Can you help me become compliant?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Captain_Midnight
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Re: Can you help me become compliant?

Post by Captain_Midnight » Fri May 01, 2015 8:15 pm

CanadaVoice wrote:...

A common approach we advocate out here in Canada is to allow the mask to fall off on its own at night (AFTER getting used to it when awake with naps and light daytime sleeping). Because if there is still a subconscious rejection of the mask, it's best not to fight it. That way the data from your machine only shows actual usage time and one stoppage.
...
Canadavoice.

Respectfully, I do not happen to agree with this.

That said, you and your opinions are welcome here.

I'm sorry about some of the snarky comments above, all thoughtful comments should be welcomed.

Thoughtful discussions among holders of different views? Priceless.

.

.

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robysue
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Re: Can you help me become compliant?

Post by robysue » Fri May 01, 2015 8:20 pm

CanadaVoice wrote: A common approach we advocate out here in Canada is to allow the mask to fall off on its own at night
Unfortunately this is approach is exactly what has led to Sonya being in danger of having the machine taken away for lack of compliance: She's been going to sleep with the mask on each night, she takes the mask off in her sleep, and she hasn't been making herself put it back on when she wakes up about 2 hours after she first went to sleep with the mask on. And this has been going on 6 weeks and she is now in danger of losing the machine because her insurance company will not pay for machine that is not being used at least 4 hours on most "nights".

And in order to NOT lose her machine, Sonya has to prove that she is using the machine at least 4 hours for something like 20-24 of the nights between now and May 31.

To put it bluntly, Sonya can no longer afford to continue with trying to incrementally increase her usage of the machine. She's got to figure out a way to use it 4+ hours (almost) every night now.

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mgaggie
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Re: Can you help me become compliant?

Post by mgaggie » Sat May 02, 2015 12:07 am

Sonya wrote: Does everyone have difficulty with getting support and appointments at their sleep clinic?
Yes, I do! They are frickin useless. Four hour round trip, $60+ in petrol, and none of them bother to make notes or if notes are made they don't bother to read them. They believe that patients should be mushrooms, and heaven help anyone who decides to take charge of their own therapy

Sonya
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Re: Can you help me become compliant?

Post by Sonya » Sat May 02, 2015 11:52 am

robysue wrote:To put it bluntly, Sonya can no longer afford to continue with trying to incrementally increase her usage of the machine. She's got to figure out a way to use it 4+ hours (almost) every night now.
Yup. Does the insurance company require 4 hours in one sitting, or can I break that up into segements? I'm thinking of trying to get 2 hours in the day/evening and then, hopefully wear it all night. I got 3.7 hours last night, but the 1.5 I got earlier while watching TV should help make the numbers look better, right? Or does it need to be 4 consecutive hours?

Here's the thing - I'm a grown up. I am 47 years old and have been taking care of myself for quite some time. But not going to bed when I'm tired and sleeping on the couch is a terrible habit and one I'm not sure I can break. Years and years ago when I was in my early 20's my fiance got cancer. It was him, his 2 teen aged sons and I living next door to his parents and grandmother and my days were HECTIC!!! Those hours at night when everyone was asleep became "my time". After his death, I still liked that quiet time at night and stayed up as late as possible to get as much of it as I could.

Now, decades later, I'm married and living a nice life, but that time after my husband goes to bed at 10pm is still "my time". I know I need to just get in the damned bed and put the CPAP on, but I get super cranky and "I don't wanna!!!" about it. Time to get over that I guess.

Thanks again to everyone for their help here. I am determined to be compliant come hell or high water.

herefishy
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Re: Can you help me become compliant?

Post by herefishy » Sat May 02, 2015 12:20 pm

Great attitude! If it were me, I would try taping my mask to my cheeks, and that would at least give me an indication what might be making me take it off.

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vmbsonya
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Re: Can you help me become compliant?

Post by vmbsonya » Sat May 02, 2015 12:59 pm

My husband suggested duct tape.

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palerider
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Re: Can you help me become compliant?

Post by palerider » Sat May 02, 2015 1:13 pm

Sonya wrote:
robysue wrote:To put it bluntly, Sonya can no longer afford to continue with trying to incrementally increase her usage of the machine. She's got to figure out a way to use it 4+ hours (almost) every night now.
Yup. Does the insurance company require 4 hours in one sitting, or can I break that up into segements? I'm thinking of trying to get 2 hours in the day/evening and then, hopefully wear it all night. I got 3.7 hours last night, but the 1.5 I got earlier while watching TV should help make the numbers look better, right? Or does it need to be 4 consecutive hours?.
I'm pretty sure that it's cumulative over a 24 hour period.

