Questions from a newbie
-
jpek
Questions from a newbie
Hi, folks. I was diagnosed with sleep apnea about two months ago. Still sorting out all my options and even the diagnosis itself. The apnea is not severe (16 occurrences per hour) but there are a few fairly long stretches of time where I stop breathing. Anyway, I'm pursuing both options of the dental device (which I would prefer) and the CPAP, which I just got.
So far, I'm not in love. The only reason so far why I haven't run screaming from it in the other direction is that I have been warned that it will need adjusting and I will need support. But I haven't even tried sleeping with it yet. I can't imagine doing it. Right now I'm just sitting at my computer with it plugged in (hope my housemate doesn't come home LOL!). There are a zillion little and big problems. To wit:
1) I have the nose pillow and one of the nostrils periodically somehow blocks up. I'm pretty sure if I slept in it and turned at a weird angle it might get blocked off entirely.
2) If I open my mouth at all -- and after a life time of breathing about half through my mouth that's hard not to do (it's actually unpleasant to keep it all the way shut) it starts blowing air through my mouth.
3) More unpleasant, if I ever try to take a deep breath through my mouth (which occasionally I'm in the habit of doing because my nose gets stuffed up) it feels like I'm suffocating (the air is going the other way!)
4) If I remove the nose pillow temporarily to take a drink of water air starts blowing unpleasantly in my eye or something.
5) I'm pretty sure if I slept with it in it would chafe my nostrils. It already feels somewhat uncomfortable.
6) I'm pretty sure all the gear on my face would get hot on a hot day.
7) For medical reasons I sleep with a set of modified blue-blocking glasses -- I've taken off the ear pieces and attached elastic to them. I'm wearing them now and the machine is periodically fogging them up.
I'm not sure how to tell if the pressure is too high.
9) I'm getting a sinus headache from using it for 45 minutes.
10) It could be that the nose pillow thing isn't right for me, but I've been told the other nose things has gear that would interfere with my glasses at night. That's because for comfort reasons I often hitch my glasses up for part of the night and the other mask (at least for the machine I have) apparently has gear on the forehead which would interfere with the trajectory of the glasses.
11) If I do manage to get used to the CPAP I have concerns about getting "addicted" to it. In a conversation with a friend she mentioned that the brain builds up some defenses against apnea, but, once you start using the CPAP the defenses go away and then sleeping without one can have really damaging consequences. If that's true, I'd like to know how damaging.
Even with all the admonitions that people with apnea should be using their machines regularly, I just don't think it's a good idea to get completely hooked on a machine that weighs a lot, takes up a lot of room and uses electricity. I mean, hell, all kinds of things happen in life that force us to "go off the grid" or just be separated from the machine for a period of time. What if there's an earthquake (I live in earthquake country) and the electricity goes out for a week? How serious are the consequences?
So, those are the concerns I can think of today. I'm sure I will think of more as I get to know the machine better. Any help or advice much appreciated. I'm just at the beginning of trying to learn my way here.
So far, I'm not in love. The only reason so far why I haven't run screaming from it in the other direction is that I have been warned that it will need adjusting and I will need support. But I haven't even tried sleeping with it yet. I can't imagine doing it. Right now I'm just sitting at my computer with it plugged in (hope my housemate doesn't come home LOL!). There are a zillion little and big problems. To wit:
1) I have the nose pillow and one of the nostrils periodically somehow blocks up. I'm pretty sure if I slept in it and turned at a weird angle it might get blocked off entirely.
2) If I open my mouth at all -- and after a life time of breathing about half through my mouth that's hard not to do (it's actually unpleasant to keep it all the way shut) it starts blowing air through my mouth.
3) More unpleasant, if I ever try to take a deep breath through my mouth (which occasionally I'm in the habit of doing because my nose gets stuffed up) it feels like I'm suffocating (the air is going the other way!)
4) If I remove the nose pillow temporarily to take a drink of water air starts blowing unpleasantly in my eye or something.
5) I'm pretty sure if I slept with it in it would chafe my nostrils. It already feels somewhat uncomfortable.
6) I'm pretty sure all the gear on my face would get hot on a hot day.
7) For medical reasons I sleep with a set of modified blue-blocking glasses -- I've taken off the ear pieces and attached elastic to them. I'm wearing them now and the machine is periodically fogging them up.
I'm not sure how to tell if the pressure is too high.
9) I'm getting a sinus headache from using it for 45 minutes.
10) It could be that the nose pillow thing isn't right for me, but I've been told the other nose things has gear that would interfere with my glasses at night. That's because for comfort reasons I often hitch my glasses up for part of the night and the other mask (at least for the machine I have) apparently has gear on the forehead which would interfere with the trajectory of the glasses.
