brand new user, I feel like I can't breath

[robyngar]

Hello all! My name is Robyn and I'm new to this whole c-pap thing. Apparently the doc at the sleep study center my pcp sent me to didn't think that stopping breathing 87 x's a minute was worthy of a c-pap. The pulmonologist that I was sent to seemed to disagree. So anyhow, I got my pap last week. The first night was bloody H E L L. I don't think I slept for more than an hour or two total. The second night was great! Then...dum dum dum dum ddduuummm.....I'm having a hard time breathing. I have the nose pillows. I can't get comfortable. I can't get them to be comfortable. Waking up A LOT. I just want to sssllleeeeppppppp!! any suggestions, or reasons as to why I'm having such a hard time?

[GumbyCT]

Post specifics like the brand name mask & model, the name written across your machine. Exactly as written. Don't add or leave out words and please don't make no new words

[Pugsy]

Could you please add your equipment to your profile so we can see at a glance what you are using?
It helps us if we know what you are using. See my profile for an example

There are some videos on mask fit. Have you seen them?
http://www.cpaplibrary.com/mask-education

What pressure do you use? Are you using the ramp at a lower pressure to start with? Is the "can't get comfortable" related to air movement and feeling suffocated or just general discomfort from the nasal pillows themselves? Is it pain or discomfort from the nasal pillows? If pain then the fitting is wrong because they shouldn't hurt.

So more specific details are needed to give you more specific ideas.

[robysue]

First welcome Robyn from another Robin!

Next:

I'm having a hard time breathing. I have the nose pillows. I can't get comfortable. I can't get them to be comfortable. Waking up A LOT. I just want to sssllleeeeppppppp!! any suggestions, or reasons as to why I'm having such a hard time?

Lots of us have problems at the start. Most people get the hang of it after a few weeks to a couple of months. Some take longer. So don't give up.

As others have said, it helps us help you if we know:

The name and model of the CPAP you are using.

The name and model of the mask you are using. There are several pillows style masks, and while they are all similar, there are a few things that apply more to one model than another.

Your prescribed pressure setting. And whether the tech set you up with the ramp feature on. And whether you are using some form of exhalation relief.

Can you help us figure out exactly what you mean when you say, "I'm having a hard time breathing."? Here are some questions that may tease apart exactly what kind of trouble you are having.

1) Are you mainly having problems exhaling against the pressure? But inhaling is ok?

2) Are you mainly feeling like there's not enough air available when you inhale? But exhaling is ok?

3) Do you feel like the machine is forcing you to breath too deeply? Or too much? Or rushing your inhales? Or rushing your exhales?

4) Does the machine simply seem "out of sync" with your breathing?

5) Do you feel claustrophobic with the mask on? Is part of the problem worrying about not having enough air to breath?

6) Are you opening your mouth when the breathing problems start? And does that make them worse?


You also mention problems with getting comfortable. Again, in order to help you, we need a clearer picture of what's going on. For overall comfort issues, consider these questions:

1) What sleep position do you prefer? Does the mask seem to prevent you from sleeping in this position? How does the mask seem to prevent you from getting into your preferred position?

2) Are you tossing and turning a lot looking for a comfortable spot? Or are you lying in bed very still and somewhat afraid to move? Both lead to "I can't get comfortable" comments.

3) How are you running the hose from the machine to your nose? On top of the covers? Under the covers? Over your headboard and then over your head? On a hose hanger? Hose position is highly
personal and what works for one person won't work for all.

4) Is your pillow pushing the pillows around?

5) Does the exhaust flow some how hit you and make you cold and uncomfortable?

6) Is the air in the hose too warm? too cold? too wet? too dry?


Finally you mention trouble getting to sleep. Some of us have real trouble at the start. Learning to sleep with a hose on your nose is not exactly trivial and some of us have a harder time than others. I had a very, very tough time with insomnia. And learned a whole lot about what kinds of things you can do to help or hurt the situation. You might want to look at my Taming the CPAP-induced Insomnia Monster essay. There's a link in my signature.

