Spinning my wheels :-(

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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MaxINTJ
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Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 6:00 am

I have now been giving xPAP a chance for over 2 months now and I seem to be going nowhere. What little patience I had is gone.

I tried APAP for 6 or 7 weeks and kept changing the settings (going up) and getting no improvement in my sleep. I was then lucky enough to get to test an ASV unit and I have had a few days of some improvement, but at the cost of >18% leaks, extremely dry mouth, and a lot of disturbing my wife's sleep from all the noise.

I know the mask is not the cause of most of the leaks, it's my mouth blowing open and a chin strap doesn't help.

With lower pressures I was getting low leak numbers but no improvement in sleep quality. Now, with the ASV,
I have had some relief but huge leak numbers (due to pressures going up to 25 a lot).

I'm not sure what to do. Stop trying? Keep trying and get booted into another room because the leaks cause too much noise? Go back to the APAP which doesn't cause huge leaks but gives no therapy?

I have a followup ENT appointment today and will be going in early to stop at the Sleep Disorders Clinic to rattle some cages, but I expect it will be a pointless endeavor.

Any advice?
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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ChicagoGranny
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Re: Spinning my wheels :-(

Post by ChicagoGranny » Thu Oct 05, 2017 6:26 am

MaxINTJ wrote:Any advice?
https://www.inspiresleep.com/

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knothead
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Re: Spinning my wheels :-(

Post by knothead » Thu Oct 05, 2017 6:51 am

Sounds to me that you need a full face mask. If your mouth "blows" open you're not getting any benefits. Solution....FFM. JMO and good luck.

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 6:55 am

ChicagoGranny wrote:
MaxINTJ wrote:Any advice?
https://www.inspiresleep.com/
I had looked into that before I started with xPAP and decided it wasn't an option because I am not comfortable with devices implanted in my body. The only such device I would accept would be a pacemaker if I was at risk of imminent death. Also, doesn't the control need to be on the chest for it to work? With all my weird position changes and stomach sleeping, I'm not sure it could be kept in place without duct tape, and that would be a very painful experience.

As it turns out, I don't have sleep apnea. I don't know for sure what I have - it's quite possible it is UARS, and as far as I can tell, that device is only for apneas.

I appreciate your suggestion though, I consider it to be out of the box thinking
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 6:57 am

knothead wrote:Sounds to me that you need a full face mask. If your mouth "blows" open you're not getting any benefits. Solution....FFM. JMO and good luck.
That has been suggested here and by the sleep clinic. I had asked them about fitting one, but they seem to have ignored my questions - hence my cage rattling today.

I have a lot of reservations about one because I don't think they work for stomach sleepers bit I wanted to at least look into it/
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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ChicagoGranny
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Re: Spinning my wheels :-(

Post by ChicagoGranny » Thu Oct 05, 2017 7:18 am

MaxINTJ wrote:Also, doesn't the control need to be on the chest for it to work?
The device is implanted. The control is used to turn the device on at bedtime, and then you put it on the nightstand to be used the next morning to turn the device off.
MaxINTJ wrote:I know the mask is not the cause of most of the leaks, it's my mouth blowing open and a chin strap doesn't help.
Have you tried taping your mouth shut? There are some members here who tape. I did it for the first six months of my CPAP therapy - so it can work. (But, I am very happy now to be using Innomed Hybrid mask w/o tape.)

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 9:26 am

ChicagoGranny wrote:
MaxINTJ wrote:Also, doesn't the control need to be on the chest for it to work?
The device is implanted. The control is used to turn the device on at bedtime, and then you put it on the nightstand to be used the next morning to turn the device off.
MaxINTJ wrote:I know the mask is not the cause of most of the leaks, it's my mouth blowing open and a chin strap doesn't help.
Have you tried taping your mouth shut? There are some members here who tape. I did it for the first six months of my CPAP therapy - so it can work. (But, I am very happy now to be using Innomed Hybrid mask w/o tape.)
I know people on this forum have successfully used tape, but how many males have? Most females don't have facial hair to worry about. I don't have a beard or stache, but my hair grows overnight - enough that it would either interfere with adhesion or make it very painful to remove. The there's the issue of large red tape marks that would last hours and hours. Again, not so much of an issue for females as makeup can probably mostly cover them, Or there are a lot of retired folks here that don't have to show up for work looking like they were just in a fight.

As for Inspire, since I don't have OSA, I would not be a candidate. Also, the ENT did not see any problem with my tongue (granted, it should be looked at when I'm asleep, but still). And with no VA center less than 6 hours away authorized to do it, my odds of even getting officially evaluated are slim. But, it is another cage I will rattle today
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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Marillion
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Re: Spinning my wheels :-(

Post by Marillion » Thu Oct 05, 2017 9:29 am

I use paper medical tape. No marks and not painful to remove, even over hair growth.