11) If I do manage to get used to the CPAP I have concerns about getting "addicted" to it. In a conversation with a friend she mentioned that the brain builds up some defenses against apnea, but, once you start using the CPAP the defenses go away and then sleeping without one can have really damaging consequences. If that's true, I'd like to know how damaging.
Even with all the admonitions that people with apnea should be using their machines regularly, I just don't think it's a good idea to get completely hooked on a machine that weighs a lot, takes up a lot of room and uses electricity. I mean, hell, all kinds of things happen in life that force us to "go off the grid" or just be separated from the machine for a period of time. What if there's an earthquake (I live in earthquake country) and the electricity goes out for a week? How serious are the consequences?
So, those are the concerns I can think of today. I'm sure I will think of more as I get to know the machine better. Any help or advice much appreciated. I'm just at the beginning of trying to learn my way here.
- zoocrewphoto
- Posts: 3732
- Joined: Mon Apr 30, 2012 10:34 pm
- Location: Seatac, WA
Re: Questions from a newbie
Welcome to the group.
A couple things. One, I recommend the Quattro FX mask. It is a full face mask which allows you to have your mouth open with no problems. It does NOT have a forehead piece like many others. My mom wears an eye mask with hers.
You mentioned that your sleep apnea is not severe. Your ahi is not severe, but if your apnea events are long, and you have bad oxygem desaturations, your sleep apnea could be severe. My mom has a much lower ahi than I do, but her events are often over 30 seconds, sometimes over a minute long, and her oxygen goes down much further than mine does. We are both severe, in different ways.
Be careful with dental devices. Ask lots of questions. Do your own research and verify information before you agree. Many dental appliances have a different version of success. In other words, many of them define success as a 50% reduction of ahi. This means that when they say it is successful in x amount of people, they could be referring to somebody going from an ahi of 80 to 40 which is still severe. Cpap machines define success as less than 5. So, my untreated ahi of 79 goes down to less than 2 with cpap treatment. That is true success.
When you have a chance, add your equipment (machine, mask) to your profile and add your pressure settings. I suspect you will need a different style of mask. And you may need changes in pressure once you get going and see how it works for you. Some people find that too low feels suffocating. Also, a sleep study doesn't always find the correct settings, so there may be some changes. Hopefully, you have a machine with data.
A couple things. One, I recommend the Quattro FX mask. It is a full face mask which allows you to have your mouth open with no problems. It does NOT have a forehead piece like many others. My mom wears an eye mask with hers.
You mentioned that your sleep apnea is not severe. Your ahi is not severe, but if your apnea events are long, and you have bad oxygem desaturations, your sleep apnea could be severe. My mom has a much lower ahi than I do, but her events are often over 30 seconds, sometimes over a minute long, and her oxygen goes down much further than mine does. We are both severe, in different ways.
Be careful with dental devices. Ask lots of questions. Do your own research and verify information before you agree. Many dental appliances have a different version of success. In other words, many of them define success as a 50% reduction of ahi. This means that when they say it is successful in x amount of people, they could be referring to somebody going from an ahi of 80 to 40 which is still severe. Cpap machines define success as less than 5. So, my untreated ahi of 79 goes down to less than 2 with cpap treatment. That is true success.
When you have a chance, add your equipment (machine, mask) to your profile and add your pressure settings. I suspect you will need a different style of mask. And you may need changes in pressure once you get going and see how it works for you. Some people find that too low feels suffocating. Also, a sleep study doesn't always find the correct settings, so there may be some changes. Hopefully, you have a machine with data.
_________________
| Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Resmed S9 autoset pressure range 11-17 |
Who would have thought it would be this challenging to sleep and breathe at the same time?
Re: Questions from a newbie
Hello and welcome. Here's my take on some of your concerns...
1) Are you saying the nasal pillow itself gets blocked? Maybe the size isn't optimal for you.
2) Yeah, mouth breathing can be a hard habit to break. Early on I used chin straps, denture sticky stuff between my lips, tape - all in an effort to not mouth breathe. If I had been totally unable to get air through my nose, I would have switched to a mask that allows for mouth breathing, but I breathed fine though my nose during the day so figured I should be able to at night. It was my preference to stick with the more minimalistic nasal pillows. Took some time to develop new habits, but I no longer need any external efforts and have no issues with mouth breathing. For me, I focused more on keeping a seal with the suction of my tongue against the roof of my mouth. As long as the seal is strong, my jaw can relax quite a bit before the seal breaks and allows air through. If it's too much effort, a full face mask makes it a non issue.
3) You may be surprised how you learn over time to manage the air. If you'd told me 7 years ago I'd be able to control the air coming in my nose and still open my mouth to take a deep breath, I wouldn't have believed it. But I do remember how all that air rushing every which way was disconcerting.
