Replies to This Discussion

Permalink Reply by JanSaysHello on February 25, 2010 at 3:02pm

I use a CPAP nasal cushion (you can purchase it separately for about $20) which should add just enough cushioning to fill in the gap around the bridge of your nose and below your eyes.
I hope this helps. Keep trying! and Good Luck!.

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Permalink Reply by birdshell on February 25, 2010 at 3:54pm

I think that this is the Comfort Care Sleep Comfort Care Pad, "a silicone pad for nasal masks." I happen to have read a review on SleepGuide somewhere, I believe. I only have used nasal pillows masks, so I cannot comment on it, but you need the name of it to find it!!!

Karen

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Permalink Reply by birdshell on February 25, 2010 at 4:20pm

I have used CPAP for about 4-5 years...I cannot even remember which. I would NEVER sleep without my CPAP and mask.


The SINGLE most important factor in adapting and using CPAP successfully is the DETERMINATION to make ait a success, IMHO. Trying everything, and knowing that the mask is of primary importance in the beginning, is important.


1. Many of us struggle with masks, and I wore 9 different ones in the beginning. I only took off the mask a couple of times. If you are taking off the mask, something about it is bothering you.

a. Are you using a ramp feature? Maybe shortening it or eliminating it will help you to breathe better.

b. Is your machine an APAP, and is it set at 4-20? This is the default setting for many APAP's and 4 makes me feel like I am suffocating. If this is true, get the doctor/DME provider/RT/RPSGT-sleep tech help to reevaluate that.

c. Is the mask tickling your face? When I first started to wear glasses, my nose tickled/itched where the glasses touched. The same thing has happened with my first masks, and new ones. This went away during the first few days to a week, so maybe your idea of wearing the mask a bit during the day would help with this problem.

d. Adjust the mask lying down. That is how you intend to wear it, isn't it? This makes a lot of difference, and it should be done for any mask fitting...but usually is not.

e. If you are mouth breathing, it is possible that your pressure is incorrect. I had a rather short titration time, with only one full sleep cycle. It turns out that with proper pressure, I am NOT a mouth breather!!!!

f. Some other factor may be present. At one year, I had another sleep study and was diagnosed with periodic limb movement disorder (PLMD). I now take Mirapex, and it really does make a difference for me. This is not to suggest that you have PLMD, but rather that there can be another factor entering the equation. Maybe looking at the overall picture again is at least a partial solution.


2. Sometimes the newer ones are more exciting to see work, figuring that newer means they are better. Not always, and that is why some of them have been around for a long time. Consider all kinds and types and ages of design if you are not finding the newest materials to be working. I don't find the several newer ResMed masks that I have tried to be the best for me, although I wore the Liberty for 2 years.

3. I can almost never wear a mask successfully without tying an additional strap or two, usually made out of microfiber tights' leg(s), around the mask. BE SURE TO KEEP THE EXHAUST HOLES CLEAR!!! I use a flat knot, like a beginning of tying a shoe lace, and never find it to be too bumpy!

4. A night with a bad mask, or a night with a partial use of CPAP is better than none. You can do it if you are totally determined! I use CPAP whenever possible, even if sick. A lot of us keep a full-face mask for use especially during the occasional illness. Many insurance companies consider using the CPAP for 4 hours per night is considered being compliant!!! Amazing, in a way, but true.

Best wishes, and maybe if you have a plain old CPAP, a loaner APAP with data capabilities would reveal something for you. You could ask your doctor about this option...but keep up the communication with all of your sleep professionals. If we do not go back and tell them what is happening, they cannot learn from us. Any who do not wish to work with us are not worth their paper certificates, as you can see here.

Keep on trying, keep on coming here, and if you want any tips for the ComfortLite 2 or ComfortLite, I have used both. I used the CL 2 for 1.5 years, so PM me and we will talk more. :D

All the best,
Karen

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Permalink Reply by Karen on February 25, 2010 at 8:50pm

Ross my suggestion as a RT who fits alot of masks would suggest you go back to the DME company where you got your supplies and ask to have an RT fit you to a mask that you get no leakage and feels most comfortable. There are alot of new styles that would be much more comfortable for you. The key to cpap compliancy is a good mask fit. Good Luck and persistance is the key.

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Permalink Reply by Sonia S. on February 25, 2010 at 9:05pm

My first episode of Sleep Apnea that I can remember, woke up suffocating and gasping for breath, was before my mid 20's and I am now 40; I wasn't diagnosed with OSA until less than 2 years ago, so I understand you when you said you haven't had a good night's sleep for 15 years. I was so discouraged with the mask I got, and naively thinking I was stuck with it, I stopped using it after only a couple of months of occasional use. Then I lost over 100 pounds and I thought I would be cured of OSA and would never need to use my CPAP machine again, but apparently I was wrong. For a long while I've felt the same way I did when my OSA was at it's worst, and haven't been able to get much restful sleep. And after a little scare (I fainted for the first time in my life) I decided to start using the CPAP again to sleep.

