Bragging rights thread. Accomplishments.

[Pugsy]

The number in the box is NOT the number of events that occurred at that pressure. It's the somewhat artificial index for the events---i.e. it's the average number of events expected to happen in one FULL HOUR of being at that pressure based on the actual data gathered in the limited amount of time at that pressure

This is what I understood it to be also. What the numbers might be when extrapolated to an hourly index with all other conditions being the same (and of course they aren't ).

[robysue]

I wish I could understand leaks better.

You and I and many others wish we could understand the leak data provided by the PR S1 better.

From what I've read, PR system 1 cannot figure the mask intentional leak, thus cannot determine precisely unintentional leaks?

Unlike the Resmed S9 there is no setting on the PR S1 or in the Encore Software that provides a spot for inputing the mask or type of mask you are using. But be aware: On the S9, that mask setting just allows the S9 to figure in an approximate expected, intentional leak rate, which it then subtracts off the leak data before displaying it. So the leak lines posted from ResScan often appear much flatter than they actually are when the machine is detecting no unintentional leaks. I never actually found out what those approximate intentional leak rates in the S9 and ResScan algorithms were. Nor did I ever find out if they were "fuzzy" in the since of treating total leaks between two separate numbers as 0.0 L/min unintentional leak rates.

Furthermore, there really isn't a precise intentional leak rate for any given mask at any given pressure. The expected leak rate is (or should) always be given with a margin of error: Mask A at Pressure B has a built-in leak rate of 22 L/min +/- 3 L/min means that the expected leak rate could be anything between 19 and 25 L/min.

And because there really isn't any kind of a precise intentional leak rate for a given mask at a given pressure, there's never a way to compute a precise unintentional leak rate.

So, just select "unintentional leaks" instead of "total leaks" and the line graph will show leaks from a baseline of zero? Acceptable leaks is a more flat line graph, with few spikes.
Correct me please or add more info if you can.

Regardless of whether you select "unintentional leaks" or "total leaks" the bottom of the leak graph will be labeled 0. But the meaning of that 0 changes.

Total Leak Rate Graphs in Encore
In the Total Leak Rate graph, the y = 0 line means NO AIR at all is leaking from the exhaust vents of the mask or anywhere else in the system. So the leak rate should never drop to y = 0 since that would indicate the exhaust vents are COMPLETELY blocked AND the mask is extremely well sealed. Not a good thing since you'd be rebreathing CO2 in this case.

So what does an excellent leak line look like if you use Total Leak Rate Data? It should be flat (or fuzzy flat with a minimum amount of very small wiggles) and located somewhere near your mask's published intentional leak rate for your pressure. And by "somewhere near" I mean it's either between or very close to:

y = Published leak rate + published margin of error
and
y = Published leak rate - published margin of error

A "good" leak line might have a few smallish bumps above the rest of the line, but not many and not very high ones. And NO spikes or BIG bumps.

To make this concrete: If your mask's leak rate at your pressure is described as 22 L/min +/- 3 L/min, you want your leak line to look flat or fuzzy flat and be located somewhere between (or not far from) y=19 and y=25 when you are looking at Total Leak Rate Graphs.


Unintentional Leak Rate Graphs in Encore
When you select "Unintentional leaks" in Encore, the graph shows leaks from a baseline of y = 0. And the y = 0 line is supposed to indicate that there is NO unintentional leaking going on. This would indicate that the corresponding point on the Total Leak Rate graph had a y-coordinate equal to the intentional leak rate for the mask at the given pressure. But since Encore and the S1 have no provision for entering mask information, no-one knows exactly how Encore decide what number to subtract off the Total Leak Rate to convert it to the Unintentional Leak Rate. My best guess as a mathematician? Encore is doing some kind of statistical analysis based on the flattest and lowest parts of the overall leak curve to get a decent guesstimate of the estimated intentional leak rate and then it adds on some (small) margin of error, which is also based on some kind of statistical analysis. And then my guess is that Encore computes the Unintentional Leak rate data by first defining:

magic number = estimated intentional leak rate + a small margin of error

And then it subtracts magic number from all the Total Leak Rate data to create the Unintentional Leak Rate data. And at the same time, Encore re-defines any negative Unintentional Leak Rate data as 0. (Negative Unintentional Leak rates result from places where Total Leak Rate < magic number.)

