Been trying for a year, still a newbie at this

About myself:
I'm 43 yo, male. I have seasonal allergies, I have asthma, I smoke (I know I know), I have a heart condition, I'm overweight, and out of shape. I've been working with my primary doctor from the VA, to help me change my lifestyle. I'm taking classes on smoking cessation, consulting with a nutritionist to adjust my diet, taking medications to control my asthma, allergies, cholesterol and arrhythmia. One of my biggest hurdles is exercise, because I get exhausted so easily. The doctor suspects I do not get quality of sleep, I feel that I do, in fact I sleep a lot, I just sleep at unusual times. I have non-24 sleeping disorder,(undiagnosed), and it hasn't been a problem for me. After asking my girlfriend a few questions about my sleep. "Does he snore"?... "yes"... "Does he stop breathing"?.... "sometimes"... He recommends that I take a sleep study.

The sleep study:
I'm still kind of upset about the whole ordeal. First and foremost, they only do sleep studies at night. I am primarily a day sleeper, they offered no kind of workaround for that, and I had to show up for the appointment at the peak of my day. They wanted to measure EVERYTHING so they wired me up to measure my heart, my brain waves, chest movement, leg movement, eye movements, and air going in/out of my nose, (which are the worst because they put electronic whiskers up my nostrils that tickled the entire time). So there I was with wires all over my chest, face, scalp, legs... and they have me lay down on my back, and expect me to sleep like that. The wires are just barely long enough to reach the input device at the head of the bed, and they tell me "now you can't roll over or else you'll pull the wires loose and we'll have to come in and redo everything"... Huge problem here, I only sleep on my belly. Noop can't be done here, you have to sleep on your back. So I was awake the entire night bored out of my mind. I maybe dosed off for 15-20 minutes a couple of times and they said that was good enough for a diagnosis. The next day I was called (and awoken), by the doctors office with the results, and they said I need to use a CPAP, and that I should avoid sleeping on my back. Go figure.

My own conclusion:
I've only had a few good sleep sessions at home with my cpap. I've acquired the software to examine the cpap data my machine creates on the memory card. I found it all very interesting, but I don't think it's anything unusual or cause for alarm. When I sleep, and I'm in deep sleep, my breathing becomes shallow over time as well as my breathing rate, to the point i'm only taking in small puffs of air at increasingly long pauses. Sometimes I do stop breathing but nothing longer than 10 seconds, and when it does happen I'll take one long slow breath and each breath after that becomes shorter and shorter with longer gaps in between. So from what I've studied this is NOT obstructive sleep apnea, but it's still classified as apnea. This is my norm, this is what i'm used to, and maybe I'm wrong, but I don't feel that this kind of deep sleep breathing is a problem, but my CPAP machine does, and it starts cycling up and forcing me to take these deeper breaths of air, which consequentially pull me out of my deep sleep. It ruins my whole day, I feel exahusted, unrested, and deprived. In fact, I feel so bad after a full CPAP cession I wind up taking a secondary nap half way into my day without the CPAP to get the deep sleep I have been deprived of.

My prescribed equipment:
CPAP - Resmed S9, w/humidifier, and slimline hose
Masks - Mirage Quatro, Airfit F10
Nasal Pillow - Airfit P10 (newest)

I've been trying to work with the VA CPAP specialist. She has offered very little advise for the problems I've been having, other than to try different masks, so I have hit the limit of "advise" from them because they don't offer anything else. I have one of everything they offer at this point. The only other advise she has for me, is to wear the mask every night, even though it keeps me awake, and to take it off when I can't stand it anymore and need some real rest.

Problems I've had with the Resmed line of products:

Mirage Quatro: This was the first mask I was prescribed,because the sleep study determined I'm an occasional mouth breather. The material of the mask makes a good seal at first, as long as the mask is very clean (washed with soap prior to each use), and I have also washed my face with soap and water just before bedtime. However. I have a naturally oily complexion, and within an hour of use the edges of the mask begin to slide and unfurl allowing air to escape. I can partially prevent this by cinching the mask headstraps even tighter, but then the forhead support thing starts digging into my skull and becomes an uncomfortable pressure point. I also start to get neck strain, because i'm a belly sleeper, I have to keep my head turned to the extreme side to prevent my pillow from pushing against the mask and making things worse. Finally, and this seems minor, but to me its a major.. I get itchy nose. The air rushing around the inside of the mask makes my nose feel itchy after a while. It almost seems like there's a loose cat whisker inside the mask blowing around and tickling my face and nose. It drives me crazy.

Airfit F10 - Much better mask material. It's stiffer, my oily complexion doesn't seem to be a problem with this material. It doesn't have the forehead "pressure point of pain" like the quattro. Seems like it addresses all my problems. However it creates all new problems. The head straps on this mask are designed to pull the mask upward at an angle. This causes the mask to slowly slide up my face. Along the way the straps under my cheeks push my face flesh into my eye sockets causing a gap in my eyelids exposing my eyes to the air. To complicate matters even more, once the mask has migrated all the way to the top of my nose bridge, it then breaks seal and blows air directly into my eyes. I still have to turn my head to an uncomfortable posture to prevent the mask from pushing into my pillows. This mask also gives me the itches. I'm constantly breaking seal to reach inside and scratch my nose.

