I thought once I got going on this CPAP therapy I'd feel better eventually. I know there are a few people out there who feel better almost immediately. I didn't expect that, but I never thought I'd feel worse than I did b4 I started!!!! How could a severe sleep apnea sufferer become more sleep-deprived than she already was?? I'll tell you how. Trying to sleep with this monstrosity on my face!!!!!
I've come to terms with the fact that I will never again be just a typical person sleeping in bed. I've accepted the fact that I now look like an android and not a woman. It would be worth it if I was actually able to wake up feeling rested for the first time in decades.
I've read this forum for a couple months now. I understand that adjusting to your mask is EVERYTHING. I have to use a full face mask because my nose is stuffed 99% of the time. Yes, I've had the sinus and nasal surgery, yes, I use Flonase, yes, I've done the allergy shots, yes, I've done the nasal washes, the antihistamines, etc. Ok, so I ordered the Ultra Mirage FF because it got the MAJORITY of positive results. Well, not on this face.
I've now ordered the F&P 431 FF even though the MAJORITY dislike it. But I've got to get some sleep! I feel more dead than I've ever felt before in my entire 46 years. When I started to read this forum I thought it odd that so many grown adults could whine about something as trivial as adjusting to a mask that could save their lives. I was a judgemental IDIOT!
The simple task of trying to get this mask to be quiet is driving me mad. It's like Chinese water torture; starting to fall asleep--startled awake by the sounds of a leaking mask.... starting to fall asleep again--startled awake by the sounds of a leaking mask.... No wonder so many people give up!!! I HATE THIS! With any luck at all, I'll fall asleep on the couch so I won't have to deal with the bedroom and the dreaded mask.
How could sleep possibly be even more elusive than it was b4 this supposed CURE???
------------------------------------------------------------------
REMstar Auto w/CFlex and HH
I hate this, hate this, HATE THIS!!!!
-
neversleeps
- Posts: 1141
- Joined: Wed Apr 20, 2005 7:06 pm
- Location: Minnesota
Oh gosh, neversleeps.
You're living up to your username, aren't you?
If you have to take a break from it, I understand (yes, I do understand, because I've done it too). Just promise me you won't stray too far, that you'll try again when you're ready. Just don't give up completely, OK? I need you to get better. Why? Because I need to get better with this too, and I need others to keep at it too. This helps me, oddly enough. I want so much for things to improve for you. We gotta get you working on happy.
Linda
You're living up to your username, aren't you?
If you have to take a break from it, I understand (yes, I do understand, because I've done it too). Just promise me you won't stray too far, that you'll try again when you're ready. Just don't give up completely, OK? I need you to get better. Why? Because I need to get better with this too, and I need others to keep at it too. This helps me, oddly enough. I want so much for things to improve for you. We gotta get you working on happy.
Linda
I really feel for you, neversleeps. By all means, try a different full face mask, try an oral mask, try an oral appliance. Keep trying!
I remember when I went in for my titration sleep study, the sleep tech told me to try to ignore small leaks. Easier said than done! But, if it's mostly the NOISE of the leaks bothering you, have you tried ear-plugs? Or a white noise machine? Some people have also had success with sleeping pills or sedatives during the initial period.
Good luck!
I remember when I went in for my titration sleep study, the sleep tech told me to try to ignore small leaks. Easier said than done! But, if it's mostly the NOISE of the leaks bothering you, have you tried ear-plugs? Or a white noise machine? Some people have also had success with sleeping pills or sedatives during the initial period.
Good luck!
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WillSucceed
- Posts: 1031
- Joined: Sun Nov 07, 2004 7:52 am
- Location: Toronto, Ontario
Go on and hate it, just don't let it win.
Hey Neversleeps:
I wish things were going better for you. I also wish I had some answers that would help but suspect that I don't.
