Hi,
I just found your website. I was actually diagnosed with SA last March. By the time I had the sleep studies it was August. I didn't get the CPAP until Thanksgiving. I had a lot of trouble with the mask and switched to the one with the nose pillows. I am not sure the name. I have adjusted to it - not without a struggle. But I can fall asleep fairly fast. The problem I have is that I wake up a lot - several times a night. Some of the awakenings are because of CPAP. Water from the humidifier drips down my face, etc. But I also wake up a lot for unknown reasons. Anyway, the concern I have is that I do not feel any relief at all. I feel just as tired as before CPAP. I am going back to see my doctor this week to complain. I guess I am wondering if it isn't working. Maybe I am still not breathing at night even with the mask. Has anyone had a similiar experience. I guess I feel that if I am going to suffer sleeping with this machine - having air shoved up my nose all night, wearing headgear that destroys my hair, having water drip over my face and waking me up, having my poor nose swollen each morning because of the constant air pressure, and my eyes all swollen from - whatever ---that at least it is working and I breath without stopping. Can anyone relate? Kidzda
No relief
8 posts
• Page 1 of 1
Oh yeah,
Go back and read more of the posts on this board and you'll see a lot more similar problems.
The water is something we call "rainout". Check it out in the CPAPopedia above or do a search and you'll find several suggestions on what it is and how to stop it.
Also, masks are a very personal subject. People like different ones. There are a few that seem to work for MOST people (haven't found one yet that works for everyone) but each person is different and one that works for me may well be very bad for you and vice versa. If at all possible, try on a few different masks, nasal pillows. And when you try them, always lie down in a normal sleep position. Your face will change significantly between sitting or standing up and lying down. So a mask that fits at the DME (durable medical equipment) supplier may not fit that night in your bed.
Debbie
Go back and read more of the posts on this board and you'll see a lot more similar problems.
The water is something we call "rainout". Check it out in the CPAPopedia above or do a search and you'll find several suggestions on what it is and how to stop it.
Also, masks are a very personal subject. People like different ones. There are a few that seem to work for MOST people (haven't found one yet that works for everyone) but each person is different and one that works for me may well be very bad for you and vice versa. If at all possible, try on a few different masks, nasal pillows. And when you try them, always lie down in a normal sleep position. Your face will change significantly between sitting or standing up and lying down. So a mask that fits at the DME (durable medical equipment) supplier may not fit that night in your bed.
Debbie
I'm in the same boat.
I am sleeping better, although I still wake up 3-5 times a night.
The problem I was hoping would go away is the fatigue and brain fog, but unfortunately, they have decided to stick around.
I've been on CPAP since mid December 2004.
I haven't ditched the machine because at least some of my symptoms have disappeared, i.e. waking up in cold sweat and with a pounding heart, nocturia, difficulty falling asleep, etc.
I have another sleep study next Friday (which I am dreading).
You may still be having respiratory events because your bottom pressure is too low and not catching everything. (Assuming you're on an APAP). Some people will no doubt tell you that the auto pap will catch everything and automatically adjust to the appropriate pressure, my experience has not proven this.
Can't offer you any words of encouragment, only that you're not alone..
I am sleeping better, although I still wake up 3-5 times a night.
The problem I was hoping would go away is the fatigue and brain fog, but unfortunately, they have decided to stick around.
I've been on CPAP since mid December 2004.
I haven't ditched the machine because at least some of my symptoms have disappeared, i.e. waking up in cold sweat and with a pounding heart, nocturia, difficulty falling asleep, etc.
I have another sleep study next Friday (which I am dreading).
You may still be having respiratory events because your bottom pressure is too low and not catching everything. (Assuming you're on an APAP). Some people will no doubt tell you that the auto pap will catch everything and automatically adjust to the appropriate pressure, my experience has not proven this.
Can't offer you any words of encouragment, only that you're not alone..
Trying is the first step towards failure.
Long time lurker, first time poster.
I am one of the lucky ones and have taken to my CPAP machine quite well. I am definitely getting quality sleep and I am no where near as tired during the day than I was before CPAP.
These boards are a wonderful source of info and your thread will soon have many quality responses to help you through your issue. Keep checking back.
I am one of the lucky ones and have taken to my CPAP machine quite well. I am definitely getting quality sleep and I am no where near as tired during the day than I was before CPAP.
These boards are a wonderful source of info and your thread will soon have many quality responses to help you through your issue. Keep checking back.
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
kidzda, I'm no doctor, but I truly think a lot of the "still feel tired even months after starting cpap" can be attributed to these things:
1. at first we are trading one kind of sleep disruption (apneas/hypopneas - our "sleep apnea" problems) for another kind of disruption--that of getting used to all this equipment and trying to sleep in a completely new way.
