Problems with my BiPap. I'm completely new to this. Advice?

I've had my BiPap and Oxygen concentrator for about a week now, and I can't really tell if its done anything yet. I guess I have to get used to it, but I'm a complete newbie.

First of all, I have trouble breathing with the mask on. If I try to take a deep breathe, even with the air pushing into my mouth and nose, I feel like I can't get a good breathe of air into my lungs. So I have to take deep breathes more often which keeps me awake. Every once in a while I'll get a nice good deep breathe with the mask on, but most of the time it feels like I can't get enough air no matter how hard I try. Sometimes I just get an urge to take the mask off, take a deep breathe, and put it back on. I have no problem taking deep breathes when I'm not wearing the mask.

The biggest problem though is that it sometimes wakes me up in the middle of the night. I already have a hard time falling asleep if its before 7am. Also I have the hardest time falling asleep if it's hot. So sometimes it will wake me up at like 2 or 3am, my room will be really hot because its summer in Florida and the Oxygen Concentrator generates a lot of heat. Not only that, but the air thats blowing into my nose and mouth will be really hot, and that bothers me. I'll sit there awake and not able to go back to sleep, feeling really hot and anxious because of it.

Not only that, but I'm a drooler. Always have been. Was kind of hoping I only drooled because of my sleep apnea, but this turned out not to be the case. So I drool right into the mask every night. So when I wake up in the middle of the night, my mask and chin is completely covered in drool and its really disgusting. Smells bad, and leaves white crust on the inside of the mask. I try to clean it everyday, but the smell lingers and theres some spots I can't even reach becuase theyre really small creases.

With all that stuff, I don't know if its even worked at all. Most nights it wakes me up and I can't get back to sleep so I get 5-6 hours of sleep. One time I got lucky and it woke me up exactly 8 hours after going to sleep, but I still felt tired all day. Then another day it somehow let me sleep for 11 hours. Am I just supposed to get used to it before it starts helping?

Why dont you try a nasal mask for a start.Things will get better. Its taken me 4 1/2 months and I am starting to feel more comfortable with the mask.

FishOil, help us out a bit by telling us what brand and model PAP you are using. And what mask you are using.

Go to your User Control Panel (upper left), select Profile, select Edit Equipment, type in the information and then select Text and Submit. That way we won't have to keep asking and you won't have to keep telling us which brand and model you are using.

We can be of more help if we know what equipment you are using.

Yep I just got done doing that Sorry, I'm new. I can't get a nose mask because I'm a mouth breather. Not during the day, but when I sleep. I'll breathe through my nose but as soon as I start falling asleep, my mouth automatically opens.

Try using a mask liner to sop up the drool. Go to remzzz.com or padacheek.com for them. You can also make them out of an old white well washed t-shirt........
just lay the t-shirt out, put your mask on it face down, draw the outline but add about 3/4 of an inch all round. Take the mask off, cut the liner out, also cut a mouth hole.........voila, you have a mask liner that you can wash. When I was first into this therapy,I did the same thing, so I made a bunch of them so I would have them on hand to change up each day. Once I got wise, I bought a liner from Padacheek.com and haven't looked back....which reminds me I need to call Karen and order a new one.

FishOil,

Welcome to the HoseHead Club.

I also bid you a sad, and hopefully tentative welcome to the CPAP & Insomnia club.

It does get better.


You write:

FishOil wrote: With all that stuff, I don't know if its even worked at all. Most nights it wakes me up and I can't get back to sleep so I get 5-6 hours of sleep. One time I got lucky and it woke me up exactly 8 hours after going to sleep, but I still felt tired all day. Then another day it somehow let me sleep for 11 hours. Am I just supposed to get used to it before it starts helping?

First, yes, you do have to get used to the machine before it will start "helping" in any kind of noticeable way. For most people, it takes several weeks to a few months to start noticing some benefits to sleeping with the machine. A few of us are unlucky enough to have adjustment periods that last many, many months. And sometimes the adjustment problem is tied to us just being super sensitive to the sensory stimuli coming from the machine.