What I can tell you is that reading your comments makes me want to encourage you on and beg you to not give up. I'm 47, and was so tired that I'd get in the car, try to remember where I was going, and then have a panic attack because I could not visualize how to get there. I'd strap the mask on at night and have so much chest pain from the pressure that I thought I'd never get a wink of sleep. Damn mask chewed a groove in the bridge of my nose after the second night (thanks, Activa) and the stuffyness drove me nuts.
The best I can offer you is twofold:
Keep at it, keep at it, keep at it --> you deserve to get some sleep and feel better
and
there are lots of people on this forum reading of your difficulty, feeling your frustration and wishing you success over OSA.
Don't give up
I wish things were going better for you. I also wish I had some answers that would help but suspect that I don't.
What I can tell you is that reading your comments makes me want to encourage you on and beg you to not give up. I'm 47, and was so tired that I'd get in the car, try to remember where I was going, and then have a panic attack because I could not visualize how to get there. I'd strap the mask on at night and have so much chest pain from the pressure that I thought I'd never get a wink of sleep. Damn mask chewed a groove in the bridge of my nose after the second night (thanks, Activa) and the stuffyness drove me nuts.
The best I can offer you is twofold:
Keep at it, keep at it, keep at it --> you deserve to get some sleep and feel better
and
there are lots of people on this forum reading of your difficulty, feeling your frustration and wishing you success over OSA.
Don't give up
just remember one of the most frustrating things about all of this, that is ALSO its biggest ray of hope, is that people are unique and one person's "mask from 'ell" is another person's nirvana.
I have tried a LOT of masks, including both the Ultra Mirage FF AND the HC431 FF which most people seem to pan. I MUCH preferred the HC431, but I am hesitant to say that since so many people seem to hate it. I found it sealed much better and was less prone to leakage due to "jaw drop back".
But ANY full face mask is basically a hovercraft above about 12cm pressure, plus or minus a few cm, in my experience.
I also discovered when I finally got a full face mask to seal, by using the 431, that FF masks are a DISASTER For me. Downright scarey since the FF seems to kick in some weird apnea mechanism and I wake up with worse oxygen starvation headaches than no CPAP at all.
have you tried the trick of the extra strap across the front of the Ultra circling around the back of your head to add a force holding it straight onto your face? Also routing the hose up OR down to see if that makes a difference.
It seems like most masks need some extra strap somewhere.
Hang in there! Its taken me over a year to START feeling better and then I found out I may have other issues too.(Restless Leg Syndrome...AAAARRRGGGHHH!)
When I went in to get my "snoring cured" at the prodding of my wife, I also never guessed it could get this rough.
Hang in there! It CAN and probably WILL improve. Just keep trying new tricks to find something that will work for you and feel free to vent on forums like this, because......well I know it certainly makes ME feel better to vent to a sympathetic audience!
I have tried a LOT of masks, including both the Ultra Mirage FF AND the HC431 FF which most people seem to pan. I MUCH preferred the HC431, but I am hesitant to say that since so many people seem to hate it. I found it sealed much better and was less prone to leakage due to "jaw drop back".
But ANY full face mask is basically a hovercraft above about 12cm pressure, plus or minus a few cm, in my experience.
I also discovered when I finally got a full face mask to seal, by using the 431, that FF masks are a DISASTER For me. Downright scarey since the FF seems to kick in some weird apnea mechanism and I wake up with worse oxygen starvation headaches than no CPAP at all.
have you tried the trick of the extra strap across the front of the Ultra circling around the back of your head to add a force holding it straight onto your face? Also routing the hose up OR down to see if that makes a difference.
It seems like most masks need some extra strap somewhere.
Hang in there! Its taken me over a year to START feeling better and then I found out I may have other issues too.(Restless Leg Syndrome...AAAARRRGGGHHH!)
When I went in to get my "snoring cured" at the prodding of my wife, I also never guessed it could get this rough.
Hang in there! It CAN and probably WILL improve. Just keep trying new tricks to find something that will work for you and feel free to vent on forums like this, because......well I know it certainly makes ME feel better to vent to a sympathetic audience!