4) Even after all these years I don't like the air blowing all over if the mask is displaced. I turn the machine off if removing the mask. I also don't turn it on till the pillows are securely in place. I feel ya on that one.
5) Some masks have softer pillows than others, and I remember tenderness and once even a raw sore with a particular mask. I've seen others on here recommend a product called Lanosil, a cream used by nursing mothers, to soothe and protect the nares. Some masks have adjustable nasal pillows so a slight position change for a while might help, or maybe a different size pillows, or loosening the straps.
6) Yep.
7) Hopefully foggy glasses won't be much of an issue while sleeping, except for when you first wake up. But if vented air is the issue, consider the vent direction when choosing a new mask.
Some machines record and report treatment data that lets you know if your treatment is indeed therapeutic. Otherwise, you pretty much have to count on your prescribed pressure being accurate.
9) Experimenting with humidification might help.
10) There are dozens of mask styles out there. Some have nothing on the forehead. Someone will probably come along and let you know which mask they use that works with glasses.
11) I've heard that discussion about the body's defenses coping with sleep apnea being diminished by CPAP use. I don't doubt there's some truth to that. Although the body may develop some defenses, I'm guessing those defenses are not stopping all of the damage done by sleep apnea, but rather are survival mechanisms that may or may not be sufficient for life and health. I mean, if they are, why would anybody treat their sleep apnea? As far as dependency on CPAP, I readily admit I am. I do not lay down and sleep without it - ever. If I on rare occasion get stuck away from my machine, I sleep sitting straight up with my neck carefully supported. But the CPAP did not cause my dependency, my sleep apnea did. My nights before CPAP were horrific. I'll have to take my chances on what might happen in the future. I came to earthquake country a couple years ago and had similar concerns, but hey, I was in tornado country before. I will take my peaceful sleep these past 7 years and cross any other bridge if it becomes necessary. Some people have battery backups for temporary situations. Haven't done that though I would feel better about things if I had a plan in place.
At any rate, welcome to the board and good luck figuring out how you want to go forward. And thanks for giving me a way to work off that late cup of coffee. I think I can sleep now.
1) Are you saying the nasal pillow itself gets blocked? Maybe the size isn't optimal for you.
2) Yeah, mouth breathing can be a hard habit to break. Early on I used chin straps, denture sticky stuff between my lips, tape - all in an effort to not mouth breathe. If I had been totally unable to get air through my nose, I would have switched to a mask that allows for mouth breathing, but I breathed fine though my nose during the day so figured I should be able to at night. It was my preference to stick with the more minimalistic nasal pillows. Took some time to develop new habits, but I no longer need any external efforts and have no issues with mouth breathing. For me, I focused more on keeping a seal with the suction of my tongue against the roof of my mouth. As long as the seal is strong, my jaw can relax quite a bit before the seal breaks and allows air through. If it's too much effort, a full face mask makes it a non issue.
3) You may be surprised how you learn over time to manage the air. If you'd told me 7 years ago I'd be able to control the air coming in my nose and still open my mouth to take a deep breath, I wouldn't have believed it. But I do remember how all that air rushing every which way was disconcerting.
4) Even after all these years I don't like the air blowing all over if the mask is displaced. I turn the machine off if removing the mask. I also don't turn it on till the pillows are securely in place. I feel ya on that one.
5) Some masks have softer pillows than others, and I remember tenderness and once even a raw sore with a particular mask. I've seen others on here recommend a product called Lanosil, a cream used by nursing mothers, to soothe and protect the nares. Some masks have adjustable nasal pillows so a slight position change for a while might help, or maybe a different size pillows, or loosening the straps.
6) Yep.
7) Hopefully foggy glasses won't be much of an issue while sleeping, except for when you first wake up. But if vented air is the issue, consider the vent direction when choosing a new mask.
Some machines record and report treatment data that lets you know if your treatment is indeed therapeutic. Otherwise, you pretty much have to count on your prescribed pressure being accurate.
9) Experimenting with humidification might help.
10) There are dozens of mask styles out there. Some have nothing on the forehead. Someone will probably come along and let you know which mask they use that works with glasses.
11) I've heard that discussion about the body's defenses coping with sleep apnea being diminished by CPAP use. I don't doubt there's some truth to that. Although the body may develop some defenses, I'm guessing those defenses are not stopping all of the damage done by sleep apnea, but rather are survival mechanisms that may or may not be sufficient for life and health. I mean, if they are, why would anybody treat their sleep apnea? As far as dependency on CPAP, I readily admit I am. I do not lay down and sleep without it - ever. If I on rare occasion get stuck away from my machine, I sleep sitting straight up with my neck carefully supported. But the CPAP did not cause my dependency, my sleep apnea did. My nights before CPAP were horrific. I'll have to take my chances on what might happen in the future. I came to earthquake country a couple years ago and had similar concerns, but hey, I was in tornado country before. I will take my peaceful sleep these past 7 years and cross any other bridge if it becomes necessary. Some people have battery backups for temporary situations. Haven't done that though I would feel better about things if I had a plan in place.