Keeping a journal of how you feel each day may help you notice subtle signs that the xPAP is beginning to make a difference. For me the first positive sign that xPAP might be doing me some good was that I started to wake up with little or no pain in my hands and feet. Other positive changes have been very slow to happen, but they are there if I look (hard) for them.

Getting 5--6 hours of sleep at the beginning is doing pretty good. I've been on xPAP for almost 11 months now and I'm only now beginning to get 5 to 5 1/2 hours of sleep on a regular basis.

Lots of folks feel pretty tired at the beginning of xPAP. Lots of theories about why it happens. Some people say that you've got a sleep debt to pay off. Personally, I think for me, it was more that my body went into extra high vigilance mode because it was having so many problems simply dealing with the sensory overload. And that triggered pretty bad insomnia for me. Only after I was able to start bringing the insomnia and my migraine headaches under control was I able to start feeling some real benefit to using the machine.

FishOil,

You also noted many current issues you are struggling with. Here are some specific suggestions about what you might want to try to deal with many of those issues to increase your comfort when sleeping with the mask.

You write:

FishOil wrote: First of all, I have trouble breathing with the mask on. If I try to take a deep breathe, even with the air pushing into my mouth and nose, I feel like I can't get a good breathe of air into my lungs. So I have to take deep breathes more often which keeps me awake. Every once in a while I'll get a nice good deep breathe with the mask on, but most of the time it feels like I can't get enough air no matter how hard I try. Sometimes I just get an urge to take the mask off, take a deep breathe, and put it back on. I have no problem taking deep breathes when I'm not wearing the mask.

You haven't told us what your IPAP and EPAP pressure settings are. But trouble feeling like you're not able to get enough air can indicate that you might be more comfortable with (slightly) higher pressure settings. Or (perversely) occasionally the problem is that you're really having trouble exhaling enough air out of your lungs to be able to get a nice deep breath in on the next breath. Either way, I think talking to the doc about a pressure adjustment might be in order---particularly if your IPAP and/or EPAP is very, very low or your EPAP is very, very high.

The biggest problem though is that it sometimes wakes me up in the middle of the night. I already have a hard time falling asleep if its before 7am.

I assume you mean ONE AM and not SEVEN AM since you go on to say:

Also I have the hardest time falling asleep if it's hot. So sometimes it will wake me up at like 2 or 3am, my room will be really hot because its summer in Florida and the Oxygen Concentrator generates a lot of heat. Not only that, but the air thats blowing into my nose and mouth will be really hot, and that bothers me. I'll sit there awake and not able to go back to sleep, feeling really hot and anxious because of it.

Ok, you've got the following things to deal with:

