First time user...lost and need guidance...

And here's last night, which seemed pretty decent, other than being uncomfortable (mask appointment at 11)

Alan,

First a big welcome to the board and a sad welcome to the CPAP&Insomnia club. May your membership be much shorter than mine has been.

Next, looking at the SleepyHead data you posted: The good news is that you don't seem to have any real problems with leaks. Those are nice flat lines that appear to be close to the intentional leak rate for your mask. And on the nights that you don't take the mask off, you've got a small number of events that are pretty well spread out---i.e. no really nasty clusters of events. So from the technical side of things, your therapy looks good even though you feel lousy.

And I do understand that you feel lousy in spite of the numbers. As Pugsy pointed out, I've had a serious battle with insomnia right from the start of CPAPing. The first three months were hell: I had a serious crash and burn in terms of daytime functioning and was getting little or no quality sleep at night many nights. My CPAP-induced insomnia monster grew fat and strong during this time. And I was a walking zombie. Months four through nine consisted of a major organized war on the insomnia and a string of failures to tolerate a series of meds to control my migraines. A dangerous combo: Migraining, serious side affects to meds, and insomnia triggered by the BiPAP. Wouldn't wish it on my worst enemy. And spring allergies kicked in (big time) when the trees started to pollenate in March (month 6). By the end of month 8, the neurologist found a med I could tolerate for the migraines and the trees were done pollinating for the year (but the grass and weeds started up). Finally around 10 months into therapy the insomnia began to abate, and with the apnea, allergies, and migraines all under control, I started to feel better than I did pre-CPAP on a daily basis. I'm almost a year into therapy now and on my best days I feel much, much better---as in I feel like I did in my late 30s or early 40s (I'm 53.) And on a mediocre day, I feel about the way I did pre-CPAP, which was functional with a bit of tiredness and achyiness in my hands and feet on a daily basis, but not excessively sleepy or exhausted. And finally, those good days are outnumbering the mediocre and bad days. But I admit it: I'm greedy and I want to reach a point where the bad days are truly rare and my current "good days" become what I expect day after day after day.

Here's what I have to say on a number of other questions you raise:

AlanMacNeill wrote:OKay...first time poster...28 day incredibly frustrated user (to the point where the machine is going flying through the window if I don't get some relief)

Been there on the feeling. Have had many a major emotional crisis with lots of tears and crying and yelling in the middle of the night. Poor hubby has been a saint in putting up with me. But it's been a month now since I've had a night that's invoked this kind of feeling.

Sleeping with a hose on your nose is not natural and some of us have a much steeper than average learning curve. Stick with it though and things will eventually get better. But it may take months. I know you don't want to hear it, but I believe in telling the truth. And how did I manage to stick with this crazy therapy through all those months of misery with 100% compliance? Stubborness to not let a d*m machine beat me mostly. And focusing on the problem one night at a time. Each night I simply forced myself to put the dang hose on my nose and I never let myself fall asleep without it on. I knew myself well enough that there would be no slippery slope to noncompliance: I knew that if I allowed myself to sleep without the hose and I felt more like my old pre-cpap self in the morning that I'd never be able to force myself to put the hose on my nose again.

My settings are (apparently) not all that high, at 14/9, but I am not convinced that the machine is switching correctly.

My understanding, as explained by the therapist, is that the machine senses when I switch from inhale to exhale, and changes pressure accordingly. Yet, about 1 in 10 or so of my inhalations, the pressure drops from high to low while I'm still very much in the inhale stage, which throws off my respiratory pattern, and makes me more awake.

It could be that your breathing pattern is not being picked up correctly by the machine. You can try to verify that the pressure is indeed dropping too early by putting the hose on and watching the LCD for several minutes. When you are inhaling, you should see an I with a 14 by it. When you exhale, you should see an E with a 9 by it. See if you can trigger the problem while you are awake. And if you can, then yes, you should take the machine back to the DME. It may be you've got a defective machine (it happens) OR it could be that you'd be better off with the Resmed VPAP bilevel OR it could be you'd be more comfortable with a smaller difference between IPAP and EPAP.

Add in that the mask, a full face model, just plain doesn't fit right under motion. I sleep on my side with occasional flips to the back, and all it takes is one roll over and voila, the mask is dislodged just enough that it's either crushing my nose, or there's a air gap because the mask slips over my mouth, or it twists, or, or, or.

The mask itself is loud and seems to be getting louder as the days go on. There's a *ton* of air coming out of the holes on top of the nose, which flows onto my eyes and is an irritant.

