I just want some sleep!
December 29, 2012 1:16 PM
I am having serious psychological trouble adjusting to using my CPAP machine. I hate it with the fire of a thousand suns and I'm resentful and miserable and shall I go on? Yes, I shall.
From the beginning it has made my life measurably worse. I don't know who these people are that report increased energy and joie de vivre but it's not me. I sleep awesomely without it, I'm not tired during the day, I don't get morning headaches. The only reason I use it is because it's not fair to my husband to have to deal with my disability or death. It understandably makes him very anxious when I don't wear it, plus I snore like a chainsaw.
The primary issue is that it keeps me awake most of the night. It's the feeling of something touching me, the pressure of the straps, and the air blowing in my face (and sometimes in my eyes). Even when I'm dog-tired, just initially putting it on wakes me up again because of the sudden influx of oxygen. Last night I was in bed for 10 hours and slept maybe 2. I said "fuck this," took it off and slept beautifully for another three hours. The angels sung.
I've been through three masks. This is by far the best one, and there are no other viable options to try. I have to have a full-face mask because I cannot breathe through my nose. I've been to two doctors and two medical supply places and the nice people have told me that it really doesn't get any better than this; all masks are going to leak a bit, all masks are going to make my mouth dry, all masks are (obviously) going to be touching me all night. They're really polite about it, but the end result is "suck it up."
I am not a candidate for surgery because my apnea is so severe that surgery would still not bring it down to a safe level. (I've gotten a second opinion.) I'm 105 lbs so my weight is definitely not a factor. I have painkillers (from neck and back trouble) but I'm loathe to take them just to sleep.
I'm ANGRY that I have to wear this thing and terrified of not getting a good night's sleep for the rest of my life. I've had this thing for a few years and I can't manage more than a month or two of using it. I get maybe one good night's sleep out of 5, and the good night is because I'm so fucking exhausted from the previous four. I'd really like to figure this out because it's not fair to my husband to be afraid of my death.
From the beginning it has made my life measurably worse. I don't know who these people are that report increased energy and joie de vivre but it's not me. I sleep awesomely without it, I'm not tired during the day, I don't get morning headaches. The only reason I use it is because it's not fair to my husband to have to deal with my disability or death. It understandably makes him very anxious when I don't wear it, plus I snore like a chainsaw.
The primary issue is that it keeps me awake most of the night. It's the feeling of something touching me, the pressure of the straps, and the air blowing in my face (and sometimes in my eyes). Even when I'm dog-tired, just initially putting it on wakes me up again because of the sudden influx of oxygen. Last night I was in bed for 10 hours and slept maybe 2. I said "fuck this," took it off and slept beautifully for another three hours. The angels sung.
I've been through three masks. This is by far the best one, and there are no other viable options to try. I have to have a full-face mask because I cannot breathe through my nose. I've been to two doctors and two medical supply places and the nice people have told me that it really doesn't get any better than this; all masks are going to leak a bit, all masks are going to make my mouth dry, all masks are (obviously) going to be touching me all night. They're really polite about it, but the end result is "suck it up."
I am not a candidate for surgery because my apnea is so severe that surgery would still not bring it down to a safe level. (I've gotten a second opinion.) I'm 105 lbs so my weight is definitely not a factor. I have painkillers (from neck and back trouble) but I'm loathe to take them just to sleep.
I'm ANGRY that I have to wear this thing and terrified of not getting a good night's sleep for the rest of my life. I've had this thing for a few years and I can't manage more than a month or two of using it. I get maybe one good night's sleep out of 5, and the good night is because I'm so fucking exhausted from the previous four. I'd really like to figure this out because it's not fair to my husband to be afraid of my death.
If your question is how to adjust to it......
I think you could reframe this as a sleep issue, not a cpap issue. The machine is not negotiable so how do you get sleep when you're now, effectively, an insomniac?
You lie in bed, still and quiet. You accept that you're not going to sleep easily and know that lying still with your eyes closed is 80% as restorative as actual sleep. Also know that you are sleeping more than you realise.
But basically, it all lies in the lack of resistance. It's crappy and horrible, but you'd adjust to living under a flight path, this is your flight path. If you're resentful, it won't get better ever and you'll resent yourself in to exhaustion.
There's some kind of zen-like spot where you're going to have to accept that it's better to be on the machine than have a stroke and be a locked-in vegetable (that's my personal worst case scenario. Death is not as scary for me as locked-in).
This is NOT for your husband's sake, but for your own.
posted by taff at 1:29 PM on December 29, 2012
I think you could reframe this as a sleep issue, not a cpap issue. The machine is not negotiable so how do you get sleep when you're now, effectively, an insomniac?
You lie in bed, still and quiet. You accept that you're not going to sleep easily and know that lying still with your eyes closed is 80% as restorative as actual sleep. Also know that you are sleeping more than you realise.
But basically, it all lies in the lack of resistance. It's crappy and horrible, but you'd adjust to living under a flight path, this is your flight path. If you're resentful, it won't get better ever and you'll resent yourself in to exhaustion.
There's some kind of zen-like spot where you're going to have to accept that it's better to be on the machine than have a stroke and be a locked-in vegetable (that's my personal worst case scenario. Death is not as scary for me as locked-in).