Remember:
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
I'm sorry you are having such frustration. I have never been good at going to sleep in a very quiet setting. I noticed right away that if it is very quiet I focus on every little noise the mask makes as I breathe, move, etc. By setting a sleep timer on the TV and turning the volume fairly low, or by playing a CD at low volume, I focus on that sound and go right to sleep never even noticing the noises my mask is making. Of course, that may not work for you, but it sure works for me. Just keep trying and don't give up. I'm sure you will find something that works for you and allows you to sleep.
Good luck!
Traveler
Good luck!
Traveler
I've only been at it a couple weeks myself, but I know where you are coming from on many levels. It did get worse before it got better, and not every night is better yet. Last night, for instance, my nose and throat decided it was time to get all phlegmy for no good reason and I finally had to get up and take Nyquil to try to dry it up - which, in the end, helped the sleep, too. Woke up feeling really well. Two nights ago, a similar problem though, and no solution. Morning train wreck, missed a half day of work.
All I can say is to KEEP TRYING. You know what to do just from your posts - try new masks (styles and manufacturers), find new ways to combat the problems with your existing masks by modifying them a bit. Talk with your doctor about it, or, if that's useless, find a different one. See if there's a sleep apnea support group in your area - they might have ideas. I've also heard of people using different gels and lotions to help masks seal - and I know it makes mine seal better and be less abrasive to my skin. They say it'll wear your mask out faster, but to me it's worth every penny to replace the mask every three months instead of every six, for instance. Sleep is priceless.
I think most of all, start psyching yourself into it. Promise yourself that tonight will be a good sleep night. Try wearing your mask during the day when you can to help your face get used to it and to help you find a comfortable fit without the pressure of needing to get sleep. And don't fight it: if it doesn't work that night, it just doesn't. Do your best but stay calm - getting upset will only make you sleep even less.
Hang in there!
All I can say is to KEEP TRYING. You know what to do just from your posts - try new masks (styles and manufacturers), find new ways to combat the problems with your existing masks by modifying them a bit. Talk with your doctor about it, or, if that's useless, find a different one. See if there's a sleep apnea support group in your area - they might have ideas. I've also heard of people using different gels and lotions to help masks seal - and I know it makes mine seal better and be less abrasive to my skin. They say it'll wear your mask out faster, but to me it's worth every penny to replace the mask every three months instead of every six, for instance. Sleep is priceless.
I think most of all, start psyching yourself into it. Promise yourself that tonight will be a good sleep night. Try wearing your mask during the day when you can to help your face get used to it and to help you find a comfortable fit without the pressure of needing to get sleep. And don't fight it: if it doesn't work that night, it just doesn't. Do your best but stay calm - getting upset will only make you sleep even less.
Hang in there!
**************
RemStar M Series Auto w/C-Flex, many masks (ComfortCurve, Comfort Lite, MirageSwift, lots of personal mods)
RemStar M Series Auto w/C-Flex, many masks (ComfortCurve, Comfort Lite, MirageSwift, lots of personal mods)
The main thing is to keep trying and don't give up. Most of us have been through this and know exactly what you're going through. When I first went on cpap, I didn't have a clue of what to expect. The first few nights were a total disaster. I had a leaky and uncomfortable mask that I had to strap down so tight that I eyes almost popped out and the instant I would start drifting off to sleep, it would start whistling away and drive me nuts. I cried for about 4 days until I found this website and found some real help. I've been on cpap since November and actually look forward to putting on the cpap gear and going to bed. I know that sounds impossible now but it will happen for you too. Just keep at it. Just sleep with it a little bit each night until you get the hang of it and definitely try different interfaces. Taking naps during the daytime or just putting it on for an hour or so and watching t.v. during the day without even thinking about going to sleep helps you to get used to the feel of it. Please don't just quit. It will get better!
post subject
I'll add my 2 cents, worth maybe 1/8th of a cent?
