, for lack of a better word.

There's a lot of similarity in the approach of an oral appliance and this winx machine - they achieve the same end in different ways. But I think the winx works even better because it pulls the soft tissue forward with a vacuum. On the downside, the soft tissue being moved around takes power and a vacuum which is pretty different.

I'm happy there's new approaches and options for sleep apnea sufferers, at least.

Last point: Yes! I still have to battle fatigue a little.....but it is miniscule compared to pre-cpap (I'm sure some don't have any more fatigue). Why still the small amount of fatigue? I believe that long-term untreated sleep apnea causes a degree of irreversible damage, which will result in having to overcome a certain amount of tiredness. However, I don't believe it is the kind of tiredness Xney is describing. He is right to pursue the WINX test option.

This posting is only meant to help, not to argue with anyone.

Even the 50% improvement for me has made a big difference. It's the worst 50%, and I felt absolutely terrible before xPAP. now I simply feel very very tired. I just can't think of anything more to try with xPAP - I've tried everything under the sun, so I'm taking shots in the dark now. But after trying winx, I feel like it really could work for some, or maybe, many. There's too many advantages to CPAP for it not to be the first option, though.

[49er]

As you all know, I had complained previously about having to wear the neck collar due to feeling it was uncomfortable. But I have come to accept the fact that without it, I am simply not going to get a good pressure with an AHI below 5 unless I want to go up to 20 which simply was not going to work for various reasons.

I have found that for now, going with a straight cpap pressure of 5 is getting me a consistent AHI below 5 and has resulted in longer stints on the machine. Unfortunately, my sleep is still pretty bad but I now feel the main problem is due to not being able to stay awake after dinner which I have to work on resolving.

Anyway, I just wanted to share my experience in case people wanted a cheaper option to dental devices in lowering their pressure.

Regarding the Winx Machine, I was very curious about it but it looks like you have to be able to breath through your nose which would rule it out for me due to being a mouth breather. I hope it works for you Xney.

49er

[patrissimo]

This is exactly what I've been trying to tell folks! A combination of dental appliance (advancing tongue away from the back of the throat) and CPAP will get you your desired result. Why? Because even though someone's AHI is low--It's Not Low Enough!--apneas, even few of them, do damage and inflict tiredness. What gives me the right to say this? Because from being a longtime reader of sleep apnea forums, people's complaints are the same over and over: "My AHI is low and I'm still tired." When you keep jacking up the pressure to overcome the tongue block--the high pressure then causes problems (e.g., glaucoma, wakeups, aerophagia). At my first visit to the sleep apnea dentist, his exact words were: "People have obstructive sleep apnea because of the tongue." I know there are a combination of other factors, but he is largely correct in describing the majority of people suffering from OSA. I know this doesn't cover everyone's situation--but I can guarantee it covers a whole heck of a lot.

I'm interested in trying this. I used an oral appliance before my MMA surgery, and it helped significantly (but not enough), and it hurt my jaw and was giving me an overbite. I'm now trying CPAP again. I don't have an oral appliance anymore b/c my jaw changed from the surgery so I threw it out.

I looked at a link someone posted to ihatecpap, and their oral appliance page listed like 30 different ones, it was kind of overwhelming! Does it depend on your mouth/airway architecture, or are they all pretty similar, or do they have different feels for different people, or what? Are there some that are most recommended for people on CPAP? Are boil-and-bite's worth trying first? I worry that any particular dentist I go to will have a few that he has a commercial affiliation with, as opposed to really figuring out what's best for me.

What about oral appliances that help sleep while also reshaping your jaw over time - there was a thread a couple years ago about small jaw and apnea (viewtopic/t53983/Discussion-of-Small-Ja ... Apnea.html). Has anyone tried any of these?

Should this be a new thread?

[Xney]

Regarding the Winx Machine, I was very curious about it but it looks like you have to be able to breath through your nose which would rule it out for me due to being a mouth breather. I hope it works for you Xney.

49er

It essentially "occupies" your mouth, so you can't breathe through your mouth at all. Unfortunately, if you're a mouth breather.

[Xney]

I'm interested in trying this. I used an oral appliance before my MMA surgery, and it helped significantly (but not enough), and it hurt my jaw and was giving me an overbite. I'm now trying CPAP again. I don't have an oral appliance anymore b/c my jaw changed from the surgery so I threw it out.

I looked at a link someone posted to ihatecpap, and their oral appliance page listed like 30 different ones, it was kind of overwhelming! Does it depend on your mouth/airway architecture, or are they all pretty similar, or do they have different feels for different people, or what? Are there some that are most recommended for people on CPAP? Are boil-and-bite's worth trying first? I worry that any particular dentist I go to will have a few that he has a commercial affiliation with, as opposed to really figuring out what's best for me.

What about oral appliances that help sleep while also reshaping your jaw over time - there was a thread a couple years ago about small jaw and apnea (viewtopic/t53983/Discussion-of-Small-Ja ... Apnea.html). Has anyone tried any of these?

Should this be a new thread?

Probably should be a new thread - I'm not sure if this board has any policy on oral appliances.

Having gone through getting one myself, I firmly believe you need a doctor/dentist who specializes in them. They can do bad things to your jaw/teeth if they're not properly fitted and set up. I imagine those specialists have ones they like or work with, having experience with fitting them on many bone structures.

[Xney]

Just talked to my doctor over the phone. I don't have my sleep study in hand yet, but apparently the AHI was 0 for the night, RDI was around 5. (Not sure what the RDI was from, could be anything) So that's pretty good, I'm gonna give this thing a shot. Lost the vacuum for a little bit in the study, sort of like having leaks.



Downside is, you don't really have data with this machine, so it will be kind of based on how I feel, but I've been pretty accurate with how my xPAP was working in the past before looking at the numbers.

[49er]

Regarding the Winx Machine, I was very curious about it but it looks like you have to be able to breath through your nose which would rule it out for me due to being a mouth breather. I hope it works for you Xney.

49er

It essentially "occupies" your mouth, so you can't breathe through your mouth at all. Unfortunately, if you're a mouth breather.

Well Xney, I could use it to prevent myself from eating foods that I shouldn't be consuming All jokes aside, thank you for confirming my suspicions.

I noticed in your other post that your sleep study turned out great with this device. I am so happy for you and I hope your success continues.

49er

[Xney]

Well Xney, I could use it to prevent myself from eating foods that I shouldn't be consuming All jokes aside, thank you for confirming my suspicions.

I noticed in your other post that your sleep study turned out great with this device. I am so happy for you and I hope your success continues.

49er

Thanks! Given my AHI on my ASV is 0 every night, I'm not sure having the same on the Winx means a ton, but at least my sleep didn't feel too bad on it - even with all the usual disturbances at a sleep study. I'm willing to try whatever at this point.

It looks like I can't pick up my trial machine until Jan 2. So there won't be anything to report until then. When I get it, I'll post what it's like to use on a regular basis.