Is frustrated the word I want?

Tonight will be day 5 of cpap. I have been reading the forum and delaying posting, but I can't seem to find the answer I need.
A little history. 55 yo female. I have many years history of insomnia and restless legs. I do not sleep without medication, and sometimes do not sleep WITH medication. It is as if I never took anything some nights. Neurontin controls the RLS, except in the a.m. hours it sometimes returns. Years long history of chronic fatigue syndrome, but a bit better in the last 10 years. A few years ago the sleep study showed no restorative sleep, alpha intrusions, arousals. The pulmonologist I was seeing didn't have any answers for me other than pills. I found a neurologist who must be pretty good becuase it's difficult to get any appointment without waiting over 2 months. Second sleep study showed apnea, but mostly hypopnea. A lot of hypopnea. I guess everyone goes through the depression over knowing this will be dealt with for life. Mine was added to by believing that cpap was not going to be the answer to the fatigue since it started years and years before any sleep problems developed.
The first 2 nights of cpap were GREAT! Slept like a baby the whole night. The last 2 nights I have woken, not being able to get the pillows comfortable. Took it off and hung it on the bedpost. I take ambien, so my memory in the night is compromised at best. The head contraption was either crooked or jamming my nose, and I remember water. I do have a hose snuggie. The humidity is set on 3, where I was told to start.
I can't figure out what is wrong. I fit it while laying down and it was great for 2 nights. The hose drapes up over the headboard. Do I need a swinging support? Could it be as simple as truly waking up, taking it off and starting fresh? During the titration cpap study I spent nearly the whole night on my back, and am staying there now. The side just doesn't work any more. It was my favorite!
I am just so frustrated. I don't want to do this, but I have to do this. I have hopes it will improve the quality of my life. The neurologist said once I get settled on cpap I can try Xyrem and get a better quality sleep. I know I haven't given it much time yet, but if I keep taking it off in the night, I won't ever get there.
Another thing: am I supposed to feel like I have to WORK to breathe out? This machine has cflex, which is supposed to help and my pressure is only 6. Is this part of the learning curve? Sorry to be whiny and pepper you with so many questions. But you are the experts! I am so glad I have this place to come to. Thanks in advance for your help.

I sleep on my side mostly.
I use the pillow to help anchor the 'down' side of my full face masks, and bring the remainder in with the straps.
Adjusting is most effective if you are lying in your best sleep position with the machine running.
If you do not feel relaxed on your back--don't sleep that way.
You will get the fitting stuff down with practice. Nobody I know of has NO trouble at all.

Hi, frog,
Thanks for your reply. I will have to experiement with getting comfortable on my side. the sleep tech made it sound like being on my back was better somehow.
Do you move in the nigth?

Ernie,
Are you renting your machine? If so did you realize that you have no data on your machine (if you picked the right one, that is)? What's your model number? You have a limited time to trade it out for one that'll give you more options, including a variable pressure.

ernie85017 wrote: The first 2 nights of cpap were GREAT! Slept like a baby the whole night.

First, hang on to this experience. Many of us go many months before we can say we slept GREAT! with the CPAP for a night or two. The fact that you had two GREAT! nights right at the start bodes well for your adjusting to therapy sooner rather than later.

But that's not to say you won't hit bumps along the way: We all do.

There is a learning curve for adjusting to sleeping with a mask on your nose. Some of us face a steeper learning curve than others.

You write:

During the titration cpap study I spent nearly the whole night on my back, and am staying there now. The side just doesn't work any more. It was my favorite!

One part of the learning curve is figuring out how to sleep as close to your favorite position as possible. With practice, it does get easier.

Pre-cpap I prefered to sleep with on my side with my nose stuffed into hubby's underarm. (Yes, I said his underarm.) For the first three months of therapy, I had a difficult time falling and staying asleep in any position and it seemed physically impossible for me to ever snuggle into hubby's armpit ever again. But during those first three or four months, I did manage to start figuring out how to arrange both the pillows and the covers so that I could sleep on my side with my nasal pillows mask. And then, after I actually managed to start reining in my infamous insomnia monster, I wound up discovering that I could snuggle lying on my side with my head nestled into the small of my hubby's back without it causing problems for the nasal pillows. I also discovered that being on the hose let me sleep with my head completely under the covers without the need to ever wake up and come up for air, so to speak. I'd always loved falling asleep with my head under the covers on cold nights, but would wake up needing to get my head out of the covers and into the fresh air for obvious reasons. After sleeping snuggled into hubby's backside for many, many months, about three months or so ago, I noticed that I was waking up almost back into my old favorite position of my nose close to hubby's underarm. The mind and body had finally figured out how to handle the hose at some point when I was no longer consciously working on the problem. And now I've just about got it down where I can fall asleep with my nose (and hose) nestled close to hubby's underarm once again. The point of all this is to let you know that you shouldn't give up the idea of sleeping on your side like you prefer to. You will be able to figure out how to sleep on your side if you are patient and work at it.

