Completely Frustrated

[bugaboo628]

I have had my CPAP machine for about 2 weeks. I have missed one day of wearing it (stomach flu). Every morning I wake up with it off of my head, I have tried using gloves to make it hard to get off and have tried taping some of the mask to make it uncomfortable to get off. I am completely frustrated and ready to throw in the towel. I am sick of air blowing into my eye and hearing leaking sounds (the DME provider that fitted me says this is normal for a side-sleeper). I have become anxious before I go to bed and was practically in tears last night because I "know what is coming". Is this going to get better? Any suggestions?

[Wulfman...]

Try to calm down. What you're experiencing is "normal" for most new users. Take one night at a time. It's "baby steps".

Please fill out your equipment profile and include your pressure and humidifier settings.


Welcome to the forum. Keep reading and searching through the archives and the "sticky" posts up near the top.


Den

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[kwikwater]

It's not "normal" at ll for a mask to blow in your eye just because you're on your side!! I'd bet your mask needs better adjustment. That doesn't mean keep tightening it!! They adjusted mine while I was standing up, so needless to say it was WAY wrong when I laid down. The manufacturer's clinical adjustment instructions are available online usually. It surprised me that keeping my first nask mask from blowing in my eyes, was an adjustment to the bootm straps, not the top. Each mask is different, so hopefully you can find yours.

As for side sleeping, when I do it while at least halfway conscious, I found that if I lift my head, turn past where I want to be, then put my head back down and roll to a final position, it helped to secure the mask, rather than loosening it while leaving my head on the pillow.

If you'll add your mask and other equipment to your personal profile, we can help you find the clinical adjustment manual.

[bugaboo628]

It's not "normal" at ll for a mask to blow in your eye just because you're on your side!! I'd bet your mask needs better adjustment. That doesn't mean keep tightening it!! They adjusted mine while I was standing up, so needless to say it was WAY wrong when I laid down. The manufacturer's clinical adjustment instructions are available online usually. It surprised me that keeping my first nask mask from blowing in my eyes, was an adjustment to the bootm straps, not the top. Each mask is different, so hopefully you can find yours.

As for side sleeping, when I do it while at least halfway conscious, I found that if I lift my head, turn past where I want to be, then put my head back down and roll to a final position, it helped to secure the mask, rather than loosening it while leaving my head on the pillow.

If you'll add your mask and other equipment to your personal profile, we can help you find the clinical adjustment manual.

That is exactly what I do, I keep tightening it. Or, I will find a position where I no longer hear the leaking or feel air and try to fall asleep that way. UGH!

I have added all of the information to my profile like has been suggested.

[Wulfman...]

It's not "normal" at ll for a mask to blow in your eye just because you're on your side!! I'd bet your mask needs better adjustment. That doesn't mean keep tightening it!! They adjusted mine while I was standing up, so needless to say it was WAY wrong when I laid down. The manufacturer's clinical adjustment instructions are available online usually. It surprised me that keeping my first nask mask from blowing in my eyes, was an adjustment to the bootm straps, not the top. Each mask is different, so hopefully you can find yours.

As for side sleeping, when I do it while at least halfway conscious, I found that if I lift my head, turn past where I want to be, then put my head back down and roll to a final position, it helped to secure the mask, rather than loosening it while leaving my head on the pillow.

If you'll add your mask and other equipment to your personal profile, we can help you find the clinical adjustment manual.

That is exactly what I do, I keep tightening it. Or, I will find a position where I no longer hear the leaking or feel air and try to fall asleep that way. UGH!

I have added all of the information to my profile like has been suggested.

The only thing that's showing is your mask. Need to see machine and settings.

If you're using a "standard" soft fiberfill pillow that your head sinks into, you would do well to look into a different pillow. Those types of fiberfill pillows can push the mask out of alignment and cause much leaking. There are some pillows that are specifically designed for this therapy and some that work better.

And, yes, this IS "normal" for new users till they get their therapy tweaked and the problems ironed out.


Den

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[teleute]

From my understanding, many masks make their seal by a cushion around the edges that inflates when air enters the mask, creating the seal. So over-tightening masks like this can actually cause the seal to be worse (not to mention your comfort) because the cushion can't inflate properly. I know it seems counter-intuitive, but what if you loosen it?

And yeah - the type/position of your pillow can make a big difference too, as mentioned above.

[Julie]

The Quattro in particular needs to be fitted very carefully by someone knowledgable, and/or by you with the help of the video or pix or whatever they gave you... overtightening is not the answer, really it isn't, but a bit more patience might be. And if that mask isn't for you after a good try, then there are many other masks out there... like mine. It took me a while and some money and patience to find it, and I had lots of 'wrong' ones lying around for a while, but since I got the right one (years ago), I don't think about sleeping with it or anything, just get into bed, throw it on and go to sleep. I have a couple of others (besides a back-up and bag of parts for mine) that are for when I run out of mine for good (or at least some time). They're similar, not perfect, occasionally annoying, but they'll do the job for a while anyhow, at least until I again find the perfect one (I have a lot less money now than I did at the beginning, but it's not the only factor).

[Bill44133]

Also make sure you are washing your face before you go to sleep. That can make the big difference in perfecting the seal.

Good Luck!

[Sclark08]

I use a Quatro mask and I found that firm pillows with rubber filling like tempurpedic material is the best. Your face doesn't sink into it. Put the mask on but make your final adjustment after laying down. I have had almost every full face mask they make and I find the Quatro best for me. No mask will be perfect. Every bodies face and sleeping habits are different. Learn yours and go with that. We were all where you are now. Best of luck

[TCL1962]

I am a complete newbie here so this may be a stupid question, but is there a reason you have to use a full face mask? The reason I ask is because I started with a nasal mask and did so because I thought the nasal pillows felt odd in the two minutes I was able to try them at the sleep study. Then I got a chance to use some overnight and love them.

