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I feel like my cpap would make a good paper weight
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Roxy Offline

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Posts: 63
Joined: Aug 2012

Machine: ResMed S9 Autoset H5i
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H51
CPAP Pressure: 14-20
CPAP Software: SleepyHead

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Sex: Female
Location:

Post: #1
I feel like my cpap would make a good paper weight
I fall right asleep within ten minutes but wake two to three times a night. When I wake at night, I fall back asleep quickly. I have tried so many different masks. I tried quattro, quattro fx, amara, flexifit and the liberty.The flexifit is the best asfar a leakage goes but still does leak. When I look at the detailed daily data, I still get lots of spikes aboce the red line!!!!!! I am getting so frustrated. When I speak to the sleep doctor and the respiratory therapist at the sleep center, I get the same response. Your average ahi is good so don't worry. The therapy is effective. They don't seem to see a problem with the fact that I am still tired and that I tell them my leak rate is high. They never have looked at the detailed data on the removable sim card!!!!!! All they do is look at the limited data on the machine and say you are using the machine consistently and your ahi is good. Any suggestions? Does anyone know of a GOOD sleep doctor in Somerset, Morris or Middlesex county NJ? i am doing all of the right things but still am not getting the true benefits from the therapy.



This is the data from last night using flexifit with the padacheek liner and gecko to prevent sore on nose. I changed the setting from auto to a continous pressure of 12

AHI 2.8
leak rate Median 0 % 33.6 Max 63.6

When I was using the mask on a varable setting without the padacheek (just got it yesterday)_ just with Gecko

12/30/2012
AHI 3.1
leak rate Median 10.8 % 54 Max 76.8
pressure Median 11,9 % 13.9 Max 15.6

12/29/2012
AHI 3.5
leak rate Median 15.6 % 72 Max 121.2
pressure Median 11,8 % 14.6 Max 17

12/28/2012
AHI 2.9
leak rate Median 7.1 % 81.4 Max 109
pressure Median 12.5 % 15.1 Max 17.4

12/27/2012
AHI 3.8
leak rate Median 0 % 46 Max 11..3
pressure Median 11.4 % 14.6 Max 16.4

12/26/2012
AHI 2.5
leak rate Median 12.4 % 172 Max 129.6
pressure Median 12.4 % 15.5 Max 17.5

When I have some really high leak rates, why is the AHI still pretty low? Why does the machine show a good mask fit? Does max refer to the highest pressure and the leak rate at that high pressure? What is the difference between median and %?

Please help before I use the machine as a paper weight. I am SO FRUSTRATED
01-01-2013 02:26 PM
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PaulaO2 Offline
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Posts: 8,064
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #2
RE: I feel like my cpap would make a good paper weight
It is not just that the leak is high, it's how long the leak is there. If it is just for a moment and, in your sleep you fix it, then it is fine. But if it lasts longer, then it can either over report events or not report them at all.

Median is the top of the bell curve, if you've ever seen a graph with one. It is not always the same as average. It means that's where you were the longest, basically.

95 percentile means that, during the night, your pressure/leak was at x or lower for 95% of the time.

Max means the highest you hit during the night for both pressure and leak.

Don't just look at the numbers. Look at the length of the events and leaks. When you had a leak, did the machine record any events?

I know it can be frustrating. It can take a lot of time for many folks. Some put on the mask and turn on the machine and never have a problem. Others seem to be constantly whacking their head on the wall out of frustration. Stick with it. Work out these kinks.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
01-01-2013 04:53 PM
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Shastzi Offline

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Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #3
RE: I feel like my cpap would make a good paper weight
humm.
This might be a drag...but:
I would start with the simple things to check first.
Set aside some time to trouble shoot.
wash the mask with Dawn (original formula), rinse it till you can feel it squeek! Then dry it carefully with paper towels.
Do the same thing with your face. It should squeek when you run your wet finger tips over it.
No moisturizers or anything. We want to intentionally de-grease your skin/mask mating surface.
(yes it will dry out your skin if you do it right but first stop the leaks!)

Got all that done, put on the mask, the silocon cushion should actually stick to your face.
Now do a full pressure fit test. You should keep making small adjustments till there are zero leaks.
Take deep breaths & exhalations whil turning your head left, right, nod up & down to see if
any seals pop loose and start hissing.
Loosen and retighten straps if you still can't stop the leaks.
Sometimes a weak spot will show up when you exhale forcefully.
Find out what it takes.
I have been able to seal some pretty stubborn masks this way.
Wink
When you get a good seal you mask will only be leaking from the exhaust ports. (normal) at 12cm that might be around 35 lpm (litres per minute)

Try this with each mask till you find one that seals perfectly or leaks the least amount.