Since you prefer sleeping on your side, the first two things you'll need to think about is hose management and your bed pillow. You are already experimenting hanging the hose. For many people that's an important step. Hanging the hose does get it up out of the bed and out of your body's way so that it can be easier to move.

But hose hanging isn't a pancea---it doesn't work for everybody. So if hanging the hose isn't working for you, you might try the other alternative of running the hose under the covers next to your body. (This can also help with the water in the hose problem too. More on that in a bit.) For me, I find that if I gently cradle my arms around the hose, that's enough to keep me from getting tangled in it when I move from side to side. Basically when I'm on my side I use my upper arm to gently grasp the place where the small hose meets the large hose. Or maybe a bit closer to the mask than that. This allows me to sort of protect the mask from hose tugs when I'm rolling over. It also allows me to gently pull the nasal pillows away from my nose when they're not quite seated right. Usually with my nasal pillows mask reseating the pillows is just a matter of gently pulling them away and letting them settle back down. Occasionally I do have to fiddle with tugging on the headgear since it has a tendency to slide too far back on my head. My lower arm (the one next to the bed) cradles the larger hose farther down than the upper arm. The lower hand's job is to guide the hose over my body when I turn over.

As for bed pillows. I've always preferred soft down pillows. My favorite pillow is this truly ancient 20+ year old pillow that has lost about half its feathers through the years---it's enclosed in two of the dust-mite proof zipper pillow cases sold to folks with allergies. This pillow is extremely squashible. I simply smoosh the pillow into whatever shape I need to accommodate my head and neck and smoosh an indentation to hold the hose. That's enough to prevent the pillow from dislodging the mask or causing the mask to shift enough to cause a leak. Some people on this board do the same kind of thing with thin buckwheat pillows. Others, particularly those who like thick, firm pillows, find the special CPAP-pillows with cutouts work well. The cutouts allow the mask and hose to not be pushed against the pillow, and that, in turn helps prevent the bed pillow from dislodging the mask.

The head contraption was either crooked or jamming my nose

Your profile shows that you're using an Opus 360 nasal pillows mask. I remember trying that one on and my choice came down to it or the Swift FX. The Swift FX won out and I still use it. I don't remember all the details of fitting an Opus, but I believe that like the Swift FX, the Opus is designed to be worn with a rather loose headgear. So if the headgear is crooked but comfortable and the nasal pillows aren't jamming your nose into piggy nose or whistling with a small leak, don't worry about the crooked headgear.

If the headgear is bothering you a lot, you might want to look at Padacheek's website. I wound up asking Padacheek to make me a mask pad that covered the entire silicone part of the Swift FX headgear since there was a part that kept digging into my temple right above my ear. With that pad, the frame suddenly became much more comfortable.

As for piggy nose---that uncomfortable feeling that the pillows are being jammed up your nose. First, make sure the headgear is LOOSE enough. When you're in bed, you can see if the one or both of the headgear straps are too tight by sitting up in bed and turning the machine off. If the pillows are still being jammed up your nose, then one or both of the straps is too tight. Or, perhaps, the pillows are a size too small. So loosen the straps. And if that doesn't help, then try a larger pillow size the next day.

Now, once the headgear is appropriately loose and the pillows are appropriately sized, you can still arouse to a sense of piggy nose if you've moved into a position where the mask is being shoved against your face by your bedpillow (or, in my case, hubby's side body and underarm). The thing that works for me when this happens is a gentle tug on the hose right below where it joins the nasal pillows. The tug pulls the pillows away just enough to let them reseat more gently against the nostrils most of the time. When that doesn't work, I use my upper hand (remember I'm on my side) to pull on my nose and gently push the pillows back down where I want them. And if that doesn't work, I know I need to yank on the headgear in some fashion, although where and how hard really depends on how the pillow (or hubby's body) is pushing against the nasal pillows. I have found, by the way, that I don't usually want the backstrap of my Swift FX mask tightened the same amount on both sides. I believe that I typically keep the backstrap adjustment on the downhill side of the mask a bit looser than the uphill side of the mask. (The downhill side is the one that lies on my pillow most of the time.)

