Replies to This Discussion

Permalink Reply by Margaret Parker on February 26, 2010 at 10:23pm

Hi don't give up it gets easier. I use a ZZZ mask full face, and I sleep on my side and on my back and just about any way I want to. I have learned to lay my head different ways on my pillow and that also helps about leaks. I like the head gear with this mask it just seems to adjust to my head better. Plus it doesn't have that piece at the top of the nose on fore head. That alway made pus bumps come up (really big ones). If you have some one that can help you adjust the mask and head gear it helps. When I try to do it myself my hair gets all tied up in it. Good luck

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Permalink Reply by 99 on February 27, 2010 at 9:17am

the only thing i can add to that is to photo copy some of the major items like your script and if you can get away with it keep the script and give the photo copy to whoever you are dealing with

Judy said:

Wellllll, I've been thru at least a dozen masks. Out of that dozen I have found TWO that I like and are comfortable. BOTH I had to do some easy "lab-ratting" w/the headgear as both headgear were too large for me. I've had little experience w/nasal pillows so my suggestions are pretty much geared towards full face and nasal cushion masks

Ayr Saline Nasal Gel or Spray or both are GREAT for soothing dry irritated nasal passages and sore bottom of the nose PLUS the Ayr Saline Nasal Gel does dry a LITTLE sticky, not much, no mess on mask or face, but it does help the seal around the bottom of the nose.

Mack's SILICONE Ear Plugs (NOT wax, silicone) make a good seal. Take one or a half of one, roll it in the palms of your hands to form a tape or rope and lay that on your mask.

As long as a minor leak isn't irritating you and disrupting or delaying your falling asleep it is of NO CONSEQUENCE. I was surprised to realize that when using the Mask Fit feature on my Resmed xPAP.

I agree w/Samuel and have found the same as he had, sometimes a leak on one side just requires a turning or adjustment on the opposite side.

ALWAYS fit your mask laying down with your xPAP turned on to your set pressure or 10 cms. Facial tissue is subject to the law of gravity every bit as much as anything else in this world.

Often loosening the top straps and tightening the bottom straps will eliminate the leaks around the eyes.

Running your fingertip (or a Q-tip) along the seamline between mask and facial skin will eliminate or greatly reduce mask Leaks.

The PoliDent Denture Cream works welll to seal your LIPS shut if your "mouth" leaks are due to air escaping between your lips rather than actual open mouth, jaw dropping, breathing.

Hanging your hose ABOVE your head on the headboard of your bed or the wall will reduce or eliminate the hose tugging on your mask and causing leaks and discomfort, especially the discomfort at the bridge of the nose.

Karen (Padacheeks) makes some EXCELLENT, reasonably priced, SOFT, comfortable padding for straps and the nose bridge, etc. She is a registered member here or you can find her website w/a google search on Padacheeks.

I would suggest that you request a copy of ALL of the following:
1] the doctor's dictated results from EVERY in-lab sleep evaluation AND titration PSG you've had (usually 1-2 pages each)
2] the full scored data summary report w/condensed graphs from EVERY in-lab sleep evaluation AND titration PSG you've had (usually 5+ pages each)
3] your equipment order (script) and EVERY script change that has been ordered
4] every download of data from your xPAP if it is fully data capable
5] if your xPAP is NOT fully data capable, i.e. capable of providing Leak, AI and AHI data, INSIST on being provided PERMANENTLY w/a fully data capable xPAP

There may well be clues in those reports and downloads to easing your acclimation to xPAP therapy and to your success w/xPAP therapy. It is VERY SELDOM you can rely on your sleep doctor or DME provider's RRT for support, advice and assistance.

YOU are the one paying for this equipment, whether thru insurance or out of pocket is immaterial, YOU are still the one paying for it. It is YOUR health, YOUR sleep, YOUR therapy.

I could almost be a poster child for xPAP therapy and the trials and tribulations of CPAP therapy. Some due to my own stubborness and frustration w/the sleep profession I will readily admit. I sometimes get a bit stiff-necked and don't contact my "professionals" when I should. But then I can't say that any of my local "professionals" have been any too impressive either. And some of it has been due to my having COPD and its progression. I credit most all of my success/successes to the members, both patients and professionals, in these sleep apnea support forums. And those here are especially wonderful.
.

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Permalink Reply by amott1973 on February 27, 2010 at 11:06pm

wow, there's so much here already I'm not sure I can add anything!

I came to cpap after my stepmother in law and father in law were diagnosed with sleep apnea. My stepMIL had a really hard time finding a mask that worked for her, but persevered and really noticed a huge benefit to cpap, so I was kind of prepared to have to work hard to find the right fit for me from the beginning.

When I first started I thought a nasal mask would work for me, maybe with a chinstrap. But as soon as I had it strapped on and turned on I knew that wasn't going to work. Nasal masks hit right on some pressure point on my face over my sinus on each side of my nose and just hurt! So I was given the original Swift nasal pillow mask to try. That worked much better for me. I later tried the optilife and the breeze, but neither worked as well for me, even though they are both nasal pillow masks too. I guess we all just have such different head shapes, nose shapes, chin shapes, and then the proportions of all our features is so different too. It can be really hard to find what fits you best.

I've been pretty satisfied though with the Swift models, and I have to say they keep getting better! I've had the original, the Swift II, the Swift LT and now have the new Swift FX. So far I like each one better than the last.

My real battle over the last year has actually been with getting my pressure set right. First I'd gained weight and really needed a higher pressure. Found that out because I'd started snoring with my mask on! After a second titration, which I'd done reclining due to a bad cold, they actually suggested my pressure was too high. Turns out I only need a pressure of 8 if I'm reclining, but if I'm lying down I needed about a 12! I didn't expect that. Then I lost 40 pounds and had to lower my pressure to about a 9.5. Now I'm pregnant and have gained back the 40 and am back up to a 12. I would love to have an APAP that would let me set a range and could adapt better to my changing needs, especially one that could give me data! But it's so hard to get the DME and insurance to cover it. Gearing up actually to restart that fight. I haven't fought it for a few months now.