At any rate, welcome to the board and good luck figuring out how you want to go forward. And thanks for giving me a way to work off that late cup of coffee. I think I can sleep now.
_________________
| Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
My SleepDancing Video link https://www.youtube.com/watch?v=jE7WA_5c73c
Re: Questions from a newbie
Welcome jpek.kteague wrote: I've heard that discussion about the body's defenses coping with sleep apnea being diminished by CPAP use. I don't doubt there's some truth to that. Although the body may develop some defenses, I'm guessing those defenses are not stopping all of the damage done by sleep apnea, but rather are survival mechanisms that may or may not be sufficient for life and health.
I agree with kteague and I would say that those defenses or survival mechanisms are not only failing to stop all the damage of sleep apnea but they are damaging in and of themselves -- we resume breathing after our body goes into fight-or-flight mode -- adrenaline increases, heart rate increases, etc. Our bodies were not designed to be in chronic fight-or-flight mode, not while awake and definitely not while we sleep.
I don't think the term addiction is relevant here. If you have OSA you are already dependent upon some kind of therapy to keep breathing at night, whether or not you ever use that therapy.
Do stick around and see what you can do to make PAP work. It's the middle of the night here, but in the a.m. lots of folks will come by with suggestions and more encouragement to offer.
Me neither.jpek wrote:So far, I'm not in love.
Sorry, couldn't resist... http://www.youtube.com/watch?v=2rgepWg4rzw
_________________
| Machine: AirSense 10 AutoSet with Heated Humidifer + Aifit N30i Nasal Mask Bundle |
| Additional Comments: SleepyHead-now-OSCAR software on Mac OSX Ventura |
Re: Questions from a newbie
Hi Jpek,
Welcome!
If you are interested in a dental device, I would visit this site, http://www.apneasupport.org/sleep-apnea ... n-f20.html and look for posts by sleep dent who is quite knowledgeable.
Also, check out this study which shows the chances of getting your AHI down to 5 or below at various AHI ranges.
https://advancedbrainmonitoring.app.box ... 7pjn8s11y4
For one with 16 per hour, you have a 60 percent chance, if you use an adjustable appliance which which the study said is the tap which sleep dentist likes alot.
In my opinion, if you go this route, the key in my opinion is to find a good sleep medicine dentist who is willing to go the extra mile to make your therapy successful. Sadly, there are alot of sharks out there.
But if you chose to stick with pap therapy, you have received excellent advice already and will find this forum to be very helpful.
Best of luck.
49er
Welcome!
If you are interested in a dental device, I would visit this site, http://www.apneasupport.org/sleep-apnea ... n-f20.html and look for posts by sleep dent who is quite knowledgeable.
Also, check out this study which shows the chances of getting your AHI down to 5 or below at various AHI ranges.
https://advancedbrainmonitoring.app.box ... 7pjn8s11y4
For one with 16 per hour, you have a 60 percent chance, if you use an adjustable appliance which which the study said is the tap which sleep dentist likes alot.
In my opinion, if you go this route, the key in my opinion is to find a good sleep medicine dentist who is willing to go the extra mile to make your therapy successful. Sadly, there are alot of sharks out there.
But if you chose to stick with pap therapy, you have received excellent advice already and will find this forum to be very helpful.
Best of luck.
49er
_________________
| Mask: SleepWeaver Elan™ Soft Cloth Nasal CPAP Mask - Starter Kit |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Use SleepyHead |
Re: Questions from a newbie
It seems a little premature to be writing off CPAP therapy at this point. If you search through this forum you'll find that nearly every CPAP user has encountered the same issues that you're facing. It can be intimidating to think of having to face them on a nightly basis, but be assured that they can be overcome. For me, it took me a full six months of tweaking and overcoming obstacles before I was able to go just one full night on CPAP. Now, when I slap my mask on at night, I don't even know it's there.
Dental devices have their allure and can be effective, especially for people like you with mild sleep apnea, but they too present challenges. Either way, if you're experiencing a sleep disorder that can negatively impact your health, it's worth it to at least give it the ol' college try.
P.S. Your fridge weighs a lot, takes up a lot of room & uses electricity
Dental devices have their allure and can be effective, especially for people like you with mild sleep apnea, but they too present challenges. Either way, if you're experiencing a sleep disorder that can negatively impact your health, it's worth it to at least give it the ol' college try.