The result of this process? Well, first, this simply translates the original Total Leak Rate graph down by magic number of units. And second, the "fuzziness" is taken out of the part of the Total Leak Rate curve where there's no real leaking going on because any place where Total Leak <= magic number gets plotted directly on the y = 0 line of the Unintentional Leak Rate graph.

So what does an excellent leak line for an Unintentional Leak Rate graph look like? Absolutely flat and on the x axis for the whole night. And a good leak line is flat except for a few small bumps here and there.

Is one better than the other?
Not really. They show the same data. However, if you ARE having some middle and large size leaks that you are wondering about, using the Unintentional Leak rate graph will make it easier to figure out just how large those leaks are.

[lars4life]

.

[robysue]

The number in the box is NOT the number of events that occurred at that pressure. It's the somewhat artificial index for the events---i.e. it's the average number of events expected to happen in one FULL HOUR of being at that pressure based on the actual data gathered in the limited amount of time at that pressure

This is what I understood it to be also. What the numbers might be when extrapolated to an hourly index with all other conditions being the same (and of course they aren't ).

And yet we're happy to talk about our REM AHI's as being such-and-such a number based often based on less than 15 or 20 minutes of data (and sometimes significantly less than 15 minutes of data. And these REM AHI's extrapolated in exactly the same way. Which begs the question: How do we know how good or bad our AHI would really be in a full hour of REM if our REM AHI is based on a scant 10 minutes of data?

And it goes the other way too: In the discussion of the numbers that come from our diagnostic PSG, we often get told things like: Your AHI= 30. That means you stop breathing once every two minutes. All night long!! As if there's a little stop watch in our upper airway saying, "It's been two minutes, time to collapse for 15 seconds," over and over all night long.

When in reality that AHI=30 most likley indicates are some periods during the night where (short) apneas are much more frequently---maybe even as frequently as twice a minute---and there are a few stretches where we're breathing more or less normally for 10 or 15 minutes at a time with maybe one apnea or two apneas. Those clusters can be frightful when you consider them by themselves. And the longer stretches of almost normal breathing may explain why we actually haven't died yet---we are getting a bit of sleep here and there and it's just enough to keep us going, but not enough to let us thrive.

But it's time for me to say good night and quite the silly math posts.

[MeghanRF]

I just would like to say that this thread has brought tears to my eyes. Because I think we all have such shared struggles, I really do feel moved reading about everyone's accomplishments. And I do feel so much gratitude for the people here and this forum. I don't know that I would have figured out how to use this CPAP machine and finally be getting sleep and rest for the first time I can remember in my life.

so THANK YOU to all of you.

My major accomplishment:

When I started in January, I couldn't handle it on my face for 5 minutes awake... then I managed to get up to being able to wear it for an hour or two, though I'd have to take it off to fall asleep. Then I started falling asleep with it on for an hour or two, though would often wake up choking, gasping for breath and ripping the thing off my face. Then... I started sinking in to the feeling of the air pressure, and found my body adjusted to it.

And now...

I sleep all night, every night, fairly comfortably with the mask. And I have never felt better.

There's more to figure out for sure... I wouldn't mind not having red marks all over my face in the morning. But I am very grateful. And proud of all of us for facing these hoses and masks each night bravely!

[napstress]

the cat is slapping at my mask trying to get me up

sleep last night that was fragmented due to the animals

I know this is supposed to be a thread for success stories and not necessarily for advice, but you've been so helpful to me that I feel compelled to let you know what has worked for me, who had a cat friend who lived to be 21-1/2 years old.

1) I would feed her once a day—just before I would go to bed. This eliminated her jumping on my head in the morning: she was after food.

2) She slept on my bed for 19 years—sometimes under the covers. Then-boyfriend didn't think it was hygienic, and once she was no longer able to jump up on the bed easily (arthritis in back legs), we wouldn't let her in the bedroom. I'd wake up every time she tried to claw her way up onto the bed. I thought it would be impossible to ban her from the bedroom after 19 years. I thought she'd claw at the door and meow her head off, but it was actually very easy. We taped tin foil down for a couple of feet in front of the door. Cats hate to walk on tin foil. We were able to step over it easily (I generally have my wits about me in the middle of the night, which is unfortunate in terms of being well-rested, but makes stepping over a tin-foiled section of floor in the dark easier than for most people). It worked: I heard one tin-foil *crink* and nothing else. They're pretty adaptable, even after 19 years.

Don't know anything about dogs and their dynamics with cats, but maybe getting the cat out of your bedroom might remove one disturbance from the mix.

