New (UARS) -- lots of questions

[Jas_williams]

Whilst your having leaks they are less than 24 l/m so your machine can cope, also if they dont disturb you no need to worry.

[Pugsy]

Unless the leaks are massively huge and prolonged (yours isn't) or they are waking you up I wouldn't worry about them.
Now any leak that wakes us up no matter the size is unwanted.

The centrals you are having...even if every single one of them was the real deal you don't have enough of them to be a concern and I am betting most aren't real anyway. Ignore them.

The apnea event data from the machine isn't going to help you much because you don't have much of a problem with the AHI that points to OSA. That area is never going to really be very useful to you.

Your plan to start low and slow and take your time working up the settings is a good one.
You have to get the sleep first before anything else matters.
Your aerophagia issues complicate things....go even slower because you don't want to trade one problem for another.

Give yourself ample time at each setting change to evaluate the results. At least a week...preferably 2 unless the change results in something bad happening.

[zan]

Give yourself ample time at each setting change to evaluate the results. At least a week...preferably 2 unless the change results in something bad happening.

Ugh, my patience is again put to the test... but you're probably right. In a perfect world I'd be able to find my ideal settings before the start of next semester; it was my struggles in school that pushed me to getting evaluated in the first place, and I'd love to not have to repeat that. I can definitely feel how sensitive my body is to anything sleep-related so I'll do my best to keep my progress slow and stable.

[Miss Emerita]

You've come so far, Zan--congratulations! I know it is hard to make adjustments slowly, but that's actually going to get you to your goals more efficiently. Festina lente, as they said in ancient Rome.

I know you're on a budget, so I hesitate to suggest Somnifix mouth-tape strips. They are not cheap, but they work very well. Many people also report good results with multiple layers of micropore tape, which is a lot less expensive. Be sure to make a doubled-over tab at one side so you can get the tape off fast if you need to.

I hope over winter break you start feeling a lot better rested.

[slowriter]

68deg F on the hose as per slowriter's suggestion to start using it. I lowered the EPAP a little because I wanted to maximize comfort, and I think it did help with reducing aerophagia.

Default temp is 81 I believe

You don't have any OAs at the 6 min EPAP, so that seems fine.

[zan]

You've come so far, Zan--congratulations! I know it is hard to make adjustments slowly, but that's actually going to get you to your goals more efficiently. Festina lente, as they said in ancient Rome.

I know you're on a budget, so I hesitate to suggest Somnifix mouth-tape strips. They are not cheap, but they work very well. Many people also report good results with multiple layers of micropore tape, which is a lot less expensive. Be sure to make a doubled-over tab at one side so you can get the tape off fast if you need to.

I hope over winter break you start feeling a lot better rested.

Thank you for the well-wishes! Now I'm all fuzzy inside!
Band-aid adhesive actually seems like a pretty good alternative for now: besides being good only for a single application and a tad painful to remove, they don't irritate my skin, can be breathed through if needed, and are cheap and ubiquitous. I'm going to try cutting / applying them differently tonight to see if there's any particular configuration that works best. Thanks for the suggestions though, if I find a deal breaker within the band-aids I'll be glad to have options.

68deg F on the hose as per slowriter's suggestion to start using it. I lowered the EPAP a little because I wanted to maximize comfort, and I think it did help with reducing aerophagia.

Default temp is 81 I believe

You don't have any OAs at the 6 min EPAP, so that seems fine.

Does default temp matter? As far as I know, the main reasons to use heat is for comfort (and I'm fine with the heat off / cool air) and to prevent or reduce rainout.

[Pugsy]

Hose air temp is for comfort and/or rain out prevention if needed.
A lot will depend on your bedroom ambient temperature in terms of comfort. I like cool air too but in the winter with my bedroom sometimes getting below 60 degrees....that's a little too cool for my comfort. Makes my nose hurt when it gets too cold with all that air blowing up in it. I call it ice cube nose syndrome for lack of any official term.
Rain out...condensation in the mask or hose...deal with it if it happens. It won't hurt anything but your sleep if it happens.
Depending on the ambient room temp and the settings and the mask used...it may not even be an issue.

Comfort is critical to good sleep. Let's face it, we don't sleep so great if we aren't comfortable.

I am not long in the patience department myself so I do understand but every time you start getting frustrated or in a rush....remember that sleep is the number one thing right now because without sleep nothing else matters much.

UARS is a bitch because we have so little to go on to gauge things. How you we feel is so subjective and so easily screwed with even if UARS wasn't in the picture. People seem to do better when they have some little something to hold on to as a measurement tool.
With UARS you don't get much to hold on to. OSA is a cake walk compared to UARS because we got lots to hold on to for measuring OSA.

[zan]

UARS is a bitch because we have so little to go on to gauge things. How you we feel is so subjective and so easily screwed with even if UARS wasn't in the picture. People seem to do better when they have some little something to hold on to as a measurement tool.
With UARS you don't get much to hold on to. OSA is a cake walk compared to UARS because we got lots to hold on to for measuring OSA.

UARS is definitely a bitch in that there are no data markers for others to base input upon; I recall you and others noting that those with UARS tend to be hypersensitive in many other ways besides to reduced airflow... on the optimistic side, I think this kind of sensitivity can also help with evaluating treatment efficacy. I'm not thrilled to wake up at every little disturbance, but at least being acutely aware to my response to different stimuli serves as its own kind of data. It'd be nice if I could quantify my experiences so you all could read it easily, and it'd be great to have a deeper pool of research to draw ideas and understanding, but alas the sleep medicine field is still.... sleeping on the subject. (ba dum tss)

I'm just grateful for the support of all the members here. Knowing (or not knowing) how difficult UARS can be, I can't imagine trying to treat this disorder by myself.