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robysue
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Re: Can you help me become compliant?

Post by robysue » Sat May 02, 2015 2:57 pm

Sonya wrote:
robysue wrote:To put it bluntly, Sonya can no longer afford to continue with trying to incrementally increase her usage of the machine. She's got to figure out a way to use it 4+ hours (almost) every night now.
Yup. Does the insurance company require 4 hours in one sitting, or can I break that up into segements? I'm thinking of trying to get 2 hours in the day/evening and then, hopefully wear it all night. I got 3.7 hours last night, but the 1.5 I got earlier while watching TV should help make the numbers look better, right? Or does it need to be 4 consecutive hours?
Most insurance companies are looking for 4 hours in each 24 hour period. But you should call your insurance company and find out from them what they mean by "compliance". Insurance companies can make their own rules about what "compliance" means.
Here's the thing - I'm a grown up. I am 47 years old and have been taking care of myself for quite some time.
Unfortunately your insurance company gets to make up the rules about what they will and will not pay for. And most of them don't want to pay $$$$ for a piece of equipment that is not being used.
But not going to bed when I'm tired and sleeping on the couch is a terrible habit and one I'm not sure I can break.
In that case, I think the best way to get into compliance is to move the CPAP to the couch and put it on when you start feeling sleepy. Or when you start watching a TV show that you know you're going to fall asleep in front of. Once you start falling asleep with it at the beginning of the night, you might actually find yourself waking up on the couch in the morning because you didn't wake up at 2:00AM.

Long term you are going to either need to get a second CPAP for the bedroom or move the CPAP from the living room into the bedroom for when you wake up after falling asleep on the couch and then decide to go to bed in the bedroom.

I know I need to just get in the damned bed and put the CPAP on, but I get super cranky and "I don't wanna!!!" about it. Time to get over that I guess.
Been there, done that. Along with a lot of other folks. Sure, it's a pain in the you-know-where to have to make a big change in your bedtime routine. And CPAP is a big change. And it sounds like giving up your post 10pm tv-watching until you fall asleep on the couch is also a big change.

Work on compliance first so you don't lose the machine. Move the CPAP to the living room and sleep with it there for as long as you're asleep on the couch. And keep in mind that if you wear it from 9:30pm to 2:00am, you've got 4.5 hours of usage.

Once you are in compliance and are no longer in danger of loosing the machine, you will then need to worry about how do you sleep all night with the CPAP if you are sleeping 3-4 hours in the living room and then another 3-4 hours in the bedroom.

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bwexler
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Re: Can you help me become compliant?

Post by bwexler » Sat May 02, 2015 10:16 pm

You have received a lot of great advice and you need to apply most of it.
Everyone has overlooked one of your concerns. You complained about difficulty breathing with the mask on. That may be because the very helpful DME set your auto machine "wide open " 4-20cm h2O. If you can get into the clinical menu and determine your current settings for minimum and maximum pressure, EPR, humidifier etc. then report back here for more specific help. Many folks, me included feel like we will suffocate when the pressure starts as 4. If the pressure reaches near 20 that can contribute to aerophagia. I hope tonight goes better.

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borgready
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Re: Can you help me become compliant?

Post by borgready » Sun May 03, 2015 11:37 am

If you can't breathe through your nose, cpap is really useless.

What do doctors usually say about the difficulty breathing through the nose? Do they even get, that if you can't breathe through your nose, the cpap is useless. I don't think most of them understand that simple concept.

Getting a nose job where they surgically rebuild or open up the nose seems like a possible route to check into.

When you used Afrin did it work when you used it as far as allowing you to breathe through your nose with cpap on or did you still take the mask off?

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robysue
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Re: Can you help me become compliant?

Post by robysue » Sun May 03, 2015 12:05 pm

bwexler wrote:You have received a lot of great advice and you need to apply most of it.
Everyone has overlooked one of your concerns. You complained about difficulty breathing with the mask on.
Bwexler brings up a good point Sonya, we do need to tackle the fact that you are having difficulty breathing with the mask on. Here's your original quote about the breathing problems:
Sonya wrote: I have trouble with exhaling through my tiny reptilian nostril slots It feels suffocating. I came down with a cold while traveling a couple weeks ago and the nasal pillows were impossible. I ended up using Afrin nasal spray before bed, but then got the rebound which made it worse.
Questions for you to answer that will help us help you more effectively:

1) Do you breathe through your nose comfortably when you are awake and going about your daily activities? Or do you have congestion problems and problems with exhaling even when the mask is NOT on your nose?