Latest attempts w/ Airfit P10 :
Going against the CPAP specialists recommendations, I've asked to try the nasal pillows. And so far, despite being a "mouth breather", I've had more success. It's not as hard as I thought it would be to breathe exclusively thru my nose, but I don't know yet if I will be able to keep that up for long periods of time when I'm unconscious. I'm confident that I can train myself with practice to breathe exclusively thru my nose, given that I'm not experiencing any congestion due to allergies. Also, I just had an unrelated surgery, and I'm taking advantage of the narcotic's prescribed to me, (the drowsy effects), to assist with getting used to sleeping with a CPAP. But as with before, changing masks may solve old problems, but the creates all new ones.

1) Slight difficulty exhaling. I have the EPR set to 4 which is the maximum. Yet there's still some resistance to exhaling. I've also tried washing what I think is the vents with a toothbrush and soapy water, but to no avail. Its just doesn't want to let out air at the proper rate, so I wind up exhaling into the tube fighting against the machine pressure and inhaling some of my own breath again. It nearly feels like an asthma attack. The best thing I can do to remedy this is to hold off putting on the mask, until i'm very relaxed and close to dozing off, when my breathing and lung volume has decreased significantly, and I can comfortably exhale slowly, then it's not a problem. I wonder if others have the same issue?

2) Slight burning sensation where the pillows make contact with my nose. It's not a temperature burn, feels like a chemical burn, sorta like icyhot. Being a brand new thing, I thought maybe there's some kind of chemical residue from the manufacturing process. I've washed the pillows with hot soapy water but the problem persists. I've also tried using the large size, but it just doesn't fit, so i'm continuing my efforts with medium. So, now I'm assuming this sensation is an air temperature thing, I've attached the humidifier, that I have never used before, and have it on the lowest setting. This has relived the icyhot sensation in my nose to some degree, but I can't stand warm humid air, because it gives me respiratory issues over time. At this juncture i'm hoping that with enough practice I'll just get used to the icyhot sensation and it will stop bothering me over time.

Final Thoughts:
I ain't gonna lie. I really hate this CPAP machine. I hate the way it messes with my natural way of breathing when I'm trying to achieve deep sleep. I hate the way I was diagnosed, I feel they should have done a simple take home test, like everyone else I know that has been prescribed a CPAP. I genuinely feel like I get the best sleep ever when I don't use the CPAP, but I'm willing to admit that maybe there is a problem with my quality of sleep, since I seem to need so much of it. I've been trying for over a year to become compliant with this machine, and I'll admit, I probably should have been trying harder. Now that I've switched from full face mask to nasal pillows, I have a new hope and confidence that I will achieve compliance.

Hi janv,

javn wrote: The sleep study:
...
Huge problem here, I only sleep on my belly. Noop can't be done here, you have to sleep on your back. So I was awake the entire night bored out of my mind. I maybe dosed off for 15-20 minutes a couple of times and they said that was good enough for a diagnosis. The next day I was called (and awoken), by the doctors office with the results, and they said I need to use a CPAP, and that I should avoid sleeping on my back. Go figure.

What's important here is that they come to the conclusion that you need CPAP, your sleep study would have been a problem if you didn't have been diagnose because of lack of sleep... What was your Dx AHI? They ask to sleep on your back to mesure the worst case scenario of apnea because sleep apnea is often worst while sleeping on your back, espacialy OSA. If you really want to know how much time you really sleep during that sleep study you can (and should) ask for the full report of that night, it will give you the real total sleep time and your sleep architecture.

javn wrote:My own conclusion:
I've only had a few good sleep sessions at home with my cpap. I've acquired the software to examine the cpap data my machine creates on the memory card. I found it all very interesting, but I don't think it's anything unusual or cause for alarm. When I sleep, and I'm in deep sleep, my breathing becomes shallow over time as well as my breathing rate, to the point i'm only taking in small puffs of air at increasingly long pauses. Sometimes I do stop breathing but nothing longer than 10 seconds, and when it does happen I'll take one long slow breath and each breath after that becomes shorter and shorter with longer gaps in between. So from what I've studied this is NOT obstructive sleep apnea, but it's still classified as apnea. This is my norm, this is what i'm used to, and maybe I'm wrong, but I don't feel that this kind of deep sleep breathing is a problem, ...

I'm not sure what your saying here... Do you think you don't have sleep apnea? Because, if you are, you can't tell this by looking at your machine data... If you had a good titration (right pressure setting) the data you're looking at is is your breathing pattern ON therapy so, not seeing apnea IS expected in that case, it's just mean your machine is doing his job!

javn wrote:..but my CPAP machine does, and it starts cycling up and forcing me to take these deeper breaths of air, which consequentially pull me out of my deep sleep. It ruins my whole day, I feel exahusted, unrested, and deprived. In fact, I feel so bad after a full CPAP cession I wind up taking a secondary nap half way into my day without the CPAP to get the deep sleep I have been deprived of.