2. not having found a comfortable mask yet. Which ones are comfortable? That depends on the person, but as snoozin said, a search for topics about masks will turn up a lot of ideas and opinions on which are generally considered more comfortable than others.
3. mouth leaks - it doesn't matter how comfortable a mask is, if you are leaking air out of your mouth or out from between closed lips as air puffs, the treatment pressure is not going where it's needed. It's not keeping the throat open if the air is gushing out the mouth. If that's a problem and you can't find a way to stop the mouth leaks, a full face mask (covers nose and mouth, doesn't cover the entire face) is a solution.
4. not having found a comfortable machine yet. An Autopap, especially the REMstar Auto with C-Flex, works well for many people who don't really have to have the full prescribed pressure blowing at them all night. An auto will vary the pressure according to what you actually need while you sleep. If the Auto also has the C-Flex feature, you get even more relief from pressure, since C-flex will drop the pressure some each time you exhale. However, people who absolutely have to have a high pressure most of the night, would get more comfort from a BiPap (a bi-level machine that delivers a single pressure for inhalation and a lower pressure for exhalation.)
5. this is often overlooked - sometimes it could be a poor mattress, or even a good mattress that's lost its oomph after so many years.
6. harder to pinpoint - could be other underlying health conditions (arthritis, acid reflux, or any number of ailments) that cause sleep disruptions even if the cpap treatment itself is going well.
7. also hard to nail down - could be environmental factors like noises in the house (perhaps a tv going in another room, icemaker clinking in the night, dog thump-scratching beside bed) or from the outside (neighbor's dog barking, squirrels running across roof, old house creaking, noisy furnace kicking in periodically.) Things like that could keep arousing a person up out of the deeper sleep stages without waking them up enough to be aware of it. Sometimes we become accustomed to environmental sounds after awhile (think of people living near a train track or airport, who gradually "tune out" those sounds over time.)
No matter how long a person "has been on cpap", if the treatment itself is not fairly comfortable to sleep with, sleep disruptions of one kind or another will still be there and will prevent you from getting good sleep. You can't really start counting "I've had x number of days on treatment", imho, until you're sure you've got as effective and comfortable a setup as possible.
This kind of treatment is so important--it's worth it to spend the extra dollars out of your own pocket to find the best mask for you. Or spend the extra frustrating effort and hassle to make the insurance company, the doctor and your equipment providers let you have really good equipment. The sad truth is, often we have to do our own research and be our own advocates. We can't count on the "professionals" to even be aware of the best machines and masks out there today.
Unfortunately, the doctor and the DME (home health care supplies provider - the place or person who set you up with a machine and mask) are not very attuned to what can make this kind of treatment more comfortable. If it's not comfortable, people are not likely to stick with it.
You'd think the medical profession would be right on top of that, but ....doctors are too busy and DMEs are profit driven to the point that what's best or most comfortable for the patient often is ignored. They sell what they have on their shelves. Where masks are concerned, they usually stock the "cheaper", less comfortable ones-- although you sure wouldn't know that by the price tags!
On the plus side, while you're struggling with finding that "best setup for you", you're hopefully getting the kind of treatment that lets you breathe during the night - keeping your oxygen levels up. It can take time to get all the pieces of the puzzle in place (machine, mask, controlling air leaks, controlling rainout, making the environment as conducive to sleep as possible, dealing with other health issues, good mattress to sleep on, etc.) You'd think just going to sleep should be easy. But getting "good sleep" takes some figuring out.
You'll get there - you've taken several good steps already...getting the sleep study done....and finding this message board. You'll find a lot of help here to make the whole thing work better. Good luck!
1. at first we are trading one kind of sleep disruption (apneas/hypopneas - our "sleep apnea" problems) for another kind of disruption--that of getting used to all this equipment and trying to sleep in a completely new way.
2. not having found a comfortable mask yet. Which ones are comfortable? That depends on the person, but as snoozin said, a search for topics about masks will turn up a lot of ideas and opinions on which are generally considered more comfortable than others.
3. mouth leaks - it doesn't matter how comfortable a mask is, if you are leaking air out of your mouth or out from between closed lips as air puffs, the treatment pressure is not going where it's needed. It's not keeping the throat open if the air is gushing out the mouth. If that's a problem and you can't find a way to stop the mouth leaks, a full face mask (covers nose and mouth, doesn't cover the entire face) is a solution.
