Can you help me become compliant?

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

Post by Sonya » Fri May 01, 2015 11:46 am

I am having some real struggles with CPAP. After years of sleep problems, someone finally sent me for a sleep study. My AHI was 24 so they sent me to the CPAP store and that was that for any discussion. A few weeks later, a guy gave me a bunch of equipment I don't understand and said, "Do your best and call if you have any problems." Well, when I did call they just say to "do the best you can" but be sure to get compliant, or else.

I finally got back in to see the doctor yesterday, after 6 weeks on the machine. She walked in the room, threw papers on the desk and said, "You know you're not even close to compliant?" Um.. yeah, that's why I'm here. I told her that when I call, nobody has any help to offer me. When I got sick while traveling, I called the medical supplier to see if I could buy a full face mask somewhere to help me, but he said that wasn't really an option. (huh? really?) And of course, to do the best I can.

The doctor said that I need to be fully compliant by the end of May or lose my machine. She said I can see their CPAP educator for help, but her first available appointment is May 22. So, that's probably not going to help me too much. All I have left is the wisdom of this group to rely on.

Here are my problems.

I am falling asleep on the couch at night in front of the tv. I usually wake up about 2am and go to bed and put on my machine.
By 4-5 am, I have managed to take the mask off my face and it's just blowing air on the floor. Or, I somehow have taken off the mask, hung it up and turned off the machine, with no recollection.

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.

Last night I tried as hard as I could to keep it on, but woke up this morning in agony as I had swallowed a ton of air. I'm starting to think that the system has given up on me already, but it seems important to get on top of the OSA. What can I do here?

yaconsult
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Re: Can you help me become compliant?

Post by yaconsult » Fri May 01, 2015 12:26 pm

The biggest thing is, you've got the wear the machine every time you sleep, no matter where, to get the benefit of therapy. If you are spending any time sleeping in a chair, you've got to move the machine out there and hose up whenever there is a chance of falling asleep. This will also get your body used to using the machine and is commonly recommended for people new to cpap.

Please add the details of your machine and equipment to the appropriate section of your profile so that people know what you have to work with.

You can do this! It's a process. And you will feel better.

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SGearhart
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Re: Can you help me become compliant?

Post by SGearhart » Fri May 01, 2015 12:31 pm

Welcome to the forum.
I would highly suggest that you put the CPAP next to your couch and use it while you're watching TV. This will go towards your compliance and allow you to become accustomed to the mask and pressure. Since you're probably watching TV from 8pm till the 2am, that would be 6 hours of use. Most insurance allow a minimum of 4 hours per night to be compliant. Just be sure that you move your CPAP to the bedroom when you move from the TV room.

Good Luck.

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Pugsy
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Re: Can you help me become compliant?

Post by Pugsy » Fri May 01, 2015 12:34 pm

Use the machine while awake and watching TV...it will help you get adjusted to the machine and mask and that time will count towards your compliance usage hours.
You need a little over 4 hours a day/night to meet compliance usage requirements. The machine doesn't know if you are awake or asleep and as long as you are attached to the machine the hours will count even if you are awake.
If it means moving the machine out to the living room...move it.

If you are using a nasal pillow mask...can you go up a size in nasal pillows? It will help with the air movement so it isn't quite so difficult to exhale or inhale.

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Sonya
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Re: Can you help me become compliant?

Post by Sonya » Fri May 01, 2015 12:41 pm

Thanks for the tips. It's a hassle to move the machine as my husband goes to sleep early and setting up the machine in the dark is not fun. I can't yet do it by touch and the light wakes him up and makes him grumbly. But I'll try to use it by the TV at night and see if that helps.

I'll also call about a larger size for the nasal pillows.

Does everyone have difficulty with getting support and appointments at their sleep clinic?

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Pugsy
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Re: Can you help me become compliant?

Post by Pugsy » Fri May 01, 2015 1:00 pm

The P10 mask package comes with 3 different sizes of nasal pillows...if you didn't get them then your equipment supplier stole them from you and I would be raising bloody hell. You and your insurance paid for a complete package.
But given the non existent support you have got from them it doesn't surprise me one bit that they would do that...they pull them out and them sell them to someone else as a replacement pillow.

This level of non support isn't common but unfortunately not all that rare either.

Put the machine where you stand to use it more...either awake or asleep and if that is in the living room watching TV then put it there and sleep there if you have to.
Right now we have to get you compliant so they don't yank the machine from you.

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yaconsult
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Re: Can you help me become compliant?