• Trouble falling asleep at the time you WANT to go to sleep. Some questions about this: Before starting xPAP, did you have trouble falling asleep before 1:00 AM? What time do you WANT to be asleep by each night? And if you had trouble before starting xPAP, what would you do if you couldn't fall asleep? And what do you do NOW? Go to bed early and toss and turn and fight with the machine trying to get to sleep or an hour or more? Or simply put off going to bed until 1:00 or whenever you're finally sleepy enough to fall asleep with the mask on?
• Trouble sleeping when it's hot and humid. Common problem. And tough to fix unless you have A/C and can turn the thermostat way down at night. (That's what I've had to resort to now that we bought a new central A/C unit for the house.) Have you got A/C? What's the night time setting? If you don't have A/C, can you sleep under a fan? And sometimes a nice shower before bedtime helps with the hot and humid problems because at least the sweat is temporarily washed off your skin.
• O2 Concentrator is generating enough heat to add to the "hot" bedroom problem. I don't use an O2 concentrator, but my MIL does. She moved her O2 unit to a different room across the hall and simply uses a very long O2 tube. Would that work for you? Her unit is in her spare bedroom, where we've slept many times. Can't say I've ever noticed heat coming from that machine. But again, her place is well air conditioned. In addition to moving the unit, it might be worth calling the DME about the O2 unit and reporting that it seems to be producing a fair amount of heat.
• "So sometimes it will wake me up at like 2 or 3am". You need to identify more precisely what the it in this sentence refers to: The BiPAP? The heat in the bedroom? The O2 generator? Anxiety? If you are falling asleep around 1:00 AM, the immediate trigger of the wake could be that you are waking at the end of a REM cycle, which is not that uncommon. But because of everything else that's getting under your skin about the BiPAP, the O2 generator, and the hot weather, once you're awake you notice the wake more and you become MORE alert and have trouble getting back to sleep instead of just being able to turn over and quickly getting back to sleep.
• The sensation of hot air blowing down your airway. This one may be relatively straightforward to address: Try turning the humidifier setting DOWN. Or run the humidifier in passover mode: In other words, have water in the tank, but use the 0 setting for the humidifier. If you don't have A/C, the air being slightly compressed by the BiPAP likely already has plenty of humidity in it. And some folks just don't need as much humidity as others. If you can turn the humidifier down without making your nose dry, that's probably the best thing to do here.
• "I'll sit there awake and not able to go back to sleep, feeling really hot and anxious because of it." Once you're awake at 2:00 or 3:00 in the morning, there is no point in lying in bed unable to get back to sleep because you are too hot and too anxious. You are better off getting out of bed, going into a different, hopefully cooler room, and doing something to regroup yourself and settle yourself down. I'd suggest sitting in the dark for a few minutes in the coolest room in your house and letting your mind wander.
  
  However, if all you can do when sitting in the dark is worry (worry about how hot and uncomfortable you are with the hose on your nose; worry about how little sleep you seem to be getting; worry about how soon you have to get up; and so on), THEN you need to do something else when you're out of bed to take your mind off the situation. Sipping something cool, uncaffeinated and uncarbonated might help. Reading a boring book might help. Listening to some soothing music might help. But DON'T get on the computer or turn the TV on since they are likely to make it harder to get back to sleep. Return to bed after you've cooled down (physically) and no longer feel hot AND after you've cooled down (emotionally) and no longer feel anxious about putting the machine back on your nose.
• Anxiety issues about the mask. It takes some people some real work in acclimating themselves to the mask. A common suggestion is to wear the mask when you are awake and doing something like watching TV or reading to help your body get used to how it feels. This might help you. But do this work FAR AWAY from bedtime.

Not only that, but I'm a drooler. Always have been. Was kind of hoping I only drooled because of my sleep apnea, but this turned out not to be the case. So I drool right into the mask every night. So when I wake up in the middle of the night, my mask and chin is completely covered in drool and its really disgusting. Smells bad, and leaves white crust on the inside of the mask. I try to clean it everyday, but the smell lingers and theres some spots I can't even reach becuase theyre really small creases.

Can you describe how you go about cleaning the mask each day? You might try dissembling the mask and soaking all the drool-covered parts in a vinegar/water bath for 30 or 40 minutes. I'd suggest a 1 part vinegar to 10 parts water to start with. You can increase the amount of vinegar if the smell doesn't bother you. Use distilled white vinegar.

Mask liners may help absorb some of that drool too. You can check out Padacheek for mask liners. Once you have a template, you might even be able to make them yourself by cutting them out of worn out t-shirts.

Changing the mask from a FFM that covers your mouth to a nasal mask may help---if you're not too much a mouth breather or if you're willing to use a chinstrap or tape. (Note: It is possible for drool to leak out the side your mouth when your mouth is closed. When our lips are shut, it's not a perfect, 100% airtight seal after all.)

And then there's doing some investigation about why you drool in the first place. Post nasal drip is one thing that can lead to drooling---at least in my experience. So when I got much more serious about tacking my nasal congestion problems, the drool did decrease substantially.