4. not having found a comfortable machine yet. An Autopap, especially the REMstar Auto with C-Flex, works well for many people who don't really have to have the full prescribed pressure blowing at them all night. An auto will vary the pressure according to what you actually need while you sleep. If the Auto also has the C-Flex feature, you get even more relief from pressure, since C-flex will drop the pressure some each time you exhale. However, people who absolutely have to have a high pressure most of the night, would get more comfort from a BiPap (a bi-level machine that delivers a single pressure for inhalation and a lower pressure for exhalation.)
5. this is often overlooked - sometimes it could be a poor mattress, or even a good mattress that's lost its oomph after so many years.
6. harder to pinpoint - could be other underlying health conditions (arthritis, acid reflux, or any number of ailments) that cause sleep disruptions even if the cpap treatment itself is going well.
7. also hard to nail down - could be environmental factors like noises in the house (perhaps a tv going in another room, icemaker clinking in the night, dog thump-scratching beside bed) or from the outside (neighbor's dog barking, squirrels running across roof, old house creaking, noisy furnace kicking in periodically.) Things like that could keep arousing a person up out of the deeper sleep stages without waking them up enough to be aware of it. Sometimes we become accustomed to environmental sounds after awhile (think of people living near a train track or airport, who gradually "tune out" those sounds over time.)
No matter how long a person "has been on cpap", if the treatment itself is not fairly comfortable to sleep with, sleep disruptions of one kind or another will still be there and will prevent you from getting good sleep. You can't really start counting "I've had x number of days on treatment", imho, until you're sure you've got as effective and comfortable a setup as possible.
This kind of treatment is so important--it's worth it to spend the extra dollars out of your own pocket to find the best mask for you. Or spend the extra frustrating effort and hassle to make the insurance company, the doctor and your equipment providers let you have really good equipment. The sad truth is, often we have to do our own research and be our own advocates. We can't count on the "professionals" to even be aware of the best machines and masks out there today.
Unfortunately, the doctor and the DME (home health care supplies provider - the place or person who set you up with a machine and mask) are not very attuned to what can make this kind of treatment more comfortable. If it's not comfortable, people are not likely to stick with it.
You'd think the medical profession would be right on top of that, but ....doctors are too busy and DMEs are profit driven to the point that what's best or most comfortable for the patient often is ignored. They sell what they have on their shelves. Where masks are concerned, they usually stock the "cheaper", less comfortable ones-- although you sure wouldn't know that by the price tags!
On the plus side, while you're struggling with finding that "best setup for you", you're hopefully getting the kind of treatment that lets you breathe during the night - keeping your oxygen levels up. It can take time to get all the pieces of the puzzle in place (machine, mask, controlling air leaks, controlling rainout, making the environment as conducive to sleep as possible, dealing with other health issues, good mattress to sleep on, etc.) You'd think just going to sleep should be easy. But getting "good sleep" takes some figuring out.
You'll get there - you've taken several good steps already...getting the sleep study done....and finding this message board. You'll find a lot of help here to make the whole thing work better. Good luck!
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Water dripping on your nose. It's called "rainout" and is condensation from warm water vapor from your heated humidifier hitting a cold surface and condensing into water droplets. Drip, drip! A for sure "waker-upper".
That cold surface can be the inside of the long air hose (even if you have the air hose covered) or it could be the cold short connector tube that some masks have, or even the cold plastic shell of the mask.
Some remedies:
Use an insulated hose cover. You can buy those or make your own.
Set the humidifier down near the floor so that more of the hose is headed downward.
Drape the main air hose over the headboard so that most of the condensation will roll back into the humidifier instead of rolling toward your hose.
Get as much of the main hose as you can into bed and under the covers with you, to keep the hose warmer.
Turn down the heat on the humidifier.
Raise the temperature in the bedroom.
But...the #1 best solution to stopping rainout, in my opinion is.... get the Aussie heated hose. You won't have to do any of those other things. The heated hose used with your heated humidifier will completely prevent rainout in most cases. It's not available at home health care places. Can be ordered online from this site:
sleepzone.com.au
To be able to use the heated hose in the U.S., go to Radio Shack and get a 12 volt 1 amp DC converter (Radio Shack part# 273-1776) and an "M" adapter plug. The converter is about $20 at Radio Shack.
There's a tiny plug on the end of the heated hose wire. Plug the heated hose into the tiny "M" adapter, plug the tiny "M" adapter into the tiny plug on the DC converter, and plug the converter into your wall electrical outlet just like you'd plug in a lamp. All the connections are simple steps involving plugs. No "loose wires" to be wired together at all.
The heated hose is definitely worth the money if you want to really, really stop rainout as much as possible.
