What is Normal Average Leak Rate?

[palerider]

On a graph?

graph.

[Grace~~~]

On a graph?

graph.

I think I am in cpap trouble.

...but I try SO HARD ... I even hold the mask on my face lots of the night.
I have learned to love the feel of the air.

I always get a red unsmiley face every morning and sleepyhead always says
"your mask is leaking way too much talk to somebody"

...but I really have no one overseeing this ...
no one to talk to ...

all my doctors are focused on other things
they are completely dismissive of cpap

...but the more they dismiss it the more I think it's helping me.
So I guess they are doing whatever they are doing with the insurance company since no one has asked for the machine back?

I am encouraged by how I think I am feeling?
It's really hard for me to tell.
They have done some horrible things to me in the last month.
I am always recovering from something.
I just had a 6 hour iron infusion last week and I think that is working with the cpap since in my mind they are both "oxygen related"?

...but I suspect I am having really bad leak issues.
Like really bad.
...and I don't know how to even pick a day from sleepyhead to try and share and ask for advice?
I wish I could just let someone see it all?

I am thinking of trying to find a sleep doctor.
...but I dread adding any more doctors.

I have done so many stupid things with cpap that I figured out were stupid from reading here.
Like I was worried about "compliance" so I would leave the machine on when I went to pee so it would add more time.

dumb.

When you learn something new it is amazing when you realize you never thought of it or knew it one second before ...
ya know? Because as soon as you know it you immediately think you've always known it. Or at least *I *do.

[Pugsy]

but I suspect I am having really bad leak issues.
Like really bad.
...and I don't know how to even pick a day from sleepyhead to try and share and ask for advice?
I wish I could just let someone see it all?

You would have to master uploading the entire SD contents to some place like dropbox so that someone could download it and use their SleepyHead. It has to be an exact copy of your SD card. It can be done but does take a little computer skills.

Pugsy, where do I find the L/ min in sleepyhead?
Statistics? Daily?
On a graph?

All leak numbers are reported in L/mn....the statistics, the graph, the machine's LCD screen.

Average Leak Rate 25.67 24.30 25.04 25.22

I assume you got these numbers off the Summary page since you mention last 30 days.
If these are the 95% numbers then things aren't horribly horrible.
If they are average leak rate...pretty bad. If they are the average...what is the 95% number for the last 30 days?

If I remember correctly you were never officially diagnosed with OSA and were just given the machine to try to see if it helped your sleep or how you felt. You know if you don't really have OSA it may not be all that critical that the leak be better the half of the night it is in the toilet.

[Grace~~~]

Hello Pugsy~~~

!!!!


Your memory is wonderful, and you are correct that I was never officially diagnosed or 'titrated' (<is that a word / thing?)

The cpap stuff started based on issues in the hospital of my oxygen always setting off the beeper and also issues noted by anesthesiologists and recovering from anesthesia. Even small 'day procedures' with 'light sedation' (like bone marrow biopsies and such) they have to keep me on oxygen in recovery. No one is looking in to this specifically here in Florida. They are much more thorough in Manhattan / Cornell where the idea of cpap for me originated. I will be going back to NYC for follow-ups in November and if I had my cpap thoughts in order and needed something I could probably get answers and help then.

You would cringe if you knew some of the things the Florida doctors have said when I try to remind them I am using cpap every night.


My cousin is back with me to help me through a recent turn of events and so I might be able to get him to help with dropbox computer things?

In the meantime, unfortunately those are my average leak rates. (24-25 )

When I made that first post in this thread I carefully spaced all of the results in columns so that it was easy to read but when it posted it just shmushed them all together.

Oddly, Sleepyhead USED to have numbers in the 90% leak category but then it just went to zeros? Mine shows 90% not 95%?
Now the 90% has started back again with new data and so I have 90% for last night and last 7 days which is 40.80 and 39.60 respectively.

Also I have this column with data since the beginning

% of time above Leak Rate threshold
last night 57.03%
last 7 days 50.22%
last 30 days 48.36%
and all data since I began in May 48.68%

I know it's not good leak news.

I am going to try your dreamwear tip to add the pads.
Unfortunately I left them at the other house but I will get them soon.

Then some threads have said try larger dreamwear or smaller dreamwear.

I also am going to be brave and try to tape my mouth?

I guesss I will order 3 M micropore paper tape for this?

I bought the cervical collar and tried it a few times and it made no difference in leak rate so I stopped using it since it was not comfortable to me.

I also don't know if you remember but I tried just using mask awake with mouth definitely tightly closed for an hour and I still had leaks?