[Pugsy]

Don't know anything about dogs and their dynamics with cats, but maybe getting the cat out of your bedroom might remove one disturbance from the mix.

Actually the cat in question just likes to mess with the dog in question because the dog is terrified of the cat. I live out in the country. 4 cats, 3 dogs, and numerous other critters. The cat is mostly an outside cat. He prefers it. When there are storms around seems like 3 of the cats do like to come in for the night and I allow it. When I have 3 cats and one dog in bed I actually don't have any problems. It is when the one cat is by himself that he gets bored and messes with the dog. The dog is a hyper little pug dog that is just sure that cat is going to kill him. Funniest thing to watch is that cat pouncing on the poor dog. Not so funny to feel the dog bounce all over me at 3 AM to get away from cat.

The other 2 dogs sleep in the laundry room. Simply not enough room in the bed and one of the dogs would chew up a bowling ball and can't be trusted.

My recent bad night is not common for me. Just happened to be a weird mix of animals and not resting well in general.
Most of the time it is just me and the Pug. Husband is over the road truck driver and gone a lot.

[LinkC]

Haven't had an OA yet this week. AHI is .2 (due entirely to Hypops).

[magnus]

Joined this forum in 2007 and been a long time lurker since then. I thought it was about time to post a message of thanks to the members and those that manage this forum.

I've learned a lot from this site and after reading through a number of struggles and success stories, I've been sleeping well, having stuck it out to using my machine. The first few months were a struggle but now I can't imagine not having my machine and mask with me when I go to sleep. The quality of my life has improved and I'm no longer the butt of jokes in the office as the guy who nods off during meetings

[DavidCarolina]

1. Im learning to sleep on my side and stomach.

2. My AHI numbers are very good, although I still suffer apneas at level 10.

3. Im planning an oximeter test shortly

4. Im using less Klonopin, down to maybe 2 mg per day instead of 5

5. I can walk a slow hour a day, five days a week usually.

6. im working on eating healthier, and working toward my correct weight

[oscar98]

I love the idea of a brag thread. Over my time lurking here I've seen plenty of grumbling about what isn't working and how hard it is to adjust and we all know that is true, but it is equally true that it can be done.

Thanks to the great peeps on the forum I've not slept once without cpap in 13 months. I acquired a data capable machine and learned how to use it, learned how to manage a misbehaving hose, leaks, pillows that just got in the way and masks that just were a royal pain. My AHI is ALWAYS below 1. ALWAYS.

Before cpap I was a college drop out who went from being an honors student with a 3.8 gpa to being so exhausted I didn't care anymore and dropped my gpa to a 2.8 in no time and then left school with no intention of returning because my doctor insisted nothing was wrong with me when I knew there was. At the time I saw no hope of ever feeling better. The doctor was convinced I was depressed and I was convinced I was sick.

In 13 months my life has changed dramatically.
1. I NEVER take naps - no need to.
2. I NEVER fall asleep at the wheel, that's probably a good thing.
3. I go go go everyday like I used to when I was younger. I'm rarely at home and I like it that way.
4. I returned to college and in only 2 semesters brought that 2.8 back up to a 3.4.
5. I just graduated last weekend. WOOT
6. AND BEST OF ALL, I've been accepted into graduate school in a rather competitive field because of the hard work I was able to put in this past year.

Who do I owe a debt of gratitude to? The people on this forum who posted a wealth of information that prevented me from having disfiguring surgery and giving up on CPAP. The people that convinced me to get the machine out of the closet and strap it to my face. I certainly dont owe any gratitude to doctors who never explained a darn thing and certainly not to any DME that has done nothing but take advantage of me. CPAP talk members taught me the ins and out and provided the support that made it possible to succeed.

13 months ago I had the same issues every newbie has, I was exhausted, I was a claustrophobic mess constantly ripping the mask off in my sleep and I was convinced it would never work.

Now, my cpap is my best friend and I refuse to sleep without it.

I hope this helps encourage someone else just starting out. I think we all feel overwhelmed in the beginning but before you know it, cpap becomes a way of life and a normal part of your bedtime routine.

[Pugsy]

I love the idea of a brag thread. Over my time lurking here I've seen plenty of grumbling about what isn't working and how hard it is to adjust and we all know that is true, but it is equally true that it can be done.