This is NOT for your husband's sake, but for your own.
posted by taff at 1:29 PM on December 29, 2012
Not sure what the question is, but I have had a cpap for 3 years and am no more rested than I ever was. In fact, I won't even get into bed until I am so exhausted I have to sleep. I only have the kind of mask over my nose, so no experience with full mask, but after literally hundreds of adjustments to the straps, I think after 3 years it fits snugly without too much leakage and without digging into my face too much that I am accepting of the thing and even find the sound to be a nice white noise sound.
I sleep on my back. I recently added a wedge (not sure if it is what PorcinceWithMe is referring to) under my feet so I do not roll over. Not sure if it helps. I have a humidifier on mine, but I still occasionally wake up with a dry mouth. There are products you can put on the inside of your mouth (like a cream) before you go to sleep that works to alleviate dry mouth. I was given a tube at my initial sleep test, but have not used it but for the first week or so.
I have come to accept the darn thing as my lot in life and without it, a risk of no lot and no life.
posted by JohnnyGunn at 1:33 PM on December 29, 2012
I sleep on my back. I recently added a wedge (not sure if it is what PorcinceWithMe is referring to) under my feet so I do not roll over. Not sure if it helps. I have a humidifier on mine, but I still occasionally wake up with a dry mouth. There are products you can put on the inside of your mouth (like a cream) before you go to sleep that works to alleviate dry mouth. I was given a tube at my initial sleep test, but have not used it but for the first week or so.
I have come to accept the darn thing as my lot in life and without it, a risk of no lot and no life.
posted by JohnnyGunn at 1:33 PM on December 29, 2012
Might it be possible for you to get some sort of surgery done on your nose so that you would be able to breathe through it? That would open up a much wider range of mask options.
I'll second PorcineWithMe's mention of the heated humidifier and, if necessary, heated tube so that you can turn the humidifier higher. Especially with a full-face mask (so, no nose-to-mouth leakage), I cannot think of any reason why your mouth would have to get dried out from CPAP.
If I might ask, what is your prescribed pressure or pressure range? Does your machine support momentary reduction of pressure upon exhalation? (There are a number of names for this, which vary by manufacturer.) If so, have you tried all of the settings for that?
Finally, have you asked your doctor about whether sleeping pills might be useful as an aide to adjusting to using the machine?
posted by Juffo-Wup at 1:36 PM on December 29, 2012
I'll second PorcineWithMe's mention of the heated humidifier and, if necessary, heated tube so that you can turn the humidifier higher. Especially with a full-face mask (so, no nose-to-mouth leakage), I cannot think of any reason why your mouth would have to get dried out from CPAP.
If I might ask, what is your prescribed pressure or pressure range? Does your machine support momentary reduction of pressure upon exhalation? (There are a number of names for this, which vary by manufacturer.) If so, have you tried all of the settings for that?
Finally, have you asked your doctor about whether sleeping pills might be useful as an aide to adjusting to using the machine?
posted by Juffo-Wup at 1:36 PM on December 29, 2012
May I gently suggest that the issue isn't the mask or you, but your husband's very understandable fears?
The mask makes you miserable and degrades your quality of life. It's only benefit is to ease your husband's fears and as helpful as that is to him, it's not helping both of you. In fact, it's making your life worse. In time that may cause resentment on your part and erode the relationship.
Talk to your husband about the fears. Perhaps therapy will help.
In the end, as the husband of a newly disabled wife, I've come to the conclusion that whatever fears I have are my own and don't do the relationship any good. My wife's disability may kill her and thus shorten our time together. If that happens, that it happens, but I'd prefer the time that we do have together to be fearless and enjoyable for both of us.
posted by Brandon Blatcher at 1:57 PM on December 29, 2012
The mask makes you miserable and degrades your quality of life. It's only benefit is to ease your husband's fears and as helpful as that is to him, it's not helping both of you. In fact, it's making your life worse. In time that may cause resentment on your part and erode the relationship.
Talk to your husband about the fears. Perhaps therapy will help.
In the end, as the husband of a newly disabled wife, I've come to the conclusion that whatever fears I have are my own and don't do the relationship any good. My wife's disability may kill her and thus shorten our time together. If that happens, that it happens, but I'd prefer the time that we do have together to be fearless and enjoyable for both of us.
posted by Brandon Blatcher at 1:57 PM on December 29, 2012
I have a heated humidifier turned up as high as it will go. I will investigate the heated tube.
If I might ask, what is your prescribed pressure or pressure range? Does your machine support momentary reduction of pressure upon exhalation? (There are a number of names for this, which vary by manufacturer.) If so, have you tried all of the settings for that?
Starts at 4 and ramps up to 20 over 45 minutes (the slowest ramp possible). It's an APAP, so it adjusts the pressure to what I need (this is the exact machine, shown here without humidifier). 20 is completely intolerable and wakes me up, so I hit the button so it will go down to 4 and ramp up again. I have been back to the medical supply place and the doctor and they have adjusted the settings as much as they can.
posted by desjardins at 2:00 PM on December 29, 2012
If I might ask, what is your prescribed pressure or pressure range? Does your machine support momentary reduction of pressure upon exhalation? (There are a number of names for this, which vary by manufacturer.) If so, have you tried all of the settings for that?