I've been at it for over two weeks, and so far I've gotten 2 decent nights, and even then, one of those nights I made it to 5 a.m. and the other time about 3 a.m. before taking the mask off. It was usually a position shift that caused leaking that woke me up and made me take it off.
Even so, with those 2 nights that were semi-successful, I noticed a difference in my fatigue level the next day.
There are all sorts of people in the world. A lot of people can put aside annoyances (squeaks, minor whistles, small leaks) without it bothering them and plow on. Others, the small things bug them to death. It's not a choice, it's just the way we are. Just like some people have hot tempers, others don't. Those differences are what makes us all interesting.
If you are one of those who it seems the small things bug the heck out of you, try some kind of "mind-therapy" when you go to bed.
Such as: "This mask is my friend." "I think I'll write a little ditty to go with the sounds this mask makes," "I am stronger than this, I WILL make it work!"
Maybe starting out with an aim for 2 hours with it on. Do that for a couple of nights.
Then aim for 2 1/2 or 3 hours for a couple of nights.
Slowly work yourself up. Tell yourself:
Oh boy, I don't have to put up with this very long, the sooner I go to sleep with it on, the sooner I can wake up and take it off!
Then start telling yourself that hey, the longer I keep it on, the better it will make me feel!
Then, Wow, that wasn't so bad!
Hey, I think I'm getting the hang of this!
Finally: I wouldn't consider sleeping without it!
Everyone can design their own "mind games" and make it work.
This is how I lost 12 pounds.
Every time I had to make a trip to the bathroom, instead of going to the main bath, I trekked through my bedroom, which made me cross in front of my dresser mirror.
As I crossed, I flipped up my shirt and glanced at the profile of my belly sticking out there. Then I said out loud, "You pig! Just look at that belly! Lose the weight! Your disgusting!"
As I have a weak bladder, I made many treks, so I castigated myself constantly. That kept the thought of losing weight foremost in my mind, all day long, and next thing you know, 12 pounds was gone and I was looking svelt. Mind games can work.
Resperonics BiPAP pro 2
Ultra Mirage Full Face mask
DETERMINATION (otherwise known as Betty's bull-headedness)
I've been at it for over two weeks, and so far I've gotten 2 decent nights, and even then, one of those nights I made it to 5 a.m. and the other time about 3 a.m. before taking the mask off. It was usually a position shift that caused leaking that woke me up and made me take it off.
Even so, with those 2 nights that were semi-successful, I noticed a difference in my fatigue level the next day.
There are all sorts of people in the world. A lot of people can put aside annoyances (squeaks, minor whistles, small leaks) without it bothering them and plow on. Others, the small things bug them to death. It's not a choice, it's just the way we are. Just like some people have hot tempers, others don't. Those differences are what makes us all interesting.
If you are one of those who it seems the small things bug the heck out of you, try some kind of "mind-therapy" when you go to bed.
Such as: "This mask is my friend." "I think I'll write a little ditty to go with the sounds this mask makes," "I am stronger than this, I WILL make it work!"
Maybe starting out with an aim for 2 hours with it on. Do that for a couple of nights.
Then aim for 2 1/2 or 3 hours for a couple of nights.
Slowly work yourself up. Tell yourself:
Oh boy, I don't have to put up with this very long, the sooner I go to sleep with it on, the sooner I can wake up and take it off!
Then start telling yourself that hey, the longer I keep it on, the better it will make me feel!
Then, Wow, that wasn't so bad!
Hey, I think I'm getting the hang of this!
Finally: I wouldn't consider sleeping without it!
Everyone can design their own "mind games" and make it work.
This is how I lost 12 pounds.
Every time I had to make a trip to the bathroom, instead of going to the main bath, I trekked through my bedroom, which made me cross in front of my dresser mirror.
As I crossed, I flipped up my shirt and glanced at the profile of my belly sticking out there. Then I said out loud, "You pig! Just look at that belly! Lose the weight! Your disgusting!"