I suppose there is a small chance that the machine is defective?
I think those people who I think are the ones y'all call DME (They pretend to be doctors here) I might see if they would look at why I have this leak rate. I haven't seen or hear from them since the moment I met them in a closet in the middle of nowhere and they did the handoff of this machine.

I honestly hate those people so I dread the thought of even calling.
I saw they charged for both the masks even though I had the first one only 10 days or so.

(I don't handle the insurance or money anymore.
I think I am well enough that I could take back over again, but I haven't yet.)

So, normally I never even see any bills. Seeing the cpap thing was a fluke.

I just know when I was told costs had gone over two million dollars.
Like a curiosity.
Like miles on a car that you can't believe is still running~~~

anyway ... blah, blah, blah
rambling in public.

LOL (sorry Julie - hope you aren't reading and seething)

I will look in to dropbox, Pugsy. Cause I sure would love to know what it looks like
through intelligent and educated eyes.

I really wish my AHI were for real and are 1-2 ish. That seems good to me!
...but I have a feeling those numbers are not accurate.

I do think cpap is helping though?
I do.

I have always been a glass is half full chicque ...
...or maybe more that *my* glass is overflowing so who the hell gave me this mutant oversized glass making things look empty ????

[Julie]

Maybe I'd read and seethe if I had any idea what you referred to. Not to worry though, I'm not.

[Pugsy]

Oddly, Sleepyhead USED to have numbers in the 90% leak category but then it just went to zeros? Mine shows 90% not 95%?
Now the 90% has started back again with new data and so I have 90% for last night and last 7 days which is 40.80 and 39.60 respectively.

Don't know why it went from 95 to 90% but that's not that big of a deal..just affects the definition a tiny bit. Normally ResMed machine's report 95% and Respironics report 90% but I think there is a setting in SleepyHead that may have accidentally got changed...don't worry about it.

In your situation the 90% number of 40 ish...means things are pretty bad in terms of leak.
If we look at it and the % of time over red line....about half the night the leaks are pretty bad.

The mouth taping thing...that's mainly to help you isolate the leak cause...mouth vs just mask movement.
Once you isolate the cause then you decide on how to deal with it.
Like if you tape your mouth and it stays in place all night long and the leak rate for the night is still way too high then you know that mouth breathing isn't the culprit.
Now if you tape your mouth and it stays in place all night and the leak rate is lowered significantly then we assume that mouth breathing is the culprit.
I don't want to tell you to tape every night until it's proven that you are mouth breathing a lot....so the tape idea was just to help figure out the cause of the big leaks. We assume mouth breathing but it could just as easily be mask movement.

[Grace~~~]

Maybe I'd read and seethe if I had any idea what you referred to. Not to worry though, I'm not.

I am so glad, Julie.

I just meant my posts in general.
I can't really "get to the point" since I haven't a clue what the point is ...

So, I could just read and say or/post nothing. (which I do 99% of the time)
... or just spew out something in hopes that the reverberations tell me something that will eventually lead me to "the point".

...but I know that is irritating to those who have structured 'get to the point' minds.

I envy those types.
(I think?)

Though they have to take drugs to get to where I am naturally~~~
and weirdly???? The 'get to the point' types always LOVE me and seek me out when they are f@^ked up?
Bless their hearts.
I've never understood it, but it has proved true for my whole life?

...beware the high strung witch head of accounting with a few beers / hits in her ...
Ya know?

run.
hide.
she love hates you.

LOL



...but that is not YOU, Julie ...
definitely NOT!

I'm just rambling again.
My own post made me get off track and have flashbacks.


See?
It's a problem.

... and from being silent and reading I have definitely concluded I am not doing cpap well at all.
So I have to push forward.

New word thought? DROPBOX!
WHo doesn't just ADORE, Pugsy - right?
Dropbox is definitely on my (slow moving) to do list~~~

[Pugsy]

WHo doesn't just ADORE, Pugsy - right?

Welllllll......I can think of a couple who have me at the top of their shit list but that's okay...they are pretty high on mine too.
My personality doesn't always jive well with everyone. No one is a perfect fit for everyone.

If you can get the dropbox thing figured out I will take a look at your data for you.

Yes, I do remember the brief experiment while awake to try to figure out your baseline leak to see if maybe things weren't quite as bad as we might have thought or if there was a problem in the circuit somewhere and while your baseline wasn't at 0.0 like we might have thought it should be...it wasn't high enough that we could totally ignore your ugly leak numbers.

Remember this during your frustrated moments though...when you see 50% of the night over the red line threshold...yes, that is far from ideal but it also means that for 50% of the night your leaks were below the red line threshold and that's better than 100% over the red line. Half the night with acceptable therapy is better than no therapy. I know it isn't ideal but when it comes to OSA (that's assuming you do have OSA) some therapy is always better than no therapy. Doesn't mean that we give up and stop trying to make it less ugly but it means that not the entire night is in the toilet.
Even in the face of large leaks...some therapy is better than no therapy.