Starts at 4 and ramps up to 20 over 45 minutes (the slowest ramp possible). It's an APAP, so it adjusts the pressure to what I need (this is the exact machine, shown here without humidifier). 20 is completely intolerable and wakes me up, so I hit the button so it will go down to 4 and ramp up again. I have been back to the medical supply place and the doctor and they have adjusted the settings as much as they can.
posted by desjardins at 2:00 PM on December 29, 2012
I am sorry to not have specific recommendations, but just wanted to let you know that a cousin of mine has the same issue -- significant sleep apnea that did not, prior to diagnosis, bother him noticeably; and cannot tolerate the CPAP mask in any of its permutations.
Hopefully better treatments will be devised soon.
posted by RRgal at 2:07 PM on December 29, 2012
Hopefully better treatments will be devised soon.
posted by RRgal at 2:07 PM on December 29, 2012
Can you get a prescription for Ambien or Lunesta to get you over the hurdle of being able to sleep with the CPAP? You don't have to take them forever, just for a few days until you adjust.
And, yes, definitely see if you can do something about breathing through your nose - it's normal to be able to breathe through one's nostrils and it may be a very simple matter of a prescription spray like Flonase, or minor surgery. (That also might help your sleep apnea as well.)
posted by Rosie M. Banks at 2:14 PM on December 29, 2012
And, yes, definitely see if you can do something about breathing through your nose - it's normal to be able to breathe through one's nostrils and it may be a very simple matter of a prescription spray like Flonase, or minor surgery. (That also might help your sleep apnea as well.)
posted by Rosie M. Banks at 2:14 PM on December 29, 2012
Two ideas:
1) What about getting a NON-auto CPAP so that the setting can be set lower? Now, obviously, when the setting is lower, it's not going to be getting to the optimal pressure for you (which appears to be 20). However, I don't see how that's any worse than you either not wearing the machine or waking up every hour to turn down the pressure when it finally gets to where you need it to be. Either way, you're not getting the pressure at 20. You need to get used to wearing the mask and sleeping with it, then get used to the higher pressure. Trying to adjust to too many new things at once sounds like it's part of the difficulty.
2) I would definitely second (on preview, third) using a sleep medication to help you sleep with the mask on. There are some great sleep meds out there these days.
So my idea would be, let's say that you have a machine that's only going up to 10 or 12 or something, and you're using a sleep medication. You wear the CPAP every single night and use the sleep medication for 6 months. It seems to me that by the end of this time, you might be so used to sleeping with the CPAP on, that you won't need the medication. Then you start titrating up the pressure little by little over time. Eventually, you train yourself to sleep just as well at higher and higher pressures. And then at the end of a year, perhaps, you are able to go back to your APAP machine and you are able to sleep, ideally.
The problem with the approach now is that you're trying to use the APAP for a couple of nights, and you're changing a lot of things at once - having the mask touch you, noise, air leak, air flow, dryness, etc. That's frustrating and not working/not allowing you to sleep, and you give up. I think you need to make more incremental changes, and hopefully that will let you try for a longer period without reaching your breaking point of frustration. Good luck! Treating your sleep apnea is really good for your health and I'm sure your husband appreciates the work you're putting into staying healthy (for both of your sakes)
posted by treehorn+bunny at 2:29 PM on December 29, 2012
1) What about getting a NON-auto CPAP so that the setting can be set lower? Now, obviously, when the setting is lower, it's not going to be getting to the optimal pressure for you (which appears to be 20). However, I don't see how that's any worse than you either not wearing the machine or waking up every hour to turn down the pressure when it finally gets to where you need it to be. Either way, you're not getting the pressure at 20. You need to get used to wearing the mask and sleeping with it, then get used to the higher pressure. Trying to adjust to too many new things at once sounds like it's part of the difficulty.
2) I would definitely second (on preview, third) using a sleep medication to help you sleep with the mask on. There are some great sleep meds out there these days.
So my idea would be, let's say that you have a machine that's only going up to 10 or 12 or something, and you're using a sleep medication. You wear the CPAP every single night and use the sleep medication for 6 months. It seems to me that by the end of this time, you might be so used to sleeping with the CPAP on, that you won't need the medication. Then you start titrating up the pressure little by little over time. Eventually, you train yourself to sleep just as well at higher and higher pressures. And then at the end of a year, perhaps, you are able to go back to your APAP machine and you are able to sleep, ideally.
The problem with the approach now is that you're trying to use the APAP for a couple of nights, and you're changing a lot of things at once - having the mask touch you, noise, air leak, air flow, dryness, etc. That's frustrating and not working/not allowing you to sleep, and you give up. I think you need to make more incremental changes, and hopefully that will let you try for a longer period without reaching your breaking point of frustration. Good luck! Treating your sleep apnea is really good for your health and I'm sure your husband appreciates the work you're putting into staying healthy (for both of your sakes)
posted by treehorn+bunny at 2:29 PM on December 29, 2012
My SO fights his CPAP machine too but recognizes how important it is to his health, especially after serious heart surgery. A low dose of clonazepam has helped him relax enough to get to sleep.
posted by tamitang at 2:32 PM on December 29, 2012
posted by tamitang at 2:32 PM on December 29, 2012
That's the same model of CPAP machine that I use. If you hold down a certain two buttons at once for 2-3 seconds, you can get into a mode that lets you modify the settings yourself. I know you're not supposed to do this yourself but if you have been struggling with this for years, maybe it's time to try tweaking things yourself. If you have some control over the settings you might feel better about the machine in general, and maybe you can figure out what works best for you. You could try switching it back to regular CPAP mode if the changes in pressure are bothersome. And you could maybe try reducing the max pressure to see if that helps. If 20 is intolerable, what is 15 like? Maybe a lower pressure setting won't completely eliminate your apneas, but it might be better than not using the machine at all. Also maybe you could set it for a lower pressure for a while until you get used to it and more comfortable sleeping with it.
