New (UARS) -- lots of questions

[zan]

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.

I'll meet that in the middle -- 0.4cm increments for 3 - 5 days, and moving up if all is good. For me I think I'd fare better with somewhat smaller increases only because I am so sensitive to changes at night (might sound like a bit of bull, coming from someone who began this journey swinging from 7cm to 12cm, but I'm smarter now than I was half a week ago!). I'm still having issues with cotton mouth / tape coming off in the middle of the night, so I want to spend at least one more night at my beginning pressures to get that sorted out before declaring myself ready to take the next step.

Finding a good compromise between my need for thoroughness and my impatience to start sleeping better is the foundation of this outline. I want to hold myself accountable to doing this rule-out titration right without setting myself up for agony. Can't wait to start feeling better! :p

[slowriter]

To me, it kind of depends on what the data says.

Maybe collect a few nights at this setting, and assuming you can get a reasonably good night of sleep, post the results.

My guess, from what you've posted so far, is you won't need to tweak min EPAP much, if at all.

Whether you can benefit from tweaking the PS will depend on what we see, mainly with the FL.

[Pugsy]

Sounds like a plan.
Number one goal...sleep first.
I don't envy you one bit. I gladly take my easy to fix OSA over UARS any day of the week.
I got enough crap messing with my sleep as it is without UARS.
Between the dogs, cats, my old arthritic body, some dumb ass texting me at 6 AM on one of the few nights I was actually sound asleep at 6 AM, or hubby calling me 1 hour before the usual time and of course I was sound asleep, the insomnia monster coming for a little visit....I just can't win.

[palerider]

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 IPAP, PS 5)

Those settings aren't right. An EPAP of 6 and a PS of 5 gives an IPAP of 11. To avoid confusion, the right way to state things is that you have a minEPAP of 6 and a maxIPAP of 15 (should be 25) and a PS of 5.

[palerider]

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.

Yeah, 0.2 I inconsequential for almost everyone.

[Pugsy]

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.

Yeah, 0.2 I inconsequential for almost everyone.

About the only time I would do that small of an increment is I was looking for a fine line between optimizing therapy that was critically needed and preventing a potential problem (aerophagia or maybe centrals if there was a line where they seemed to be tied to).
There's a time and place for just about everything but since UARS historically simply needs more pressure than it looks like we need (based on what the machine can show us)....I see no need in taking forever to get there which is what 0.2 cm increments for a week at a time would take. There's a limit to even my patience. I don't always practice what I preach....big surprise there huh?

[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 IPAP, PS 5)

Those settings aren't right. An EPAP of 6 and a PS of 5 gives an IPAP of 11. To avoid confusion, the right way to state things is that you have a minEPAP of 6 and a maxIPAP of 15 (should be 25) and a PS of 5.

You're right, it was Max IPAP of 15.

Maybe collect a few nights at this setting, and assuming you can get a reasonably good night of sleep, post the results.

My guess, from what you've posted so far, is you won't need to tweak min EPAP much, if at all.

Whether you can benefit from tweaking the PS will depend on what we see, mainly with the FL.

Have you found pressure support to be the deciding variable in treating UARS? I definitely like keeping my EPAP below 7, it's so easy to breathe I can almost forget about the machine. Would you suggest I be making the adjustments to PS instead of EPAP?

----------------

Since I've already got a conversation started, I guess I'll post last night's log + data:

Bedtime ~10:30pm, took ~60-75mg trazodone + 3mg melatonin before bed, woke up at 6:45 and decided not to go back to bed

Settings: Same as night before. Only upped the Ti Max from 3.0s (?) -> 4.0s because I take a lot of deep, long breaths before I fall asleep.

Subjectively: Woke up almost an hour earlier than my alarm, which usually is a bad sign for the day ahead in terms of concentration and being slow to start. Sure enough, my ADHD has been pretty bad right this morning, lots of difficulties paying attention to even passive tasks like listening to music or following a thought. The band-aid mouth-taping strategy isn't lasting the full night and I'm still waking up with dry throat + mouth, so I'll have to look for micropore tape or Somnifix at RiteAid today. Still had some aerophagia when I woke up, but better than last night; it's almost gone.
I felt that I slept like trash overall last night and I'm not sure if it's for any reason in particular other than a bad night. Wearing the mask was almost inconsequential, which I take to be a good sign that I'm getting used to it, although I'm not 100% there and I do know that my sleep is still being disturbed by mask-related issues (mostly dry mouth, mild aerophagia, and adjusting my mask).

OSCAR: Lots more flow limitations than the night before, looking more like Wednesday night. Maybe those are the reason for my poor sleep?? I can't wait to have a bit more data under my belt. The smaller leaks were probably due to me getting more comfortable with the mask, so I'm relaxing and pushing my face into my pillows more. Not too concerned about it. The bigger leaks near the end of the night might have contributed to me waking up earlier; I'm not prepared to speculate about it until I see it happening again.

[palerider]

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.