You should try turning off EPR for a few nights, that's the only thing I can think of that would cause this sensation if you have a S9 Autoset. Also, can you give us your AHI for a typical night?

javn wrote:Latest attempts w/ Airfit P10 :
Going against the CPAP specialists recommendations, I've asked to try the nasal pillows. And so far, despite being a "mouth breather", I've had more success. It's not as hard as I thought it would be to breathe exclusively thru my nose, but I don't know yet if I will be able to keep that up for long periods of time when I'm unconscious.

You can check your leaks data, higher leaks can be cause by mouth breathing.

javn wrote:1) Slight difficulty exhaling. I have the EPR set to 4 which is the maximum. Yet there's still some resistance to exhaling. I've also tried washing what I think is the vents with a toothbrush and soapy water, but to no avail. Its just doesn't want to let out air at the proper rate, so I wind up exhaling into the tube fighting against the machine pressure and inhaling some of my own breath again. It nearly feels like an asthma attack. The best thing I can do to remedy this is to hold off putting on the mask, until i'm very relaxed and close to dozing off, when my breathing and lung volume has decreased significantly, and I can comfortably exhale slowly, then it's not a problem. I wonder if others have the same issue?

Make sure you changed your setting in the S9 for your new kind of mask, S9 have a setting for pillow, nasal and FFM. What is your pressure setting? Sometime this sensation happen at first, particulary if you have high pressure setting but it often wear off with time.

javn wrote:2) Slight burning sensation where the pillows make contact with my nose...

I don't know if it's what I think it is, but many time when people start to use pillow mask we have a sore nostril after a week or so, it usualy last less than a week, at least for me. There is some thread here on the subject just do a search for "sore nose" and pillow mask.

javn wrote:Final Thoughts:
I ain't gonna lie. I really hate this CPAP machine. I hate the way it messes with my natural way of breathing when I'm trying to achieve deep sleep. I hate the way I was diagnosed, I feel they should have done a simple take home test, like everyone else I know that has been prescribed a CPAP. I genuinely feel like I get the best sleep ever when I don't use the CPAP, but I'm willing to admit that maybe there is a problem with my quality of sleep, since I seem to need so much of it. I've been trying for over a year to become compliant with this machine, and I'll admit, I probably should have been trying harder. Now that I've switched from full face mask to nasal pillows, I have a new hope and confidence that I will achieve compliance.

You surely ain't the first and won't be the last with that feeling... One thing for sure don't give up, sleep apnea is a seious condition. I would certainly get the full report of my sleep study to see what has been going on that night... What do you think a home test would have done better? Can you post a Sleepyhead screenshot of a typical night so we can see what's going on?

I use the F10 and haven't experienced the problems you're having with it except for leaks. It sounds to me like you have your cheek straps too tight. Trying loosening them, and put your mask on when lying down, your face changes shape because of gravity. In the beginning I had the same problems you had with leaks, and no matter what I did I could not control the leaks until I learned about mask liners. They were a game changer for me, and I will never put my mask on without them! Two sources: Pad-a-Cheek at http://www.padacheek.com, and RemZzzs, available from many DMEs and online from the hosts of this forum at https://www.cpap.com. I tried both, and they both help with leaks, but I prefer the RemZzzs. I have a bunch of them, and use a fresh one each night, washing them in a mesh bag with my laundry, laying them out flat to dry and ironing them to retain the shape. Both styles last a long time, and there's little need to purchase new ones.

You do not have to sleep on your back, in fact it's preferable to sleep on your stomach or your side... Back sleeping, at least for a while, is necessary for titration. You can do a forum search for "falcon position" to find some threads and a description of the position that has helped many stomach sleepers manage the mask and still sleep.

My first advise is relax for a minute, really. I hear you about the VA telling you things you disagree with. From what I hear you do have to watch what they do, that being said this group sounds okay to me.

During the sleep study they are NOT trying to fix anything, that try to CAUSE apneas to happen: on your back is the best way. Personally I can lay down on the bed at anytime of day and very soon feel my breathing restricted. I am pretty sure that apnea happens while we sleep because we are laying down and relaxing, I don't think that sleep actually triggers it. Sleep is more of an activity when apnea's will happen IF they are going to happen.

Everything you describe sure sounds like sleep apnea that you have been able to compensate for over the years and accept as fine. Well while you have been able to get by with the way your handling it, that is not what sleep is supposed to be like. You have adapted and overcome your sleep apnea without the use of a machine, well maybe it's time to let the machine do its job and let yourself get on with doing something more productive.