That cold surface can be the inside of the long air hose (even if you have the air hose covered) or it could be the cold short connector tube that some masks have, or even the cold plastic shell of the mask.
Some remedies:
Use an insulated hose cover. You can buy those or make your own.
Set the humidifier down near the floor so that more of the hose is headed downward.
Drape the main air hose over the headboard so that most of the condensation will roll back into the humidifier instead of rolling toward your hose.
Get as much of the main hose as you can into bed and under the covers with you, to keep the hose warmer.
Turn down the heat on the humidifier.
Raise the temperature in the bedroom.
But...the #1 best solution to stopping rainout, in my opinion is.... get the Aussie heated hose. You won't have to do any of those other things. The heated hose used with your heated humidifier will completely prevent rainout in most cases. It's not available at home health care places. Can be ordered online from this site:
sleepzone.com.au
To be able to use the heated hose in the U.S., go to Radio Shack and get a 12 volt 1 amp DC converter (Radio Shack part# 273-1776) and an "M" adapter plug. The converter is about $20 at Radio Shack.
There's a tiny plug on the end of the heated hose wire. Plug the heated hose into the tiny "M" adapter, plug the tiny "M" adapter into the tiny plug on the DC converter, and plug the converter into your wall electrical outlet just like you'd plug in a lamp. All the connections are simple steps involving plugs. No "loose wires" to be wired together at all.
The heated hose is definitely worth the money if you want to really, really stop rainout as much as possible.
-
Janelle
I've been on APAP since early dec. too. It took about 2 months before I noticed any improvement and then it was very subtle. I was still getting very sleepy after lunch and needed naps to get through until bedtime. Then suddenly, when I laid down in the afternoon I didn't sleep, and then I felt no need for a nap. This was all very gradual. I still wasn't sleeping through the night, maybe only 5 hours total, waking up around 12, then again around 2:30 having to stay up for an hour on the computer reading email, playing solitaire then going back to bed for another 2 hours until regular time to get up at 5:45. I was also still getting sleepy driving for more than an hour and had to take Focalin (an ADD drug) to stay alert.
My sleep doctor just prescribed a drug called Neutronin that is supposed to help me get more straight hours of sleep and so far it seems to be working. I've noticed no side effects and have been on it for about a week.
I usually have no trouble going to sleep. But I do have Ambien for those nights where I do.
There are many things, as Rested Gal pointed out, that wake you up. I have lower back pain from herniated disks that will wake me up when my pain med wears off. But being in too warm a room will also cause me to wake up or have trouble going to sleep. It doesn't help rainout much but sleeping in a cooler room helps sleep--that's why the sleep study rooms are so cold. I use a hose cover made of Polar Fleece on my hose and the hose on my nasal pillow Swift, as well, and have no rainout at all since. It was amazing at how much warmer the air was coming from the mask when I started using it, and I've gotten where I really like the warm air.
In the summer I'll probably turn the heat down, since cooler air might be more relaxing then.
My sleep doctor just prescribed a drug called Neutronin that is supposed to help me get more straight hours of sleep and so far it seems to be working. I've noticed no side effects and have been on it for about a week.
I usually have no trouble going to sleep. But I do have Ambien for those nights where I do.
There are many things, as Rested Gal pointed out, that wake you up. I have lower back pain from herniated disks that will wake me up when my pain med wears off. But being in too warm a room will also cause me to wake up or have trouble going to sleep. It doesn't help rainout much but sleeping in a cooler room helps sleep--that's why the sleep study rooms are so cold. I use a hose cover made of Polar Fleece on my hose and the hose on my nasal pillow Swift, as well, and have no rainout at all since. It was amazing at how much warmer the air was coming from the mask when I started using it, and I've gotten where I really like the warm air.
In the summer I'll probably turn the heat down, since cooler air might be more relaxing then.
Do whatever you can to try out different masks.
Do you normally breathe poorly through your nose? If so, this is something you may need to address. Some folks need to use a full face mask.
Do you have an auto titrating machine or straight cpap? Sleep studies don't always get the pressure right the first time. If you have a cpap set at a single pressure, you should ask for an in-home sleep study with an auto titrating machine to see if your pressure needs are different from what the sleep study found.
Keep researching. Good luck
Tom
Do you normally breathe poorly through your nose? If so, this is something you may need to address. Some folks need to use a full face mask.
Do you have an auto titrating machine or straight cpap? Sleep studies don't always get the pressure right the first time. If you have a cpap set at a single pressure, you should ask for an in-home sleep study with an auto titrating machine to see if your pressure needs are different from what the sleep study found.
Keep researching. Good luck
Tom
8 posts
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