It's only been a little more than a week since I started to use it again, and the mask feels like such a torture device that I don't think I get more than a few minutes of sleep each night. My mask is too big, bulky and heavy for my face and leaks with every movement I make, it also usually leaves dents, red marks, wrinkles and causes my skin to break out with acne. The first few nights were a total nightmare, then after learning not to put the mask on too tightly it felt a little better, but last night I was having such a hard time falling asleep that this morning I removed the mask and finally fell asleep and slept all morning and afternoon and didn't wake up until the evening (must have really needed the sleep). I know I shouldn't go to sleep without the mask on, but the mask I have it's just not the right one to enable me to get any restful sleep. I currently have the Comfort Full II by Respironics, which to me is big and very uncomfortable, I can't wear my glasses to see when I get out of bed in the middle of the night to go to the bathroom, and I hate the way it makes my face feel squished. I can't use the smaller nasal masks because my mouth opens when I sleep (can't help it, my lower jaw/teeth not aligned with the upper jaw/teeth, and I don't think a chin strap would work from what I heard from the majority of users). Soon I'll be trying to get another sleep study and get a new mask, hoping to try the new all face mask, the Fit Life by Respironics. I also intend to see a nose and throat doctor to check my airway, which I think is too small and constricted (always feels swollen and congested). Also considering having my tonsils removed, they used to be constantly inflamed/irritated when I was little, giving me chronic cough, and probably should have been removed then. Been thinking of other ways to improve my breathing and so far have come up with a couple of things: 1 learn to breathe properly, maybe with yoga, and 2 stop eating milk (milk can make you feel more congestion by thickening phlem), so might switch to soy milk. I also stop drinking a cup of coffee in the evenings and am considering not drinking one in the morning or switching to decaf.

Anways, I am very sorry you're having such a hard time finding the right mask for you. Please don't give up. You have tried 4 mask, please try a few more until you get the best one for you. I read here that someone had tried about a dozen masks before they found the best one for them. And you might try to do other changes that might help you sleep better. If you need to change your eating habit and maybe lose a few pounds, please try to. Make sure you're not nutritionally deficient, eat healthy and take nutritional supplements. Don't eat too close to bed time (I eat a small snack about 2 hours before I go to bed). And try to go to sleep every night at the same time and make your bed room and bed a very comfortable place to sleep in. Use very comfortable head pillows (I'm thinking of buying the very expensive one Mike uses - the Oxygen pillow). Keep your mask and accessories clean. Don't do anything too arousing or stressful before bed (like arguing or worry about bills or work, or watching an action movie). If you need to relax before bed, maybe listening to classical music or reading could help, or a warm bath or shower and a cup of relaxing Camomile tea. I know non of these suggestions will help you find the right mask for you, but I hope that at least it will encourage you some, at least not to give up and to keep trying. Please don't let yourself become too discourage and give up. You will find the right mask for you if you continue to try. Once you find the right mask for you you will be able to get the good restful sleep you want and need. So don't give up, and whenever you need support you know you have us here to support you, we're here to encourage and help each other. Keep a positive attitude and believe that soon things will be much better for you.

Be well,
Sonia

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Permalink Reply by Ross Plotkin on February 26, 2010 at 9:59am

Again, tremendous thanks to everyone for their continuing help. My attitude seems to be the biggest obstacle, in a sense; but hearing over and over how an upbeat, persistent outlook made everyone's journey more feasible is absolutely invaluable. My graciousness.

I think part of me wants this process to be an absolute science. The ambiguity of it is in some ways the most frustrating element. The earlier post indicating that someone does the precise opposite of what logic would dictate has resonated deeply with me for the last 24 hours. How liberating! I'm a contrarian at heart, and this makes me feel like there is no "proven, right" way to achieve my goals. Everyone's path will be a little different.

I went to buy "tincture of Betadyne" last night, and two pharmacies said they would have to special order it. One chemist also said that it wouldn't provide any sort of "seal," either; it's an antiseptic that would do little more than stain my skin. He recommended I use a liquid bandage instead...but I don't think I want to gunk up my mask with that goo.

I ordered a Comfort Care strip online, also. It should get here early next week.

New York City has been paralyzed by a snowstorm and I'll probably have a lot of time indoors this weekend to practice with masks during daylight hours. I'll keep you all posted.

