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3 months in.... still so much to learn
#1
Hi all!

I just went through my first mask change the other week, and with it has come a lot of reflection of what the past 3 months have been like since starting this treatment.

I was diagnosed back in December with both an AHI and RDI of 60.2 events/hr. It was kind of a shock to me-- I mean I'd always snored since I was younger, and both my dad and his father were diagnosed with sleep apnea years ago. So in that sense, it wasn't a huge surprise. But unlike what my father went through 10 years ago, I hadn't begun experiencing any real symptoms, so I had no idea just how bad it was. Then again, I spent 90% of the study supine (on my back) and I always sleep on my stomach to lessen my snoring, for my wife's sake. I may always wonder what my AHI/RDI would have been on my stomach. In any case, I really have my wife's nagging to thank for discovering all of this, and I'm very appreciative. Knowing what I know now, I do believe she's a life saver.

At my 2nd (CPAP) study, I had a terrible experience. The constant pressured bothered me to no end, and I felt terribly drowsy and aggravated the next morning despite having outstanding new statistics during the new study. This is perhaps the most baffling part of my experience. I actually awoke feeling far better, fresh and ready to go after my original study. I've always been an early riser, eager to start each day. I can operate effectively on as little as 3 hours of sleep, and usually don't sleep much past 6-7 hours. Then after a single night of CPAP, I suddenly turned into a miserable yawning zombie, myself. I had to tell the DME company not to ship me the machine that was prescribed because I needed to discuss the experience with my doctor. After doing so, he recommended an auto bipap, and life's been great ever since.

Before my dad was diagnosed, I remember him being a zombie-- falling asleep every time he touched a chair. I was even in the car with him one time while he dozed off behind the wheel and started drifting. It all happened so gradually, that we didn't really notice how much it took hold of him. He's had chronic pain from a previous injury, and we all just associated it with that. Eventually, a doctor noticed that his face was abnormally red. We'd always associated it with our fair skin-- sunburn. But the doc insisted that he get checked out, and it turned out his body was churning out massive amounts of red blood cells to increase his oxygen efficiency to compensate for his apnea. He's damn lucky he never had a stroke! Within a week or so of treatment, he looked like a brand new person. But not even 10 years later, the lingering effects had him in several bouts of atrial fibrillation eventually leading to an ablation procedure (ZAP!) which seems to have fixed it for good. Recently, my uncle is going through this same thing now, and he's just getting to his own apnea diagnosis now.

With all those stories in mind, it feels weird to be going through this at 33 without any real cause. I think the most significant side-effect I've experienced is realizing that for maybe the past 8 years, I've been sleeping far lighter than before. It seemed any little thing could wake me up. Ironic since in my youth, I was known for being able to sleep through anything at all. My original study showed me at 82% in stage N2 sleep and only 2% in stage N3, so no wonder. I truly hope that's the worst of it for me, but all these external reminders of danger have been nagging at me to keep this under control.

I've had a great experience with the treatment so far. I started off with a Philips Nuance mask after asking for a P10, which was my father's mask at the time. The first couple days were a nightmare because I coincidentally came down with a severe stuffy nose. I got nervous getting warning emails about non-compliance, but my nose cleared up enough to breathe a little after 2 nights, and I never had to explain myself after all. I continued using that mask these past 3 months, and decided to try the DreamWear in order to avoid having the hose hanging off my face torquing the mask sometimes. So far so good, but the DreamWear sure is noisy compared to the whisper-quiet Nuance! I lived with it for a week, but now I'm using earplugs. No more complaints! My wife's been away with family, so I'm anxious to see how she reacts to the new noisy mask when she returns.

With the change in masks, I suddenly became preoccupied with discovering which mask is better for my treatment. My AHI has averaged out to 3.6 over these past few months, so the Nuance has definitely been effective. There hasn't been any obvious change since switching to the DreamWear, so I guess it just boils down to comfort at this point. Nonetheless, I was bothered by the fact that these machines try to do so much to tell us how we're sleeping, but they don't address the ultimate question: Are we getting enough oxygen at night? So I did a bit of research and ended up buying a Contec CMS50IW pulse oximeter. It's still in the mail, but I can't wait to gather some good stats to complement all this sleep data!

I just tried out SleepyHead for the first time today, and I'm kicking myself for not doing this sooner! It's amazing how much depth it provides. I'm still a bit lost with all of the different results, but I hope to learn new things as I try to interpret each day's results. Though I also don't want to spend tons of time each day agonizing over every detail. Does anyone have any good tips on how they use SleepyHead at a quick-glance to find important points in their treatment? Are there any good ways to try to compare data from one mask to the next?

Cheers!
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#2
Hello Shawn, the learning experience is all about experimentation as you have found out.

There are some great folks to bounce ideas off on this forum. Post your Sleepyhead results and watch as they interpret the numbers. As a non-mathematical type I'm in awe of them.

Best wishes for your continuing therapy.
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#3
G'day Shawn, welcome to Apnea Board and thanks for sharing your experience with us.

The good news is that you've been diagnosed 30 years before most of us, which means you'll have 30 years without apnea doing you damage. It sounds like you're right on top of your therapy, noisy mask aside. (Getting the right mask is the hardest part).