The mask used to leak when I slept on my side and belly sleep was out of the question. With the pillows, I can do both with very little trouble which allow me to sleep pretty solid. I wake up a few times a night and change positions, but go right back to sleep.

I know some people are mouth breathers, and that may be you, but if you think you could use nasal pillows I would give them a try.

[49er]

I am a complete newbie here so this may be a stupid question, but is there a reason you have to use a full face mask? The reason I ask is because I started with a nasal mask and did so because I thought the nasal pillows felt odd in the two minutes I was able to try them at the sleep study. Then I got a chance to use some overnight and love them.

The mask used to leak when I slept on my side and belly sleep was out of the question. With the pillows, I can do both with very little trouble which allow me to sleep pretty solid. I wake up a few times a night and change positions, but go right back to sleep.

I know some people are mouth breathers, and that may be you, but if you think you could use nasal pillows I would give them a try.

Not a stupid question at all TCL1962 as I was thinking the exact same thing. After thinking I was limited to full face masks due to sinus and nasal issues, I have had the best results with the sleep weaver elan cloth nasal mask.

My advice to any newcomer is to don't assume you're limited to a specific category of masks. And you may find that while many in a specific category don't work well, a few will for various reasons.

49er

[-tim]

The bigger the mask, the less likely it will fit most people properly.

A proper fitting mask will seal with just a small pressure. Take pen and hold it in a finger and thumb below you chin and press the other end on your nose/mask. That is the type of pressure you need for a good fit for a proper fitting mask if you have average strength in your fingers. When you roll over, you may need slightly more force or a headgear that works with you and not against you.

Go back to your DME and find the right fitting mask.

[old dude]

Also make sure you are washing your face before you go to sleep. That can make the big difference in perfecting the seal.

Good Luck!

+1 on this advice.

And equally as important, wash your mask seal every morning when you take it off. Doing these two things is the only shot I have at a decent FFM seal.

[robysue]

I am sick of air blowing into my eye and hearing leaking sounds (the DME provider that fitted me says this is normal for a side-sleeper).

Almost any mask can be made to seal properly even when sleeping on your side. Your profile shows you are using a Quattro FFM. These masks use an air cushion to provide the seal and it is important to fit the mask correctly each night. JanKnitz has an excellent tutorial for how to fit the air cushion FFM on her blog. You should read her entry Taming the Mirage Quattro. In particular she gives specific tips on how to avoid over tightening the straps since over tightening prevents the air cushion from sealing correctly. You may also find that adding a mask liner might help tame the leaks. Or you could also try Padacheek's AntiLeak Strap designed for FFMs.

You should also consider trying a nasal mask or a nasal pillows mask. You may find that you don't do enough mouth breathing to affect your therapy with the smaller nose-only masks. Or you may find that a nasal mask and a chin strap will work sufficiently well.

Finally you can also use a handkerchief or a cloth eyemask to help protect the eyes from the airflow. Even with a well sealed mask, sometimes you notice air blowing into the eye because the exhaust flow from the mask can bounce off the bedcovers or pillow and back towards your eyes. Draping a handkerchief over the eyes is often enough to protect them.

I have become anxious before I go to bed and was practically in tears last night because I "know what is coming". Is this going to get better? Any suggestions?

This was a HUGE problem for me. It was so big of a problem that it triggered a major bout with insomnia that lasted for months. Conquering the dread and anger triggered by "knowing what was coming" took some real effort on my part. And even now, I can't say that I enjoy bedtime the way I used to---preCPAP, but I no longer dread it intensely the way I did for the first year of PAPing.

Some tips on dealing with this problem:

1) Try to relax. (Yes, I know how difficult that is.) The thing is this: For most new PAPers, this kind of anxiousness about the mask does tend to go away on its own in the first couple of weeks or maybe a month. As you get the biggest problems with your therapy worked out, the bedtime anxiety will probably become less and less.

2) If the problem does not go away on its own as you get more experience sleeping with the mask, report it to the sleep doc's office. They probably won't be able to do much for you, but the sleep doc needs to know that you're having trouble with CPAP anxiety that is bad enough to be causing you to have trouble facing bedtime.

3) Try to maintain a regular wake up time and a regular bedtime. But only go to bed when you are really, really sleepy. The less time you spend lying in bed wide awake with the mask on fighting the machine while trying to get to sleep the better. Remember that once you are asleep, most (or all) of the discomfort of the mask goes away because you're not conscious. If the anxiousness and dread is severe enough to make it all but impossible to maintain a regular wake up time and bedtime, then call the doc's office. They'll probably suggest using a prescription sleeping pill for a week or two. If you have no problems with that idea, that may help you in getting over the hump. If you really don't want to take sleeping pills, the sleep doc's office may still be able to provide you with non-drug based help in keeping the bedtime problems from becoming too severe.

4) Try to get all the CPAP-related tasks done well before bedtime so that you don't trigger the anxiety because you still have to put the water in the tank, put the mask together, and put the hose on the machine. If all that's done shortly after supper, then you have a better chance of being able to "just fall into bed" like the old days.

Good luck

[chunkyfrog]

If no one has mentioned it already, mask liners (like Pad-a-Cheek) can save your sanity.
They soften the contact on your face and quiet down the squeaky leakies.