Get thee to the DME for some serious mask shopping. With these kinds of problems, this mask is simply NOT the mask for you. Air blowing into/onto your eyes is just not acceptable in the long run. In addition to being very uncomfortable, there are issues with drying the eyes out night after night. And you don't want to go there. There are other FFM that may be more stable on your particular face. Or a hybrid mask (nasal pillows combined with a mask that fits over the mouth) may be a better solution. Or mask liners from Padacheek may do the trick. Or (if all else fails), it may be worth it to find an eyemask to cover your eyes at night and shield them from that airflow.

Or you may be more comfortable using a nasal mask or a nasal pillows mask and figuring out what to do with possible mouth breathing issues if they occur. More about this in a bit.

I can't just go with a nasal mask, as I am chronically congested (thanks Mom and Dad for your years of careless smoking! 30 years later and I STILL have issues). On a friend's advise, I use Afrin spray (well, the generic version) about 30 minutes before bed, but I see the warning on it that says "don't use for more than 3 days"...umm...I'm planning on living a little longer than that, thanks.

As others have pointed out, the main reason that Afrin and other OTC decongestant-based nasal sprays carry that "do not use for more than 3 days" warning is that they trigger so-called rebound congestion when using them longer than that. In other words, using the sprays themselves will cause more congestion to form rather than eliminating it.

What to do for nasal congestion? Well if you wander over to my blog to read about what I have to say about insomnia, you can also take a gander at what I say about dealing with nasal congestion while on CPAP.

I'll also add this: It may be that if you tried nasal pillows---where the air is blown directly into your nostrils---that you might find the combination of the air being blown directly into your nose, a netipot, an OTC anti-histamine, and perhaps a prescription nasal steroid spray such as Flonase will sufficiently keep the nose clear enough to breathe through your nose at night. Right from the start, I've had fewer problems with nasal congestion at night than I had pre-CPAP. But I have found that even a small amount of congestion adds to the discomfort issues.

Additionally, the machine seems to stop providing pressure at all at random times.

Is my machine defective?

It could be. My first BiPAP had to be replaced under warranty because it turned itself off at night a number of times. I woke up to it rebooting one morning and that was the straw that broke the camel's back so to speak. I called the DME, told them what happened, and they replaced the machine with a new one ASAP.

Or it could be that during the night you've gotten used to the pressure.

How to tell them apart? Use the irritating flow of air from the exhaust vents. If there's no air coming out of them, you know you've got a problem with the machine not delivering any pressure. If there's air coming through those vents, you've just gotten used to the feel of the air. Real simple test. Use it.

Can I get the doctor to just "dumb down" the machine to provide a fairly steady pressure?

Your PR System One BiPAP can be set to straight CPAP mode, but not to APAP mode. In CPAP mode it will provide one pressure. You'd need to check with the doc about whether that pressure should be set to your EPAP = 9cm, your IPAP=14, or something in between. Or you could ask if that EPAP could be increased a bit to make the IPAP-EPAP gap a bit less, which would make the transition a bit easier.

And if you have Bi-Flex turned on, you might want to turn the setting down to 1 or turn it off altogether. Bi-Flex is supposed to "round" the transisition from IPAP to EPAP by starting the drop in pressure towards the end of the inhale, and it could be that you are sensitive enough to pick up on that subtle decrease in pressure before you are done inhaling and that small, subtle drop in pressure is what's triggering the nasty sensation of the machine not letting you finish inhaling.

What can I do to relieve the problem of twisting and turning leading to mask fail? Is there a better brand of mask to try?

A hose management system might help because of this problem could be you are tugging on the hose when you are moving around in bed and the hose is then tugging on the mask and dislodging it.

Or start mask shopping to find another one that simply works better. Many posters here have gone through literally dozens of masks before finding the one that works for them.

Listen to Robysue. Your reports are to die for. Very good and there is nothing in that report that needs improvement.
Time to take a hard look at all the other stuff that messes with how you feel. I have been in your shoes also. My issue was a form of insomnia due to pain. I simply woke up 20 to 30 times a night every time I moved. Brief wake ups. No removal of mask. Would go right back to sleep but wake up again. I had to do a lot of trial and error to sort out which factor I was able to alter to get me some relief. It still isn't perfect but then my 59 yr old body is pretty messed up.

So I did some experimenting this morning...and yes, I can reproduce the "The machine thinks I'm done inhaling, even though I'm only about 60% done" syndrome almost on command (Hey, it's a cool parlor trick, if nothing else...), so I'm assuming I will be able to get that adjusted slightly.

I am getting a different mask, I think a good chunk of my issue with the discomfort is the interface between my (admittedly round and chubby, 345 lbs will do that for ya...) face and the mask just ain't quite right when I lay down.

I see an ad on Lincare's website for an apnea pillow, that has cutouts for the mask and hose and stuff. Worth the effort (and the pricetag)? I *prefer* to be a side sleeper, or at least to have the option.