[Grace~~~]

Don't know why it went from 95 to 90% but that's not that big of a deal..just affects the definition a tiny bit. Normally ResMed machine's report 95% and Respironics report 90% but I think there is a setting in SleepyHead that may have accidentally got changed...don't worry about it.

In your situation the 90% number of 40 ish...means things are pretty bad in terms of leak.
If we look at it and the % of time over red line....about half the night the leaks are pretty bad.

The mouth taping thing...that's mainly to help you isolate the leak cause...mouth vs just mask movement.
Once you isolate the cause then you decide on how to deal with it.
Like if you tape your mouth and it stays in place all night long and the leak rate for the night is still way too high then you know that mouth breathing isn't the culprit.
Now if you tape your mouth and it stays in place all night and the leak rate is lowered significantly then we assume that mouth breathing is the culprit.
I don't want to tell you to tape every night until it's proven that you are mouth breathing a lot....so the tape idea was just to help figure out the cause of the big leaks. We assume mouth breathing but it could just as easily be mask movement.

Thank you, Pugsy.

I did understand the mouth taping as a test.

I honestly do not think it's mouth breathing.
I think I understand the tongue placement aspect very well and I think I did that very naturally.

I am a life long swimmer / water-sports baby and I understood from your posts to others exactly what you meant by tongue placement and air control.

However, I don't know for sure I am not somehow mouth breathing when I am in deep sleep.
I just 'don't think so'?

I am going to do another of those awake leak tests just to see what I get with the mask on.
I have someone coming over in 30 minutes so I will have to continue this again this evening.

I really WANT the dreamwear mask to work.

I really like the fact that the tube comes out of the top of my head.

I thought if I just gave it more time things would work out.
(Plus I got hit with a semi truck of issues unexpectedly so cpap was put on a back burner)

...but now I am back thinking about cpap and I have to acknowledge there is a problem.

A problem and no one to help me except CPAPTALK really.
How crazy is that?

Thank GOD for you guys.
Especially you, St. Pugsy.

Your generosity with your knowledge is simply awe inspiring?

I am focused on making progress over the next few days.

It's time.

[lanco]

These may help. It's a copy of a pdf that my software prints out.

I think it is so simple really. I have deduced that my software is showing total air flow, leaks, maybe open mouth and exhaust from my nasal mask.

So, if it is showing average leaks around 50, and my mask at has exhaust of about 25 when my cmH2o is around 8-9, then it makes sense that the 25 is subtracted from the 50 leaving a difference of about 25 which I assume are mask leaks and open mouth.

If that is the case then, I guess since I keep seeing this magic number of 24 as being ok that apparently comes on other software then I guess I'm ok here. Doesn't this make sense? I mean this can't be rocket science. But since I just started out and all of this is brand new to me (with an auto cpap that is, otherwise with a constant pressure machine for 16 years) then I'm thinking other educated opinions would be a good idea.

And also, I get up a few times a night to assist my disabled wife, hence the drop-offs.

I think first I need to determine if the data I'm getting is good enough to not need a chin strap or face mask which of course I have no desire to use unless absolutely necessary. This is what I'm trying to find out really.

Thanks for the input.

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[JDS74]

When I made that first post in this thread I carefully spaced all of the results in columns so that it was easy to read but when it posted it just shmushed them all together.

If you do want to post the results in tabular form, then put underline characters between the columns instead of spaces.
That makes the shmushing go away

For example:
With spaces:
10 5 12 77 100
5 6 11 65 99

With underscores instead:
10_____5_____12_____77_____100
_5_____6_____11_____65______99

[Pugsy]

I guess since I keep seeing this magic number of 24 as being ok that apparently comes on other software then I guess I'm ok here. Doesn't this make sense?

What other software? Other software is only relative to the brand of machine it is reporting and can't be used with your software.
There's nothing magical about excess leak of 24 being okay except with the ResMed machine and that's the only software that I know of that is okay with anything around 25.

You are trying to compare apples and oranges and while similar in terms of food product...they aren't the same thing.

None of the other software programs for any brand mention any sort of excess only leak as being okay.
ResMed is the only machine to report leaks as excess only. The 24 L/min threshold it uses...is designed for ResMed reports only.

You are probably fine using it as a personal guideline but that's as far as it goes. The cold hard fact of life is we don't know in terms of excess leak exactly where your machine starts having a problem. It might be 15 L/min or 25 L/min or 35 L/min or 45 L/min or whatever....we just don't know where's it's threshold is and the way it does it's graphs makes it hard to figure it out.