You can use a little vaseline around the edges of your mask to stop the air from blowing in your face. And if the straps are just not in the right place on your head, you can improvise your own straps. Once when my cat chewed through my strap, I cut up a pair of nylons and made a surprisingly comfortable temporary set of straps to hold my mask in place.
I also find it helpful sometimes to put the mask on, start the machine up, and just hang out in bed for awhile, maybe watching TV or listening to an audiobook or something; basically just spend some time relaxing and being comfy without expecting to be able to sleep right away. Also taff's point about sleeping more than you realize might be true; during my sleep study I thought I had only managed to nod off for a few minutes when actually I was asleep for four hours.
When I was newly diagnosed, I got a lot of comfort from hanging around cpaptalk and reading about other people's experiences with sleep apnea. There are a lot of conversations there about the mental aspects of adjusting to needing a machine to sleep safely, as well as technical discussion of hardware.
Good luck! It's worth the effort.
posted by beandip at 2:33 PM on December 29, 2012
You can use a little vaseline around the edges of your mask to stop the air from blowing in your face. And if the straps are just not in the right place on your head, you can improvise your own straps. Once when my cat chewed through my strap, I cut up a pair of nylons and made a surprisingly comfortable temporary set of straps to hold my mask in place.
I also find it helpful sometimes to put the mask on, start the machine up, and just hang out in bed for awhile, maybe watching TV or listening to an audiobook or something; basically just spend some time relaxing and being comfy without expecting to be able to sleep right away. Also taff's point about sleeping more than you realize might be true; during my sleep study I thought I had only managed to nod off for a few minutes when actually I was asleep for four hours.
When I was newly diagnosed, I got a lot of comfort from hanging around cpaptalk and reading about other people's experiences with sleep apnea. There are a lot of conversations there about the mental aspects of adjusting to needing a machine to sleep safely, as well as technical discussion of hardware.
Good luck! It's worth the effort.
posted by beandip at 2:33 PM on December 29, 2012
I had to do my own research to find a mask that fit me right. Something about the configuration of my nose meant a full-face mask leaked terribly near my eyes, and I sleep with my mouth open so nasal pillows didn't work for me. (also, they hurt my nose.) Although my DME provider was helpful, she didn't really have any options beyond the standard full-face or nasal pillow masks to offer me. In my own research, I found one that combined the features I needed and had them special-order it for me. It's worked very well for me for the last two years. Sometimes it starts leaking a bit more than usual, but most of the time I wash it and it's just fine after the facial oils are cleaned off.
There are a number of different kinds of masks, but most DME providers don't really know the full range (or what will work best for you). There may still be something out there that would work better for you. I use a hybrid-style mask, my aunt uses an oral-style mask, and there are even full-face masks that might help by putting the pressure in different places (though they look a little freaky, and might bug you with the air in your eyes). Anyway, just because the doctors or equipment providers think what you've got is as good as it's going to get doesn't necessarily mean they're right.
posted by katemonster at 3:44 PM on December 29, 2012
There are a number of different kinds of masks, but most DME providers don't really know the full range (or what will work best for you). There may still be something out there that would work better for you. I use a hybrid-style mask, my aunt uses an oral-style mask, and there are even full-face masks that might help by putting the pressure in different places (though they look a little freaky, and might bug you with the air in your eyes). Anyway, just because the doctors or equipment providers think what you've got is as good as it's going to get doesn't necessarily mean they're right.
posted by katemonster at 3:44 PM on December 29, 2012
Would it help to make some other adjustments to your routine, like read when you get into bed, in the dark on an iPad or with a book light, with the mask on for a bit, so that you don't put the mask and then feel like someone yelled OKAY GO TO SLEEP when you put it on?
What about adding a rotating fan to the room, so there other breezes that waft through and maybe the slight blowing of the mask won't be so noticeable?
A white noise generator to deal with/obfuscate the noise?
A sleep mask? I know that probably seems like the last thing you'd want to try and maybe it would feel like the next step toward sleeping in a full suit of armor, but again, maybe adding additional distractions and sensations would help you get past your flat-out hatred of the machine itself and the frustration you're feeling?
posted by A Terrible Llama at 3:53 PM on December 29, 2012
What about adding a rotating fan to the room, so there other breezes that waft through and maybe the slight blowing of the mask won't be so noticeable?
A white noise generator to deal with/obfuscate the noise?