Adapt the machine and get it to overcome you apnea. They work right out of the box, but there is no way they can do their best at it, you have to tweak them and tune them up. There are way more settings, that may or not be important to you specifically, than you might think. Also as you fine tune the beast, you may find that all kinds of unhelpful things are getting triggered, your brain just does not yet understand that the machine is triggering something and what that something is, so it takes the "best guess" and may times will get it wrong. When I started I heard "it's like an alien sitting on your face blowing air up your nose" well personally I had had zero experience with that, my brain was telling me all kinds of different, and wrong, things were going on.

so what to do. You have lots of experience with this exercise, my guess anyway, in the military were you ever expected to do something that wasn't ideal? What did they tell you? "Make it work" My guess is that you did just that.
Stop fighting the crappy situation and "make it work"

All of this stuff, well most of it, happens when you are asleep which makes it more challenging. You have to change a setting, by one step and one at a time, get some sleep and see if you feel better or worse in the morning. Sometimes you will make a change and know before you sleep that the change was in the wrong direction or the wrong thing to change. change it back and make the next change.

Take your best guess as to what is causing you to fight the mask, in order if importance. Humidity, temperature, exhaling into pressure, air blowing into your nose... Remember your brain will be telling you it something it knows and that might not be what it is. For me my brain was saying I was congested, but when I took the mask off there was zero congestion. Well it just does not come and go that fast, my brain was wrong. For me it was exhaling into pressure and I thought that that feeling was congestion, I increased the EPR setting and bingo the congestion went away.

One setting at a time, get it to the best it can be, then move to the next. You may have to go back and change a setting again because one thing effected another. If you in the younger generation your hacking CPAP, if your in my generation your adapting and over coming, if your in the previous generation of making do with something that is totally FUBAR'd. You have done and can do this.

If you are having problems figuring out what to change, ask in this thread. We have all been there, no shortage of advise in this forum.

You can get to the point where when you wake up, you wonder when in the night you took you mask off, only to discover that it's still on, your breathing fine with zero effort AND you had a great nights sleep. Sometimes everything just works.

Sorry for the very long response, something about your story just clicked with me

OSAHell thanks for your reply. I'll try to answer some of your questions as best I can.

What's important here is that they come to the conclusion that you need CPAP, your sleep study would have been a problem if you didn't have been diagnose because of lack of sleep... What was your Dx AHI? They ask to sleep on your back to mesure the worst case scenario of apnea because sleep apnea is often worst while sleeping on your back, espacialy OSA. If you really want to know how much time you really sleep during that sleep study you can (and should) ask for the full report of that night, it will give you the real total sleep time and your sleep architecture.

Please forgive my ignorance, I have no idea what a Dx AHI is. The sleep study was done nearly a year ago, and they made it pretty clear not to ask for the results, as they only provide to the doctor, so I would have to ask him. The only thing that gets passed down to me is that I have mixed apnea, (both osa and central). I guess I can understand that having me sleep on my back is the worst case scenario, indeed, because I never ever sleep on my back, it makes me snore terribly. So the reason it upsets me is because by making me sleep on my back, it guarantees a positive diagnosis for OSA, which doesn't occur at home because I never sleep on my back. To me, (my logic), that's like telling me there's a problem with my car, when there isn't, then taking my car for a test drive on a track meant for off road vehicles, and because it failed (obviously), now I have to invest in 4 point restraints, suspension, shocks, a roll cage, and a fire suppression system, to drive my car on normal paved roads.

I'm not sure what your saying here... Do you think you don't have sleep apnea? Because, if you are, you can't tell this by looking at your machine data... If you had a good titration (right pressure setting) the data you're looking at is is your breathing pattern ON therapy so, not seeing apnea IS expected in that case, it's just mean your machine is doing his job!

I'm convinced I have sleep apnea, I'm just not fully convinced it's a serious problem. If I can achieve compliance with using the machine, then I should reasonably see some improvements in my life, like less exhaustion, and requiring less sleep to get a full nights rest, so I'm told. I can't say whether it is or isn't working until I achieve compliance, so that is my goal. The current strategy, is to get used to the new nasal pillows, by wearing them each night as long as I can stand it, shooting for longer and longer times each consecutive night. There will be setbacks, but I've been reassured I will eventually start to be able to sleep thru the night if I keep trying every night.

You should try turning off EPR for a few nights, that's the only thing I can think of that would cause this sensation if you have a S9 Autoset. Also, can you give us your AHI for a typical night?

I will try this tonight, I'm already curious to see what will happen. Also, do you recommend using the ramp? I have mine set at 15 minutes, I'm thinking it might be easier to acclimate to it from the get go with the ramp disabled. Kinda like jumping into a cold swimming pool instead of inching in. Dunno what my AHI is at the moment because I haven't been able to achieve sleep while wearing it. I'm sure I'll get there soon, last night I actually slept an hour and a half before my first roll over. I start sleeping on my left side, (snuggling the cat), then at some point before I go into my deep sleep, I wake up a little, roll over onto my belly for the remainder of the night. Its at that moment I have the most trouble with my CPAP.