Without seeing an oximeter run for that night its hard to tell...but I would guess that you are
going into desaturation because the machine can't maintain pressure.


Which brings us to....
Next (less likely) possiblility:
The CPAP is just a machine and sometimes they break down.
A wearable logging oximeter would help right now to figure out if you are going into desaturations during the leaks.
(if they are long enough duration)
It will also show you how well the CPAP is actually doing its job.
If you are seeing reports from SleepyHead that all is well but your Oximeter readings are caving in
then you and the CPAP need to go in for a check.
The machine, to see if it is going bonkers and
You, to see if you are developing central apneas that the machine can't compensate for.

In any case keep using the CPAP, since some is still better than none at all.

Hang in there and good luck! Let us know how you're doing!
01-01-2013 05:11 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #4
RE: I feel like my cpap would make a good paper weight
the mask should be as loose as possible while still creating a seal
fit mask with air turned on using mask fit feature at set pressure
full face masks don,t works as well for everyone
did you tried the nasal mask and chinstrap
http://www.apneaboard.com/forums/Thread-Chin-strap-question?page=2

median indicate leaks was at and below 50% of the time using the machine
95% percentile leak indicate leaks was at and below 95% of the time

any leak large or small, disturb your sleep is bad leak
the numbers doesn't tell the full picture, one need to look at the graphs to see whether just spiked leak for a period of time and none other times or constant leak thru the night

for me humidity is important part of the therapy
don,t feel comfortable breathing dry cool air but everyone is different

check AASM for sleep near you
http://www.sleepeducation.com/find-a-center
01-01-2013 05:24 PM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #5
RE: I feel like my cpap would make a good paper weight
high leaks can compromise the therapy and affect the accuracy of data
AHI can not be interpreted correctly ... leaks have to be corrected
01-01-2013 06:08 PM
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Roxy Offline

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Posts: 63
Joined: Aug 2012

Machine: ResMed S9 Autoset H5i
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H51
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location:

Post: #6
RE: I feel like my cpap would make a good paper weight
could I post a copy of a few graphs?
01-01-2013 06:09 PM
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Shastzi Offline

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Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #7
RE: I feel like my cpap would make a good paper weight
I have seen other folks post graphs here, I'm sure it's ok.
If not the moderator will say so.

Wink
01-01-2013 06:21 PM
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Roxy Offline

Preferred Members

Posts: 63
Joined: Aug 2012

Machine: ResMed S9 Autoset H5i
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H51
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location:

Post: #8
RE: I feel like my cpap would make a good paper weight
[Image: 12-18-12_zps2b088cde.jpg]

[Image: 12-29-12_zpsdcf0ae95.jpg]

[Image: 12-30-12_zps0ea54168.jpg]

[Image: 12-31-12_zps9a8f68ac.jpg]


I have attached some of my graphs
01-01-2013 06:23 PM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #9
RE: I feel like my cpap would make a good paper weight
(01-01-2013 06:23 PM)Roxy Wrote:  [Image: 12-31-12_zps9a8f68ac.jpg]


I have attached some of my graphs
Roxy
you must be doing something right here ... no leak during the period from 4 to 7
in this period ... leak is not the cause of you waking up switch machine off
01-01-2013 10:28 PM
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zimlich Offline

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Posts: 392
Joined: Feb 2012

Machine: Respironics PR System One BiPap Auto SV Advanced
Mask Type: Nasal mask
Mask Make & Model: ResMed gel Nasal Mask
Humidifier: System One
CPAP Pressure: 8-20 ASV, 8 EPAP,PS 12
CPAP Software: Not using software

Other Comments: I use the Quattro FFM when necessary

Sex: Female
Location: Norfolk, VA

Post: #10
RE: I feel like my cpap would make a good paper weight
Quit looking at the graphs for a month. Put some papers under the machine so it works as a paper weight. Work on stabilizing your leak line. You may need a different mask.
It can take some of us a long time to feel better.
Your experience with the sleep doctor is like mine, except with mine I ask questions. Would you look at this graph please, I'm concerned.
Be proactive, write down questions, concerns before appt so you can be as brief and thorough as possible. Ask for what you need- that gets easier with time.
Best of luck. I think you'll find it makes an adequte paper weight while also functioning as a CPAP. Keep that sense of humor!
Mary
01-02-2013 09:32 AM
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