The main thing I'd suggest for now is to try not to fight for hours on end to get to sleep with the mask on your nose. Instead of fighting with the mask for hours and getting more and more frustrated with the fact that you are not sleeping, I'd suggest this as a starting point:

1) Get all the CPAP stuff ready well before bedtime. That reduces the anxiety-building potential of dealing with it right at bedtime.

2) Wait until you are very sleepy to go to bed. And learn the difference between feeling sleepy and feeling exhausted.

3) Give yourself about 30 minutes or so to get to sleep with the mask on. DO NOT WATCH THE CLOCK. Estimate the 30 minutes. If you are not asleep at the end of what you think is about 30 minutes, assess the situation. If you are getting frustrated or if you are more awake than you were when you went to bed, get out of bed, go into a different room, and do something soothing and sleep inducing. Only go back to your bedroom when you are both calm enough and sleepy enough to mask up and try again.

4) Repeat step 3 as many times as needed. You will eventually get to sleep.

5) Do your best to get up at your usual wake up time regardless of how little sleep you got. And do your best to stay up to your normal bedtime on the day after a really bad night. Getting up at your normal time will help encourage your body to get tired at a decent hour. Going to bed at your normal time (instead of several hours earlier) will help your body to stay asleep during your normal sleep hours.

[LSAT]

Hello all! My name is Robyn and I'm new to this whole c-pap thing. Apparently the doc at the sleep study center my pcp sent me to didn't think that stopping breathing 87 x's a minute was worthy of a c-pap. The pulmonologist that I was sent to seemed to disagree. So anyhow, I got my pap last week. The first night was bloody H E L L. I don't think I slept for more than an hour or two total. The second night was great! Then...dum dum dum dum ddduuummm.....I'm having a hard time breathing. I have the nose pillows. I can't get comfortable. I can't get them to be comfortable. Waking up A LOT. I just want to sssllleeeeppppppp!! any suggestions, or reasons as to why I'm having such a hard time?

I think you mean 87 x's an hour.

[robyngar]

E0601CPAP/Auto Pap Phillips System 1
Auto Pap Min: 6 cmh20 Max 16 cmh20
E0562 Heated Phillips System 1
A7034 Nasal
A7035 Headgear
A7037 Tubing
Non Disp Filter
Disp Filter
Modem

As far as breathing: I'm having a hard time both breathing in and exhaling. I feel like I'm gasping in and pushing to exhale. It's really not comfortable at all. I'm constantly adjusting the nasal pillows because 1., I'm not sure they're in the right place (i.e. the breathing problems) and 2. They are just not comfortable.

I have the hose over the covers. I have a table directly behind my headboard which is not solid so I just run the hose through the open area of the headboard. It is probably only a few inches below. I wasn't aware of a hose hanger nor was I told how to position it.

I have a severe problem when it comes to things covering my nose, face, etc. It stems from a childhood trauma so just having anything touching my face is an issue. I've been struggling with that but find that the pillows FAR outweigh a mask when it comes to whether I would even consider using this. In any case, again, I refuse to give up on this. It HAS to work!

Comfort wise, I'm a turner. I sleep on my side and I'm constantly turning from one side to the other to try to get comfortable. Therefore, having to move the tubing and adjusting the headgear is a nuisance. I am not going to give up obviously, as I would love to know what it feels like to wake up rested in the morning and to not wake up constantly during the night.

Thank you Robin for your kindness and helpfulness in answering my post. Hopefully it will get better sooner rather than later!

[robysue]

E0601CPAP/Auto Pap Phillips System 1
Auto Pap Min: 6 cmh20 Max 16 cmh20

The Good: You've got a machine that records full data. Look for posts by Pugsy and check out the links in her signature for learning more about how to access the data your machine is recording each night while you sleep.