Make sure you changed your setting in the S9 for your new kind of mask, S9 have a setting for pillow, nasal and FFM. What is your pressure setting? Sometime this sensation happen at first, particulary if you have high pressure setting but it often wear off with time.

Funny you should mention this. I asked the cpap lady at the va about this setting, and she told me it to leave it on mask, "because it doesn't make a difference". I won't go into some of the other things she said, but the short story is; she was unprofessional with me, and now I am having doubts about her qualifications. (part of the reason I'm here at these forums as well). My min/max pressure settings are at 5 and 15. I turned on the autoset feature myself. Also I have noted that in switching to the pillows, the machine no longer shuts off automatically when I remove the mask, I have to turn it off manually. The instructions manual for the pillows did mention that autoset may not work properly, without any further elaboration. If you don't mind my asking, what does the mask type setting do exactly? Up until this point I assumed it was just a blip for the sleep data, but now I suspect it does more.

I don't know if it's what I think it is, but many time when people start to use pillow mask we have a sore nostril after a week or so, it usualy last less than a week, at least for me. There is some thread here on the subject just do a search for "sore nose" and pillow mask.

The shape of the pillows is a kind of wedge, so if the mask is on too tight it will stretch the nostrils a little bit. This in combination with colder air pressure rushing thru is very likely giving me the "icyhot" sensation, and I am indeed getting more and more used to it each night. At this point I figure its like breaking in a new pair of boots, if the boots don't change your feets will eventually, until you find comfort.

You surely ain't the first and won't be the last with that feeling... One thing for sure don't give up, sleep apnea is a seious condition. I would certainly get the full report of my sleep study to see what has been going on that night... What do you think a home test would have done better? Can you post a Sleepyhead screenshot of a typical night so we can see what's going on?

My old man had to do the sleep study some time ago, they sent him home with a simple device with two elastic chest straps to measure his breathing patterns, easy peasy. Turned out he didn't need a CPAP, he just needed oxygen. Like I was elaborating on earlier with the car analogy, I feel that it's an unscientific diagnosis, if the test is rigged for failure. But, since I have the device now, I'm gonna try to make it work and see what happens. On the screenshot, sure I don't mind, but I use Resscan 3, not sure what you would want a screencap of, the data is pretty streached out, alot of panning and zooming to really see it in detail. Does sleepyhead read data from resmed cpap? I may look into it.

javn wrote:The sleep study was done nearly a year ago, and they made it pretty clear not to ask for the results, as they only provide to the doctor, so I would have to ask him.

US Laws give you the right to that report whether the sleep center wants to or not. Normally you can get it from your doctor simply by asking for it. I got mine from the sleep center itself after filling out a simple HIPAA consent form.

They cannot deny your this report. Period. They are required to keep it on file for at least 7 years as well.

That report provides a lot of details like how long you actually slept, what positions, what your O2 levels were, status of all the sensors, and if you get the full report (might cost money) you can get the video's of your sleep study itself.

PoolQ, I think you have hit the nail on the head with some of my issues. My brain is fighting this. In my normal sleep mode I let gravity do the work on the exhale, and all the air comes wooshing out rapidly. If something impedes my exhale, my automatic response is "I must be having another asthma attack", so instead of relaxing, I fight back even harder. I have to fight fatigue and exhaustion every day, just to do simple house chores like mowing the lawn. When I'm tired, really really tired, my whole body needs rest, even my lungs, so I get angry at the machine for making me breathe more than I'm used to, more than I need to, more than is necessary... because when I sleep hard, its personal to me, a deep meditative sleep, and I enjoy it. I breathe slowly and shallowly, and my autonomous system corrects it from time to time with a little yawn, which triggers the machine into "OMG TIME TO SAVE HIS LIFE" mode, when I was never in any threat. And looking at the data from a while ago, the last so called "obstructive" event I had, was just a simple yawn, the machine kept ramping up the pressure to it's max setting till I was good and awake, (and a little cranky for being awoken too early).

Thank you for your response, I'm really going to take it to heart.

Krelvin wrote:

javn wrote:The sleep study was done nearly a year ago, and they made it pretty clear not to ask for the results, as they only provide to the doctor, so I would have to ask him.

US Laws give you the right to that report whether the sleep center wants to or not. Normally you can get it from your doctor simply by asking for it. I got mine from the sleep center itself after filling out a simple HIPAA consent form.

They cannot deny your this report. Period. They are required to keep it on file for at least 7 years as well.

That report provides a lot of details like how long you actually slept, what positions, what your O2 levels were, status of all the sensors, and if you get the full report (might cost money) you can get the video's of your sleep study itself.

