A couple questions from a beginner

I've been doing a lot of reading here and have found a lot of good information; thanks to all for your contributions. I have a couple questions about my CPAP therapy, and I'm hoping for some advice and encouragement.

I did a sleep study and was prescribed a machine set at 12cm. The DME gave me a APAP machine with C-Flex, set to a range of 7-20cm. They also gave me a CL2 mask with all three types of masks.

I'm currently in my 4th week of using the machine, and I've tried all three masks, finding the direct seal the most comfortable, but they all start leaking when my machine gets up to about 12 or 13 cm. This wakes me up, I can't fall back asleep, etc., etc. I know many of you have been in the same place.

Finally, last night, I've reached my breaking point. After waking with leaks every 30 minutes for the first two hours of the night, I took off the mask and gave up. At this point, I'm thinking of switching to a nasal mask or giving up entirely.

Question 1: Has anybody successfully made the switch from nasal pillows to a mask? Can you give me some advice about where to look next? I like the CL2, but it just will not seal well at higher pressures.

Question 2: Should I be concerned that my machine is going as high as 16 or 17cm during the night? Last night, when the leaking direct seals woke me up, my machine was at 17cm.

Any help or advice is greatly appreciated. I really need this therapy, but I cannot function getting 2-3 hours of sleep per night and am ready to give up.

Giving up is not allowed.

I had a similar experience when I started with a full face mask. The leaks were making me nuts.
Switching to the Swift made a HUGE difference, but I still had some leak problems - the barrel wouldn't stay rotated in the correct position.

The Nasalaire 2 and Headrest made all the difference for me. They don't leak! (at least not on this face).
I almost didn't believe the Headrest would make such a difference, but I trusted the folks who were saying it was great. And it is.

I was happier once I realized that I'd just have to keep investing in masks til I found the right one(s). Small price to pay given the difference in how I feel with a good night's sleep.

Spending the $ was a leap of faith for me. When I was growing up, a quarter was a LOT of money. When I put "mask cost" into perspective compared to say,hobbies, groceries, concert tickets, it's pretty reasonable.

And if one is strapped for cash, there are folks on the list who will loan masks to try.

Shari

I switch back and forth all the time.

The ComfortLite 2 is a fine system. However, I find it to be too loose, there is too much play (wiggle) in the parts. The components can be firmed up by using shims, rubberbands, pantyhose, chinstraps, springs or a combination of these. When first using this system there seems to be a tendancy to tighten the straps too much, which causes the cranial plate to ride up.

My most used interface has been the ResMed Activa. If you try this one, the straps should be very slack before you pressure up.

Welcome to the forum, DoubleTap!

In the meantime while searching for a new mask...you might try the "tights" fix, to see if that helps keep your mask in place. It sounds like you've done some reading already, but if you search for "tights", you should be able to see some pictures posted by RestedGal. I'm sorry I am not very computer savvy, or I could post the link.....I will look and see if I can find and post.

I would suspect that your pressure is going up to 16 or 17 because of the leaks. Also, have you read about mouth taping or poligrip-strips on here?

Best wishes, and don't give up...it all takes some tweaking up front, and is well worth the time!

Thanks to everybody for the suggestions. I'm going to order a couple more masks, with return insurance, and see how those work.

Set your machine to straight CPAP with your Rx pressure of 12cm and get you a nasal pillow mask. Make sure your mouth isn't leaking and you are set to go. I sleep like that every night and I'm sure you can to.

I switched my APAP to CPAP mode and have slept better since. Some of us are awakened by the pressure changes and unless you try it on a single pressure, you'll never know what that is like.

Good luck


JeffH

JeffH wrote:Set your machine to straight CPAP with your Rx pressure of 12cm and get you a nasal pillow mask. Make sure your mouth isn't leaking and you are set to go. I sleep like that every night and I'm sure you can to.

I switched my APAP to CPAP mode and have slept better since. Some of us are awakened by the pressure changes and unless you try it on a single pressure, you'll never know what that is like.

Good luck


JeffH

Ditto!