Post by yaconsult » Fri May 01, 2015 1:47 pm

Sonya, why not try something like this: LE LED Headlamp, 18 White LED and 2 Red LED, 4 Brightness Level Choice, LED Headlamps, 3 AAA Batteries Included, http://www.amazon.com/Headlamp-Brightne ... B005FEGYJC

Only $7 and the best seller in that category. It would allow you to see what you are doing without waking up hubby and still have your hands free for handling the cpap equipment. Ignore the fact that you might look like you are getting ready for spelunking or a bike ride!

Or get something like this from your local hardware store or 7-11 and use velcro strips or tape to attach it to the side of your cpap machine: http://www.amazon.com/Duracell-60-100-L ... B0088V54EU

You should, however, be careful about moving the machine when there is water in it. If you drop it and the water gets into the blower, it is possible that it might not work any more. The water tank is easily removed and can be moved separately for safety. Maybe you won't need water in it while watching tv and will only add water when you are ready to move to the bedroom.

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CanadaVoice
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Re: Can you help me become compliant?

Post by CanadaVoice » Fri May 01, 2015 4:00 pm

Hi,

I work for a cpap company in Canada and we're running along with those who are frustrated just like you are when getting used to the CPAP.

Much of what has been said in this thread can work.

The emphasis on being gradually compliant is key.

You have some time to work with, which gives you an advantage to being reasonable about your CPAP results.

The way to be compliant is much like others in this thread offered, using CPAP while awake, easing into the breathing pattern with the mask you have.

Be sure not to force yourself. That just invites issues.

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.

When staying consistent with a mask and CPAP for a small period of sleep time at night, your body, breathing and tolerance slowly increases. One hour will become two and so on. Be sure to add maximum comfort to your sleeping environment, like aromatherapy, dimly lit room, very pleasing music if desired.

It's a bit like learning to jog before going into an all out distance run.

Hope something helps you.

Cheers!

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LSAT
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Re: Can you help me become compliant?

Post by LSAT » Fri May 01, 2015 4:59 pm

Canadavoice.....On your previous post advocating this, almost everyone disagreed with your philosophy....even the Canadians. Please stop with this foolishness. If a mask comes off during the night...IT SHOULD BE PUT BACK ON!

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Krelvin
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Re: Can you help me become compliant?

Post by Krelvin » Fri May 01, 2015 5:39 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).
Huh? You put the mask back on is the right response.
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kaiasgram
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Re: Can you help me become compliant?

Post by kaiasgram » Fri May 01, 2015 5:58 pm

CanadaVoice's advice reminds me of this funny quote:
By doing just a little every day,

I can gradually let the task

completely overwhelm me.
If each time the mask comes off you say "Oh well," and give yourself permission to fall back asleep without it, you will eventually just not bother with it. Like any other new habit, wearing the mask will only become easier if you practice it faithfully and regularly. Basic -- very basic -- psychology.

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Last edited by kaiasgram on Fri May 01, 2015 10:54 pm, edited 1 time in total.

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palerider
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Re: Can you help me become compliant?

Post by palerider » Fri May 01, 2015 6:31 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.!
aaaaaand, this is why, we as a forum, tend to be very suspicious of "people in the business".

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Enchanter
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Re: Can you help me become compliant?

Post by Enchanter » Fri May 01, 2015 6:48 pm

Sonya wrote:I am having some real struggles with CPAP. After years of sleep problems, someone finally sent me for a sleep study. My AHI was 24 so they sent me to the CPAP store and that was that for any discussion. A few weeks later, a guy gave me a bunch of equipment I don't understand and said, "Do your best and call if you have any problems." Well, when I did call they just say to "do the best you can" but be sure to get compliant, or else.

I finally got back in to see the doctor yesterday, after 6 weeks on the machine. She walked in the room, threw papers on the desk and said, "You know you're not even close to compliant?" Um.. yeah, that's why I'm here. I told her that when I call, nobody has any help to offer me. When I got sick while traveling, I called the medical supplier to see if I could buy a full face mask somewhere to help me, but he said that wasn't really an option. (huh? really?) And of course, to do the best I can.

The doctor said that I need to be fully compliant by the end of May or lose my machine. She said I can see their CPAP educator for help, but her first available appointment is May 22. So, that's probably not going to help me too much. All I have left is the wisdom of this group to rely on.

Here are my problems.

I am falling asleep on the couch at night in front of the tv. I usually wake up about 2am and go to bed and put on my machine.
By 4-5 am, I have managed to take the mask off my face and it's just blowing air on the floor. Or, I somehow have taken off the mask, hung it up and turned off the machine, with no recollection.

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.

Last night I tried as hard as I could to keep it on, but woke up this morning in agony as I had swallowed a ton of air. I'm starting to think that the system has given up on me already, but it seems important to get on top of the OSA. What can I do here?