I hear what you're saying Krelvin, and I don't doubt you. It sounded fishy to me too. Wanna know another weird thing about it? Amongst all the forms they had me fill out and sign before the test began, one seemed to be a contractual agreement, (I don't remember the exact words), but they essentially had me sign an agreement that I would only buy, or could only buy cpap equipment and supplies from them. Which struck me as kind of an odd thing, because the VA just contracts them to do the sleep test, I get all my supplies directly from VA hospital, I'm not sure exactly what in the heck that form was going on about.

library lady wrote: You do not have to sleep on your back, in fact it's preferable to sleep on your stomach or your side... Back sleeping, at least for a while, is necessary for titration. You can do a forum search for "falcon position" to find some threads and a description of the position that has helped many stomach sleepers manage the mask and still sleep.

Looked it up and believe it or not, I sleep almost just like that. Only difference is I do something slightly different with my arms and pillow. Sleeping this way has great weight distribution, easy posture, and excellent blood flow circulation to my extremities.

You were asked to back sleep in the study so they could get a worst case scenario... it's done all the time so testers, researchers, etc. can have a bottom line view of how bad things get when you do back sleep and use that for diagnosis and recommended treatment.

Sorry to hear you've spent a year floundering trying to make this work and have had little help from your providers. Hopefully that floundering stops here. Get your report so you're dealing with facts. Not sure of the details of your efforts to get them before, but sometimes the procedure for specialty providers is to send the report to the referring doctor for follow-up. At any rate, somebody will give you your report. Find out who. And you want the detailed report that is a few pages, not just the single page summary and cover letter that often is all that goes to the referring doctor. Your report can give clues to the data gods here to help interpret what they are seeing in your nightly data. If you have complex sleep apnea, the advice they give you may be different from if you have garden variety OSA. I'm no prophet, but I predict you are very close now to getting therapeutic treatment and better sleep. BTW, that small time of sleep in your study will still probably yield more info than an all night(or day) home study. Nothing about all this is easy or convenient - just necessary. Good luck going forward.

javn wrote:OSAHell thanks for your reply. I'll try to answer some of your questions as best I can.

No problem, as you can see here, lots of people are here to help and they'll help you the best they can because we have basically all been true some problems when we started on this life long trip of sleep apnea...

javn wrote:Please forgive my ignorance, I have no idea what a Dx AHI is. The sleep study was done nearly a year ago, and they made it pretty clear not to ask for the results, as they only provide to the doctor, so I would have to ask him. The only thing that gets passed down to me is that I have mixed apnea, (both osa and central). I guess I can understand that having me sleep on my back is the worst case scenario, indeed, because I never ever sleep on my back, it makes me snore terribly. So the reason it upsets me is because by making me sleep on my back, it guarantees a positive diagnosis for OSA, which doesn't occur at home because I never sleep on my back. To me, (my logic), that's like telling me there's a problem with my car, when there isn't, then taking my car for a test drive on a track meant for off road vehicles, and because it failed (obviously), now I have to invest in 4 point restraints, suspension, shocks, a roll cage, and a fire suppression system, to drive my car on normal paved roads.

- AHI stands for Apnea/Hypopnea Index, the index is by hour. So an AHI of 16 mean you stop (apnea) and/or partially stop (hypopnea) breathing for at least 10 second 16 time per hour.
- Dx stands for diagnosis, the most commons ones in sleep apnea are mild Obstructive Sleep Apnea (OSA) (mild=AHI between 5-15), moderate OSA (moderate=AHI between 15 and 30) and severe OSA (severe=AHI over 30). There are others Dx for sleep apnea but those represent probably 85-90% of dx. We often have a specific AHI number with the Dx for example, Dx: moderate OSA with an AHI 23
- Depending on the severity of your central sleep apnea (CSA) or mixed OSA and CSA or mixed apnea or whatever they told you, it could be really hard to treat those with a simple CPAP/APAP like you have... And CSA is rarely position dependent which mean that side sleeping won't be of much help... One more reason to get your full report to know what going on if you ask me!
- I'm not from the US but like others said, it your right to have your FULL sleep study report and your script (prescription). Maybe the lab can't give it to you directly but your doc could and have to if you ask him.
- I'm also not sleeping on my back, this problem date back to childhood and now I understand why! It's to the point where I told them for my 2 sleep study and my titratrion that I would never EVER fall asleep if they force me to do it, even with sleep aid. They simply told me to sleep in the position I'm use to. To my surprise I did turn on my back during sleep for maybe 20-40 min a night, at least on my 2 sleep study night. My AHI was more than 4 time higher while on my back, but even with just sleeping on my side I had enough apneas to require a CPAP.
- How do you know you don't have OSA or how severe it is while at home? You said your GF say you snore and noticed you stop breathing.... You can't have better evidences than that... Add this to how you feel during the day and your sleep study and it's pretty much self explanatory! Also sleeping on your side is "sometime" the first thing they recommend when you have very very "mild" OSA, with small desat and when you're not too symptomatic. But not if you show enough sign of central apnea. In your case you already sleep on you side, showed central or mixed apnea or whatever and have the classic symptoms, so there's not much doubts in my mind that you would benefit from xPAP if your therapy is well optimized.
- you car analogy was good but I think, to follow your analogy, a more appropriate one would be: The repair shop told you that your brake have a problem and that it could be dangerous if you're driving at 100 km/hour and need to do an emergency stop and just you answer that you live in the city and never go on the freeway and that you are a really good driver who has never had an accident... Anyway, I think you see my point!