P.S. Your fridge weighs a lot, takes up a lot of room & uses electricity
Re: Questions from a newbie
jpek wrote: So far, I'm not in love. The only reason so far why I haven't run screaming from it in the other direction is that I have been warned that it will need adjusting and I will need support. But I haven't even tried sleeping with it yet. I can't imagine doing it. Right now I'm just sitting at my computer with it plugged in (hope my housemate doesn't come home LOL!). There are a zillion little and big problems. To wit: .... (emphasis added)
A lot of people here are not in love with our machine, but we use it night after night because it beats the alternative.
You say you haven't even tried sleeping with the machine, but you've been using the machine (a lot) while awake. I think that is a major part of your problem. These machines are NOT designed to be used while we're awake; they are designed for sleep breathing. Our wake breathing is much different from our sleep breathing----we consciously control our wake breathing even if we're not thinking about it and makes it much more irregular than normal sleep breathing. When we concentrate on our wake breathing, it changes even more. And there's nothing like slapping a CPAP mask on your face to make you keenly aware of each and every breath you take .... And that can add to the discomfort of using the machine rather than making it seem more comfortable.
Seriously, if you are NOT claustrophobic, using the machine while awake "to get used to it" is just not needed. (If you are claustrophobic, using the machine during the daytime can be useful as way of conquering the fear and anxiety associated with the claustrophobia induced by putting the mask on your face.)
In your post, I see nothing about claustrophobia, and I see a lot about wake time discomfort while using the machine. I'm three years into PAPing and quite frankly I cannot stand to use my machine for more than 20 minutes if I am awake. If I'm asleep? I use it all night long without any problems (in the sense of keeping the mask on my nose and sleeping reasonably comfortably).
The very first thing you need to do it to try to get to sleep with the mask on for just one night. You need to make an honest attempt at getting to sleep: No watching the clock while keeping yourself awake and then declaring 20-30 minutes after going to bed, "I can't do this" and yanking the mask off. Here's what you really and truly need to do to get through the hump of the making yourself just use the machine for the first time at night when you are sleeping:
Step 1) Well before bedtime: Get all the equipment set up, fill the humidifier tank up, and prefit the mask. And then walk out of the bed room and do your best to forget about the CPAP for the rest of the evening. Seriously. Do something enjoyable to get your mind off the fact the CPAP mask and machine awaits in your bedroom.
Step 2) Wait until you are very sleepy to go to bed. Be aware that feeling sleepy is not the same as feeling tired or exhausted. You want to be sleepy when you go to bed. Climb in bed and pull the mask on and turn the machine on and do NOT look at the clock. Give yourself an adequate amount of time to fall asleep with the mask on but do NOT stare at the clock if you find yourself a bit restless.
Step 3) If you can't get to sleep after what feels like about 30 minutes or so (do NOT look at the clock to confirm the time), go ahead and take the mask off and get OUT of bed and go into another room and do something quiet and relaxing until you start to get sleepy. When you are sleepy enough to try masking up again, go back to bed and start over.
Repeat Steps 2 and 3 as needed----almost everyone will fall asleep by the second or third time they go back to bed.
Is this hard? Yes. Will it get easier with time? Yes. Is it worth the it? Yes.
_________________
| Machine: DreamStation BiPAP® Auto Machine |
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
- zoocrewphoto
- Posts: 3732
- Joined: Mon Apr 30, 2012 10:34 pm
- Location: Seatac, WA
Re: Questions from a newbie
robysue wrote: In your post, I see nothing about claustrophobia, and I see a lot about wake time discomfort while using the machine. I'm three years into PAPing and quite frankly I cannot stand to use my machine for more than 20 minutes if I am awake. If I'm asleep? I use it all night long without any problems (in the sense of keeping the mask on my nose and sleeping reasonably comfortably).
I'm with you. I do not like using it while awake. I can't watch tv with it on as I don't feel comfortable sitting upright with it on. But when I put it on at night, I an usually asleep in less than 10 minutes. I used to take much longer to fall asleep.
_________________
| Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Resmed S9 autoset pressure range 11-17 |
Who would have thought it would be this challenging to sleep and breathe at the same time?
Re: Questions from a newbie
Google nasal cycle. Most people breath through one nostril at a time. The "active" nostril switches on a regular basis and the "inactive" nostril feels as though it is congested even when it is not. When you are not paying attention to your breathing, you don't notice this cycle. But because you are using the CPAP while awake, you are focusing a whole lot of your conscious attention on your breathing and so you are now noticing a perfectly normal part of your breathing.jpek wrote:There are a zillion little and big problems. To wit:
1) I have the nose pillow and one of the nostrils periodically somehow blocks up. I'm pretty sure if I slept in it and turned at a weird angle it might get blocked off entirely.
If you are asleep with the machine on your nose, your body will adjust to its normal nasal cycle just fine.