The Bad: Your machine has been set to run in a really wide range. And that can be adding to your comfort problems. In particular, a good mask seal at 6cm may not be a good mask seal at 16cm. And that could be contributing to some of your tossing and turning and mask fiddling. Have you had a titration study where they put a mask on you and the tech adjusts the pressures as you have events? And if so, have you got the results? In other words, do you have a titrated pressure? If not, then the doc may be doing a bit of autotitration with the goal of tightening that APAP range once some data has been gathered.

The Ugly: The data shown on the machine's LCD is pretty limited. Vastly limited compared to what you can see when you download the data into either SleepyHead or Encore.

Modem

So there is a modem attached to the back of the unit? The SD card slot is behind the modem if I recall. To access the SD card, you need to pop the modem off. If there is no SD card, go buy one from Walmart or Office Depot. You need the cheapest 1 or 2 Gig SD card you can find----the more expensive SDHD cards won't work. The SD card should cost in the neighborhood of about $10.

As far as breathing: I'm having a hard time both breathing in and exhaling. I feel like I'm gasping in and pushing to exhale. It's really not comfortable at all.

Do you know if A-Flex is turned ON or OFF? And if it's turned on, do you know what it is set to?

And when you look at the LCD screen, what does it say in the upper right box? The LCD should look something like this:

Therapy | WHAT DOES IT SAY HERE?
----------|-------------------------------
Info____| Set up

If that upper right hand box says A-flex, then A-flex is most likely turned on. And if you select that box, you should have a menu item that says Demo. This lets you try various Flex settings and easily adjust/change them while you have your mask on. It's well worth doing because an "incorrect" flex setting can make it seem like you are having problems breathing. Flex is a patient comfort feature, and not everybody is the same, but many techs automatically set all their patients up with the exact same flex setting. (My RT always chooses "Flex = 3") But not everybody likes Flex and not everybody likes the same amount of Flex.

So run through the demo and see if changing the Flex partially addresses your breathing problems.

And if fiddling with the Flex setting doesn't help, you might consider going back to the DME with the machine in tow and demonstrating to the tech what you mean by gasping to inhale and pushing to exhale.

I'm constantly adjusting the nasal pillows because 1., I'm not sure they're in the right place (i.e. the breathing problems) and 2. They are just not comfortable.

With your history of the childhood trauma, no mask is likely going to be genuinely comfortable until you are really fully adjusted and sleeping well.

But---we can minimize the discomfort. And pillows are most likely the way to go. So let's work on that.

First read through JanKnitz's Swift FX fitting guide and follow her tips.

Second, be aware that this mask should be worn with very loose straps---particularly the top strap. So when in doubt, loosen rather than tighten the straps. (Mine are so loose that it feels like the mask ought to slip off, but it doesn't. And I am a side sleeper who turns over a lot in my sleep.)

Third, if any part of the tippy-tip part of the cone that goes into the nose is touching the inside of your nose, the pillows are not at the right angle. Pull the pillows away very slightly, allow them to fully inflate, and gently settle them back against your nostrils. You should not feel anything touching the inside of your nose. If you do, reseat the pillows again.

Fourth, lots of people find that putting some Lansinoh cream around the edges of the nostrils helps keep the pillows more firmly in place. (It's a bit tacky to the touch.) Some people don't find it helps, and a few find that the lanolin in the Lansinoh melts and makes things slide around more. But it is an idea that's worth trying.

And you should practice seating the pillows and lying down and turning over (and over and over) while you are fully awake in the afternoon or early evening. In other words, solve the problem of figuring out just how to seat the pillows properly and how to more gracefully move with the hose during the daytime when you're awake and your brain is capable of doing some real problem solving. And then apply what you learn when you are in bed trying to get to sleep. Some daytime practice will also help you learn what kinds of movements significantly jostle the pillows out of place and what ones don't.