As I have a weak bladder, I made many treks, so I castigated myself constantly. That kept the thought of losing weight foremost in my mind, all day long, and next thing you know, 12 pounds was gone and I was looking svelt. Mind games can work.
Resperonics BiPAP pro 2
Ultra Mirage Full Face mask
DETERMINATION (otherwise known as Betty's bull-headedness)
I'm by no means an expert, since I've only been at this for three weeks. I'm still driven crazy by the exhaust air in my face, so I've got no helpful advice there.
However, I also am constantly stuffed up which made it completely impossible to breathe through my mask for the first week. I started to think I would have to move to a full-face mask as well. I'm pregnant, so surgery and medication is, at the moment, not an option.
But then I started using Breathe-Right strips along with my mask, and voilà! Maybe you've already tried this but, if not, please try it along with a nasal mask (which could reduce leakage I think and be more comfortable). These little trips are amazing, and I can actually breathe through my nose when I wear them.
That's all the advice I can offer, since I'm struggling as a beginner here, but maybe it'll help you too. Good luck.
However, I also am constantly stuffed up which made it completely impossible to breathe through my mask for the first week. I started to think I would have to move to a full-face mask as well. I'm pregnant, so surgery and medication is, at the moment, not an option.
But then I started using Breathe-Right strips along with my mask, and voilà! Maybe you've already tried this but, if not, please try it along with a nasal mask (which could reduce leakage I think and be more comfortable). These little trips are amazing, and I can actually breathe through my nose when I wear them.
That's all the advice I can offer, since I'm struggling as a beginner here, but maybe it'll help you too. Good luck.
Hi Neversleeps,
I can't speak directly to your mask problem, as I have never used it, but there was a topic recently where Severeena said that she made a fabric "toilet seat cover" (Severeena's choice of words! ) to cushion the mask from her face and reduce leaks. That might help you too.
I DO know that I don't like the feel of anything plasticy or rubbery against my skin and have gone to great lengths to reduce that with my NasalAire II.
I'm not sure how to do an active link, but this is the url for the thread:
viewtopic.php?t=2734
Never give up -- keep working on fixes and tweaks -- Rested Gal has lots of great ideas to make things more comfortable. Keep reading and learning and venting if it helps! We are here to help!
Best of luck to you!
I can't speak directly to your mask problem, as I have never used it, but there was a topic recently where Severeena said that she made a fabric "toilet seat cover" (Severeena's choice of words! ) to cushion the mask from her face and reduce leaks. That might help you too.
I DO know that I don't like the feel of anything plasticy or rubbery against my skin and have gone to great lengths to reduce that with my NasalAire II.
I'm not sure how to do an active link, but this is the url for the thread:
viewtopic.php?t=2734
Never give up -- keep working on fixes and tweaks -- Rested Gal has lots of great ideas to make things more comfortable. Keep reading and learning and venting if it helps! We are here to help!
Best of luck to you!
Sleep well,
Jane
PB 420e -- 10-17 cm/H2O
heated humidifier
NasalAireII
Aura that I have deconstructed & am making a
new headgear for.
Jane
PB 420e -- 10-17 cm/H2O
heated humidifier
NasalAireII
Aura that I have deconstructed & am making a
new headgear for.
Re: I hate this, hate this, HATE THIS!!!!
don't worry, you are certainly NOT ALONE. We probably can all safely say we ''hate'' the ''need'' in the first place for having to wear these various contraptions, and second, having to try several masks, nasal masks, nasal pillows, whatnot till we find one that works well enuf with the least amt. of leaking, hissing, skin problems, etc.
