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Permalink Reply by Judy on March 11, 2012 at 5:37pm

Lisa, which brand and model APAP are you using? I understand the new Resmed S9s don't report the Leak rate on the LED screen in the same way as they used to and the RP S1s have a REAL half-arse way of reporting leaks via the LCD screen now. Now you REALLY do need to see the data printout, especially the graphs, to have any real idea of your leaks.

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Permalink Reply by Lisa on March 11, 2012 at 11:12pm

Thanks Judy! my Phillips Respironics REMstar Auto A-flex was recently converted to the A Pap function. I have an "at home" appointment visit set this Tue. for my RT to come by. but honestly I don't know what to even do at this point :(  I have 2 masks I have switched back and forth. I asked for a print out of the 2 day period with the new mask, but not enough data to know what is going on. The report definitely paints a different picture than what I am experiencing, especially the total of 0 leaks.  Wish I could figure out how to stop the leaks and get a good nights sleep. It's so exhausting.. but I am not giving up, I will keep at it :)  thank you for any info you can share, I appreciate it SO much.

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Permalink Reply by Lisa on March 11, 2012 at 11:13pm

My ENT office says I may need a different machine, but not sure what is best for someone in my situation?? 

Lisa said:

Thanks Judy! my Phillips Respironics REMstar Auto A-flex was recently converted to the A Pap function. I have an "at home" appointment visit set this Tue. for my RT to come by. but honestly I don't know what to even do at this point :(  I have 2 masks I have switched back and forth. I asked for a print out of the 2 day period with the new mask, but not enough data to know what is going on. The report definitely paints a different picture than what I am experiencing, especially the total of 0 leaks.  Wish I could figure out how to stop the leaks and get a good nights sleep. It's so exhausting.. but I am not giving up, I will keep at it :)  thank you for any info you can share, I appreciate it SO much.

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Permalink Reply by Terry Vella on March 12, 2012 at 12:23am

Lisa, I use a Resmed S9 Autoset so it's a different brand but basically they all do the same, blow air. The auto's don't go back to the lowest settings straight away after the reach a high. they do take a while because they have to make should your apnea's are fixed. I thought it would when I changed mine from continuous. You still may have a problem with your machine so it is good that someone is coming to look at it. Re the leaks, could you tell us which mask you are using and where the leaks are i.e. mouth or nose into the eyes. First get the liners, these should help, second do you have the hose coming from abouve your head? Third depending on the mask try tightening just the head straps a little and if you have a dial on the bridge of your nose change the settings and see how you go. I hate to say it because I didn't like it but it is trial and error unfortunately. You will get it eventually, once you get everything right try to stick to it and don't make any changes, let us know how you go.
Aat least you have a positive attitude to use it which is half the battle.

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Permalink Reply by Mary Z on March 12, 2012 at 8:37am

Lisa, Terry gave good advice about adjusting the mask.  Also, you may not have found the right mask yet.  Don't confuse air from the exhalation ports on the front of the mask with leaks.  There will always be exhaled air and CPAP air (for instance when you're exhaling the CPAP pressure, some of it, goes out the exhalation ports.  There are basically three modes of operation with a 'PAP.  Straight CPAP gives a constant pressure, Bilevel (or BiPAP) give a lower exhalation pressure and a higher inspiratory pressure so the doc prescribes a low and high  number.  In Auto a range of pressures is ordered- say 4 for the low pressure and 10 for the high pressure (they could be any  range)  The machine will sense you had an apnea and a breath or two later will ramp up the pressure a little at a time ( up to the top number)until it stops the apneas and then it will revert to a lower pressure.  There is a newer  machine, and here the names get very confusing, but it's an ASV machine.  Automatic servo ventilation.  It's very expensive and the software much more sophisticated.  I won't try to explain it here, but your doctor would have to prescribe this machine, or any machine based upon your needs.  Often it's a comfort decision, but some machines work better than others for some people.  I'm not sure what the ENT meant, is he a sleep specialist?

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Permalink Reply by Lisa on March 12, 2012 at 10:54am

Good Morning & Thank you all SO much for your input :)  I'm so glad I found this site!!  I have two masks I am using and switching off to see which one will work best with the A Pap function.

 

ResMed Quattro FX Small Full Face leaks a lot at the top and wakes me up approx. every hour or two. It is small and the med supply says it is one that doesn't handle high pressure well.

&

ResMed Mirage Quattro Small Full Face I switched to last night, and I think it may work better, it has the knob on the head and with both masks I just keep adjusting until I figure it out. This one leaks more around the chin then sometimes at the top of my nose.

I also bought the C Pap Pillow that holds the hose closer to the pillow and I try to keep it up top, but this I think has helped a lot.  there is so much going on with all of this, it's hard to know what works, but when it works I make sure I keep it there, until it starts leaking again lol :)

I was wondering if I should still have the RT come to the house and test the machine and maybe help me fit the masks in my own enviroment laying down on my new pillow? Or is this something that is normal and that people do?

I really also wonder about this mask and think "maybe" it might help with leaks??? "ResMed Mirage Liberty Oral and Nasal CPAP mask provides the feel and functionality of a full face mask without the size, restraint or leakage found with some traditional full face CPAP masks. To improve patient comfort and compliance, the Liberty CPAP mask includes three sizes of nasal pillows and a small or large oral cushion, allowing the user to select the best fitting sizes at home."

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Permalink Reply by ZolliStar on March 12, 2012 at 11:34am

     Thanks to this site, I learned about Cpap Library. It allows one to try out a new mask for one week. Total cost ([payable in advance) is $14 for shipping both ways. The library may prove to be a really help to you until you find a mask that suits you best. Here's the link: http://www.cpaplibrary.com/index.html

 

     I'm expecting a full face mask from the library -- the one Mary said she likes -- and will try it for a week. If I like it, when my next mask is due, I'll order one. (I worry about having a really bad cold and badly stuffed nose. I suspect that a FFM will be the ticket for this situation and want to have one on hand since, under no circumstances, would I dare to sleep without using my CPAP machine.)

     In the reviews at www.cpap.com, people often say that they finally found "the" mask that really works for them. Maybe that will happen to me but, for the record, I switch around from mask to mask. For the past few nights, for example, I've gone back to using my originally prescribed low-cost nasal mask instead of the nasal pillow masks (I have two different ones) that I also use. I also bought the SleepWeaver mask that I also like. A new, improved one is now available. In due time, I'll buy it. http://www.cpap.com/productpage/sleepweaver-advance-improved-zzzeph...

 

      The truth? I like all my masks, every single one. I'm a newbie (diagnosed in June, 2011) so maybe "the" mask that I'll really, really like, even love, is still in my future. Meanwhile, I'll just keep "dating" different masks until I truly fall in love.

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Permalink Reply by Terry Vella on March 12, 2012 at 6:33pm

Lisa, I use the ResMed Mirage Quattro large Full Face with the leaks out the chin, I still use a chin strap not only to keep my mouth closed but it seems to help with the leaks. I put my mask on first then the chin strap, others recommend the other way around. I found adjusting the dial helped it depends on the type of face you have, start about half way out then bring it in 3 notches at a time. With all masks, all companies tell you they are great with limited leaks but that's not excatly right it all depends on the shape of your face.

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