I have the hose over the covers. I have a table directly behind my headboard which is not solid so I just run the hose through the open area of the headboard. It is probably only a few inches below. I wasn't aware of a hose hanger nor was I told how to position it.
...
Comfort wise, I'm a turner. I sleep on my side and I'm constantly turning from one side to the other to try to get comfortable. Therefore, having to move the tubing and adjusting the headgear is a nuisance.

How much slack is there in the mask end of the hose? It's not clear from your description where the bulk of the length of the hose is: Is it on your side of the headboard or on the machine side of the headboard? If much of the hose is on the machine side, you may be feeling tethered and that may be increasing your discomfort by making it more difficult to turn over.

If you don't mind the hose coming in from over your head, a hose hanger may be a big help.

If you don't want the hose coming in over your head, you may find that routing the hose in from the side of the bed and under the covers a bit easier. A hose cozy keeps the plastic off your skin. I have found that I tend to curl around my hose and gently hug it: One hand is near the top of the small hose and the other is down on the large hose. When I turn over, my hands automatically grasp the hose and so it moves with me. But it did take me a while to learn how to do this automatically in my sleep.

I have a severe problem when it comes to things covering my nose, face, etc. It stems from a childhood trauma so just having anything touching my face is an issue. I've been struggling with that but find that the pillows FAR outweigh a mask when it comes to whether I would even consider using this. In any case, again, I refuse to give up on this. It HAS to work!

If things stay really, really rough for a long time, you might want to consider a bit of counseling to get you through the anxiety issues you are having with the mask.

[robyngar]

Thank you everyone for all of your help Basically now I'm just not sure if I'm using it correctly. If the pillows are completely in my nostrils, that's where I'm finding it difficult to breath. If I pull them down a bit I can breath, but I'm not sure if I'm getting the air I'm supposed to be getting :/ It does wake me a lot during the night but I guess that's just something that will go away eventually. I'm going to just continue till I get comfortable. Hopefully that will be sooner rather than later.

[IndyDave]

Hi Robyn,

I'll leave the technicals up to the experts, but as someone who just finished night 12 using a pap, and still trying to acclimate, I thought I'd toss out some thoughts. You can follow my saga in the two threads I started.

It was only a few nights ago that i was able to leave my pillows in place all night, and I have no problems with things on my face. Don't worry if you have to progressively adapt - keeping the mask on longer each night. It's just unusual, uncomfortable, and annoying as the pillow drags against them and pulls them out of place. I too consider myself a tosser-turner during the night, but one thing I have noticed is that I'm becoming less so as I wear this thing. I normally sleep on my side, and would roll back and forth constantly in the night, but now I usually roll over once or twice and then back in the night. Perhaps the apnea causes this restlessness?

To get used to wearing the mask, I spent the first few days wearing it in the evening for a few hours while reading or watching tv - while sitting in the living room. It helped me get used to the feel, the pressure, and learning that my body will still breath for me - that I don't have to think about it. As far as hose hanging systems, it does help to have the hose come down overhead centered over where you sleep. It sounds like you can drape yours over your headboard? I have a bookcase headboard, and have it draped behind my clamped reading light. I have to hit Lowes this afternoon, and will look for a large 3m plastic hook or something I can just mount on the headboard - my unit is on a table to the side. The hose hanger units you see for sale look like IV stands.

And as people have said, you can have the straps much looser than you think. I'm using a Swift FX nasal pillow mask, and at first I had it snug, which was hurting my nose. I've found the top plastic strap doesn't do a whole lot - I can fit my finger between it and my head now. I'm still tweaking the back velcro strap a couple mm at a time to get it just right, but I found you want it loose enough to let the reservoir beneath the pillows hand loose below your nose; not so much that the pillows easily pull out. Again, as Ive tossed less, I've been able to loosen it more.

Final thing - which might help you address your anxiety over things on your face... My doc gave me a prescription for a low dose of valium for a couple weeks, to both help me get to sleep, and for any anxiety having the mask on might cause. Only used it the first week, but it did help.