2) Are you using the optional heated hose with your PR System One Series 60 machine? If so, what do you have the humidity level set to? If not, are you using the heated humidifier? If so, at what setting?

3) When you say that you feel like you are suffocating with the mask on, does that mean you are having trouble exhaling fully enough? Or are you having trouble inhaling enough to feel comfortable? The two sensations are quite different, but newbies often use, "I feel suffocated" to describe both feelings.

4) What pressure range is your machine currently running in? And do you have A-Flex turned on, and if so, what's the A-Flex setting? And are you using the Ramp setting?

Here's why we need the additional information:

1) Daytime nose breathing problems can indicate that you may need a full face mask instead of the nasal pillows mask you are currently using. Daytime nose breathing issues can also indicate that you have a septum that is so badly deviated that surgery may help the daytime breathing issues, and once you are breathing more clearly through your nose, it may be much easier to adapt to using the CPAP at night. But if daytime breathing problems are NOT an issue, then these are things that are likely unimportant when it comes to getting you compliant and keeping you compliant.

2) Humidity needs vary a lot from PAPer to PAPer. A lot of sleep clinics, DMEs, and sleep docs naively believe that if congestion on CPAP is an issue, the answer must be "use more humidity." While that works for some of us, it does not work for everybody. There are plenty of people who find too much added humidity causes just as much as too little added humidity. Experimenting with the humidity settings is the only way to find out if too much or too little humidity is causing the excess congestion.

3) If the suffocation feeling is coming from not being able to exhale completely, then we usually attack the problem through exhalation relief, the ramp, and/or reducing the pressure if that can be done and still treat the OSA sufficiently well. But if the suffocation feeling is coming from not being able to inhale completely, the usual fixes are to NOT use the ramp, increase the minimum pressure setting, and turn the exhalation relief setting down. As you can see, the fixes for "can't exhale comfortably" and "can't inhale comfortably" are not the same, and in fact, fixes for one of these problems is likely to make the other problem feel worse.

4) In order to make useful suggestions about how to tackle the suffocation feeling, we not only need to know more about what you mean by "I feel suffocated", we also need to know what pressures you are currently trying to use and whether you have A-Flex turned on or off and whether you are using the ramp.

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Pugsy
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Re: Can you help me become compliant?

Post by Pugsy » Sun May 03, 2015 12:16 pm

borgready wrote:What do doctors usually say about the difficulty breathing through the nose? Do they even get, that if you can't breathe through your nose, the cpap is useless. I don't think most of them understand that simple concept.
Do you have documentation as to your claim of "useless" or is it personal opinion and personal experience?
Perhaps it isn't mainstream medicine that is having trouble understanding the concept of full face mask use actually being effective.
Now I have read where nasal cpap use is preferable if at all possible but have never seen where it is stated that if someone isn't using a nasal interface that the cpap therapy is "useless". Pretty strong words...and I would like to see documentation if you have it.

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palerider
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Re: Can you help me become compliant?

Post by palerider » Sun May 03, 2015 12:43 pm

Pugsy wrote:
borgready wrote:What do doctors usually say about the difficulty breathing through the nose? Do they even get, that if you can't breathe through your nose, the cpap is useless. I don't think most of them understand that simple concept.
Do you have documentation as to your claim of "useless" or is it personal opinion and personal experience?
Perhaps it isn't mainstream medicine that is having trouble understanding the concept of full face mask use actually being effective.
Now I have read where nasal cpap use is preferable if at all possible but have never seen where it is stated that if someone isn't using a nasal interface that the cpap therapy is "useless". Pretty strong words...and I would like to see documentation if you have it.
+1

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Last edited by palerider on Sun May 03, 2015 5:03 pm, edited 2 times in total.
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palerider
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Re: Can you help me become compliant?

Post by palerider » Sun May 03, 2015 12:45 pm

Pugsy wrote:Pretty strong words...and I would like to see documentation if you have it.
the makers of the oracle mask just might beg to differ with his "theory", eh? *lol*

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Pugsy
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Re: Can you help me become compliant?

Post by Pugsy » Sun May 03, 2015 12:52 pm

palerider wrote:
the makers of the oracle mask just might beg to differ with his "theory", eh? *lol*
Yep, I bet they would. I keep forgetting about that particular mask option. One of those that I never remotely considered trying because if I can't breathe through my nose I am pretty miserable and there just wouldn't be much sleep anyway. No sense in wasting my money on that one.

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