First night

Pugsy wrote:These machines are really only designed for OSA stuff (data) and not UARS stuff (data).
The machines have no way to know if you are asleep or awake. They measure air flow only. Awake/semi awake breathing is a lot more irregular than we think and certainly more irregular than asleep breathing.
The machine is accurate in terms of what it measures. It is simply limited by not knowing if you are awake or not. It's measuring the air flow no matter if you are awake or asleep.

Treating UARS is NOT a quick/fast/easy thing to do....and we don't know for sure that you have UARS but it sounds like it is highly possible. I actually think it is much harder than treating plain vanilla OSA. People seem to need a validation in some sort of number to feel successful. Going by how they feel when they already feel like crap is really hard to do.

Make me wonder if Dr. Krakow is correct in that UARS is better treated with ASV...

From what I have read people with UARS tend to need higher pressures past where the "AHI numbers" are good to actually feel better.
They have to get to the point of sleeping decently with the machine all night though and that's hard to do when first starting therapy. Heck, I have plain OSA and it took me probably 3 months to get past 5 hours of sleep with a lot of wake ups mixed in those 5 hours just from having the alien on my face.
I was fortunate in that despite the short hours of sleep initially that I had 2 major symptoms of OSA that went away pretty fast so I had something to measure and validate to my mind that the therapy was working.

I really do appreciate your expertise in this area, so I will not shoot the messenger lol

However, it is discouraging news to think that the machine will not tell me anything useful and if all the settings are a guess, it could take years to stumble on the right one. It will make it very difficult to continue putting the alien on my face when I am not seeing anything positive.

If this is taking my no-CPAP numbers (172 arousals, 22 awakenings, and 68 RERAs) and lumping them all into other things, how on earth is anyone going to know what to do with what settings?

MaxINTJ wrote:If this is taking my no-CPAP numbers (172 arousals, 22 awakenings, and 68 RERAs) and lumping them all into other things, how on earth is anyone going to know what to do with what settings?

Patience and how you feel. Not what you wanted to hear I know. And maybe a little luck with some tweaking of the pressures. It's difficult for sure. We can take some guidance from the RERAs and FLs that your machine will flag. It's not perfect but it's the best we have (which isn't much I know).

Did you try the 8 cm minimum last night? Did the RERAs reduce last night?

Since your machine only offers auto mode on a very limited basis I wasn't going to give you the usual "try a setting for a week or so before changing"...you don't have time for that.

Pugsy wrote:[Did you try the 8 cm minimum last night? Did the RERAs reduce last night?

Yes, but I don't know if the numbers changed. I will have to wait until sometime tonight to check.

Since your machine only offers auto mode on a very limited basis I wasn't going to give you the usual "try a setting for a week or so before changing"...you don't have time for that.

Oh, I have time, it's patience I don't have...

Should I really have a different machine? I can complain to them - I'm pretty good at that lol

MaxINTJ wrote:Make me wonder if Dr. Krakow is correct in that UARS is better treated with ASV...

Can't say as I would disagree with you there.
Problem is UARS is just now getting some real attention as being a real diagnosis and not just a basket to call stuff when we can't figure out any other thing to blame feeling crappy on.
Along with that is our medical system who are slow to think outside the box and even worse the insurance companies who don't want to pay the big bucks for the ASV machines.

If you want to try ASV it can be done but you have to be willing to foot the bill. We can sometimes locate used ASV machines at a fair price (that's how I ended up with one) but you have to be willing to take the risk and fork over the money. Hopefully if a good enough deal is found and it doesn't work out the machine can be sold and not take too big of a hit on the cost.

I wouldn't go shopping for one just yet...you gotta be able to sleep more soundly with one of those machines. It makes a lot of changes and it makes them fast and it can take several weeks or months to get used to those changes for a lot of people.

MaxINTJ wrote:Should I really have a different machine? I can complain to them - I'm pretty good at that lol

As in get the VA to give you the DreamStation Auto model DSX500???
I would wait until we see if full time auto is for sure something that is critically needed.
You've got 30 days as it is and if Respironics holds true to what they did in the past there is a way to get more 30 days..used to be up to 5 time..don't know if they kept that with the DreamStation or not. It's not something they advertise in the manual.

It wouldn't be impossible for you to actually do better with a fixed pressure in your situation.

