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Just been diagnosed, issues with mask tightness
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vsheline Online

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #11
RE: Just been diagnosed, issues with mask tightness
(01-31-2015 05:17 PM)TheManseHen Wrote:  While we don't have the experience, know how, wisdom of the advisers ...

Well, actually, no great experience or wisdom is required to become an Advisory Member. Just things like helpfulness.

(Please see my signature area.)

Take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 01-31-2015 11:52 PM by vsheline.)
01-31-2015 11:41 PM
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Ghost1958 Offline

Advisory Members

Posts: 957
Joined: Aug 2014

Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #12
RE: Just been diagnosed, issues with mask tightness
(01-31-2015 11:41 PM)vsheline Wrote:  
(01-31-2015 05:17 PM)TheManseHen Wrote:  While we don't have the experience, know how, wisdom of the advisers ...

Well, actually, no great experience or wisdom is required to become an Advisory Member. Just things like helpfulness.

(Please see my signature area.)

Take care,
--- Vaughn

Or in my case just being especially suave and debonair looking with a hose sticking off my noseLaugh-a-lot
02-01-2015 01:45 AM
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alexinlondon Offline

Members

Posts: 8
Joined: Jan 2015

Machine: Resmed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Resmed Soft Edge Mirage FX
Humidifier: None
CPAP Pressure: Unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: London, England.

Post: #13
RE: Just been diagnosed, issues with mask tightness
Thanks again for all the replies, it's greatly appreciated and thankfully last night was a better night.

(01-31-2015 04:53 PM)PaytonA Wrote:  Alex,

Not knowing you therapy pressure, it is difficult for me to make any concrete suggestions. If your pressure is high, you will be forced to tighten your mask tighter than most of us would like. Often the pattern of strap tightness is as important as the actual tightness.

Go at the strap tension setting slowly and methodically. Do not tighten more than necessary but do not be afraid to tighten as much as you need.

I have a problem when trying to set my strap tensions. When I hear or feel a leak, I want to fix it immediately. I have to counsel myself to be patient and kind of ignore the leak sounds.

What are you using to judge your leaks? Sounds and feeling? Frowney face? Leakage rate?

Best Regards,

PaytonA

I did play around with it a lot last night and finally got it to a place where it wasn't painful to wear, but also didn't seem to be venting too much. It was still showing the green smiley face on the machine, and not making any weird sounds suggesting leakage, which is good. I still can't work out how to attain the statistics though, so don't know what the leakage rate is.

The more I think about it, the more upset I am with the way it was all handled at the hospital. The fact that I was in the Doctor's office for such a short time seems really quite out of order to me, to be honest I was in shock at the diagnosis at the time and not really taking in everything which was said, but there's so many things I think he should have told me, which I've only since found out about thanks to the lovely people posting on here.

I guess that's partly due to the state of the NHS right now though, and how underfunded it is. Or I was unlucky and got a Doctor with a poor bedside manner. Either way, I'm going to get in contact with them tomorrow and ask more about how to obtain statistics from my CPAP machine, as it seems it'd be really helpful to know them.

One other thing which is bothering me is when I get up in the night to use the toilet, it seems to reset itself to the main screen, and then I have to mess around setting it all up again, is there something I'm missing on that front? I thought it'd just start up again when I plugged in the oxygen mask, but unfortunately not, and messing around with it all wakes me up and then I take some time to fall asleep again, which frustrates.

I'd just like to thank everyone again for all the support, this seems to be a lovely place and I'll definitely be sticking around. And hopefully in a few weeks time I might even be able to help out others a little. Smile
02-01-2015 08:35 AM
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3porpoise Offline

Preferred Members

Posts: 74
Joined: Feb 2013

Machine: S9 VPAP Adapt ASV
Mask Type: Full face mask
Mask Make & Model: Resmed mirage Quattro
Humidifier: H5i
CPAP Pressure: epap 5 PS 3-8
CPAP Software: ResScan

Other Comments: the world hasn't always been flat

Sex: Undisclosed
Location:

Post: #14
RE: Just been diagnosed, issues with mask tightness
[/quote]

I did play around with it a lot last night and finally got it to a place where it wasn't painful to wear, but also didn't seem to be venting too much. It was still showing the green smiley face on the machine, and not making any weird sounds suggesting leakage, which is good. I still can't work out how to attain the statistics though, so don't know what the leakage rate is.

The more I think about it, the more upset I am with the way it was all handled at the hospital. The fact that I was in the Doctor's office for such a short time seems really quite out of order to me, to be honest I was in shock at the diagnosis at the time and not really taking in everything which was said, but there's so many things I think he should have told me, which I've only since found out about thanks to the lovely people posting on here.

I guess that's partly due to the state of the NHS right now though, and how underfunded it is. Or I was unlucky and got a Doctor with a poor bedside manner. Either way, I'm going to get in contact with them tomorrow and ask more about how to obtain statistics from my CPAP machine, as it seems it'd be really helpful to know them.

One other thing which is bothering me is when I get up in the night to use the toilet, it seems to reset itself to the main screen, and then I have to mess around setting it all up again, is there something I'm missing on that front? I thought it'd just start up again when I plugged in the oxygen mask, but unfortunately not, and messing around with it all wakes me up and then I take some time to fall asleep again, which frustrates.