A sleep mask? I know that probably seems like the last thing you'd want to try and maybe it would feel like the next step toward sleeping in a full suit of armor, but again, maybe adding additional distractions and sensations would help you get past your flat-out hatred of the machine itself and the frustration you're feeling?
posted by A Terrible Llama at 3:53 PM on December 29, 2012
Have you tried other alternatives to CPAP? My dad's slept with one of those oral inserts for sleep apnea for most of my life and it's generally worked well for him. I'm not sure if you'd be a good candidate, since I think they're usually for mild to moderate sleep apnea, but it might be worth looking into. (I could be totally off base, though-- I've watched that device visibly help my dad, but I don't suffer from sleep apnea myself.)
posted by NoraReed at 4:49 PM on December 29, 2012
posted by NoraReed at 4:49 PM on December 29, 2012
If you decide to seek out a sleep-inducing medication, ask your doctor about Trazadone- it was originally created as an anti-depressant but is now used primarily as a non-addictive soporific.
posted by foxy_hedgehog at 5:33 PM on December 29, 2012
posted by foxy_hedgehog at 5:33 PM on December 29, 2012
I'm thinking that your not being able to breathe through your nose is the issue. Can you pursue that avenue at all?
posted by St. Alia of the Bunnies at 6:03 PM on December 29, 2012
posted by St. Alia of the Bunnies at 6:03 PM on December 29, 2012
I don't use CPAP, but I'm on 5 liters of oxygen 24/7. I use a nasal cannula and have a humidifier on my oxygen concentrator machine, but the inside of my nose is always a raw, bloody mess from the oxygen blasting into my nostrils. I also have a very dry mouth and dental caries which the dentist blames on the oxygen (a dry mouth is guaranteed to destroy your teeth). I've been on oxygen for 11 years now and I still get annoyed by the constant hiss, the cool/cold air blowing into my sore nose, the slipping of the cannula so the oxygen blows on my lip or in my eyes instead of my nose, the incredibly annoying tubing, etc. and etc. again, but ... I cuss and mutter a bit and then shut up and deal with it because I know I've had a lot more years than I was supposed to thanks to that damn machine.
I sleep on a regular, fat pillow and a memory-foam "double bump" pillow on top, and sometimes have to add yet another skinny pillow in the middle when I'm having a harder time breathing than usual. I take a low dose of clonazepam when I absolutely have to sleep and it works perfectly, but as a rule I just stay up reading until I'm falling asleep - and then sleep late in the morning. I live alone and am retired, so I can get by with that.
I wish I could encourage you, but sometimes I can't even encourage myself. You will get used to it, pretty much, eventually - that's the best I can do. I'd be sure you really do need it, though - not just so your husband doesn't have to listen to you snore.
posted by aryma at 8:37 PM on December 29, 2012
I sleep on a regular, fat pillow and a memory-foam "double bump" pillow on top, and sometimes have to add yet another skinny pillow in the middle when I'm having a harder time breathing than usual. I take a low dose of clonazepam when I absolutely have to sleep and it works perfectly, but as a rule I just stay up reading until I'm falling asleep - and then sleep late in the morning. I live alone and am retired, so I can get by with that.
I wish I could encourage you, but sometimes I can't even encourage myself. You will get used to it, pretty much, eventually - that's the best I can do. I'd be sure you really do need it, though - not just so your husband doesn't have to listen to you snore.
posted by aryma at 8:37 PM on December 29, 2012
Interesting this comes up while I'm tired yet in an uncomfortable position and won't be able to sleep until the early morning.
It seems you can sleep once you are tired enough. So I have a not-good suggestion if the other ideas don't work: only sleep every other night. Take something like modafinil so you don't need to sleep the first night and second day, then crash and sleep 16 hours the second. It's not good, but surely has to be better than sleeping poorly 4/5 nights.
posted by flimflam at 10:28 PM on December 29, 2012
It seems you can sleep once you are tired enough. So I have a not-good suggestion if the other ideas don't work: only sleep every other night. Take something like modafinil so you don't need to sleep the first night and second day, then crash and sleep 16 hours the second. It's not good, but surely has to be better than sleeping poorly 4/5 nights.
posted by flimflam at 10:28 PM on December 29, 2012
Leaks, with air pffffing out around your face and into your eyes, are very irritating. About a year ago I began using a liner and it's made a tremendous difference. Here's a discussion of the problem with leaks from the CPAPtalk forum referenced by beandip. While there are a couple brands of liners available on the market, I make my own using scrap fleece material. The liners are soft and much more comfortable against my skin than the plastic of the mask and it effectively stopped the problem I was having with leaks.
I also made fleece pads that wrap around the straps because I didn't like the feel of the straps against my face - plus the straps usually left tell-tale lines on my cheeks, but with the fleece wraps, there are no marks.
I've also found that sleeping on my back minimizes the sensation I have of the mask pressing against my face. I tuck a pillow under my knees and along my sides to keep me on my back - with my memory foam mattress gently supporting my back, I feel very comfortable.
You also mentioned that your machine is set to ramp up over 45 minutes. I found the ramping up to be very disruptive to my sleep. I would lay awake, trying to anticipate the moment the machine would ramp up. I now set my machine to go full blast from the start. I don't know if that's an option for you, but it might be one less disruption.
posted by kbar1 at 11:00 PM on December 29, 2012
I also made fleece pads that wrap around the straps because I didn't like the feel of the straps against my face - plus the straps usually left tell-tale lines on my cheeks, but with the fleece wraps, there are no marks.
I've also found that sleeping on my back minimizes the sensation I have of the mask pressing against my face. I tuck a pillow under my knees and along my sides to keep me on my back - with my memory foam mattress gently supporting my back, I feel very comfortable.