[palerider]

OSCAR: My leak rates look crazy toward the end of the night.

Well, they look crazier because of the scale of the chart, it's hard to read but the top is only 29, you only broke the 24lpm limit a couple times, very briefly. If you'll go and right click on the y axis numbers, and select 'dotted lines' you can turn on a little red dotted line at 24lpm, so you can see how close you're getting to 'too much'.

. Because of the massive leaks I'm not sure whether the CAs are legitimate measurements or not, but I guess it's not so important right now because I'm still in the stage of getting used to the machine.

The leaks aren't massive, they're 'fine' as far as the machine is concerned, whether the CAs are legit, or whether it's because you were waking up and snuffling around in the pillow doesn't matter, because a couple CAs, whether real or not, are totally inconsequential, ignore them.

[palerider]

Give yourself ample time at each setting change to evaluate the results. At least a week...preferably 2 unless the change results in something bad happening.

Ugh, my patience is again put to the test... but you're probably right. In a perfect world I'd be able to find my ideal settings before the start of next semester; it was my struggles in school that pushed me to getting evaluated in the first place, and I'd love to not have to repeat that. I can definitely feel how sensitive my body is to anything sleep-related so I'll do my best to keep my progress slow and stable.

The issue is, sleep varies from hour to hour, and importantly, night to night, so when you're getting good numbers, you need to work on averages, not any one nights results. We all have 'good nights' and we all have 'bad nights', you don't want to react to a single bad night here and there...

Make adjustments based on how you're doing ... on average.

[slowriter]

UARS is a bitch because we have so little to go on to gauge things. How you we feel is so subjective and so easily screwed with even if UARS wasn't in the picture. People seem to do better when they have some little something to hold on to as a measurement tool.
With UARS you don't get much to hold on to. OSA is a cake walk compared to UARS because we got lots to hold on to for measuring OSA.

True, but there is one variable that does seem to matter for UARS (which is to say, to correlate with RERAs): flow limitation (FL).

Makes sense since you can't have the arousal without the FL.

At a general level, I look at the activity on the FL graph and the max and 95% numbers on the statistics sidebar.

Zan's actually look pretty good; at least for now, which I why I support the suggestion for him/her to be patient.

More specifically, Barry Krakow and others have been advocating for awhile that the way to treat UARS is to "normalize" the airflow curves. The way to assess that is to look at some "normal" asleep breathing, and look at the shape of the curves. If they're smooth, you're good. If they're jagged, there's room for tweaking.

[Pugsy]

Evaluating FL zoomed in is going to take a huge learning curve. Time and experience and IMHO more patience. A LOT more patience.
Someone who just got their machine a few days ago and is still having issues falling asleep and staying asleep along with visits from the aerophagia monster....man, that's a lot of variables already in the FL graph and potential RERAs and arousals from lord knows what.
Not to mention the normal hourly variations and night to night variations in sleep once we do get it.

It's why I suggest targeting the important stuff first (like actually getting the sleep) so a person has reliable asleep information to put under the microscope.

Rome wasn't built in a day and we can't learn all this stuff or expect overnight miracles in a day either.

Patience.....and that's a hard one for sure.

[slowriter]

Evaluating FL zoomed in is going to take a huge learning curve. Time and experience and IMHO more patience. A LOT more patience.
Someone who just got their machine a few days ago and is still having issues falling asleep and staying asleep along with visits from the aerophagia monster....man, that's a lot of variables already in the FL graph and potential RERAs and arousals from lord knows what.
Not to mention the normal hourly variations and night to night variations in sleep once we do get it.

It's why I suggest targeting the important stuff first (like actually getting the sleep) so a person has reliable asleep information to put under the microscope.

Rome wasn't built in a day and we can't learn all this stuff or expect overnight miracles in a day either.

Patience.....and that's a hard one for sure.

Totally, 100%, agree!

[zan]

Had a rocky night, but not because of the machine, just typical crappy sleep.

That was night 2 at my chosen beginner settings (6 EPAP, 15 Max IPAP, PS 5), I'm aiming to go for 5 nights at these settings (barring any significant issues that may crop up) before I start to up the pressures. If I'm still doing well at my starting pressures by day 5, I'll begin to bump EPAP by increments of 0.2 and Max IPAP by increments of 0.4 and hold the new pressure for another 5 -7 days, and if all seems well and I'm able to sleep just fine I'll move on to the next setting (working until failure, as it were). If I'm having problems at a particular setting I might stay at that pressure for a bit longer to see if there are any other issues that need to be dealt with, or if it's a plain issue of wrong pressure. To avoid junking up the front page, I'll refrain from posting my sleep logs unless I have a problem or until the trial period for a particular pressure is over.

Does this seem like a good plan? Is 5 - 7 days enough time to evaluate a pressure setting, or should I wait longer between pressure changes? Is 0.2 cm too small of an increment?

[Pugsy]

Being that I am also not long in the patience department and a .2 cm change isn't much and having to use it for a week....maybe I would take bigger steps.
Since your machine won't technically do 0.5 cm increments...Maybe 0.6 cm increments????

Just a thought...you are self titrating without a lot to go on and 0.2 cm difference here or there isn't going to likely be a deal maker or breaker.

That's for minimum EPAP....not keep changing PS by that much at all.
Don't go over PS 6 cm unless you are real careful and what for centrals.