Pugsy wrote: Patience and how you feel. Not what you wanted to hear I know. And maybe a little luck with some tweaking of the pressures. It's difficult for sure. We can take some guidance from the RERAs and FLs that your machine will flag. It's not perfect but it's the best we have (which isn't much I know).

Did you try the 8 cm minimum last night? Did the RERAs reduce last night?

Since your machine only offers auto mode on a very limited basis I wasn't going to give you the usual "try a setting for a week or so before changing"...you don't have time for that.

I will be following this was extreme interest! My sleep study eons ago had a AHI of 4.7 and RDI of 19. I was told the RDI included RERAs. That indicates that there were more RERAs flagged than anything else. Is that correct? They said the pressure they ended up with for me "took care of both."

On Sleepyhead, I always thought that if the RERA was good that means the UAR was good. (But I could be under the mistaken impression that RERA and UAR are just different terms for the same thing.) But with what you said above about taking SOME guidance from the RERAs and FLs, Pugsy, I'm now wondering if having a low number or zero on the RERA data isn't very accurate. (And I still don't really understand FLs.)

I still realize, Pugsy, that our discussions in another thread still hold true, but now wondering if maybe I've been thinking I was okay on UAR/RERA from the SH data and maybe I'm not.

Oh, Max, I remember the first week or so on CPAP I was up at 2 a.m. throwing masks across the room because they wouldn't stop leaking! So you're doing great at getting used to the machine!

WearyOne wrote: Oh, Max, I remember the first week or so on CPAP I was up at 2 a.m. throwing masks across the room because they wouldn't stop leaking! So you'd doing great at getting used to the machine!

That's my only good number - no leaks!

WearyOne wrote:On Sleepyhead, I always thought that if the RERA was good that means the UAR was good. (But I could be under the mistaken impression that RERA and UAR are just different terms for the same thing.) But with what you said above about taking SOME guidance from the RERAs and FLs, Pugys, I'm now wondering if having a low number or zero on the RERA data isn't very accurate. (And I still don't really understand FLs.)

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RERA flagging is based on a breathing pattern that is seen in lab done studies where they have access to EEG for brain wave sleep status when people are for sure asleep and they have an arousal related definitely to some sort of respiratory event. If the machine thinks the breathing pattern looks like what the algorithm says is similar to what gets noted in the sleep lab when they know for sure if a person is asleep or not....it gets a flag.
It's unfortunately not definitive for the UARS RERAs per se. It's the best we have though.

Flow Limitations are simply reductions in air flow that don't meet the criteria for earning an OA flag or a hyponea fl ag.
Maybe the reduction didn't last 10 seconds to earn a real flag...maybe the reduction didn't meet the % of reduction requirement to earn a real flag.

Look at it this way....if the flow gets reduced totally..100% but it only lasts 9 seconds you would most likely get a FL flag instead of OA flag.
Or another example...the flow is only reduced to 38 % but it lasts 20 seconds...and that wouldn't earn a hyponea flag despite the 20 seconds because the reduction isn't enough...some brands it's 40% minimum reduction and some it is 50% reduction.

So flow limitations are reductions in air flow that happen but don't meet criteria for a specific apnea event flag. Doesn't mean they aren't important and couldn't be a factor in crappy sleep. There's a reason that auto adjusting algorithms include flow limitations (along with snores and prior apnea flagged events) as a big part of the driving force causing the pressures to go up. They are unwanted because they can cause problems and/or they can grow up to where they do earn a flag. They can disturb our sleep just like a full grown OA or hyponea can. This is what UARS is thought of....flow limitations that can't be put in some other basket but still enough to disturb sleep and cause arousals.
Since each person is different it's hard to say just how many flow limitations are important and at what level of reduction is important.
I sleep through some pretty significant flow reductions at times ...never bugs me but other people have arousals with the least little change in the air flow.

Some people pooh pooh off flow limitations and say "only FLs" like they aren't all that important but to my thinking they are very important because other wise all those apap machines out there wouldn't be increasing the pressure trying to kill them.

Now this is Flow limitation in the airway where the tissues are trying to collapse. This is NOT the same as nasal congestion flow limitations brought on by swollen nasal mucosa. Though sometimes the machine can have a hard time figuring it out. Remember it only measures air flow or in this situation air flow reduction. It doesn't know where it is coming from.
When we see people with high FLs and more pressure doesn't fix or touch them...most often more detective work uncovers nasal congestion as being a potential culprit. More pressure won't/can't fix those FLs brought on by only nasal mucosa swelling.
In this situation we would pooh pooh off the FLs but because they are in the nose and not in the airway behind and downward from the nasal cavity.
They would need to be fixed by the other usual measure to clear up nasal congestion.