You also mentioned that your machine is set to ramp up over 45 minutes. I found the ramping up to be very disruptive to my sleep. I would lay awake, trying to anticipate the moment the machine would ramp up. I now set my machine to go full blast from the start. I don't know if that's an option for you, but it might be one less disruption.
posted by kbar1 at 11:00 PM on December 29, 2012
I'm like you, but in time I got used to it...wondering if you've given it enough time...from rereading, I'd guess so. Tighten the straps? Never heard the vaseline trick...gotta do it dude, it will save your life.
posted by sfts2 at 11:35 PM on December 29, 2012
posted by sfts2 at 11:35 PM on December 29, 2012
I commented up thread, but as I just put the damn mask on it occurred to me what got me to wear the damn thing on a consistent basis. I was driving home from work one night, not late, around 6:30pm when I dozed off at the wheel doing 65. I hit the pavement grooves designed to wake you up and did. I pulled off at the next exit to sort of recover. There is a very good argument to be made that fatigued driving is almost as bad as drunk driving in terms of reaction times and decision making.
From that night on, I swore I would at least try it. In the beginning I would take it off subconsciously in the middle of the night, but slowly I adapted. As I said previously, I don't feel all rested and peppy, but I have never fallen asleep at my computer or in my car again.
(The night before I fell asleep at the wheel, I had been "asleep" in my apnea way for 7 hours so I thought I was well rested.)
It seems as if your perception, and you could be 100% correct, is that there is no benefit that you can ascertain from wearing it or no harm from not wearing it. I think you are going to have a hard time over coming the PITA that is wearing a CPAP until something convinces you that there is a real benefit to you.
The only sample I have is me, but level 20 sounds high (I max at 11) which leads me to assume you have a significant case. If you are really in doubt, have another sleep study done. I also am cynical enough to believe that your insurance would not pay for it if it did not think it would be a cost benefit to them in the long run. Less heart issues, less hospitalizations, etc.
I am no doctor so the only thing I can say to convince you is that you may be benefiting your family and it may be the long-run too which is hard to accept. Maybe by wearing it you are reducing the stress on your heart and that will manifest itself at the end of your life even extending it by months, years, etc.
posted by JohnnyGunn at 12:21 AM on December 30, 2012
From that night on, I swore I would at least try it. In the beginning I would take it off subconsciously in the middle of the night, but slowly I adapted. As I said previously, I don't feel all rested and peppy, but I have never fallen asleep at my computer or in my car again.
(The night before I fell asleep at the wheel, I had been "asleep" in my apnea way for 7 hours so I thought I was well rested.)
It seems as if your perception, and you could be 100% correct, is that there is no benefit that you can ascertain from wearing it or no harm from not wearing it. I think you are going to have a hard time over coming the PITA that is wearing a CPAP until something convinces you that there is a real benefit to you.
The only sample I have is me, but level 20 sounds high (I max at 11) which leads me to assume you have a significant case. If you are really in doubt, have another sleep study done. I also am cynical enough to believe that your insurance would not pay for it if it did not think it would be a cost benefit to them in the long run. Less heart issues, less hospitalizations, etc.
I am no doctor so the only thing I can say to convince you is that you may be benefiting your family and it may be the long-run too which is hard to accept. Maybe by wearing it you are reducing the stress on your heart and that will manifest itself at the end of your life even extending it by months, years, etc.
posted by JohnnyGunn at 12:21 AM on December 30, 2012
To try to be encouraging I usually mention that it took me over a year to get used to mine but you're already well past that now.
The only thing I can suggest is medication to aid with falling asleep like Rosie M. Banks brought up.
If it's any consolation, after adjusting I became completely acclimated to my CPAP. Now I find it more comfortable to sleep wearing it than without it. I especially like what I call "submarine mode" in the winter when I can sleep completely underneath the sheets. Give me a ping, Vasily. One ping only, please. So it is possible.
It did give me a thought:I wonder if they could make a mask that goes in the opposite direction from the nasal pillows and is a full helmet enclosing your entire head. If it was custom-molded to your head I bet it could be fairly comfortable.
posted by XMLicious at 2:25 AM on December 30, 2012
The only thing I can suggest is medication to aid with falling asleep like Rosie M. Banks brought up.
If it's any consolation, after adjusting I became completely acclimated to my CPAP. Now I find it more comfortable to sleep wearing it than without it. I especially like what I call "submarine mode" in the winter when I can sleep completely underneath the sheets. Give me a ping, Vasily. One ping only, please. So it is possible.
It did give me a thought:I wonder if they could make a mask that goes in the opposite direction from the nasal pillows and is a full helmet enclosing your entire head. If it was custom-molded to your head I bet it could be fairly comfortable.
posted by XMLicious at 2:25 AM on December 30, 2012
Do you know if you're a good candidate for a TAP device? It is a custom fitted (by a prosthodontist) mouth piece that holds your jaw every so slightly forward to open air passages at the back of the throat. Without insurance it is about $1700-$2000 in my area. My insurance wouldn't cover one until I "failed" a CPAP. It sounds like you fit that description. Out of sheer, stupid vanity I was adamantly against a CPAP and ended up blowing a whole year's worth of FSA just to get out trying it. For me the TAP works wonders and I have moderate to severe sleep apnea.
posted by space_cookie at 7:09 AM on December 30, 2012
posted by space_cookie at 7:09 AM on December 30, 2012
I'm a bit confused about the ramp up to 20 over 45 minutes... That seems like something that would only happen if you were asleep and having apneas, or if your machine is set in CPAP mode instead of APAP mode.