Hey I'm sorry its taken me so long to reply. I've been really busy these past few days.

You haven't told us what your IPAP and EPAP pressure settings are. But trouble feeling like you're not able to get enough air can indicate that you might be more comfortable with (slightly) higher pressure settings. Or (perversely) occasionally the problem is that you're really having trouble exhaling enough air out of your lungs to be able to get a nice deep breath in on the next breath. Either way, I think talking to the doc about a pressure adjustment might be in order---particularly if your IPAP and/or EPAP is very, very low or your EPAP is very, very high.

I don't know what my IPAP and EPAP pressure settings are, or what that even means. The thing about my breathing, is that it happened at my sleep study too. The technician tried so many pressures and things so that I could breathe. I think he was getting a little bit frustrated with me to be honest. He cried CPAP, and then when he put BiPap on, I could breathe a teeny bit better. But it's still not perfect. We both just agreed on it probably being anxiety, but i'm not anxious at all at home and the breathing is still kind of difficult. A few years ago, my regular doctor tested me for asthma, and he put me on some machine for a few minutes and I had trouble breathing with that too.

I assume you mean ONE AM and not SEVEN AM since you go on to say:

No, I meant 7am. The thing about me is, I have trouble falling asleep if its before 7am. As in, sure I can sometimes fall asleep at 12-1am, but usually it takes me a long time unless I'm dead tired. But if its AFTER 7am, I can fall asleep in minutes even if I already slept a bunch beforehand. So if I get woken up at 2-3am, its almost impossible for me to fall back asleep. But if I get waken up at 9am or something, I'll barely notice I'm up and fall back asleep instantly.

Trouble falling asleep at the time you WANT to go to sleep. Some questions about this: Before starting xPAP, did you have trouble falling asleep before 1:00 AM? What time do you WANT to be asleep by each night? And if you had trouble before starting xPAP, what would you do if you couldn't fall asleep? And what do you do NOW? Go to bed early and toss and turn and fight with the machine trying to get to sleep or an hour or more? Or simply put off going to bed until 1:00 or whenever you're finally sleepy enough to fall asleep with the mask on?

Yes, I've always had trouble falling asleep even without the mask. Its gotten to the point where I don't even bother getting into bed unless I'm dead tired, because its a waste of time imo. I'd like to be asleep by 12-2am each night, but that usually isn't possible unless I'm extremely tired. The mask itself honestly isn't that big of a burden, just those other things I mentioned. I mentioned to my doctor that I have trouble falling asleep, but he was more concerned with the sleep apnea than my inability to fall asleep.

Trouble sleeping when it's hot and humid. Common problem. And tough to fix unless you have A/C and can turn the thermostat way down at night. (That's what I've had to resort to now that we bought a new central A/C unit for the house.) Have you got A/C? What's the night time setting? If you don't have A/C, can you sleep under a fan? And sometimes a nice shower before bedtime helps with the hot and humid problems because at least the sweat is temporarily washed off your skin.

Yes I have AC, and 2 fans in my room. But sometimes even that won't be enough to make my room cool, even if I open a window. The AC has to be at FULL BLAST, but then everybody else in the house gets cold and turns it off while I'm sleeping, so when awakened, my room will be hot and I'll have trouble falling back asleep.

O2 Concentrator is generating enough heat to add to the "hot" bedroom problem. I don't use an O2 concentrator, but my MIL does. She moved her O2 unit to a different room across the hall and simply uses a very long O2 tube. Would that work for you? Her unit is in her spare bedroom, where we've slept many times. Can't say I've ever noticed heat coming from that machine. But again, her place is well air conditioned. In addition to moving the unit, it might be worth calling the DME about the O2 unit and reporting that it seems to be producing a fair amount of heat.

I wouldn't really be able to do that since my room is next to the bathroom and other rooms and itd be in the way of everybody. Also, the guy that brought the equipment over mentioned that it would produce a lot of heat, so they already know.