And all of this sounds much harder and more involved that it actually is. Once you've got some experience under your belt, you'll start to figure out how to make minor adjustments to the mask without giving it much thought.

and I remember water. I do have a hose snuggie. The humidity is set on 3, where I was told to start.

We call the "water" problem rainout around here. Basically it's condensed water vapor. The cause is that the warm air (in the heated humidifier) will hold more water vapor than cooler air does. As the hose goes from the humidifier to your nose, the warm air can cool down enough to trigger condensation. With enough condensation, you get a wet nose.

Solutions? You've already got the hose in a hose snuggie. That helps by insulating the hose a bit.

Try to make sure that the machine is below your head---water cannot run up hill. For some people, hanging the hose helps----if the highest point on the hose is close enough to the nose end so that most of the condensation occurs on the machine side of that high point. But if you sleep in a cold bedroom and there's a fair amount of hose on your side of the high point, then any condensation on your side of the high point runs down hill and hits your nose. For other people, running the hose under the covers and constantly uphill from the machine will help. Your body's heat will help keep the air in the hose even warmer than just the hose snuggie by itself does. And if the whole route is uphill from the machine to your nose, then the condensed water has a much harder time landing on your nose.

Turning the humidifier down a notch may help. But if that causes your nose or sinuses to dry out, then turn the humidifier back up and work harder on solving the rainout problem.

A heated hose is the ultimate weapon to fight rainout. For the Resmed S9 Autoset, there's the ClimateLine hose. For other machines, you have to look for things like the Aussie Heated Hose or rig something up yourself. (There are folks here who have done that.)

And another thing to consider with nasal pillows and rainout: Sometimes the problem is that the condensation comes from your own exhalations. You exhale very warm (body temperature) and very moist air. This warm moist air is exhaled into the small space of the nasal pillow where it meets the much cooler CPAP air and this triggers condensation in the pillows themselves. About the only thing you can do for this is to use a pillow cozy. Padacheek sells them.

Another thing: am I supposed to feel like I have to WORK to breathe out? This machine has cflex, which is supposed to help and my pressure is only 6. Is this part of the learning curve?

Many of us felt like we had to work HARD at exhaling when we were first starting out. Some folks even wake up with some soreness in their rib cages. (I remember waking up feeling like I'd been running a marathon all night long.) A pressure of 6 is not very high, but at this point you are also not used to it at all. Since you mention Cflex, it sounds like you have a PR REMstar System One Pro or PR REMStart System One Plus. Do you know which one you have?

The way Cflex works is that the machine reduces the pressure by a bit a the start of each exhalation. How much the pressure is reduced depends on how forcefully you are exhaling. The deeper the exhale, the more the pressure drop. In theory the actual pressure drop may be anywhere from about 0.5cm to 3cm of pressure relief if you've set Cflex to the maximum setting of 3. But since your pressure setting is 6cm, it's important to realize that the most Cflex will drop the pressure is by 2cm---the machine will never lower the pressure to less than 4cm of pressure.

In time you will get used to exhaling against the pressure. The first sign that this is beginning to happen will be when you wake up wondering if the machine has been turned off because you no longer feel the pressure. When this happens, put your hand in front of the exhalation vents---as long as you feel air coming out of them, the machine is blowing at your pressure.

I am just so frustrated. I don't want to do this, but I have to do this. I have hopes it will improve the quality of my life. The neurologist said once I get settled on cpap I can try Xyrem and get a better quality sleep. I know I haven't given it much time yet, but if I keep taking it off in the night, I won't ever get there

You are right on several accounts:

1) You haven't given it much time yet---you're just starting out. Most people don't notice much improvement in how they feel until they are consistently using the machine all night long, every night for several weeks to a couple of months. Many of us don't start to notice any real improvement for several months of full time sleeping with them mask. And when things do start to feel better, the first signs of feeling better may be so subtle that they are easy to miss.

2) You do need to focus on snipping that bad habit of taking the mask off during the night right now at the beginning. Because you are right: As long as you keep taking the mask off, you won't ever get to where you're fully adjusted to sleeping with the mask on your nose.

3) You are frustrated. And frustration is perfectly normal at this point in the game. The sleep docs and the DME folks by and large do NOT sleep with a mask on their nose every night. And many of them really don't seem to have much of a clue as to why learning how to sleep with a six foot hose attached to your nose takes time and energy and why it's easy to feel overwhelmed with frustration right at the start.