Have you tried any of the nasal pillows, I use the swift. I've mentioned it before, it's not perfect, but may be a better alternative than all that ''stuff'' on your face..I couldn't handle that either at my study. One mask got slapped on my face, and it was off before the techie could turn around. I didn't want to feel so suffocated. I even remarked (how positive am I--?), that' I"d rather have the apnea than wear this on my face, head, whatever'' I said. He heard it all before. He told me I was the ''only" titrating patient he had that night who preferred the nasal pillow. So long story short, is sometimes we have to try different interfaces to get thru to one that works. I've tried the Aura and Breeze, found them uncomfortable, contrary to many happy folks. I don't think any of them are perfect...but maybe a different facial pc of equipment, may help you?
Hang in there....we hear you and sympathize greatly..........
Have you tried any of the nasal pillows, I use the swift. I've mentioned it before, it's not perfect, but may be a better alternative than all that ''stuff'' on your face..I couldn't handle that either at my study. One mask got slapped on my face, and it was off before the techie could turn around. I didn't want to feel so suffocated. I even remarked (how positive am I--?), that' I"d rather have the apnea than wear this on my face, head, whatever'' I said. He heard it all before. He told me I was the ''only" titrating patient he had that night who preferred the nasal pillow. So long story short, is sometimes we have to try different interfaces to get thru to one that works. I've tried the Aura and Breeze, found them uncomfortable, contrary to many happy folks. I don't think any of them are perfect...but maybe a different facial pc of equipment, may help you?
Hang in there....we hear you and sympathize greatly..........
neversleeps wrote:I thought once I got going on this CPAP therapy I'd feel better eventually. I know there are a few people out there who feel better almost immediately. I didn't expect that, but I never thought I'd feel worse than I did b4 I started!!!! How could a severe sleep apnea sufferer become more sleep-deprived than she already was?? I'll tell you how. Trying to sleep with this monstrosity on my face!!!!!
I've come to terms with the fact that I will never again be just a typical person sleeping in bed. I've accepted the fact that I now look like an android and not a woman. It would be worth it if I was actually able to wake up feeling rested for the first time in decades.
I've read this forum for a couple months now. I understand that adjusting to your mask is EVERYTHING. I have to use a full face mask because my nose is stuffed 99% of the time. Yes, I've had the sinus and nasal surgery, yes, I use Flonase, yes, I've done the allergy shots, yes, I've done the nasal washes, the antihistamines, etc. Ok, so I ordered the Ultra Mirage FF because it got the MAJORITY of positive results. Well, not on this face.
I've now ordered the F&P 431 FF even though the MAJORITY dislike it. But I've got to get some sleep! I feel more dead than I've ever felt before in my entire 46 years. When I started to read this forum I thought it odd that so many grown adults could whine about something as trivial as adjusting to a mask that could save their lives. I was a judgemental IDIOT!
The simple task of trying to get this mask to be quiet is driving me mad. It's like Chinese water torture; starting to fall asleep--startled awake by the sounds of a leaking mask.... starting to fall asleep again--startled awake by the sounds of a leaking mask.... No wonder so many people give up!!! I HATE THIS! With any luck at all, I'll fall asleep on the couch so I won't have to deal with the bedroom and the dreaded mask.
How could sleep possibly be even more elusive than it was b4 this supposed CURE???
------------------------------------------------------------------
REMstar Auto w/CFlex and HH
-
patrick95405
- Posts: 1
- Joined: Thu May 05, 2005 9:50 am
FACE MASK
DEAR NEVERSLEEPS; I AM NEW TO FORUM. I KNOW HOW YOU FEEL. I WENT THROUGH MANY DIFFERENT MASKS TRYING TO FIND THE RIGHT ONE. I WAS TOLD ABOUT ONE CALLED THE ORACLE. IT IS SHAPED LIKE A SCUBAS DIVERS MOUTH PIECE AND FITS IN YOUR MOUTH. YOU ARE ABLE TO BREATH THROUGH YOUR MOUTH AND IT IS EASIER TO GET COMFORTABLE AND SLEEP BETTER. TALK TO YOUR DOCTOR ABOUT THIS OR YOUR THERAPIST.
THANX
PATRICK95405
THANX
PATRICK95405