Yeah, 0.2 I inconsequential for almost everyone.

About the only time I would do that small of an increment is I was looking for a fine line between optimizing therapy that was critically needed and preventing a potential problem (aerophagia or maybe centrals if there was a line where they seemed to be tied to).
There's a time and place for just about everything but since UARS historically simply needs more pressure than it looks like we need (based on what the machine can show us)....I see no need in taking forever to get there which is what 0.2 cm increments for a week at a time would take. There's a limit to even my patience. I don't always practice what I preach....big surprise there huh?

Indeed, like with zonker sneaking up the pressure because he was trying to avoid the aerophagia monster.

Well, you preach patience when it's warranted.

[palerider]

I'd bump minEPAP to 7, the machine raises epap in reaction to everything, so why not have a higher minEPAP and see if that will smoothe out the pressure lines?

[zan]

I'd bump minEPAP to 7, the machine raises epap in reaction to everything, so why not have a higher minEPAP and see if that will smoothe out the pressure lines?

Alright, I think I can handle going to 6.4cm minEPAP tonight, I don't want to make any large leaps tonight only because I want to make sure the mouth leak issue is dealt with at a lower pressure before playing with too many variables. Tomorrow night I can probably complete the jump to 7 minEPAP.

I'm also not a fan of taking forever to do things, but if there's anything I've learned from the experience of trying to get diagnosed and treated for this damn disorder, it's to keep my expectations as low as possible and always add several days / weeks to the predicted time that something will happen.

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.

Slowriter, your thoughts? Is it worth delving into higher PS to treat UARS? Sorry if I'm treating you too much like the know-all of UARS, but I have found much of your advice to me and others very helpful. And I've read that one Barry Krakow article on how he found that most UARS patients needed a significant gap between IPAP / EPAP to see results.

[Pugsy]

Just be careful with the higher PS. For some people it can trigger numerous centrals. Not saying it will in your case but just be careful.
I had a friend who called me up in a panic because she thought she had suddenly developed central apnea.
She had a bilevel machine and had decided on a whim to increase the PS to 10...she had been using 4 or 5 at the time.
How she even slept with the PS at 10 is beyond me....that's a big step for sure but she did but she paid the price with massive centrals popping up.
Her line for centrals ended up being 6 PS. This is an area where everyone is different.
I have another friend who gets about 20 centrals per hour at PS of 4 and essentially none with PS of 3. That 1 cm difference can sometimes be a deal maker or breaker in some people.

You can mess with PS but just be careful.

[slowriter]

I was just suggesting not to raise min EPAP since a) you said you had problems with aerophagia, and b) you don't have OA events at 6.

But palerider raises an interesting point, which is that you use the pressure graph to help self-titrate. Except, the other way to do that here is higher PS.

In my own experiments I went back-and-forth between min EPAP and PS tweaks to achieve a more even pressure graph.

I stand by my suggestion above for you, though. It might be you need more PS, but I would give it time. And yeah, you don't want to go over 6.

[slowriter]

... I've read that one Barry Krakow article on how he found that most UARS patients needed a significant gap between IPAP / EPAP to see results.

True. But I've also read him saying the average PS for his UARS patients was 4 or 5.

[palerider]

I'd bump minEPAP to 7, the machine raises epap in reaction to everything, so why not have a higher minEPAP and see if that will smoothe out the pressure lines?

Alright, I think I can handle going to 6.4cm minEPAP tonight, I don't want to make any large leaps tonight only because I want to make sure the mouth leak issue is dealt with at a lower pressure before playing with too many variables. Tomorrow night I can probably complete the jump to 7 minEPAP.

One cm is not a "large leap" it's pretty inconsequential, and unlikely to really be noticed, but, do what you want.

[zan]

One cm is not a "large leap" it's pretty inconsequential, and unlikely to really be noticed, but, do what you want.

Considering the difference in ease of falling asleep when I was on 7cm EPAP versus 6cm, it might be consequential (or that experience might be an errant data point, who knows).

I have to get going, have several errands and chores to get done today, but this is what I think I'll do: I'll make that teeny adjustment to 6.4cm Min EPAP tonight, since it seems my pressure raises a bit just after I fall asleep anyway, and I'll consider also raising PS by a smidgen. Depending on how I feel tomorrow night, I might stick with the initial plan of raising my min EPAP over time or do something akin to slowriter's method, which may be something like: raise EPAP and hold for a few days --> raise PS and hold --> raise EPAP... etc., in which case then I'd probably stick to the tiny 0.2cm bumps when adjusting PS, to avoid introducing centrals.

I'm just going to keep tonight simple. I'll sleep (ha! if I'm lucky) on the other options and take action later. Mostly it's hard to make these decisions because I've been on the machine for only a few days and I'm still making judgments based on moment-to-moment intuition; I don't yet have any history or experience to guide my hand when figuring out what I can tolerate, and what's definitely going to end in me ripping the mask off in the wee hours. That said, thank you all for chiming in and helping me with my guessing game!