javn wrote:I'm convinced I have sleep apnea, I'm just not fully convinced it's a serious problem. If I can achieve compliance with using the machine, then I should reasonably see some improvements in my life, like less exhaustion, and requiring less sleep to get a full nights rest, so I'm told. I can't say whether it is or isn't working until I achieve compliance, so that is my goal. The current strategy, is to get used to the new nasal pillows, by wearing them each night as long as I can stand it, shooting for longer and longer times each consecutive night. There will be setbacks, but I've been reassured I will eventually start to be able to sleep thru the night if I keep trying every night.

Remember that compliance is not just 4 hours a night, this is for insurance cie. Compliance to get REAL benefit for YOU is to ALWAYS sleep with the mask on. And your on the right track by trying to use it more and more, every one is different, but the goal is the same. By doing so it might just take longer to feel the benefit from it but if it's the only way for you, just be aware of that fact.

javn wrote:I will try this tonight, I'm already curious to see what will happen. Also, do you recommend using the ramp? I have mine set at 15 minutes, I'm thinking it might be easier to acclimate to it from the get go with the ramp disabled. Kinda like jumping into a cold swimming pool instead of inching in. Dunno what my AHI is at the moment because I haven't been able to achieve sleep while wearing it. I'm sure I'll get there soon, last night I actually slept an hour and a half before my first roll over. I start sleeping on my left side, (snuggling the cat), then at some point before I go into my deep sleep, I wake up a little, roll over onto my belly for the remainder of the night. Its at that moment I have the most trouble with my CPAP.

- Many don't use RAMP, I don't, and with your already low starting pressure (5-15) the RAMP is pretty much useless.
- If you don't sleep while on the machine your AHI should be 0 or really close to unless you have an other health problem then sleep apnea. Also don't expect any benefit!

javn wrote:Funny you should mention this. I asked the cpap lady at the va about this setting, and she told me it to leave it on mask, "because it doesn't make a difference". I won't go into some of the other things she said, but the short story is; she was unprofessional with me, and now I am having doubts about her qualifications. (part of the reason I'm here at these forums as well). My min/max pressure settings are at 5 and 15. I turned on the autoset feature myself. Also I have noted that in switching to the pillows, the machine no longer shuts off automatically when I remove the mask, I have to turn it off manually. The instructions manual for the pillows did mention that autoset may not work properly, without any further elaboration. If you don't mind my asking, what does the mask type setting do exactly? Up until this point I assumed it was just a blip for the sleep data, but now I suspect it does more.

- On my Resmed S9 Adapt my choice of setting are "Full Face, Pillows, Nasal. For your S9 Autoset it should be the same and for the Airfit P10 you should set it to Pillow.
- Every mask has some "resistance" and there's often even more diff between mask types and that why those setting exist. The machine has to account for that resistance to deliver the right pressure. I don't know if it make a big diff in therapy but for me it seem to be doing great things for confort.
- Can't tell you how you'll feel it but don't expect big change, it's often really subtil and some don't even notice the diff. I've tried a Respironics before and they have a similar setting but much less user friendly (setting options was X0, X1, X2...) and I had to find the right one by trying them all... And that made the diff. for me, I was just unable to fall asleep with the wrong ones.
- Why did you turn On the Autoset feature if don't even really sleep with your machine yet? What was the setting before you change it? In your sleep study was there a part during the night where they put a CPAP mask on your face (it called a titration)?
- Resmed S9 Autoset have some problem with pillow mask and the auto on/off feature but not always. I've been on a Resmed S9 Autoset before and had this problem but I don't have it with my current Resmed S9 Adapt (same Airfit P10 mask).

javn wrote:The shape of the pillows is a kind of wedge, so if the mask is on too tight it will stretch the nostrils a little bit. This in combination with colder air pressure rushing thru is very likely giving me the "icyhot" sensation, and I am indeed getting more and more used to it each night. At this point I figure its like breaking in a new pair of boots, if the boots don't change your feets will eventually, until you find comfort.

Yep, just like shoes! Also, if you find the air to be to cold you can ajuste the humidifier setting.

javn wrote:My old man had to do the sleep study some time ago, they sent him home with a simple device with two elastic chest straps to measure his breathing patterns, easy peasy. Turned out he didn't need a CPAP, he just needed oxygen. Like I was elaborating on earlier with the car analogy, I feel that it's an unscientific diagnosis, if the test is rigged for failure. But, since I have the device now, I'm gonna try to make it work and see what happens. On the screenshot, sure I don't mind, but I use Resscan 3, not sure what you would want a screencap of, the data is pretty streached out, alot of panning and zooming to really see it in detail. Does sleepyhead read data from resmed cpap? I may look into it.