You may need a full face mask instead of the nasal pillows for long term effective therapy. Or you may need to learn how to properly breathe through your nose.2) If I open my mouth at all -- and after a life time of breathing about half through my mouth that's hard not to do (it's actually unpleasant to keep it all the way shut) it starts blowing air through my mouth.
You probably don't do this in your sleep---sleep breathing is much more regular than wake breathing. And if it's only one or two breaths through your mouth, it probably won't wake you up. But if you breath through your mouth consistently when you are asleep you will either need to learn to breath through your nose (and use a chin strap or tape to encourage breathing through your nose) or you may need to use a full face mask that allows you to open your mouth without having the rush of air "going the other way")3) More unpleasant, if I ever try to take a deep breath through my mouth (which occasionally I'm in the habit of doing because my nose gets stuffed up) it feels like I'm suffocating (the air is going the other way!)
You don't regularly drink water in your sleep. If you wake up needing a drink of water, it's fine to turn the machine off, drink the water, and then turn the machine back on.4) If I remove the nose pillow temporarily to take a drink of water air starts blowing unpleasantly in my eye or something.
Lansinoh nipple cream to the rescue. Lansinoh is a pure lanoline cream sold to nursing mothers to soothe sore, dried out nipples. It works wonders on sore, chafed nostrils. A tiny bit is all you need. Use it in the daytime as well as at bedtime right before you mask up. A switch from nasal pillows to a nasal mask or a full face mask may also be more comfortable for you.5) I'm pretty sure if I slept with it in it would chafe my nostrils. It already feels somewhat uncomfortable.
Worry about hot days once summer returns. Once you get used to sleeping with the machine this will be less of a problem than you think. If it proves to be problematic, here are some solutions that CPAPers here actually use: Turn off the heated hose and the heated humidifier. Mask liners. Ice cubes in the humidifier tank. Crank the AC.6) I'm pretty sure all the gear on my face would get hot on a hot day.
When you are asleep, foggy glasses are NOT an issue because you are asleep. You are only noticing this because you are using the machine while you are awake and trying to look out of the glasses.7) For medical reasons I sleep with a set of modified blue-blocking glasses -- I've taken off the ear pieces and attached elastic to them. I'm wearing them now and the machine is periodically fogging them up.
What kind of a PAP machine are you using?I'm not sure how to tell if the pressure is too high.
The machine is not designed to be worn when you are awake. My guess is that all the sensory stuff from the machine and your concentration on how bad everything feels is triggering the headache. (I'm saying this as someone who is genuinely sympathetic---during the first three months of PAPing my migraines got quite a bit worse.)9) I'm getting a sinus headache from using it for 45 minutes.
There are both nasal masks and full face masks that do not have forehead supports now. Perhaps one of them would work.10) It could be that the nose pillow thing isn't right for me, but I've been told the other nose things has gear that would interfere with my glasses at night. That's because for comfort reasons I often hitch my glasses up for part of the night and the other mask (at least for the machine I have) apparently has gear on the forehead which would interfere with the trajectory of the glasses.
You do get used to sleeping with it and your body will resent sleeping without the machine after awhile. I learned that the hard way this summer when I had to sleep without my PAP for the first time in three years (on three different nights, no less).11) If I do manage to get used to the CPAP I have concerns about getting "addicted" to it. In a conversation with a friend she mentioned that the brain builds up some defenses against apnea, but, once you start using the CPAP the defenses go away and then sleeping without one can have really damaging consequences. If that's true, I'd like to know how damaging.
But it's not that you're "addicted". The old defenses come back immediately: The three nights I slept without my CPAP I tossed and turned and slept rather lightly due to OSA-related arousals. In other words, I slept the way I used to sleep all the time. But unlike the old days, the next morning I felt pretty shitty because I now know what a much more decent night's sleep feels like. It's more difficult to function after an apnea filled night of sleep because I'm more aware that such a night's sleep is not really a decent, restful night's sleep.
The consequences of sleeping without the machine for one week without electricity are one week of apnea filled sleep with one week of damage to the body from the night time battle to breath over a period of seven day.Even with all the admonitions that people with apnea should be using their machines regularly, I just don't think it's a good idea to get completely hooked on a machine that weighs a lot, takes up a lot of room and uses electricity. I mean, hell, all kinds of things happen in life that force us to "go off the grid" or just be separated from the machine for a period of time. What if there's an earthquake (I live in earthquake country) and the electricity goes out for a week? How serious are the consequences?
The consequences of sleeping without the machine all the time are a lifetime of apnea filled sleep with a life time of damage to the body from the night time battle to breath over a period decades and decades. With this comes an elevated risk of high blood pressure, serious heart disease, diabetes, stroke, and long term weight gain.
Apnea kills slowly----someone here once likened it to "the death by a thousand cuts". The damage to your body from being forced to not used the machine because of a week long power outage is quite limited compared to the long term damage your body sustains over years of not treating the apnea.
