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Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 9:34 am
by BlackSpinner
Andrew08 wrote:BlackSpinner wrote:The big question is "Why are you waking up after 2 hours?" What is happening in your data?
The other question is why do you chose to "reward" yourself after 2 hours by taking the mask off?
With all due respect, who says it is a "reward"? That is not the reason at all why I take it off. It is more in frustration.
Quick update, tried the comfortlite 2, did not stay on the whole night but lots of progress and I see this being the one for me.
Taking it off is a reward. Stop thinking about the rational adult, this is like potty training a two year old, you are rewarding the temper tantrum. You don't pat them on the head and let them walk away and let them pee on the rug because they got frustrated. Beating them also doesn't work.
You need to set up a real reward system for yourself. A reward for keeping it on longer - something that is a luxury - whether it that is a bowel of fresh raspberries, a glass of very old cognac, or hand dyed sock yarn- you need to start associating it with pleasure not frustration.
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 1:21 pm
by Denial Dave
+++++++++1
BlackSpinner wrote:Andrew08 wrote:BlackSpinner wrote:The big question is "Why are you waking up after 2 hours?" What is happening in your data?
The other question is why do you chose to "reward" yourself after 2 hours by taking the mask off?
With all due respect, who says it is a "reward"? That is not the reason at all why I take it off. It is more in frustration.
Quick update, tried the comfortlite 2, did not stay on the whole night but lots of progress and I see this being the one for me.
Taking it off is a reward. Stop thinking about the rational adult, this is like potty training a two year old, you are rewarding the temper tantrum. You don't pat them on the head and let them walk away and let them pee on the rug because they got frustrated. Beating them also doesn't work.
You need to set up a real reward system for yourself. A reward for keeping it on longer - something that is a luxury - whether it that is a bowel of fresh raspberries, a glass of very old cognac, or hand dyed sock yarn- you need to start associating it with pleasure not frustration.
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 2:29 pm
by jencat824
Andrew,
Now that you've found a mask that works for you, next step is building up the time the mask stays on you. Maybe keeping a pad & pen beside the bed & if you wake, write down the time if the mask comes off.
I'm also with Blackspinner, the taking the mask off may be a subconscious reward, you may not think of it that way but upon waking you just have to get that mask off. You might try some type of reward for keeping it on longer. Something like if I keep it on 5 hrs instead of just 4, I'll get myself a sundae (or substitute anything you like) on the way home from work. You get the idea. Its just a thought, but I also want to add that any mask that works for you is the right mask, don't let anyone tell you any different, we all have different size faces, so if the CL2 works then that is the mask for you.
Good luck & let us know how it goes.
Jen
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 2:42 pm
by 49er
Andrew,
You have every right to be proud of yourself and that is not definitely not a small victory. I am happy for you.
49er
Andrew08 wrote:49er- I went from approx 2 hrs to 4. I know, it may sound small but I consider it a victory. It's incentive to stick with this mask for sure. RE: the reason why it worked, I think it may because the hose is attached to the top of your head as opposed to at the nose. This allows me more movement.
Kiralynx- Thank you for sharing your story. I will know who to come to as we seem like-minded. One issue I need to address are the size of the nasal pillows. They worked ok last night but could probably drop down to a small from a medium.
ellen- As described above, the comfortlite allows more movement for a side sleeper like me and doesn't shift much if you go to your side. I always thought I was a mouth breather but I guess I was wrong. The Quattro was just too bulky on my face.
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 2:55 pm
by jdm2857
BlackSpinner wrote:A reward for keeping it on longer - something that is a luxury - whether it that is a bowel of fresh raspberries, a glass of very old cognac, or hand dyed sock yarn- you need to start associating it with pleasure not frustration.
Not quite sure what type of fourm that suggestion belongs on.