Lab study are pretty much always more detailed and rigurous than an home test... And I would much more trust a lab test than a home test, especially for mild OSA or anything else central.
As for ResScan, I don't really have much experience with ResScan and Sleepyhead show the infos in a much more useful way to troubleshoot therapy's problem IMHO. And basically every people here that give advise know and often use SleepyHead. And yes, SleepyHead support Resmed S9 machine, you can even use both software if you want. Just do an import in each software while your SD card is in your computer!
Just do a search in those thread, there's a thread where they show an example of what is the most useful SleepyHeaad screenshot to begin with, sorry don't have this link in my bookmark. When we need more detailed or specific infos after seeing that first screenshot we just tell you what we want but we can get lots of valuable info with this one. Maybe someone here will pinch in and give you a direct link.

javn wrote:PoolQ, I think you have hit the nail on the head with some of my issues. My brain is fighting this. In my normal sleep mode I let gravity do the work on the exhale, and all the air comes wooshing out rapidly. If something impedes my exhale, my automatic response is "I must be having another asthma attack", so instead of relaxing, I fight back even harder. I have to fight fatigue and exhaustion every day, just to do simple house chores like mowing the lawn. When I'm tired, really really tired, my whole body needs rest, even my lungs, so I get angry at the machine for making me breathe more than I'm used to, more than I need to, more than is necessary... because when I sleep hard, its personal to me, a deep meditative sleep, and I enjoy it. I breathe slowly and shallowly, and my autonomous system corrects it from time to time with a little yawn, which triggers the machine into "OMG TIME TO SAVE HIS LIFE" mode, when I was never in any threat. And looking at the data from a while ago, the last so called "obstructive" event I had, was just a simple yawn, the machine kept ramping up the pressure to it's max setting till I was good and awake, (and a little cranky for being awoken too early).

Thank you for your response, I'm really going to take it to heart.

From what I understand any machines below the top end servo machines ($4,000 and up) take a average of 3 breaths before making changes and cannot "fill in" missing breaths, the servos do it breath by breath. I have no idea what they look at to decide to raise the pressure or not. I have seen my plots go up and I cannot see why they did that, most of the time there are no apnea's there which means that whatever they did, it worked. These thing turn our breathing upside down as in it's easy to inhale (assisted by pressure) and harder to exhale, this really messed me up with all kinds of false signals. I am only on week 3 and won't go back and visit the doc for another 2 weeks.

Get the clinicians manual for your machine (we can provide links) and read up on all the settings that you can change.

Bumpty Bump. . . Forgot I was a member of this forum, but a happy birthday email came my way and reminded me. And so.. I've decided to share the conclusion to my CPAP story.

I never got used to using the CPAP, and to be fair I probably did not try hard enough. I would give it my best shot for 3 nights in a row, and by the 4th night I'm so tired and frustrated I give up on it entirely in favor of good old fashioned sleep. Weeks go by, next checkup from the doctor and I get a stern lecture, which always resulted in him making me a referral appointment to the specialist. The specialist always offers no practical advice at all, they do however allow me to choose a different mask. They only have 3 kinds, and I had tried them all, each having unique problems, that I couldn't overcome. Rinse, Wash, Repeat for the next year.

On my last appointment with my doctor, he brings it up again, and again I try to explain the issues I was having, additionally I told him that the specialists weren't helping. So I asked him one simple question. "What is more dangerous to me, not using this machine, or sleep deprivation caused by using it"? So he refers me to the sleep doctor to discuss my issues. He also bargained with me that if the sleep doctor couldn't help me with my issues, that he would quit harassing me about using the CPAP.

So I go to see the sleep doctor. I explain how unhelpful the specialists are, I told him about my bad experiences with how the sleep study went, and to my shock and surprise, he actually listened to me. Turns out this is the guy that has the actual sleep lab results. He looks everything up and on the spot determines that I don't actually have sleep apnea bad enough to warrant the use of a CPAP machine. Specifically hes said I was "within normal range". In fact he seemed a little surprised that my general doc was even recommending it. After that he backpaddled a little bit, and said that even though I don't really need to use a CPAP, I should still use one because they say long term use is benefical to the heart. He offered me a prescription to Ambian, but I turned it down. He also had a catalogue of CPAP parts and showed me a different kind of nasal pillow and headstrap combination, that is supposed to be easier for belly sleepers, and I turned that down too. And that was the end of that, or so I thought.

After my last appointment with my general doc, I had a follow up with the nurse to discuss my lab results, and schedule my next yearly exam. Turned out everything was ok, but then she mentioned that the doctor would like me to use a CPAP. I just rolled my eyes and said, "are you serious"? She says to me, "I know right, he recommends it to everyone". I just let it go at that, but if he is going to keep harassing me over using a CPAP, when I clearly do not need one, I thinking I'm going to have to make some phone calls to the Main VA Hospital, and request to be seen by a different doctor.

TLDR... turns out I don't need to use a CPAP at all. I just have a pushy doctor that believes EVERYONE should use a CPAP, for better health.