Not sure how a fixed pressure would help - the variable didn't change much the first night.

As for sleeping soundly while wearing an alien, how am I supposed to do that if it's not working and I couldn't sleep soundly without the alien?

Sounds like if I could sleep soundly at all, I wouldn't have anything to complain about!

>.<

Pugsy, wow, fantastic explanation! (I've always thought you have a degree in this stuff.) Now please excuse this question I should already know the answer to...are FLs only tracked in auto mode? I'm thinking yes?

WearyOne wrote:.are FLs only tracked in auto mode? I'm thinking yes?

With the Respironics machines yes...flagging is only turned on in auto mode....be it single pressure or bilevel pressure...only in auto mode.

Kind of short sighted IMHO but then they didn't ask me when they design these things. Probably is tied in somehow to the fixed pressure thing...like why flag them if they can't do anything about them in fixed mode.... I say flag them because it's kinda important to know they are happening even if the fixed mode can't do anything about them.
ResMed gives the FL graph no matter which mode. It shouldn't be all that hard for Respironics to do the same.
But again...I never got their email asking my opinion.

MaxINTJ wrote:Not sure how a fixed pressure would help - the variable didn't change much the first night.

As for sleeping soundly while wearing an alien, how am I supposed to do that if it's not working and I couldn't sleep soundly without the alien?

Sounds like if I could sleep soundly at all, I wouldn't have anything to complain about!

Here's the thing some people...no matter if they have UARS or regular OSA find that the slightest variations in pressure seem to cause arousals...it disturbs sleep.
UARS patients tend to be on the super sensitive side of things and thus we look at removing one potential thing that could be disturbing sleep to see if it helps or not.

As to why your machine didn't change the pressure much...remember it is designed to change in response to OSA stuff...not someone that has arousals from whatever unless the arousals are preceded by something the machine has been programmed to fight.

I need to see the graphs to see how much it isn't or is responding. The spiky sawtooth looking increases are the test pressure probes and not really a response to anything.
It also doesn't surprise me that the machine isn't increasing much because your problem doesn't seem to be the typical OSA stuff that it is designed to respond to.

I hear your frustrations though and I totally understand them.

Pugsy wrote:Here's the thing some people...no matter if they have UARS or regular OSA find that the slightest variations in pressure seem to cause arousals...it disturbs sleep.
UARS patients tend to be on the super sensitive side of things and thus we look at removing one potential thing that could be disturbing sleep to see if it helps or not.

Yay.

I need to see the graphs to see how much it isn't or is responding. The spiky sawtooth looking increases are the test pressure probes and not really a response to anything.

Which graphs? I can post those tonight after I get home...

Thanks!

These graphs.

On the left side....hide the calendar and turn off the pie chart (Preferences/Appearance tab remove check mark)
so that the AHI and the event category bar graphs show up along with the first section on statistics.

On the right side...just these graphs
Events
Flow Rate
Pressure
Leak

You can resize and move the graphs around if needed. I don't need all those other graphs and when you try to put too many in one screen shot then they all are so tiny can't be evaluated well.

See this thread for some examples.
viewtopic/t103468/Need-help-with-screen-shots.html

and these 3 pages for how to organize. Don't worry about not finding a flow limitation graph...Respironics don't do FL graphs like ResMed does.
https://sleep.tnet.com/resources/sleepyhead/shorganize

You can get everything in one nice screen shot...saves everyone some work. Snippets make the work harder.

How to use imgur to host the images
https://sleep.tnet.com/reference/tips/imgur

If we want or need something else other than the basics above we can just ask for it. Most of the time this is all we need.

Pugsy wrote:

WearyOne wrote:.are FLs only tracked in auto mode? I'm thinking yes?

With the Respironics machines yes...flagging is only turned on in auto mode....be it single pressure or bilevel pressure...only in auto mode.

Kind of short sighted IMHO but then they didn't ask me when they design these things.
. . .
But again...I never got their email asking my opinion.

Well, I think they certainly should have asked you!

I figured as much. I'll switch to auto for a while and see what it shows. Thanks again!
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