If you do NOT have the software to monitor your nightly data from the Auto, you're just taking a "shot in the dark".
With single pressure, at least you can see some relevant numbers (at least in the ballpark).

Have you checked out CPAP.COM's mask fitting guide.....not all masks are meant for all users.......or, not all nares were created equal.

Den

DoubleTap:

First, welcome aboard. Your experience is not all that unusual, and you've come to the right place for help.

Please take a minute and fill in your profile so that folks won't keep having to ask which machine you have, etc.

My first reaction to your machine pressure setting was, "Why so wide?" If you've got a titrated pressure of 12, I'd think they'd narrow it up for you. When I was playing around with APAP, I had the lower end 2 CM below the prescribed pressure and the upper end about 3 CM above. The challenge if the low end is too low, the machine takes too long to adjust the pressure up to an effective level when it notices an event, and if the high end is too high, it gets carried away trying to accommodate any leaks.

Leak control is the first priority, and you're already working on that.

You're fortunate in getting an APAP. Presumably it's data capable. I'm not aware of any which are not. You should consider getting the necessary software to monitor your performance if you're going to become one of us who are eager to be involved with managing our own therapy. You don't really need the software to control the machine, but if you don't have a way to monitor your performance, you're flying blind.

Did your doc or DME give you a reason for setting the machine to APAP? If not, using it in CPAP at the prescribed setting until you get the leaks worked out seems reasonable to me. At least it wouldn't run away with you during a large leak.

Then you could go back to APAP to narrow the range and fine tune the pressures. What I wound up with after a lot of fiddling around was about half a CM higher than the sleep test, but based on several months of data, not one night in a very foreign setting.

Stick with us! This therapy works, if you work at it.

It's funny but the fitting guide didn't suggest the Resmed Activa for me - and that is the mask I am using - it fits perfectly and doesn't leak.

I was titrated at 13 cm. I have a similar problem with leaking above about 12 cm. For me, going to the Auto helped tremendously with this problem.

I’m now using a range of 10 cm to 14 cm. I spend 70% of my time at 10 cm, which I find very comfortable with no leaks. I rarely get to 13 or 14. (I’ve been thinking of re-setting to a range of 10-13 cm.) My 90% pressure is usually at 12 cm, sometimes 11 cm.

If you were titrated at 12 cm, you should not be using an auto that could go to 20 cm. (Pressure much above 12 should never be necessary for you and pressure near 20 cm could possibly cause you to have central apneas.)

I suggest:

You reset your machine to 12 cm or a narrower range, say 9 or 10 cm to 12 or 13 cm.

If you can get the software for your machine, it can help you better know what is happening and make more helpful adjustments in you machine.

Wayne

The mask pictured here is the Headrest by Aeiomed. However the suggested placements for "extra straps" are what I do with the ComfortLite 2, too:



An extra strap or two doesn't have to be snug at all...just "being there" is kind'a like pressing your fingers lightly against the front of a mask. Will steady the mask and stop a leak.

I wouldn't be able to wear either the Headrest or the ComfortLite 2 without adding an extra strap or two to keep the nasal pillows (or whatever assembly I choose to use with the CL2) steadily in place during toss 'n turn sleeping.

Best way to tie a strap made from the leg cut off a pair of tights is with this kind of knot...stays very flat and is easy to undo:

http://www.fieggen.com/shoelace/doublestartknot.htm

Check out the "Lab Rat" fixes for the ComfortLite 2:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

And...ways to hang the main air hose to keep it from tugging at most any mask's headgear:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

Discussions about the ComfortLite 2 and several other masks:
LINKS to MASKS - nasal mask, nasal pillows, nasal prongs
viewtopic.php?p=35286

I never could get comfortable with the CL2. Try another mask.

I've found the Nasal Aire II to be the most comfortable mask I've ever tried.

cpaptalk.com/viewtopic/t23207/Babettes-Nasal-Aire-II-Tip-Sheet.html?sid=59cf82bc07933911fe1cca0d3c3b76bc

Good luck!
Barbara

DoubleTap:

You've got Rested Gal and Babette both giving advice. You're in REALLY good hands now!!