4) You don't want to do this, but you know you have to do this. Nobody wants to sleep with a hose on their nose----each and every one of us would love to not have OSA and, hence be able to sleep without our hose. But for many of us, after we make the adjustment and learn to sleep with the hose, we can't imagine choosing to sleep without the hose given the fact that we do indeed have a problem with sleep apnea. And don't delude yourself: A problem with lots of hypopneas is still an OSA problem. Lots of us here have diagnostic studies where the vast majority of our "events" were hypopneas.

And all of this points to you having a good chance of making it---in the sense of becoming a fully compliant CPAPer. And that's the best way to make sure that CPAP has a real chance to make a positive impact on your quality of life.

But I end with a word of caution: You have a long history of bad sleep and chronic fatigue. As such it may take you longer than normal to really start noticing a difference in how you feel when you wake up every morning. You'll need to get the insomnia under control and keep the restless legs under control before you are sleeping well enough with the CPAP for you to really notice much difference: CPAP only treats the problems caused by the airway that is prone to collapsing---it does not automatically make you sleep better in the presence of other medical conditions that fragment your sleep. And since you've had really bad sleep for many years, your body may have to learn how to obtain quality restorative sleep before you see any real improvement in your day-to-day life.

And as for that sleep study several years ago that showed no apnea, but also no restorative sleep, alpha intrusions, and arousals: Maybe at that point your breathing problem was still largely what is now called UARS---a varient of sleep disordered breathing where you tend to arouse yourself (over and over and over) because your body detects the airway is just starting to collapse---and the arousal happens before the airway has collapsed to the point of causing real hypopneas and apneas. These UARS arousals are called RERAs---respiratory effort related arousals. They require special equipment to diagnose them which is often not used during sleep studies. But sleep disordered breathing is often a progressive condition that worsens over time and it's possible that if you had UARS then, that in the last several years, the UARS has deteriorated into the "mostly hypopnea" version of OSA that you've now been diagnosed with.

Welcome to the forum.

Let's see which machine you have...Your profile shows the PR System One Remstar Plus with CFlex. This machine offers no data that might help you....like just how much leak you might be having which could impact the quality of your therapy. I decided a long time ago if I was going to have to go through all this "stuff" to manage my sleep apnea I wanted to make sure I was doing everything I could to have optimal results. The PR S1 Plus machine does have a SD card and it does collect one measly bit of data and that is how many hours a night you use the machine. Nothing else that might be remotely useful for your monitoring your therapy. There are machines that offer much more data.
Check the bottom of your machine..look for the model number which will begin with DS...See if your machine is DS250 or DS150...If either one of these model numbers you only have hours of use available on that SD card.

Take a look in my signature line for PR S1 software options. I have examples of some of the reports we can get. To use the software you need at least a model number DS450 to get full data.
If a DS 250 or less you might want to read about what to do when you realize that your machine is a "brick" (what we call non full data machines) One of our forum members has a nice explanation about full data machines and what your options are when you realize you have been given a "brick"..here is her blog...http://maskarrayed.wordpress.com/ scroll down a bit to see the "brick" information.

You have already been given some excellent suggestions to help deal with your various issues. Don't give up. We have all had the some of these same issues at one time or another and they can be overcome. Might not be easy but far from impossible.

Ernie, I just want to second what RobySue said about the mask straps and bed pillows. You may find that you need to experiment with different bed pillows now that you use the mask. I use the Opus and love it, and I am almost entirely a side sleeper. The Opus wants to sit gently on your head; too tight and it's not only uncomfortable, but it leaks more. For me, I got the straps adjusted to my liking after much fiddling, and from then on, I don't mess with them. I pop the whole thing on and off like a hat. I do use the Padacheek strap covers for the semi-rigid straps that go from the nasal pillow support across the cheeks; I also deliberately bent those semi-rigid straps back and forth a few times to soften them up. (They took no harm and it made them much more comfortable.) The only really awkward thing with the Opus headgear is (IMHO) that it seems to handle switching from side to side best if the loop that secures the hose to the top-of-the-head strap is really loose. This means that some mornings, I wake up with the top-of-the-head strap ootching down over my forehead - but the hose and the nasal pillows are still where they need to be so I don't worry about it (it just looks goofy).

One more thing - I have found that it is way too easy to re-insert the nasal pillows into their support a little off-kilter after cleaning them. If you do that, they'll go in, but the whole thing WILL feel lopsided when you put it on - because it is. So that might be a thing to watch out for.

Hang in there!

Wow.
Thank you for all the WONDERFUL information. And especially the understanding.
You folks]are incredibly knowledgeable.
It's late and I need to hook up to my hose and try to sleep. I will study all of this tomorrow and investigate more.
I truly appreciate all you time and effort to help me. I could not have asked for better.
Thank you !!!!!