Thank you for your comments Oscar98. I did start this thread to give people (especially the newbies) a chance to brag about small victories. I know we already have the success thread sticky (sounds like you are good candidate for that one) but so many people don't feel like they warrant the success thread. They are still battling various things and still struggling.

Since this forum is designed to help people with problems we are just going to have people with problems here. Might seem like cpap is going to cause problems with everyone.... I figure we aren't going to be visited by the people who put the mask on one night and never experience a problem that sends them in search of solutions which might lead them here.

Now here's a chance for me to show the newbies that even the old timers can have crappy nights. I will post couple of my reports from the other day. Horrible night that was preceded by a near perfect night. And I changed absolutely nothing in my routine...

Here is the textbook perfect night. Below it is the crappy night.
Also a good example of why I don't put too much stock in that 90% number being the holy grail standard to use as a base number. Sure I could use that 17 cm all the time but who wants to when other nights I don't need it.

[DoriC]

Pugsy, on that bad night, were you waking up, were the pressure fluctuations bothering you? Do you have any thoughts on why the difference for you? Can you describe what "crappy" means to you? You know I'm asking to get some input that I don't get from "my patient". Yours is a perfect example of what happens to us occasionally and it lasts for a few days, then settles down again. I never know if I should try "tweaking" or what to do. Right now Mike is returning to his old habit of putting his hand way under his pillow which is dislodging the mask and he's getting some LL. Thanks.

[SnoozyQ]

(I mentioned this in another thread, but thought more appropriate here)

Not a huge deal really, but I'm not a walker or a runner...and before the self made changes in my therapy, I wouldn't have even considered such a thing. Hell, I wasn't walking to the mailbox...
I participated in a 5K (fundraiser for brain tumor research) a few weeks ago. I walked,didn't run, but I did it and finished in under an hour. And I even did the "family fun walk" of 1.5 miles a couple of hours later!

My family was so proud of me. It felt good, but almost sad, bc they were so proud of me for something so insignificant.It was almost like "Hey, good for you Blob! You moved!"...I know that's not what they mean at all, but....
I appreciated the well-needed support.

[Pugsy]

Pugsy, on that bad night, were you waking up, were the pressure fluctuations bothering you? Do you have any thoughts on why the difference for you? Can you describe what "crappy" means to you? You know I'm asking to get some input that I don't get from "my patient". Yours is a perfect example of what happens to us occasionally and it lasts for a few days, then settles down again. I never know if I should try "tweaking" or what to do. Right now Mike is returning to his old habit of putting his hand way under his pillow which is dislodging the mask and he's getting some LL. Thanks.

Crappy as in report visually when compared to the previous textbook perfect report that looks like I wasn't even sleeping..
I felt fine. Certainly didn't feel as bad as that report looked.
To be honest I was completely blown away when I saw that report. I felt no different than I had after the previous textbook perfect night. Absolutely no different. Pressure fluctuations have never bothered me. I slept through every bit of that ugly roller coaster.

I have no explanation as to why the large difference. Changed nothing. Mask fit unchanged, not even tiny adjustment in a strap. Meds were exactly my usual meds at bedtime. I thought long and hard about it. I did the download right before bed that next night so things were still fresh in my mind. Time in bed was pretty much the same. I couldn't come up with anything that I could maybe point a finger at.

While it is common for me to have some "good" nights visually as the reports look and some rather erratic nights, none have been this markedly different till these 2 and so happened that they were back to back nights. BTW the night after that last night the next report was back to being nice and ordinary and dull. Not picture perfect but not looking like a roller coaster. Again, didn't change a thing. Made sure of it just to see if maybe something was up with mask.

BTW I didn't feel like running a marathon after the "perfect" night either...

I don't drink alcohol, so that isn't a factor. Never eat meals late due to GERD issues sometimes. Nothing done any differently than I normally do that could maybe be an explanation. Could be a good explanation why my sleep study titration was off on my prescribed pressure settings. Maybe the night of the sleep study I had one of those "unremarkable" good nights to treat...

I think that we just have different "nights" sometimes in regards to sleep. Probably different nights in regards to events as well. While we can't realistically expect to cover every major conceivable variable, we just do the best we can and accept that sometimes those "bad" nights may happen for whatever reason and there isn't a lot we can do about it. Other than laughing at myself and sharing that ugly report with a friend who is struggling with her own ugly reports, I didn't really worry about it. I did try to think if there was anything out of the ordinary just because I tend to think along those lines, but I just couldn't come up with anything.