Anyway, I guess my point is the same as most, it really will be up to you to find out what's working for you, what isn't working and to get the DME and sleep docs to listen to what you're telling them. It sounds like you might have a responsive DME which is great! The one I used to have was great, but then insurance switched us to a new company that pretty much stinks. lol. It's always something.

Keep on trying though! Every hour you sleep with cpap working is a true hour of sleep and totally helps! You'll get to the point where you'll be sleeping on it all night and you'll feel so much better!

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Permalink Reply by vashti ramdial on February 27, 2010 at 11:51pm

I have been snoring as a child, 4 years ago I was diagnose with sleep apnea, I was given a full face mask first because I slept with my mouth opened, but was having leakage on the cheek just under the eyes, then I changed to the nasal mask, and it was still leaking, I now have the nasal pillow and its working great, I used to think something was wrong with me, I had no idea that it was a miss and hit event to get the perfect mask until I found this site 30 minutes ago, thank my lucky stars that I found my perfect mask, so please don't give up, keep on trying until you find your perfect mask, I know there is one out there for you, its only to find it, good luck. Vashti

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Permalink Reply by Sonia S. on February 28, 2010 at 12:38pm

Hi Wendy,

I'm glad you've found the best mask for you. Can you tell me how you stop your mouth from opening while you sleep? My mouth opens also when I sleep, so I believe that a full or an all face mask would work best for me since I have very little confidence on chin straps (from what I've heard from most users and because I don't think I could stand wearing more straps to my head).

Thanks,
Sonia

wendy mangra said:

I have been snoring as a child, 4 years ago I was diagnose with sleep apnea, I was given a full face mask first because I slept with my mouth opened, but was having leakage on the cheek just under the eyes, then I changed to the nasal mask, and it was still leaking, I now have the nasal pillow and its working great, I used to think something was wrong with me, I had no idea that it was a miss and hit event to get the perfect mask until I found this site 30 minutes ago, thank my lucky stars that I found my perfect mask, so please don't give up, keep on trying until you find your perfect mask, I know there is one out there for you, its only to find it, good luck. Vashti

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Permalink Reply by Ross Plotkin on March 1, 2010 at 4:49pm

Just wanted to again thank everyone for sharing their stories, and their victories. I've re-read this thread about a dozen times today during work, and am really trying to keep the positive zeitgeist all around me. There aren't many people who seem to get a perfect fit and adapt to their new situation immediately; or, at least, enough people have had struggles similar to mine that I know there's a solution afoot. That's invaluable!

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Permalink Reply by vashti ramdial on March 1, 2010 at 10:53pm

Hi Sonia.
The nasal pillow rest between the upper lip and nostrils, so the pressure from the nasal pillow on the upper lip keeps the mouth closed, I hope I have answered your question, it took me 4 years to find my perfect mask, I went on for months not using my machine because of all the frustrations, complications and discomfort, but now I am very rested, I have had this machine and mask a little under a year.
Sonia S. said:

Hi Wendy,

I'm glad you've found the best mask for you. Can you tell me how you stop your mouth from opening while you sleep? My mouth opens also when I sleep, so I believe that a full or an all face mask would work best for me since I have very little confidence on chin straps (from what I've heard from most users and because I don't think I could stand wearing more straps to my head).

Thanks,
Sonia

wendy mangra said:

I have been snoring as a child, 4 years ago I was diagnose with sleep apnea, I was given a full face mask first because I slept with my mouth opened, but was having leakage on the cheek just under the eyes, then I changed to the nasal mask, and it was still leaking, I now have the nasal pillow and its working great, I used to think something was wrong with me, I had no idea that it was a miss and hit event to get the perfect mask until I found this site 30 minutes ago, thank my lucky stars that I found my perfect mask, so please don't give up, keep on trying until you find your perfect mask, I know there is one out there for you, its only to find it, good luck. Vashti

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Permalink Reply by vashti ramdial on March 1, 2010 at 10:58pm

Hi Ross
Its like you go have your sleep study, and one says anything about the bumpy road ahead, it took me about 3 years before I got my perfect machine and mask, so don't give up, keep trying, you will get there.

Ross Plotkin said:

Just wanted to again thank everyone for sharing their stories, and their victories. I've re-read this thread about a dozen times today during work, and am really trying to keep the positive zeitgeist all around me. There aren't many people who seem to get a perfect fit and adapt to their new situation immediately; or, at least, enough people have had struggles similar to mine that I know there's a solution afoot. That's invaluable!

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Permalink Reply by KAREN JAFFE on March 2, 2010 at 8:28pm

Hi Ross, One thing I have found to help stop mask leakage are the Remzzzs CPAP mask liners. They also make my mask more comfortable to wear. My mask used to leak so much, I would get up in the morning with swollen eyes. This has not happened since I started using them 6 months ago. There website is www.remzzzs.com. Hang in there, it will get better.

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Permalink Reply by Ross Plotkin on March 3, 2010 at 4:41pm

This is really useful. I wish they made liners for either the Comfort Lite 2 or the Mirage Vista, though. I have a feeling I will be using something from this website eventually, though; so thanks so much, Karen.

KAREN JAFFE said:

Hi Ross, One thing I have found to help stop mask leakage are the Remzzzs CPAP mask liners. They also make my mask more comfortable to wear. My mask used to leak so much, I would get up in the morning with swollen eyes. This has not happened since I started using them 6 months ago. There website is www.remzzzs.com. Hang in there, it will get better.

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