Have a look here: https://sleep.tnet.com/resources/sleepyhead/shorganize to see the best way to organse your SleepyHead output to see the most important information. As Holden4th said, there are plenty of people here who can help you interpret the charts and dial in optimised therapy.

DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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#4
Welcome to the forum shawn42! Glad you found us. Sounds like you are off to a great start, and as DeepBreathing pointed out; at least you have been diagnosed years ahead of a lot of us here! And yes, Sleepyhead is a great tool for us to watch our therapy results with.
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#5
Welcome to the forum. Interesting reflection on your part, and one more for you to consider...With two studies and all that work, you still were issued an auto CPAP with factory settings of 4-20. What's with that? Usually the goal of titration is to identify the optimum pressure(s). My guess is if you stick around, there are improvements in comfort and effectiveness still waiting for you to discover them.
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#6
you might want to look here http://www.apneaboard.com/forums/Thread-...s-the-bomb. I found even a zero AHI doesn't mean you are sleeping well.

Not to make you paranoid but NO ONE is as interested in your sleep as are you and SleepyHead may change your life so much for the better.
I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
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#7
(06-21-2016, 05:22 AM)DeepBreathing Wrote: Have a look here: https://sleep.tnet.com/resources/sleepyhead/shorganize to see the best way to organse your SleepyHead output to see the most important information. As Holden4th said, there are plenty of people here who can help you interpret the charts and dial in optimised therapy.

Thanks! I noticed the guide wants to see a "Flow Limit" graph, but I can't find one anywhere in my data. Maybe my machine doesn't collect that info?


(06-21-2016, 07:30 AM)Sleeprider Wrote: Welcome to the forum. Interesting reflection on your part, and one more for you to consider...With two studies and all that work, you still were issued an auto CPAP with factory settings of 4-20. What's with that? Usually the goal of titration is to identify the optimum pressure(s). My guess is if you stick around, there are improvements in comfort and effectiveness still waiting for you to discover them.

I think my original settings were 2-10 and after my 30-day follow up, I told the doc that I had no complaints whatsoever with the pressure, so he raised me to 4-10. My 2nd study had dialed in my ideal CPAP setting at 7. With that, it claimed I had an AHI & RDI of 1.1 events/hr (0 central events) and my oxygen nadir was 91% (compared to a nadir of 74% during my original study with 37 minutes spent under 88%). At this point, I still feel like I could handle more pressure (especially now that I have earplugs to abate the noise), but is more pressure always better?

Edit: I went back to my earliest data and scrolled down to "Machine Settings", but it still says 4-10 EPAP/IPAP with 2-4 PS. I just imported all of this data yesterday for the first time. Do you think it doesn't record old machine settings with old sleep data? Or do you think my machine never got adjusted? I wish I could remember more clearly how the doc said he wanted to change my pressures back in March....


(06-21-2016, 08:04 AM)Mark Douglas Wrote: you might want to look here http://www.apneaboard.com/forums/Thread-...s-the-bomb. I found even a zero AHI doesn't mean you are sleeping well.

Not to make you paranoid but NO ONE is as interested in your sleep as are you and SleepyHead may change your life so much for the better.

I certainly agree with your insight. That link was 404'd, but I just pasted it into Google and it came right up. Weird. Anyway, I tried following your instructions in preferences to add the user flags and it prompted me to re-index and restart the app, which I did. But the user flag events don't show up in my historical data. Does it only come to light in data imported from now on? Could it be a limitation of my machine?
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#8
Hi shawn42,
WELCOME! to the forum.!
It's good to hear that you are pro-active with your CPAP therapy and that you have such a good attitude.
Much success to you, hang in there for more responses to your post and keep up the good work.
trish6hundred
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#9
Welcome Shawn42! Machine, multiple masks, oximeter, SleepyHead, oh yeah, you got it bad! Grin You will fit in well around here! Here are some links to information about SleepyHead, lots to read!
http://www.apneaboard.com/wiki/index.php...SleepyHead
Google for "Pugsys Pointers SleepyHead" for the other one.
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#10
By "historical data", do you mean the daily Events chart or the bar graphs on the Overview page? I just turned on the option to display the User-Defined events yesterday. They show up in my historical daily Events charts but not in the bar graphs.

When I checked my long-term "Overview" bar graph just now, I saw a blank "NR" (Non-responding events) graph for a minute, then the next time I scrolled by, it was gone. I looked in the box at the bottom right of the page where you can turn the graphs displayed on and off. It says that "NR" is on, but I don't see a graph for it. I use the "BrokenGL" version of SleepyHead.

My version of SleepyHead also doesn't show the latest day's data in the bar graphs. I am guessing that I will probably have an NR graph showing up tomorrow with one day's data in it.

(06-21-2016, 04:24 PM)shawn42 Wrote: Anyway, I tried following your instructions in preferences to add the user flags and it prompted me to re-index and restart the app, which I did. But the user flag events don't show up in my historical data. Does it only come to light in data imported from now on? Could it be a limitation of my machine?

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