I'd just like to thank everyone again for all the support, this seems to be a lovely place and I'll definitely be sticking around. And hopefully in a few weeks time I might even be able to help out others a little. Smile
[/quote]

Hi alexinlondon,
There's definitely a learning curve following diagnosis. That's one of the endless reasons this board is so valuable.
So you got a green smiley face ,that's good, it means that 70% of the time there weren't excessive leaks. Finding the right mask is an individual process. I went thru about 7 ffm , trial and error.
Don't be surprised about getting only 3 min with the Doctor or not learning about statistics/data
On the top left above the on/off button should say the model name. Knowing this would be helpful. S9's have epr function which is expiratory relief pressure for exhale . Did they set that for you?
How did they instruct you to start the machine? Did they mention setting the ramp time?
Glad you had a better night.
3
02-01-2015 09:32 AM
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vsheline Online

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #15
RE: Just been diagnosed, issues with mask tightness
(02-01-2015 08:35 AM)alexinlondon Wrote:  One other thing which is bothering me is when I get up in the night to use the toilet, it seems to reset itself to the main screen, and then I have to mess around setting it all up again, is there something I'm missing on that front? I thought it'd just start up again when I plugged in the oxygen mask, but unfortunately not, and messing around with it all wakes me up and then I take some time to fall asleep again, which frustrates.

Hi alexinlondon, welcome to Apnea Board.

Your ResMed S9 machine probably has SmartStart, which, if enabled, will allow the machine to turn itself on automatically when you put on the mask and breathe a few breaths, and SmartStart will automatically turn the machine off about 6 or 7 seconds after you remove the mask.

If you press the rectangular button marked "i" for info you should see the user info screen. (Turn or push the tall knob to navigate or select.)

If you press the rectangular button with two check marks you should see the user settings screen.

If you push and hold down both rectangular buttons simultaneously for 4 or 5 seconds you should see the Advanced Info screen.

If you push and hold down both the rectangular button with two check marks AND the tall knob simultaneously for about 4 or 5 seconds, you should see the clinician set-up menu meant for use by only medical professionals. This is where SmartStart is enabled or disabled.

Complete instructions and brief explanations of the various settings in each screen are included in the "Top Secret, Burn Before Reading" clinician set-up manual for your machine, which is available to Apnea Board members by email request, as explained in the Important Threads section of the forum.

If your machine says Escape next to the power button then I think it does not report any statistical data other than hours of use and no detailed waveform data at all. If it says Escape Auto then I think it will report a few statistics like hours of use and AHI and maybe pressure, but, again, no detailed waveform data at all.

If your machine says Elite or AutoSet next to the power button then it is a fully data-capable device which will report full statistical and detailed waveform data.

Optimizing your therapy would be quickest and easiest if using the AutoSet. The Elite gives sufficient data to properly optimize your therapy by trial and error by making adjustments over a period of several months. The Escape Auto is far better than the standard Escape but neither Escape models distinguish or report obstructive apneas versus central apneas, which is often necessary to know in order to optimize settings properly.

Here are some recommendations by member Archangle regarding which machines are acceptable:
http://www.apneaboard.com/wiki/index.php...ne_Choices

Take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 02-01-2015 02:15 PM by vsheline.)
02-01-2015 12:37 PM
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alexinlondon Offline

Members

Posts: 8
Joined: Jan 2015

Machine: Resmed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Resmed Soft Edge Mirage FX
Humidifier: None
CPAP Pressure: Unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: London, England.

Post: #16
RE: Just been diagnosed, issues with mask tightness
Thank you so much for that Vaughan, it's a lot to take on board and understand (for me at least!) but I think I'm slowly getting there. It is an Autoset, so hopefully I won't have too many issues working out how to use it in the longterm.

Quote:On the top left above the on/off button should say the model name. Knowing this would be helpful. S9's have epr function which is expiratory relief pressure for exhale . Did they set that for you?
How did they instruct you to start the machine? Did they mention setting the ramp time?
Glad you had a better night.

Unfortunately I'm not sure if they set the epr or not, it was all explained to me in a bit of a blur. They did tell me how to start the machine, and the ramp time, which I find helpful when going to sleep initially. The issue I still have though is when I wake in the night and have to take the mask off, when I put the mask on when I come back from the toilet, the air pressure is really high for the first few minutes, before dropping down really low, and that wakes me up and makes it hard to go back to sleep, unfortunately...
(This post was last modified: 02-02-2015 11:03 AM by alexinlondon.)
02-02-2015 11:02 AM
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alexinlondon Offline

Members

Posts: 8
Joined: Jan 2015

Machine: Resmed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Resmed Soft Edge Mirage FX
Humidifier: None
CPAP Pressure: Unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: London, England.

Post: #17
RE: Just been diagnosed, issues with mask tightness
Just a mini-update, but I ended up phoning Resmed, who have a great customer support line, and the lady I spoke to was very understanding and helpful when it came to all of the questions I asked her, and I should (hopefully) be okay about the problems with the mask when I wake up to use the toilet in the middle of the night now. Well, we'll see later on, anyhow.

Have to say I'm still a bit peeved with the NHS though. All they needed to do was print out a few pages of information from their website, and give me a few links (this website especially!) and the Resmed helpline and it would have all been a lot less distressing a process...
02-02-2015 02:50 PM
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