_________________
| Machine: DreamStation BiPAP® Auto Machine |
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: Questions from a newbie
Hi, folks. Sorry for the late followup. I'm just getting to know these forums (and also dealing with a lot of fatigue and other health problems these days) so I just found this thread with some responses!
I feel quite lost in the CPAP world at the moment. Not much progress to report. Here's what I can say. I added my equipment to my profile. Right now I think the settings are 7-11 or 7-13, can't remember which. I asked my doctor to write a prescription for lower pressure. They did, for 5-10, but now I need to get it reset, which I am told I can do on my own. So, I plan to check that out. Meanwhile, I still haven't tried my sleep mask since that first time. Now to follow up on everybody's comments. (In the interests of brevity I didn't respond to everyone, but I do appreciate everybody's help and advice.)
a) Zewcrewphoto, what does it mean that people feel suffocated by too low pressure? Like you wake up and feel like you can't breathe? That sounds really unpleasant.
b) For all the people who recommend different masks and different machines. How do you all make that work, financially and where do you purchase them? I mean, I have Medicare, and my machine is provided by Apria. They only have certain kinds of machines and certain masks that go with them. That limits my choices right there. And then Medicare limits them to issuing one mask at a time, which I have to try for three months! So, if my nasal pillow doesn't work, I guess I'm out of luck until three months are up. If I knew what worked for me and found an affordable option, I might pay for something out of pocket, but I don't want to spend a lot of money on something when I'm not even sure what I need.
c) kteague -- 1) Yes, it feels like one of the prongs of my nasal pillow sort of turns just a little bit in my nose sometimes and that's enough to block off the air. It may well be the wrong size for me but I don't know how to tell. 2) How do you create that seal? 4) So, how do you take a drink of water during the night? 5) How do you use the Lanosil? Do you put it inside your nose???
d) robysue -- actually I AM a bit claustraphobic, and it expresses itself partly when I sleep. I do appreciate what you're saying here but I don't think I could sleep with this device as it is right now (and as I am right now) to save my life. I'm not saying I won't use it, but right now it's unusable for sleeping. The sleep clinic that diagnosed me suggested I hang out with it and make it part of my night time routine even if I wasn't sleeping with it yet. So, that was my plan.
e)robysue again -- 1) My nose is usually somewhat congested so I breathe about half through my mouth. The nasal cycle: fascinating. Didn't know that. But how do you know that's the issue and that the air flow actually isn't being blocked? 3) My habit is to consciously open one corner of my mouth just a little bit when I am going to sleep. If I open it more the mouth gets dry and thirsty and I HATE waking up really thirsty. If I don't open it at all I wake myself up when trying to breathe out through my congested nose. 4) I drink a lot during the night especially as I'm first lying in bed, so I sure hope I figure out some alternative to always turning off the machine.
I feel quite lost in the CPAP world at the moment. Not much progress to report. Here's what I can say. I added my equipment to my profile. Right now I think the settings are 7-11 or 7-13, can't remember which. I asked my doctor to write a prescription for lower pressure. They did, for 5-10, but now I need to get it reset, which I am told I can do on my own. So, I plan to check that out. Meanwhile, I still haven't tried my sleep mask since that first time. Now to follow up on everybody's comments. (In the interests of brevity I didn't respond to everyone, but I do appreciate everybody's help and advice.)
a) Zewcrewphoto, what does it mean that people feel suffocated by too low pressure? Like you wake up and feel like you can't breathe? That sounds really unpleasant.
b) For all the people who recommend different masks and different machines. How do you all make that work, financially and where do you purchase them? I mean, I have Medicare, and my machine is provided by Apria. They only have certain kinds of machines and certain masks that go with them. That limits my choices right there. And then Medicare limits them to issuing one mask at a time, which I have to try for three months! So, if my nasal pillow doesn't work, I guess I'm out of luck until three months are up. If I knew what worked for me and found an affordable option, I might pay for something out of pocket, but I don't want to spend a lot of money on something when I'm not even sure what I need.
c) kteague -- 1) Yes, it feels like one of the prongs of my nasal pillow sort of turns just a little bit in my nose sometimes and that's enough to block off the air. It may well be the wrong size for me but I don't know how to tell. 2) How do you create that seal? 4) So, how do you take a drink of water during the night? 5) How do you use the Lanosil? Do you put it inside your nose???
d) robysue -- actually I AM a bit claustraphobic, and it expresses itself partly when I sleep. I do appreciate what you're saying here but I don't think I could sleep with this device as it is right now (and as I am right now) to save my life. I'm not saying I won't use it, but right now it's unusable for sleeping. The sleep clinic that diagnosed me suggested I hang out with it and make it part of my night time routine even if I wasn't sleeping with it yet. So, that was my plan.
e)robysue again -- 1) My nose is usually somewhat congested so I breathe about half through my mouth. The nasal cycle: fascinating. Didn't know that. But how do you know that's the issue and that the air flow actually isn't being blocked? 3) My habit is to consciously open one corner of my mouth just a little bit when I am going to sleep. If I open it more the mouth gets dry and thirsty and I HATE waking up really thirsty. If I don't open it at all I wake myself up when trying to breathe out through my congested nose. 4) I drink a lot during the night especially as I'm first lying in bed, so I sure hope I figure out some alternative to always turning off the machine.