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ChicagoGranny
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Re: Spinning my wheels :-(

Post by ChicagoGranny » Thu Oct 05, 2017 9:36 am

MaxINTJ wrote:I know people on this forum have successfully used tape, but how many males have? Most females don't have facial hair to worry about. I don't have a beard or stache, but my hair grows overnight - enough that it would either interfere with adhesion or make it very painful to remove. The there's the issue of large red tape marks that would last hours and hours. Again, not so much of an issue for females as makeup can probably mostly cover them, Or there are a lot of retired folks here that don't have to show up for work looking like they were just in a fight.
You are consistently and doggedly determined to fail.

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TASmart
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Re: Spinning my wheels :-(

Post by TASmart » Thu Oct 05, 2017 9:43 am

I have used paper medical tape with mixed results. Mostly it helps keep my mouth shut, but it can fail. I believe it's not so much the pressure blowing your mouth open, as your jaw wanting to open. If you keep your tongue pressed to the back of your teeth and a slight suction there is no pressure in your mouth. It's when everything relaxes and sags the pressure is released to your mouth area. Practice keeping your tongue where it belongs.
All posts reflect my own opinion based on my experience and reading.
Your mileage may vary
Past performance is no guarantee of future results
Consult with your own physician as people very

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 9:58 am

ChicagoGranny wrote:
MaxINTJ wrote:I know people on this forum have successfully used tape, but how many males have? Most females don't have facial hair to worry about. I don't have a beard or stache, but my hair grows overnight - enough that it would either interfere with adhesion or make it very painful to remove. The there's the issue of large red tape marks that would last hours and hours. Again, not so much of an issue for females as makeup can probably mostly cover them, Or there are a lot of retired folks here that don't have to show up for work looking like they were just in a fight.
You are consistently and doggedly determined to fail.
I beg to differ. You have no idea how much I want to know what real sleep feels like. I would like to get back to being productive and motivated. I would like to cut down from 10 cups of coffee a day, every day. I know you know how it feels to never sleep and how good it feels when you do. All I know is what it feels like to wake up everyday as tired as the night before and drink coffee all day just to function at a basic level. I wasted a month waiting for an appointment, then spent another month dicking around with CBT-I. The I waited another month for the sleep studies to be done. Now, after over 2 months of "treatment" I'm no better off AND disturbing my wife's sleep.

Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 10:04 am

TASmart wrote:I have used paper medical tape with mixed results. Mostly it helps keep my mouth shut, but it can fail. I believe it's not so much the pressure blowing your mouth open, as your jaw wanting to open. If you keep your tongue pressed to the back of your teeth and a slight suction there is no pressure in your mouth. It's when everything relaxes and sags the pressure is released to your mouth area. Practice keeping your tongue where it belongs.
I have used paper medical tape for other things, and it doesn't stick very well (that's why it comes off easily) and it's quite fragile.

How much tape did you have to use?

As for keeping pressure out of my mouth, that's not a problem when I'm awake, I can now breathe in or out through my nose or mouth, or in one and out the other - with the xPAP on. Unfortunately, I catch myself nearly every night, as soon as I drift off, my cheeks puff out and then my mouth blows open. It's not just my jaw dropping open - the chin strap would have stopped that.
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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ChicagoGranny
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Re: Spinning my wheels :-(

Post by ChicagoGranny » Thu Oct 05, 2017 10:46 am

MaxINTJ wrote:spent another month dicking around
In other words, not a committed effort ...

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MaxINTJ
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Re: Spinning my wheels :-(

Post by MaxINTJ » Thu Oct 05, 2017 10:52 am

ChicagoGranny wrote:
MaxINTJ wrote:spent another month dicking around
In other words, not a committed effort ...
Maybe you just have no idea what CBT-I involves. I knew ahead of time because I utilized this wonderful resource called the "Internet" and was already doing every single thing CBT-I ended up doing. It was a month of dicking around for absolutely no reason at all. All they had to do was ask me questions and my CBT-I would have been done in 10 minutes.

In fact, I didn't even push my sleep issue with my PCP until AFTER I had done everything that CBT-I involves.
Phillips 960 AutoSV Paving Brick, Phillips Dreamwear Mask - Nothing is working.
Diagnosis of crappy sleep, desats under 80, maybe UARS

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Cpapian
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Re: Spinning my wheels :-(

Post by Cpapian » Thu Oct 05, 2017 11:20 am

Max, when can you take a vacation. Or can you get short term disability at your workplace. I am just wondering if all your coffees and stay awake methods are now acerbating your sleep. So I am thinking you freedom to stop medicating to stay awake, (i.e. freedom from driving and work). Clear out your system and see what is really there.

Believe me I am not a doctor, nor do I think I am, but I am just wondering if your situation has morphed to the chicken or the egg.

Maybe a long talk with your dr, explaining how this sleep issue is impacting your whole life, how you have been a good sport and tried everything, all with no results ......

Other than that my only suggestion is to remove the alien from your face.

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