Thanks everyone for the leads and information. If nothing else, I can feel good that yep, other folks have been here, and there is light at the end of the tunnel.

Dumb question...can the sleep specialist/pulmanologist(sp) accurately prescribe an allergy med, or will I have to go through the hassle of finding a new allergist and all that again (I moved since my last one)?

Special pillows....highly personal preference. I can't use those pillows with the cut outs because they are too high for my head. I am small boned woman with bad neck and those pillows put my neck and head at a tilt. I do better with a low flat buckwheat pillow that I just shove the hulls to the side to make a spot for my mask when on my side..

I don't know how much that special pillow costs but you can also cut out a spot similar on a memory foam pillow for much less. Use electric knife to cut the foam.

Sleep specialist can right a RX for anything if he will just do it.

http://www.target.com/p/Memory-Foam-Con ... A-10496103

My husband uses one like this with the same mask you have. We put a folded towel underneath to give it a bit more height.

So...after the mask recheck...

Tonight I have to redo my entire profile, as I no longer have the same humidifier, mask, or machine...

Kinda feel like I'm starting from scratch, but I also feel like that's a good thing. The therapist took a long time to understand what I was saying about the machine cutting off the high pressure prematurely, then kept telling me "That's how that machine is programmed, they can't do anything about it".

I was about to walk out and just tell my wife to cope with the snoring, but the therapist (presumably seeing her numbers dropping) decided she could switch me out to another machine (a Resmed) that handles the pressure switching differently. Also switched out the mask for one that won't blow the pressure on my eyes, and has stickier pillows, theoretically for better sealing...we shall see.

I'll give more details later, right now I'm late for a meeting at work.

I started off with the same set up in July. However, I am not using the Biflex option, the straight cpap with cflex set at 2. Maybe you don't need bipap. The cflex can take care of the exhale part.

The biggest switch I made was changing to a nasal mask. That has really helped. I still do not have the perfect fit and am working on that. My pressure is 18, so worrying about breathing thru my mouth is not much of an issue, it is like reverse air flow sucking noise if I open my mouth.

As for the nasal congestion, you might try using an inexpensive saline solution that you can get anywhere even Walmart. Also, there are many over the counter antihistamines, both sedating and nonsedating, that help.

I found that before the CPAP my nostrils always seem congested, but since being on the machine, it seems to have blown them clear, except when I have a cold. I still wake up every two hours or so and roll over, but that is a vast improvement from where I was at, and I do feel rested.

My father was a chain smoker, and it left me with asthma as a 60 year old adult. Bummer. But he did not live past 65 years old, which seems awfully young from my current perspective.

I use Lincare too as my DME.

AlanMacNeill,

Sounds like you've got a jewel of a therapist working with you! That's a major advantage.

And I'm glad that the experiment I proposed paid off. The Resmed VPAP Auto (the machine I'm betting you were switched to) does have a different algorithm for detecting the breathing pattern of the patient as well as a different way to transition between IPAP and EPAP. Most folks really aren't sensitive enough to tell the difference. But if you happen to be one that can (and I suspect that you are one of those people, as am I), the machine's algorithm for detecting the breathing pattern is very important. It's not that one is better than the other objectively speaking. Rather, one of the two is more likely to do better with a given sensitive person's breathing pattern. Which one depends on the the particular person's breathing patterns and how the person interprets their own breathing pattern as well. Here's hoping that you do better on the Resmed. And it won't surprise me if you do. And I say that as someone who does better with the PR machines.

As for your earlier comments about whether a CPAP pillow is worth the price and side sleeping. I think you ought to try the pillow as long as it isn't any thicker than your normal pillow. Those cutouts for the mask are godsends for many folks around here. And it is critically important to figure out a way to sleep as close to your normal pre-xPAP position as possible.

Pugsy wrote:Special pillows....highly personal preference. I can't use those pillows with the cut outs because they are too high for my head. I am small boned woman with bad neck and those pillows put my neck and head at a tilt. I do better with a low flat buckwheat pillow that I just shove the hulls to the side to make a spot for my mask when on my side..

The CPAP pillows are also far too thick for my poor neck to tolerate. My solution is my 20+ year old down pillow that is literally held together by not one, but two "dust proof" zipper pillow cases to contain what's left of the feathers after all these years. It's thin and smooshes into what ever configuration I want.

The bigger problem for me has been to find an alternate place to snuggle into my hubby's body. Pre-cpap, I and my pillow would snuggle into his underarm. But there's not place for the hose to go there. *sigh* I have found that since I don't mind having my head under the covers all night (due to the constant stream of fresh air from Kaa) I, my down pillow, and Kaa's hose can manage to snuggle into a spot on hubby's side just above his hip. Makes for an interesting sleeping position, but since I'm small, it works.