Warmly,
Ross

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Permalink Reply by susan mccord on February 26, 2010 at 11:25am

AGREE--AGREE--AGREE.....Ross, you don't have to struggle with a leaking mask. Go back to your DME and work with him/her, trying different masks, as many as it takes--you're not alone in this struggle--I promise you!! You're NOT the only one who's gone through a lot of masks. Just press on and continue as long as it takes.

You seem like a very kind, sensitive guy and honestly, it IS hard to keep that attitude in check. It sure has been for me. But actually, the mask business is just an exercise in problem-solving. Keep up the good work on your own behalf. The attitude will improve as you persevere. No one on SG is gonna judge you for having an "attitude"--nearly all of us have been there!!!

I always call you Hercules in my mind, ever since you wrote something about "Herculean" on here!! And I'm gonna continue to think of you that way. You WILL be okay--not "cured", probably, but okay and rested and able to move ahead with your life. Keep the faith!!

Susan McCord :-)

Karen said:

Ross my suggestion as a RT who fits alot of masks would suggest you go back to the DME company where you got your supplies and ask to have an RT fit you to a mask that you get no leakage and feels most comfortable. There are alot of new styles that would be much more comfortable for you. The key to cpap compliancy is a good mask fit. Good Luck and persistance is the key.

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Permalink Reply by susan mccord on February 26, 2010 at 11:42am

Sonia, you have now become the official cheerleader for sleep hygiene and positive mental attitude!!! Seriously, I just LOVE this post!! I wish I could frame it and hang it on my wall.....

Susan McCord :-)

Sonia S. said:

My first episode of Sleep Apnea that I can remember, woke up suffocating and gasping for breath, was before my mid 20's and I am now 40; I wasn't diagnosed with OSA until less than 2 years ago, so I understand you when you said you haven't had a good night's sleep for 15 years. I was so discouraged with the mask I got, and naively thinking I was stuck with it, I stopped using it after only a couple of months of occasional use. Then I lost over 100 pounds and I thought I would be cured of OSA and would never need to use my CPAP machine again, but apparently I was wrong. For a long while I've felt the same way I did when my OSA was at it's worst, and haven't been able to get much restful sleep. And after a little scare (I fainted for the first time in my life) I decided to start using the CPAP again to sleep.

It's only been a little more than a week since I started to use it again, and the mask feels like such a torture device that I don't think I get more than a few minutes of sleep each night. My mask is too big, bulky and heavy for my face and leaks with every movement I make, it also usually leaves dents, red marks, wrinkles and causes my skin to break out with acne. The first few nights were a total nightmare, then after learning not to put the mask on too tightly it felt a little better, but last night I was having such a hard time falling asleep that this morning I removed the mask and finally fell asleep and slept all morning and afternoon and didn't wake up until the evening (must have really needed the sleep). I know I shouldn't go to sleep without the mask on, but the mask I have it's just not the right one to enable me to get any restful sleep. I currently have the Comfort Full II by Respironics, which to me is big and very uncomfortable, I can't wear my glasses to see when I get out of bed in the middle of the night to go to the bathroom, and I hate the way it makes my face feel squished. I can't use the smaller nasal masks because my mouth opens when I sleep (can't help it, my lower jaw/teeth not aligned with the upper jaw/teeth, and I don't think a chin strap would work from what I heard from the majority of users). Soon I'll be trying to get another sleep study and get a new mask, hoping to try the new all face mask, the Fit Life by Respironics. I also intend to see a nose and throat doctor to check my airway, which I think is too small and constricted (always feels swollen and congested). Also considering having my tonsils removed, they used to be constantly inflamed/irritated when I was little, giving me chronic cough, and probably should have been removed then. Been thinking of other ways to improve my breathing and so far have come up with a couple of things: 1 learn to breathe properly, maybe with yoga, and 2 stop eating milk (milk can make you feel more congestion by thickening phlem), so might switch to soy milk. I also stop drinking a cup of coffee in the evenings and am considering not drinking one in the morning or switching to decaf.