[Pugsy]

Basically now I'm just not sure if I'm using it correctly. If the pillows are completely in my nostrils, that's where I'm finding it difficult to breath. If I pull them down a bit I can breath, but I'm not sure if I'm getting the air I'm supposed to be getting :

Only the tips of the inner cones go into the nostril. The pillow rim..sits gently on the outer nostril.
Too tight or wrong size nasal pillow will cause the pillow to not be able to inflate...thus can't breathe easily. Sounds like too tight or wrong size nasal pillow or both.

Did you watch the video on fitting the mask?

[DrPepper00]

I sleep with my hose under the covers and hold it like RobySue does. My breakthrough came when someone suggested putting the chin strap on after the mask. It keeps the pillows from moving by putting pressure on the cheek straps. If I can hear any air moving, I know the pillows are at maximum seal and I wiggle them until all is quiet. All noses are shaped a little differently. I find I have to tilt the pillows toward the front of my nose to get a good seal. My pressure is 14.6/11 and if I point them too far back, the air rushes in and dries out the back of my throat. I find the Lansinoh keeps my nose from getting sore.

I have been at this for 3 mo now. I am not feeling great, but I have improved to the point I am starting to walk for exercise and starting the low carb way of eating. I have even found myself smiling and laughing a little more. Keep at it. It is definitely worth the effort.

[Issac]

You should have been started with a full face mask. If you want to just use pillows, ask for the Hybrid (the original by Rescare, only, not Resmed one with no chin support). The hybrid will teach you to breathe with the pillows and after a month, you will keep your mouth shut when you sleep. I don't know how they did that, but that's what I was told when I got one and it was true. I was a troubled xpap user because I hated all the masks and the pillows just blew off my nose. I hated chin straps and tape. I was ready to give up and die. The sleep clinics only pull out the Hybrid for trouble patents because they know these patents are too claustrophobic for a full face mask and not ready for a pillow or nasal mask without a chin brace to keep your mouth shut. It takes a wile to first set it up because there are so darn many sizes and options. The company that invented it was very generous with the parts. I think it was made for problem users because it solves so many problems and you can adapt to those little pillow masks after 3 months or so of using it. You get to open your mouth when you need to so you can breathe against the air easier but once you fall asleep, the chin support mouth cushion will guide your mouth shut and after about a month, your mouth always stays shut. If you get a cold or something, you don't have to use all those poison sprays to use your mask. I can't praise this mask enough if you have a problem breathing with cpap. The only other real solution is a bi pap and you won't need it unless your machine is set above 20 centimeters. I can use pillows and a prong now, no problem, but will always keep a Hybrid for colds or just a nice break from all the air pressure at night.

[robyngar]

Did you watch the video on fitting the mask?[/quote]

I didn't see one, no. Is there one somewhere online?

[Pugsy]

Did you watch the video on fitting the mask?

I didn't see one, no. Is there one somewhere online?[/quote]

I thought I posted the link for the mask fit video in my other post.
but here it is again.
http://www.cpaplibrary.com/mask-education

[robyngar]

Did you watch the video on fitting the mask?

I thought I posted the link for the mask fit video in my other post.
but here it is again.
http://www.cpaplibrary.com/mask-education

Thank you for posting again, I watched but the problem isn't the way the headgear fits, it's the nose pillows themselves. I am using the small ones, my nostrils are pretty small. I don't like them to cover the entire nostril because it's suffocating to me. The air from the c-pap maybe just isn't enough? i don't know. At this point I'm just sucking it up, seems nothing I do is going to make it comfortable anyhow. Hopefully I will begin to feel better so I won't get frustrated at having to do this and getting no results. I did read someone else's post saying they don't have gerd any more. I decided to take a break from my prescription omeprozole and viola! It's been 5 days and I haven't taken any, nor have I had a bout of heartburn. I don't know HOW the c-pap would have anything to do with it, but so far it's working.