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Permalink Reply by sleepycarol on May 29, 2009 at 11:11am

Hi Debbie!!

My mask loosens during the night and I have experienced the slippage as well. I think in part it is due to the fact that I pick up some water gain and at night it lessens so that probably has something to do with mine. Also, I think it depends how active you are at night. I have noticed when I am more active at night things kind of stretch a bit and tend to dislodge some. The straps are stretchy for a purpose, but that kind of contributes to the problem. I use a nasal pillow mask and wear a stretchy headband over the mask -- front to back -- to help stablize and help keep it in place. Even with that it tends to move on some nights.

As far as the scent goes after taking the mask off, I am a poor one to answer that. My sense of smell is messed up (it has a name but can't think of it) where I smell scents that aren't there. I maybe sitting in my classroom and smell apple pie baking for example. My room was across the hall from the home ec room and I would see if the class was making pie only to be told no. That is only one example of many. Sometimes the smells aren't that pleasant. :( It is in't always there and so why it is sometimes hard to judge if what I am smelling is accurate or just my messed up sense of smell.

In the summer I typically do not use the humidifier at all. In the dead of winter I use it in passover mode only -- unless I have a severe cold and am really, really congested. I use ONLY distilled water -- never use tap water or even purified bottled water -- and just top it off each night. I can usually get about 5 to 7 days with one filling in passover mode. Others are more picky than me and dump and refill every night. The reason you want distilled water is in many cities they add chemicals to purify the water which maybe harmful to breathe in night after night. There are microscopic creatures that live in the water and can cause mold to grow.

Yes, it gets better. Now I can not sleep unless my mask and machine are on. It tends to become second nature to many of us. It takes a while to feel the benefits for most of us. Many of us have what is called sleep debt that needs paid back -- this is where your body craves sleep due to a lack of sleep. For some it takes a few days, others much longer to feel the difference. As far as the number of times you stopped breathing, it isn't a good indicator of how much damage it is doing to your body. How long was each event, what were your O2 levels, play a factor in it. Think of it this way-- when awake you hold your breathe for several seconds for that many times and see how you feel at the end of the day. I bet you will notice an immediate difference at the end of the day due to a lack of constant oxygen to the brain. Now factor the apneas in at night, every night and you can understand why your body is rebelling.

Good luck and keep reading the forums for information, tips, ask questions, etc.

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Permalink Reply by Katrina Ryefield on May 29, 2009 at 12:20pm

Well hello Debbie!

If you're like me, my mask moves around because I simply can not stay in one spot while I sleep. I have a full face mask (breathing only through my mouth was too much thinking for me to even get any sleep) so mine slides all around. Since you are on twitter (I think half the things I follow are related to sleep apnea) - I would recommend following @remzzzs because he has had a sample deal of his product and hopefully he'll do another one soon(he also has good articles). I've been trying it this week, and it makes the mask more comfortable (its like cloth), and cuts back on those annoying leaks (I hate when it hits your eye in such a way while sleeping!). There's a sample pack for I believe $6. Perhaps see if you can try a different mask too. Since you've only had a week, they might have some kind of exchange program.

I think it is like smelling your room for the first time in days when you take the mask off. Although depending on my how my dogs smell that morning decides if it will be a sweet smell or not hah. I think the pure smell of the water and air thats blocking all other smells for so long cause some kind of *ahhh* moment when you can actually smell something other than the inside of your mask.

I use my humidifier every night, but my nose is usually very dry. I have had to replace a humidifier already because the heating plate was not working on my first (I've had my machine for only a month). When the humidifier was out I couldn't use my machine because my throat was very dried out. I think this is more of a personal choice, and depends on your mask, and if you have a dry throat/nose. I always use the distilled water. My mom has a CPAP machine as well and found about how much hers uses every night, and fills it just above that line (that way she doesn't need to empty and refill every night).

As far as it getting better - I'm still waiting. I've had mine for about a month, and I'm still very tired. I'm trying to force myself into a sleeping pattern, but its harder than I thought it would be since I'm so used to running on 5-6 hours of sleep. I have mild apnea too - I stop breathing about 7 times per hour - and I agree, I thought that was extreme. My mom doesn't stop breathing as many times, but her oxygen drops much lower than mine, so hers is considered as severe. I think in addition to the machine, you have to work on sleep patterns and getting used to the machine. Congrats on making it 6 hours! I can say after a month, it gets easier! Good luck! There's tons of great info out there

Some more twitter people (it is follow Friday after all): @sleepfoundation
@SleepBetterTips
@SleepConcierge has some good tips, even though they are a hotel they have all kinds of info
@cpapman

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Permalink Reply by Lisa Marie Cardillo on May 29, 2009 at 2:46pm

Hello Debbie, I smell a smell too, it must be our bedrooms. lol Lisa

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Permalink Reply by Debbie Bray on May 29, 2009 at 5:43pm

LOL. Our it's just US!!! Sweet as the month of May!

Thanks to everyone for your input. Keep it coming! I am feeling better by the minute with your encouragement!

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Permalink Reply by Mike on May 31, 2009 at 8:08am

Good to see you here! I second the thoughts of the others, and wanted to ask how symptomatic you were to begin with. In other words, with mild sleep apnea, sometimes there aren't symptoms like daytime sleepiness. So if you didn't have symptoms to begin with, doubtful the cpap will make you feel much different. That doesn't mean it's not helping you on a physiological level, though. It is. Also, sleep apnea is a chronic, degenerative disorder -- gets worse over time as we age. So what's mild sleep apnea now, will become moderate and maybe even severe down the road. But like you said, stopping breathing even "only" 13 times an hour is a BIG problem. Not a MILD problem. Good on you for taking control over your health and using the CPAP.

On the humidifier, I change out the water ever day. Otherwise, you have a petri dish of bacteria growing in there. and no, i don't ALWAYS use distilled water (when i travel, and have nothing else, i may succumb to bottled mineral water). that said, i ALWAYS should. Otherwise, it's risky -- heaven only knows what chemicals are getting into your respiratory system that don't belong there from local tap water.

And me too on the sweet scent after taking the mask off. have no idea what it is.

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Permalink Reply by Dan Lyons on May 31, 2009 at 9:54am

Debbie,

Your mask may loosen up during the night because your body is redistributing the fluids in the body tissues, like a sponge drying out.

The sweet scent you may be detecting may be a symptom of something else. Fruity breath odor results from respiratory elimination of excess acetone. This may be a sign of ketoacidosis (http://www.wrongdiagnosis.com/d/diabetic_ketoacidosis/book-diseases...)

I only use distilled water in my humidifier, even when I travel. If you know a plumber, get them to show you an old element that they have removed from a hot water heater. I can assure you, you will never use anything but distilled water again. Bottled water is as just as bad as tap water. In fact, the majority of bottled water is normal tap water that the bottler has just run through a filtering process and then placed in a plastic bottle.

I never change my water reservoir unless I am cleaning the unit. I have never seen the need if I am using distilled water.

It does get better. Keep in mind your DME set you up in 30 minutes to 1 hour and then shooed you out the door as if you were a pro. This basically left you to figure out the idiosyncrasies all by yourself. Isn't it fun? So nice to know they cared – about your money only.

Trial and error, and, oh yea, help from people like those on sleepguide.com .

IT WILL ALL COME TOGETHER.

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