I have the S9 escape, so I don't know what the screen looks like in APAP mode, but I would think there might be an indication of the current pressure, as opposed to just the maximum setpoint. A pressure of 20 is really high, and if it's delivering that when you're breathing fine, it seems like something is wrong.
If I were you, I would use the combination beandip mentioned (I believe it's the lower of the two buttons next to the display, and the button on the knob, both held down for three or so seconds) -- not necessary to adjust -- but at least to find out exactly what your settings are. You'd want to check the "mode" for CPAP vs APAP, and if it is in APAP mode, you'd want to check the minimum and maximum pressures. (I suppose the maximum must be 20 if it goes that high, but it would be interesting to see what the minimum is!)
To be clear -- if you put on the mask and turn on the machine, the pressure goes up to 20 and stays there even if you don't fall asleep and are breathing normally? If that is what happens, it sounds like your machine is, for whatever reason, not in APAP mode.
posted by Juffo-Wup at 9:19 AM on December 30, 2012
I have the S9 escape, so I don't know what the screen looks like in APAP mode, but I would think there might be an indication of the current pressure, as opposed to just the maximum setpoint. A pressure of 20 is really high, and if it's delivering that when you're breathing fine, it seems like something is wrong.
If I were you, I would use the combination beandip mentioned (I believe it's the lower of the two buttons next to the display, and the button on the knob, both held down for three or so seconds) -- not necessary to adjust -- but at least to find out exactly what your settings are. You'd want to check the "mode" for CPAP vs APAP, and if it is in APAP mode, you'd want to check the minimum and maximum pressures. (I suppose the maximum must be 20 if it goes that high, but it would be interesting to see what the minimum is!)
To be clear -- if you put on the mask and turn on the machine, the pressure goes up to 20 and stays there even if you don't fall asleep and are breathing normally? If that is what happens, it sounds like your machine is, for whatever reason, not in APAP mode.
posted by Juffo-Wup at 9:19 AM on December 30, 2012
I can't let that comment slide even though you are probably too sensible to consider it as a possible solution - please do not take modafinil (a medication that you do not need and that is not used for this type of indication) to stay up and then crash every other night.
Taking stimulants at all is terrible for people who are having trouble sleeping, and what sleep physicians actually advise is strict adherence to sleep hygiene, including avoidance of all stimulants including caffeine, if possible, to help you sleep when you need to.
posted by treehorn+bunny at 2:22 PM on December 30, 2012
Taking stimulants at all is terrible for people who are having trouble sleeping, and what sleep physicians actually advise is strict adherence to sleep hygiene, including avoidance of all stimulants including caffeine, if possible, to help you sleep when you need to.
posted by treehorn+bunny at 2:22 PM on December 30, 2012
Yeah, modafinil probably isn't gonna help you here, but probably more because it's really hard to keep a regular schedule that rotates on a 48 hour basis like that. You could totally consider talking it over with a doctor as a possible solution, though. I'm anxious and hypersomniac-- I sleep way too much if I'm not careful, but I have a hard time getting to sleep-- and modafinil is great for that because the anxiety about not being able to sleep and how bad the next day is is totally gone when you have a drug that'll make you functional on the occasions that you don't manage to get a full night's sleep. It also could be potentially helpful if you're worried about safety driving while tired. But it'd be an unusual solution and probably mostly useful as a stopgap, as regularly taking it does build up a tolerance and make it not work as well. If something like this was the issue, you'd probably do better with one of the double-hitter anti-anxiety/sleeping pills like klonopin to help get you to sleep in the first place.
The TAP device is what I was talking about upthread but didn't know the name of.
posted by NoraReed at 12:32 AM on December 31, 2012
The TAP device is what I was talking about upthread but didn't know the name of.
posted by NoraReed at 12:32 AM on December 31, 2012
"May I gently suggest that the issue isn't the mask or you, but your husband's very understandable fears?"
I'm not sure how much you know about sleep apnea. Her case is pretty severe. You might want to check out a couple articles.
Women With Sleep Apnea Face More Severe Brain Damage Than Men: Study
"Women with untreated severe obstructive sleep apnea have a three-and-a-half-fold increase in the risk of dying from cardiovascular disease compared to women without (it),"
Quote from that same study
"Patients treated with continuous positive airway pressure (CPAP; median adherence, 6 hours per day) had cardiovascular mortality rates similar to those of control patients, regardless of OSA severity."
BTW I'm the husband and we've done the therapy thing. In the end it's her call. I love my wife and I want her around. I know she's struggled with this, I'm proud of her for trying. I'm here to support her no matter what. I'm just not willing to lose her to something preventable.
posted by empty vessel at 11:37 PM on December 31, 2012
I'm not sure how much you know about sleep apnea. Her case is pretty severe. You might want to check out a couple articles.
Women With Sleep Apnea Face More Severe Brain Damage Than Men: Study
"Women with untreated severe obstructive sleep apnea have a three-and-a-half-fold increase in the risk of dying from cardiovascular disease compared to women without (it),"
Quote from that same study
"Patients treated with continuous positive airway pressure (CPAP; median adherence, 6 hours per day) had cardiovascular mortality rates similar to those of control patients, regardless of OSA severity."
