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Huge leaks still and getting so frustrated
#1
Sad 
Huge leaks still and getting so frustrated
Hi - I wrote a few weeks ago about how high my leaks were getting, and no matter what I do, they seem to be getting worse. What makes it frustrating is that at my sleep titration (with pressure of only 9, however), they said I didn't leak at all - even with the exact same style mask I've been using.
First year, leaks were always under 24. Then this year came along, and they started getting higher - never below 24.

 My doctor increased my pressure from 6-10 to 9-15, since I was still tired and having a lot of RERAs, and now my leaks are at a low, 32, and all the way up to 42. I even tried a different mask - the P10 nasal pillow mask, instead of the dreamwear nasal I've been using, and it was up to 37. And, I totally tape my mouth at night, so I don't think it's that.

I know the higher pressure now (usually around 12, vs the 10 I started with) could make it worse, but how do you balance what your body needs to not wake and have respiratory events all night with leaking? I can't do a full face (tried the other night) because it pushes on my jaw, and I have TMJ/displaced discs.

Help - just at a loss, extremely tired ever day to where I have to go out to my car and take naps during work, and I'm not sure where these leaks are coming from. As I said, the first year with the same style mask, I had no issues at all (though was tired because of the RERAs)

Thanks! Theresa
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#2
RE: Huge leaks still and getting so frustrated
If it isn't from your mask, or from the various connections of hoses and mask, that leaves the machine itself, possibly the seal for the water vessel or the way it rests in its receptacle.

I get a strong sense of your dismay over this, particularly when all your efforts to fix the problem either go unanswered or are apparently futile.  You may have to go to a lab or DME and have a technician evaluate your equipment for condition.  Or, have someone enter your sleeping quarters while you 'sleep' and use something like a smoke gun to find leakage other than from your mask area and vent.

Not to place this before you in a challenging way, but in a deterministic way:  what would you do if the various forms of diagnosis reveal that there's actually nothing wrong with your equipment?  If it were me, I'd be looking for another determination of my apnea and for its treatment.  Perhaps your treatment is entirely unsuitable for you if only because it has no face validity for you...at all.
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#3
RE: Huge leaks still and getting so frustrated
(08-20-2019, 11:49 AM)mesenteria Wrote: If it isn't from your mask, or from the various connections of hoses and mask, that leaves the machine itself, possibly the seal for the water vessel or the way it rests in its receptacle.

I get a strong sense of your dismay over this, particularly when all your efforts to fix the problem either go unanswered or are apparently futile.  You may have to go to a lab or DME and have a technician evaluate your equipment for condition.  Or, have someone enter your sleeping quarters while you 'sleep' and use something like a smoke gun to find leakage other than from your mask area and vent.

Not to place this before you in a challenging way, but in a deterministic way:  what would you do if the various forms of diagnosis reveal that there's actually nothing wrong with your equipment?  If it were me, I'd be looking for another determination of my apnea and for its treatment.  Perhaps your treatment is entirely unsuitable for you if only because it has no face validity for you...at all.

Not sure what you mean in the last part about my treatment being entirely unsuitable for me. I'm actually on my second sleep doctor, since I didn't feel the first one's treatment was working, and this one raised my pressure which has made my leak numbers even higher. (though they were trending that way to begin with). In two years, I can count on one hand - or, finger, how may time's I've actually slept more than 5-6 hours without waking. I wake up at least every two hours. More last night. My husband said that he hears gushing when I'm sleeping (and I hear the same from him), so not sure what that's coming from......... 

I was so looking forward to finally not feeling tired - hence the dismay........
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#4
RE: Huge leaks still and getting so frustrated
theres126,
Please post a chart from OSCAR.
Follow the instructions in my signature line below.
Organize the chart according to instructions. Need to see left side bar, minus the calendar and pie chart.

Graphs to include: events, flow limitations, pressure, leak rate, Snores.

I looked at your chart in the last thread. Although the graph is not complete according to instructions, it looks like mouth breathing.
OpalRose
Apnea Board Administrator
www.ApneaBoard.com
Dreaming


https://www.sleepfiles.com/OSCAR
http://www.apneaboard.com/wiki/index.php...ganization
Using Attachments to Post ScreenShots.
Mask Primer
Machine Choices



INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Huge leaks still and getting so frustrated
If RERA are your problem, an higher initial pressure may not be the solution and may just give you more leaks in the end. 
The best way to deal with flow limitations is to add some pressure support (EPR or switching to a bilevel if your epr is already max out).
See : http://www.apneaboard.com/wiki/index.php..._and_BiPAP

But you need to post yours Oscar results first.

In my case, if I increase my pressure over 11, I usually start to breath through my mouth especially during REM sleep.
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#6
RE: Huge leaks still and getting so frustrated
(08-20-2019, 01:15 PM)alexp Wrote: If RERA are your problem, an higher initial pressure may not be the solution and may just give you more leaks in the end. 
The best way to deal with flow limitations is to add some pressure support (EPR or switching to a bilevel if your epr is already max out).
See : http://www.apneaboard.com/wiki/index.php..._and_BiPAP

But you need to post yours Oscar results first.

In my case, if I increase my pressure over 11, I usually start to breath through my mouth especially during REM sleep.

I can post my sleepyhead results this evening. Can't download Oscar since my computer is old and my IOS isn't supported for Oscar. 

Thanks.
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#7
RE: Huge leaks still and getting so frustrated
(08-20-2019, 01:15 PM)alexp Wrote: If RERA are your problem, an higher initial pressure may not be the solution and may just give you more leaks in the end. 
The best way to deal with flow limitations is to add some pressure support (EPR or switching to a bilevel if your epr is already max out).
See : http://www.apneaboard.com/wiki/index.php..._and_BiPAP

But you need to post yours Oscar results first.

In my case, if I increase my pressure over 11, I usually start to breath through my mouth especially during REM sleep.

I found a chart from the beginning of the month so you can see. Will post some from this week when I get home from work.


Attached Files Thumbnail(s)
   
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#8
RE: Huge leaks still and getting so frustrated
Your EPR seems to be set to "ramp only" so that's really not helping your flow limitations. I don't have a resmed machine so maybe someone more knowledgeable can confirm if this setting exists but you need EPR on all night long not just at the beginning.

As for your leaks, are you sleeping alone? If not, ask you partner to try to hear or feel where the air is coming out from. You may also try to wear your mask awake and turn the machine on (with the ramp feature turned off) to see if there is some obvious leaks when the pressure is at its normal level.
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#9
RE: Huge leaks still and getting so frustrated
Your machine does have a ramp only EPR setting. You need to change it to EPR full time in the clinical settings. Go here https://www.apneaboard.com/resmed-airsen...setup-info for instructions to access clinical settings. Scroll down to EPR type and select full time. Please see the link below for how to organize your charts.
you need ti include events at the top and replace mask pressure with flow limit. Also we need to see the data in the left panel without the calendar and pie chart.

Also see the mask primer below for help with managing leaks.
Download OSCAR

Organize Charts
Attaching Charts

Mask Primer
Soft Cervical Collar

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

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#10
RE: Huge leaks still and getting so frustrated
Thanks. Will organize it tonight if I get home in time. or tomorrow night if not. 

I was confused about whether to do the EPR full time, since I heard that might increase AHIs? 

Also, I think I remember how to move around the fields, but how do you get rid of the pie chart? Can I just crop it, or is there information there that you need?

Thanks
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