Anways, I am very sorry you're having such a hard time finding the right mask for you. Please don't give up. You have tried 4 mask, please try a few more until you get the best one for you. I read here that someone had tried about a dozen masks before they found the best one for them. And you might try to do other changes that might help you sleep better. If you need to change your eating habit and maybe lose a few pounds, please try to. Make sure you're not nutritionally deficient, eat healthy and take nutritional supplements. Don't eat too close to bed time (I eat a small snack about 2 hours before I go to bed). And try to go to sleep every night at the same time and make your bed room and bed a very comfortable place to sleep in. Use very comfortable head pillows (I'm thinking of buying the very expensive one Mike uses - the Oxygen pillow). Keep your mask and accessories clean. Don't do anything too arousing or stressful before bed (like arguing or worry about bills or work, or watching an action movie). If you need to relax before bed, maybe listening to classical music or reading could help, or a warm bath or shower and a cup of relaxing Camomile tea. I know non of these suggestions will help you find the right mask for you, but I hope that at least it will encourage you some, at least not to give up and to keep trying. Please don't let yourself become too discourage and give up. You will find the right mask for you if you continue to try. Once you find the right mask for you you will be able to get the good restful sleep you want and need. So don't give up, and whenever you need support you know you have us here to support you, we're here to encourage and help each other. Keep a positive attitude and believe that soon things will be much better for you.

Be well,
Sonia

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Permalink Reply by Sonia S. on February 26, 2010 at 1:16pm

Aw, Mary, you flatter me. (blushing) :-) I like your post very much too. Seems all your comments that I've read are good and helpful. And I agree with you, it's always important to keep a positive mental attitude.


susan mccord said:

Hi Ross--.....Okay, Hercules!! :-)
#1. You're not being melodramatic. Stop talking to people who say you are.
#2. Your "demands" for a mask that fits well and works for you are not too high. They're common among apnea patients and they're CRITICAL. If you're gonna spend a third of your life wearing the darn thing, which we all are, you have a right, and a responsibility, to find THE very best one for YOU. Period.

(I've been through, I think, 8 different masks since the end of July--some I really liked but they leaked, some I just plain couldn't get comfortable in, and some just sucked in general).

#3. Your plan of trying them out sensibly and methodically makes a LOT of sense to me. I know it's frustrating. It truly is. But the good news is that there ARE a lot of masks available. Even though it's confusing at first, you have tons of options. And you WILL find one that works really well for you.

#4. 'Ya just have to trust your own gut sense of what works and what doesn't and probably isn't going to regardless. I hope you have a good DME who's working with you. That's a top priority for mask-finding. A good DME rep will be as interested in finding one that works well as you are.

#5. I'm REALLY glad you've come to SleepGuide. It's a great place to be!! If it weren't for the people on this site, I'd have been off babbling in a corner a long time ago. You'll get all the support and information you ask for on here, and maybe some you DIDN'T ask for!!

#6. SEE #5.!!!!!

Be gentle with yourself, my friend. You're gonna be okay. And you WILL get some good sleep. It's the process of getting the treatment options dialed in that's so frustrating for some of us.

Stay tuned. There are a LOT of people on SG ready, willing, and able to help you. And you'll have a lot to give back in return. I guarantee it!!

Susan McCord :-)

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Permalink Reply by Judy on February 26, 2010 at 4:15pm

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 Judy on February 26, 2010 at 4:26pm

Whew! All that being said: less is better FOR ME w/xPAP masks so I REALLY like the old Respironics Simplicity simple nasal cushion mask and the ProBasics Zzz-Mask full face mask. Both are lightweight w/little to them and neither has the forehead brace/support, whatever you want to call it.

I DETESTED the original Swift nasal pillows w/that assinine side hose attachment. I rather liked the Swift LT w/the center swivel hose attachment. I also rather liked the Respironics OptiLite nasal pillows which also come w/a nasal "cradle cushion" (a nasal cushion that fits lower on the nose than most nasal cushions). Come to think of it the Simplicity simple nasal cushion also fits lower on the nose. That was one thing I DID like about the Respironics ComfortLite II, it came w/2 sizes of nasal pillows AND 2 sizes of simple nasal cushion and I quickly switched to the nasal cushion rather than the nasal pillows. I used the CL2 longer than any mask EXCEPT my beloved Simplicity and Zzz-Mask.

I did NOT do well w/the Resmed Mirage Quattro or Mirage Micro due to their thin outer cushion cover. I never was able to get that darn thin outer cushon cover to quit SLICING into the skin at the bridge of my nose. I don't even remember the name of the nasal cushion mask I tried that was made out of that thin cushion stuff that stuck out quite a bit and was so flexible it "pumped" up and down w/inspiration and expiration. Maybe if I could have GOTTEN TO SLEEP it would have been alright, but that constant "pumping" drove me wild and I could never get to sleep w/it!

My favorite masks might well be a disaster for you and the mask you finally find as right for you might be an absolutel disaster for me. I'm just sharing MY experiences w/the above masks. YMMV.

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Permalink Reply by Sonia S. on February 26, 2010 at 5:29pm

Judy,
You have provided a wealth of good useful info here.
Thank you,
Sonia

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