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 3:30 pm
by Denial Dave
Andrew
what are your pressure settings on your machine
do you have EPR available to ease the breathing?
what are your mask leak levels
is it the pressure that is waking you or the mask leaks
after 7 months of trying, you may need to keep a log of why it is happening..
it may be getting difficult for you to differentiate between "can't keep the mask on" & "won't keep the mask on"
maintaining a log for why it happened may be the trick to your getting to 7-8 hours of use.
Dave
Re: Going on 7 months, no luck with a mask
Posted: Thu May 30, 2013 7:47 pm
by ClassicsMom
I found it helpful to go to the manufacturer's web site such as ResMed and watch any videos and read all of the materials on the particular mask to ensure that I knew how to fit the mask and put it on. I use Swift FX and I found I had to play with it a bit to get the strap length. At first, I was making the mistake of tightening the straps too much. I also found that even though I measured a "small" nasal pillow with the ResMed measuring device that the large size was better for me. Then to top it off after about 1 1/2 years using the large pillows, I recently found they were not working well for me anymore and now use the medium pillow with great success. So I guess I am saying make sure you really understand the instructions for applying masks and experiment a little too.
Re: Going on 7 months, no luck with a mask
Posted: Fri May 31, 2013 1:38 am
by Janknitz
You need to set up a real reward system for yourself. A reward for keeping it on longer - something that is a luxury - whether it that is a bowel of fresh raspberries, a glass of very old cognac, or hand dyed sock yarn- you need to start associating it with pleasure not frustration.
Mmmmm! Bowels of fresh raspberries. Nom, Nom!
(Just having some fun, Blackspinner, no offense meant!)
Andrew, keep working it, you're on the right track.
Re: Going on 7 months, no luck with a mask
Posted: Fri May 31, 2013 1:45 am
by Xney
It took me 3 months just to fall asleep with cpap on, another 6 months to sleep the whole night.
Every step is a victory, if a small one. Don't discount it!
Re: Going on 7 months, no luck with a mask
Posted: Sat Jun 01, 2013 2:40 pm
by Kiralynx
Andrew08 wrote:Kiralynx- Thank you for sharing your story. I will know who to come to as we seem like-minded. One issue I need to address are the size of the nasal pillows. They worked ok last night but could probably drop down to a small from a medium.
Yes -- I end up with mediums in other masks. (I've tried several others because my DME is very difficult about getting what I want and need.) But I ended up using the small nasal pillows on the CL2. Actually, what works the best for me is the #4 Direct Seals. They're slightly smaller than the medium nasal pillows and slightly larger than the small nasal pillows, at least to my perception.
Also, if you thought you needed a full face because your mouth opened, well -- the idea of a chin strap was like, "Say wait! I just got rid of the straps all over my face with the CL2, and now you want me to add MORE straps?!"
Some people talk about using a cervical collar instead of a chin strap. Some people don't live in hot and humid south Louisiana -- I'd die of heat prostration with one of those things around my neck!
So, I invented my "brandy keg."
A 4" diameter cylinder, 4" long, of hard medical foam. I believe I got it here.
http://tinyurl.com/lvdbf32. I got the longer piece and then just cut the length I needed. I bored a hole the length of the cylinder with an apple-corer. I wrapped it in fleece (Karen, of Padacheek, later made me a fancy cover for it) and stuck a strap through it -- I actually recycle my CL2 straps these days -- I cut them in half lengthwise when they are a little too stretched to hold the mask securely, and then run one through my cylinder. That way, I get two brandy keg straps for every CL2 strap, and they get used a bit longer. I fasten the strap around my neck with the cylinder firmly under my chin, and then tuck my head a little when I'm settled on my side so my chin is propped on the cylinder. Holds my mouth shut, and lets me use my CL2! Plus, if I get thirsty at night, the cylinder isn't in the way of taking a sip of water from my sports bottle, and neither is the CL2. Depending on your neck length and width, you might find either a thicker diameter or a longer piece will work for you. But I tested the 4" on my tall husband with the handlebar moustache and full beard, and it didn't pull on his beard, so....
Hey, congrats on going from 2 hours to four hours!