BTW I'm the husband and we've done the therapy thing. In the end it's her call. I love my wife and I want her around. I know she's struggled with this, I'm proud of her for trying. I'm here to support her no matter what. I'm just not willing to lose her to something preventable.
posted by empty vessel at 11:37 PM on December 31, 2012
Damn, I was going to ask this question this week. I am going to pull my mask on to go to sleep, as reading some stuff here has me scared enough to try harder to get used to my bipap machine.
posted by SuzySmith at 2:22 AM on January 1, 2013
posted by SuzySmith at 2:22 AM on January 1, 2013
Something else that I have found to be helpful is to work on a sleep routine. A sequence of operations you do before you go to bed to tell your body that it is time to fall asleep. I take it a bit further and have a sleep position I go to once I am ready to fall asleep. I have also invested in a great bed, pillows and wonderful blanket. Making the environment as comfortable as possible helps.
All of this falls under the general category of Sleep Hygiene and it all helps.
And sometimes I take my mask off.
YMMV
posted by The Violet Cypher at 1:14 PM on January 2, 2013
All of this falls under the general category of Sleep Hygiene and it all helps.
And sometimes I take my mask off.
YMMV
posted by The Violet Cypher at 1:14 PM on January 2, 2013
A couple people have asked me for an update on this.
I am doing much better. Here is my system:
First, courtesy of my insurance company, I got a new mask, straps, and (heated) hose. I believe you can get these replaced every few months and I highly recommend taking advantage of it, especially the mask. The silicone gets less flexible and the straps get less velcro-y over time and it makes a huge difference in the amount of leaks.
Second, I shortened the ramp-up time to 15 minutes instead of the maximum of 45. This was on a recommendation from several posters at the Apnea Board forums. It seems to help me get used to the higher pressure more quickly.
Third - I have a routine:
1. Wash face, do not moisturize (I have oily skin, ymmv).
2. Take night time medications (includes something that makes me sleepy)
3. Pajamas + clean pillowcase
4. Fill humidifier tank with distilled water
5. Apply lip balm to lips and Biotene gel to gums (helps prevent drying)
6. Apply clean liner to mask
7. Put on mask, don't turn on machine or hook up hose yet
8. Read until I start dropping the book/ereader from tiredness
9. Hook up hose, turn machine on
10. Zzzzzzz
I generally go to bed between 10 and 11 and I take the mask off about 5 or 6. The leaking problem has mostly been solved by the liner + new mask + new straps. I still wake up with a dry mouth every single morning, but at least I'm sleeping.
My machine has an SD card and a little birdie told me that there is downloadable software to read it. It shows pretty detailed graphs of the pressure levels, leaks, apnea levels, etc. It's great to have some tangible feedback, because I don't feel any different on days that I've used the CPAP vs days I haven't. I'm not thrilled, but I've more or less made my peace with it.
posted by desjardins at 11:23 AM on March 21, 2013
I am doing much better. Here is my system:
First, courtesy of my insurance company, I got a new mask, straps, and (heated) hose. I believe you can get these replaced every few months and I highly recommend taking advantage of it, especially the mask. The silicone gets less flexible and the straps get less velcro-y over time and it makes a huge difference in the amount of leaks.
Second, I shortened the ramp-up time to 15 minutes instead of the maximum of 45. This was on a recommendation from several posters at the Apnea Board forums. It seems to help me get used to the higher pressure more quickly.
Third - I have a routine:
1. Wash face, do not moisturize (I have oily skin, ymmv).
2. Take night time medications (includes something that makes me sleepy)
3. Pajamas + clean pillowcase
4. Fill humidifier tank with distilled water
5. Apply lip balm to lips and Biotene gel to gums (helps prevent drying)
6. Apply clean liner to mask
7. Put on mask, don't turn on machine or hook up hose yet
8. Read until I start dropping the book/ereader from tiredness
9. Hook up hose, turn machine on
10. Zzzzzzz
I generally go to bed between 10 and 11 and I take the mask off about 5 or 6. The leaking problem has mostly been solved by the liner + new mask + new straps. I still wake up with a dry mouth every single morning, but at least I'm sleeping.
My machine has an SD card and a little birdie told me that there is downloadable software to read it. It shows pretty detailed graphs of the pressure levels, leaks, apnea levels, etc. It's great to have some tangible feedback, because I don't feel any different on days that I've used the CPAP vs days I haven't. I'm not thrilled, but I've more or less made my peace with it.
posted by desjardins at 11:23 AM on March 21, 2013
Thanks for taking the time to write that up, desjardins! I sent a link to an aunt who has been struggling with CPAP machines for years and she said it was helpful.
posted by XMLicious at 5:49 PM on March 21, 2013
posted by XMLicious at 5:49 PM on March 21, 2013
I've been using one for about a month now and so far it's got me thinking I'd rather die young than wear it for the rest of my life...not that I can sleep with it on, anyway.
posted by The Card Cheat at 4:29 PM on May 13, 2013
posted by The Card Cheat at 4:29 PM on May 13, 2013
This thread is closed to new comments.
My husband hates this shit too and is resentful as hell that his body isn't functioning properly, so you're not alone in that feeling. I hope you figure out a way to make it better for yourself because you really do deserve good sleep.
posted by PorcineWithMe at 1:27 PM on December 29, 2012