- zoocrewphoto
- Posts: 3732
- Joined: Mon Apr 30, 2012 10:34 pm
- Location: Seatac, WA
Re: Questions from a newbie
At lower pressures, most people feel like there isn't enough air flow. It won't hurt us as there really is enough air, but it feels like not enough and people tend to take their mask off to escape the feeling. This usually happens at pressures of 4 and 5. Most people feel okay at 6 or above. Mine goes straight to 11, so I don't know how I would would feel at 4 or 5.jpek wrote:Hi, folks. Sorry for the late followup. I'm just getting to know these forums (and also dealing with a lot of fatigue and other health problems these days) so I just found this thread with some responses!
I feel quite lost in the CPAP world at the moment. Not much progress to report. Here's what I can say. I added my equipment to my profile. Right now I think the settings are 7-11 or 7-13, can't remember which. I asked my doctor to write a prescription for lower pressure. They did, for 5-10, but now I need to get it reset, which I am told I can do on my own. So, I plan to check that out. Meanwhile, I still haven't tried my sleep mask since that first time. Now to follow up on everybody's comments. (In the interests of brevity I didn't respond to everyone, but I do appreciate everybody's help and advice.)
a) Zewcrewphoto, what does it mean that people feel suffocated by too low pressure? Like you wake up and feel like you can't breathe? That sounds really unpleasant.
Many people buy online from our host and get return insurance which allows you to return the mask and only lose the cost of the insurance. Check with your DME as most still allow you to try and exchange a mask. Medicare just doesn't pay for more than one every 3 months. The DME will often switch out a mask without rebilling, so you are are still buying only one mask. Also, any mask can go with any machine, so you can try any mask that is available. Now, some DMEs will only stock certain masks, but you can usually find a different DME to get your equipment for you. You can ask Medicare for a list of providers in your area.
b) For all the people who recommend different masks and different machines. How do you all make that work, financially and where do you purchase them? I mean, I have Medicare, and my machine is provided by Apria. They only have certain kinds of machines and certain masks that go with them. That limits my choices right there. And then Medicare limits them to issuing one mask at a time, which I have to try for three months! So, if my nasal pillow doesn't work, I guess I'm out of luck until three months are up. If I knew what worked for me and found an affordable option, I might pay for something out of pocket, but I don't want to spend a lot of money on something when I'm not even sure what I need.
d) robysue -- actually I AM a bit claustraphobic, and it expresses itself partly when I sleep. I do appreciate what you're saying here but I don't think I could sleep with this device as it is right now (and as I am right now) to save my life. I'm not saying I won't use it, but right now it's unusable for sleeping. The sleep clinic that diagnosed me suggested I hang out with it and make it part of my night time routine even if I wasn't sleeping with it yet. So, that was my plan.
Some people get medicine to help with the sleeping or anxiety while adjusting. Some people wear it while awake and watching tv to get used to it. Not to add pressure, but medicare requires compliance. If you aren't using it for 4 hours or more per 24 hour period for 70% of nights in a couple months, you will lose the machine. That is why they rent before purchasing, to make sure that you are using it. Wearing it while awake will count toward compliance and help you get used to it.
e)robysue again -- 1) My nose is usually somewhat congested so I breathe about half through my mouth. The nasal cycle: fascinating. Didn't know that. But how do you know that's the issue and that the air flow actually isn't being blocked? 3) My habit is to consciously open one corner of my mouth just a little bit when I am going to sleep. If I open it more the mouth gets dry and thirsty and I HATE waking up really thirsty. If I don't open it at all I wake myself up when trying to breathe out through my congested nose. 4) I drink a lot during the night especially as I'm first lying in bed, so I sure hope I figure out some alternative to always turning off the machine.
Sounds like you really need a full face mask or a hybrid mask. You will lose all your therapy out your mouth. The dry mouth is only a small problem. The fact that you are losing air out your mouth means that the machine cannot do its job. I am a mouth breather, so I use a full face mask. I can sleep with my mouth open all night long with no problem. I do occasionally get a little dry mouth, but nothing bad.
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| Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Resmed S9 autoset pressure range 11-17 |
Who would have thought it would be this challenging to sleep and breathe at the same time?