"So sometimes it will wake me up at like 2 or 3am". You need to identify more precisely what the it in this sentence refers to: The BiPAP? The heat in the bedroom? The O2 generator? Anxiety? If you are falling asleep around 1:00 AM, the immediate trigger of the wake could be that you are waking at the end of a REM cycle, which is not that uncommon. But because of everything else that's getting under your skin about the BiPAP, the O2 generator, and the hot weather, once you're awake you notice the wake more and you become MORE alert and have trouble getting back to sleep instead of just being able to turn over and quickly getting back to sleep.

Well, I say it and blame the Pap because usually once I fall asleep, I'm out for the next 10 hours. I rarely RARELY get woken up in the middle of the night by myself, even when its hot. So I assume its the mask or the air or something that randomly wakes me up somehow.

The sensation of hot air blowing down your airway. This one may be relatively straightforward to address: Try turning the humidifier setting DOWN. Or run the humidifier in passover mode: In other words, have water in the tank, but use the 0 setting for the humidifier. If you don't have A/C, the air being slightly compressed by the BiPAP likely already has plenty of humidity in it. And some folks just don't need as much humidity as others. If you can turn the humidifier down without making your nose dry, that's probably the best thing to do here.

I already had to turn it up though since I was waking up with a really really dry mouth. I guess I could try that though.

"I'll sit there awake and not able to go back to sleep, feeling really hot and anxious because of it." Once you're awake at 2:00 or 3:00 in the morning, there is no point in lying in bed unable to get back to sleep because you are too hot and too anxious. You are better off getting out of bed, going into a different, hopefully cooler room, and doing something to regroup yourself and settle yourself down. I'd suggest sitting in the dark for a few minutes in the coolest room in your house and letting your mind wander.

This is basically what I do yes

Anxiety issues about the mask. It takes some people some real work in acclimating themselves to the mask. A common suggestion is to wear the mask when you are awake and doing something like watching TV or reading to help your body get used to how it feels. This might help you. But do this work FAR AWAY from bedtime.

Nah I don't really feel any anxiety about the mask. Like I said up there, the mask itself doesn't bother me as much as I thought it would. I sleep normally and almost welcome it now. I accidentally took a nap without it once and I wish I would have used the mask.

Can you describe how you go about cleaning the mask each day? You might try dissembling the mask and soaking all the drool-covered parts in a vinegar/water bath for 30 or 40 minutes.

I don't completely disassemble it because honestly I'm afraid of breaking it. The instructions aren't really clear on how to take it apart. However I do remove the lining part and soak that in water, but then the inside of the mask like where the holes are always get drool on them somehow. I'm a restless sleeper so I'm all over the place, so I'm not surprised the drool somehow went up.

Changing the mask from a FFM that covers your mouth to a nasal mask may help---if you're not too much a mouth breather or if you're willing to use a chinstrap or tape. (Note: It is possible for drool to leak out the side your mouth when your mouth is closed. When our lips are shut, it's not a perfect, 100% airtight seal after all.)

And then there's doing some investigation about why you drool in the first place. Post nasal drip is one thing that can lead to drooling---at least in my experience. So when I got much more serious about tacking my nasal congestion problems, the drool did decrease substantially.

No I'm definitely a mouth breather when I sleep. I can sit there trying to fall asleep breathing through my nose, but the SECOND I start falling asleep, my mouth instantly opens without me even doing it. Sometimes I'll be in a half awake half asleep state and I'll feel my mouth automatically opening and drool starting to pool up.

Keeping a journal of how you feel each day may help you notice subtle signs that the xPAP is beginning to make a difference. For me the first positive sign that xPAP might be doing me some good was that I started to wake up with little or no pain in my hands and feet. Other positive changes have been very slow to happen, but they are there if I look (hard) for them.