Congrats. But as RobySue said earlier, every minute you sleep that you don't have the mask on detracts from all the time you do wear the mask.
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postitnote
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Re: Can you help me become compliant?

Post by postitnote » Fri May 01, 2015 7:24 pm

Krelvin wrote:
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).
Huh? You put the mask back on is the right response.

Sorry but masks don't fall off on their own! The little demon living on your shoulder makes you take it off. The mask itself is innocent! And we need to overtake that demon and keep putting the mask back on!
Morbius, are you bored?

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robysue
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Re: Can you help me become compliant?

Post by robysue » Fri May 01, 2015 8:04 pm

Sonya wrote: Here are my problems.

I am falling asleep on the couch at night in front of the tv. I usually wake up about 2am and go to bed and put on my machine.
By 4-5 am, I have managed to take the mask off my face and it's just blowing air on the floor. Or, I somehow have taken off the mask, hung it up and turned off the machine, with no recollection.
When do you turn the TV on and how quickly do you fall asleep while watching the TV?

The way I see it you have the following choices for getting your compliance hours in so they don't yank the machine:

1) Move the CPAP to the living room and mask up when you start watching TV. This is a practical way of building the compliance hours as long as you watch the tv for at least 4 hours each night. If you fall asleep in front of the tv and sleep with the mask on your nose until 2:00AM or later, so much the better. But even if you don't fall in front of the tv, as long as the mask is on your nose and the machine is on, it will count as hours towards compliance and it may help your body become acclimated to how the mask feels. And that will help in the long run when you wind up moving the CPAP back to the bedroom.

2) Leave the CPAP in the bedroom and go to bed when you start to feel even a little bit drowsy. This means breaking the habit of falling asleep in front of the TV on the couch. In other words, you will need to become aware enough of when you are getting close to falling asleep and you will need the discipline to turn the tv off and just go to bed and mask up. And if you wake up in the middle of the night with the mask off, you need to calmly put the mask back on before going back to sleep.

3) Move the CPAP back and forth between the living room and the bedroom. In other words, when you start watching the tv in the living room, the CPAP should be close by your side and you should mask up when you start feeling even a tiny bit sleepy. If/when you wake up and want to go to bed, move the machine back to the bedroom and mask back up. Yes, turning the light on will disturb hubby and he'll be grouchy. Remind him that this machine is necessary to preserve your health. If you have a second bedroom where either he or you could sleep when you are ready to go to bed after waking up from falling asleep in front of the tv, it may be a good idea for one of you to use the extra bedroom for a few weeks while you are working on making compliance.

If I had to pick amongst the three, I'd suggest trying 1 or 3 first: You have a bad habit of falling asleep in front of the TV and that habit is allowing your mind to avoid facing the fact that you have to learn to sleep with the mask on your face. So my guess is that even if you promise yourself that you won't fall asleep in front of the TV, you will wind up breaking that promise night after night. So it may be best (for now) to accept that you are used to falling asleep in front of the TV and try to use that fact to your advantage by masking up and seeing if you still fall asleep for several hours in front of the TV each night.

Long term there are two bad habits that you are going to have to break in order for CPAP to be truly effective in terms of managing your OSA: (1) You will have to break the habit of falling asleep for many hours in front of the TV without the mask on your nose, and (2) you will have to break the habit of allowing yourself to fall back asleep without the mask on your nose when you wake up in the middle of the night only to find out that you've removed the mask in your sleep.

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.
You may be more comfortable with a nasal mask that fits over the tip of the nose rather than sitting right against your nostrils. My hubby can't stand nasal pillows because he finds them harder to exhale with as well as harder to inhale with. (I, on the other hand, like the nasal pillows and can't tolerate anything covering the tip of my nose.)
Last night I tried as hard as I could to keep it on, but woke up this morning in agony as I had swallowed a ton of air.
The air in your stomach is called aerophagia. And it can be a real problem for some people. I had really serious problems with aerophagia when I started PAPing 4 1/2 years ago. In my case the problems were so bad that eventually my sleep doctor switched me to a bilevel machine even though I only need very minimal pressure. The switch and time took the edge off the aerophagia, although I still get it sometimes.

For some people, using self-help GERD treatments, such as elevating the head of the bed and not eating within 3 or 4 hours of bedtime, make a big difference. Figuring out a way to comfortably sleep in a position as close to your pre-CPAP favorite condition can also help. But if the aerophagia continues to happen on every night that you manage to keep the mask on for 4+ hours, you need to give the doc's office a call and tell them that the aerophagia is a huge issue for your being able to become compliant and that you need some help from them in figuring out what to do about it.

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