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PLEASE HELP ME-DESPERATE
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kayla Offline

Preferred Members

Posts: 39
Joined: Dec 2012

Machine: resmed s9 autoset
Mask Type: Full face mask
Mask Make & Model: quattro
Humidifier: H5i
CPAP Pressure: 14-19?
CPAP Software: SleepyHead Other Software

Other Comments: I am grateful for the wonderful peopleon this board!

Sex: Female
Location: Canada

Post: #1
PLEASE HELP ME-DESPERATE
i am new but posted before in march saw sleep dr.2012 -no overnight study,just short take home,dr guessed at 14 pressure and left me there ,I dont see dr agian till jan22 -and am thinking ask my dr for new sleep dr,who guesses and leaves someone at 14 ?I CANT TAKE THIS PRESSURE ANYMORE.I AM TERRIFIED TO GO TO SLEEP.
i fgured out some of my stuff with sleepyhead and some respirologists felt sorry for me and lent me a bipap but my pressure so high it dries out.
I have horrible gas and tummy problems but waking up every two hrs is killing me.I have other issues but I cant do this anymore.Do I change the pressure myself?it si covering my apneas but maybe at 12 it would too.If i dont use it will I die? I cant do this without help from a dr.and no insurance in CANADA but can pay if someone here would just help.all the respirologists want here is money.
and I cant figure out how to change things on the machine,the bipap is better but I have to wake and refill humidifer ,,,,I am so depressed and so tired.i CANT FIND A RIGHT SLEEP POSITION AND MY MASK LEAKS and now I am waking up with swollen red eyes and a horrible stomache.I am sorry I just cant take it anymore.
This should not be allowed ,to never have pressure adjusted by a dr.
can anyone suggest anything?
thanks
Kayla
01-10-2013 02:38 AM
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keyclix Offline

Members

Posts: 4
Joined: May 2012

Machine: s9
Mask Type: Nasal pillows
Mask Make & Model: Resmed
Humidifier: resmed H5i
CPAP Pressure: 10 cm
CPAP Software: ResScan

Other Comments:

Sex: Male
Location: NSW, Australia

Post: #2
RE: PLEASE HELP ME-DESPERATE
Hi Kayla,
If you see the message from Steven in "related threads" there are some good suggestions there and you'll find it makes sense. Main thing is that zero pressure on the cpap machine means zero additional pressure, it's not really zero. With the CPAP off and no mask you are at "zero" pressure. You go through the whole day awake at that level, so you know it's safe.
I have sent you a private message with some suggestions about the settings.
regards
Andrew
01-10-2013 06:14 AM
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Shastzi Offline

Advisory Members

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: PLEASE HELP ME-DESPERATE
From your interaction with the Dr. several things come to mind...
I would suggest getting a wearable oximeter for you to sleep with and start logging that data every night.
Then compare any actual desaturation events with your logged pressure data from the S9.
#1. You might be able to get by with less pressure, since the Dr. did not actually run this value down, you can, however, do it yourself.
#2. Another thing you may learn is that you might be more comfortable with just running constant pressure. Some folks have problems with fluctuating pressure delivered by an auto-PAP and those changes may wake the patient up.
#3. You'll need to do like I did and run down those leaks around the mask or change masks if you can't quite get it to seal in a reliable way.

Just address one disaster at a time and you'll get through this.
...and you won't die from any of this.
Hang in there!
01-10-2013 11:17 AM
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kayla Offline

Preferred Members

Posts: 39
Joined: Dec 2012

Machine: resmed s9 autoset
Mask Type: Full face mask
Mask Make & Model: quattro
Humidifier: H5i
CPAP Pressure: 14-19?
CPAP Software: SleepyHead Other Software

Other Comments: I am grateful for the wonderful peopleon this board!

Sex: Female
Location: Canada

Post: #4
RE: PLEASE HELP ME-DESPERATE
(01-10-2013 06:14 AM)keyclix Wrote:  Hi Kayla,
If you see the message from Steven in "related threads" there are some good suggestions there and you'll find it makes sense. Main thing is that zero pressure on the cpap machine means zero additional pressure, it's not really zero. With the CPAP off and no mask you are at "zero" pressure. You go through the whole day awake at that level, so you know it's safe.
I have sent you a private message with some suggestions about the settings.
regards
Andrew
Thank you I'm trying ..I will see what I can do.Your help is much appreciated.


(01-10-2013 11:17 AM)Shastzi Wrote:  From your interaction with the Dr. several things come to mind...
I would suggest getting a wearable oximeter for you to sleep with and start logging that data every night.
Then compare any actual desaturation events with your logged pressure data from the S9.
#1. You might be able to get by with less pressure, since the Dr. did not actually run this value down, you can, however, do it yourself.
#2. Another thing you may learn is that you might be more comfortable with just running constant pressure. Some folks have problems with fluctuating pressure delivered by an auto-PAP and those changes may wake the patient up.
#3. You'll need to do like I did and run down those leaks around the mask or change masks if you can't quite get it to seal in a reliable way.

Just address one disaster at a time and you'll get through this.
...and you won't die from any of this.
Hang in there!
I sure hope not,I need a sleep study I think.
(This post was last modified: 01-11-2013 02:12 AM by kayla.)
01-11-2013 02:11 AM
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Shastzi Offline

Advisory Members

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: #5
RE: PLEASE HELP ME-DESPERATE
Seems like once you get higher than 12cm or so you start getting a bit of air forced into the stomach.
I am currently running at 15.8cm pressure and I do sometimes wake up with some gas, burping and otherwise venting it off. If it is painful gas then it might be getting trapped and you might want to try some Gas-X before bed.
I think this issue may be kind of universal.

Keep up the quest for the mask leakage, you'll nail it down eventually.

Cheers!

Coffee
01-11-2013 06:05 AM
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kayla Offline

Preferred Members

Posts: 39
Joined: Dec 2012

Machine: resmed s9 autoset
Mask Type: Full face mask
Mask Make & Model: quattro
Humidifier: H5i
CPAP Pressure: 14-19?
CPAP Software: SleepyHead Other Software

Other Comments: I am grateful for the wonderful peopleon this board!

Sex: Female
Location: Canada

Post: #6
RE: PLEASE HELP ME-DESPERATE
(01-11-2013 06:05 AM)Shastzi Wrote:  Seems like once you get higher than 12cm or so you start getting a bit of air forced into the stomach.
I am currently running at 15.8cm pressure and I do sometimes wake up with some gas, burping and otherwise venting it off. If it is painful gas then it might be getting trapped and you might want to try some Gas-X before bed.
I think this issue may be kind of universal.

Keep up the quest for the mask leakage, you'll nail it down eventually.

Cheers!

Coffee
I have a lot more of an upset tummy...really bad,ty for the encouragement. You all are relaly great on here.
01-12-2013 01:08 AM
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