Ive never had pains when I wake up, no headache, don't need to urinate or anything, however one thing I did notice, is that I stopped sweating as much when I use the machine. I used to wake up with my shirt drenched, but it hasn't happened lately even now in the summer. Still tired though, but yeah I guessed that it takes some time before it really starts working.

The mask manual with disassembly instructions is here:

http://www.resmed.com/us/assets/documen ... er_eng.pdf

If you can take the cushion and headgear off, that's the most important bits to disassemble for cleaning. A good rinse with hot water and setting them aside to dry for most of the day will probably handle most of your cleaning problems.

Your machine should show ipap and epap when you hook up and turn it on. It will show Ipap with "I" when you inhale, EPAP with "E" when you exhale.

Look at it when you wake up before you turn it off. Sometimes, it will ramp up pressure from a lower pressure when you first start.

I hope the encouragement you are getting here does you good, and that you stick with your therapy. I'm wondering how you ended up with the combination of a biPAP and oxygen? If you have lung problems, that's one thing, but if your sleep study suggested central apnea, periodic breathing, or mentioned the word "complex", that might be another thing. I ask because your description of what you are experiencing is identical to what happened to me quite a few years ago and, if you do have some form of central apnea, I could give you some detail and some references to show your doctor. No two people are alike, and for me the oxygen was somewhat helpful but, the biPap was actually causing more central apneas. In the end, good old CPAP at a modest pressure was the best choice, although even then there was no conventional therapy that was able to abolish it completely.

I think I have Obstructive because I'm really fat.

Also, I noticed something else that REALLY concerns me. Latel my jaw has been hurting a lot right when I wake up, and then feeling weird and out of place for the rest of the day. Its been like this for the past 3 or 4 days now, its never happened before so I'm assuming that the mask pushes my jaw back while I sleep or something. It's really concerning. I wish I could get a nose thing but I'm a mouth breather.

FishOil wrote:I think I have Obstructive because I'm really fat.

Also, I noticed something else that REALLY concerns me. Latel my jaw has been hurting a lot right when I wake up, and then feeling weird and out of place for the rest of the day. Its been like this for the past 3 or 4 days now, its never happened before so I'm assuming that the mask pushes my jaw back while I sleep or something. It's really concerning. I wish I could get a nose thing but I'm a mouth breather.

So, the oxygen is because your weight was just making it hard to breathe, and that explains why the biPAP too? That would not be unusual and if so your experience and mine are not the same. But heavy people can definitely have central apneas and some doctors may try to treat them with biPAP. I have a sense that I'm not alone, in that for me biPAP is not a very helpful way of going after centrals. Always worth checking your study to see if they mention it.

I had the jaw business too, I felt it was that I was strapping the mask really tight because the leaks were bothering me. In the end I got a dental appliance, a mandibular advancement device. Expensive, and the insurance put up a big fuss but ended up paying. It solved the problem, and definitely let me lower my pressure too. I think they're great, but get a good one or else you might get some tooth movement.

Experiment with the jaw problems.

Tinker with your straps. Maybe you can get less pressure on the jaw.

If your mouth opens, maybe the mask pushes your jaw out of place. A chin strap might help keep the jaw in a better position at night.

A mouth guard might help (or make it worse.)

FishOil wrote:I think I have Obstructive because I'm really fat.

Also, I noticed something else that REALLY concerns me. Latel my jaw has been hurting a lot right when I wake up, and then feeling weird and out of place for the rest of the day. Its been like this for the past 3 or 4 days now, its never happened before so I'm assuming that the mask pushes my jaw back while I sleep or something. It's really concerning. I wish I could get a nose thing but I'm a mouth breather.

FishOil,
It appears that your mask is too tight. If a mask is too tight and the cushion pushes the lower jaw back, then you can have TMJ problems... which is what your description is reading like.
Options... loosen your existing mask (run the risk of leaks) OR get a new FFM that doesn't push your lower jaw back (there's a few that deal more with under the chin instead of on the chin).
If it continues or gets worse... see your dentist!