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PaulaO2 Offline
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Moderators

Posts: 8,068
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: #11
RE: New Member
It can take a while. Some folks feel better immediately, many don't.

You have a lot of conditions going on and using this machine can only help. It probably doesn't feel like it but it is.

Has any of your doctors considered putting you on supplemental oxygen at night?

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.
09-10-2012 11:58 PM
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slug1956 Offline

Members

Posts: 7
Joined: Aug 2012

Machine: s9 vpap adapt
Mask Type: Full face mask
Mask Make & Model:
Humidifier: h5
CPAP Pressure: 8/20
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #12
RE: New Member
(09-10-2012 11:58 PM)PaulaO2 Wrote:  It can take a while. Some folks feel better immediately, many don't.

You have a lot of conditions going on and using this machine can only help. It probably doesn't feel like it but it is.

Has any of your doctors considered putting you on supplemental oxygen at night?

NOT AS YET seeing Cardiologist tomorrow
Ken
09-11-2012 12:02 AM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,068
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: #13
RE: New Member
Bring it up. There's a valve you'll need but the supplier will know all that.

I *think* someone reported that adding supplemental oxygen at night greatly helped with their central apnea treatment. Another member used an oximeter (those finger probe thingies that report blood oxygen levels) and discovered his wife's O2 was dipping low. Her AHI events were good but she felt lousy. The O2 helped her.

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.
09-11-2012 12:09 AM
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jbtuggers Offline

Members

Posts: 13
Joined: Apr 2012

Machine: resmed s 9 autoset
Mask Type: Full face mask
Mask Make & Model: resmed quattro
Humidifier: don't use
CPAP Pressure: 11.5 - 15.5
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: nj

Post: #14
RE: New Member
It took me about 6 months of reading this site and trying different things to make me feel human again. This is the best site.
09-11-2012 07:39 AM
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vsheline Offline

Advisory Members

Posts: 1,908
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: New Member
(08-28-2012 07:50 AM)dakota Wrote:  Slug, the hardest patients to get a pressure for in my lab are patients with CSR. An ASV machine is a wonderful help for people who suffer from it, but it tends to be hard to get used to. Our physician who runs the lab tells our patients that it can take a couple months to feel a difference. Whatever you do, keep using it! Don't give up! If you give it a few months, and you still don't feel a difference, talk to the doctor.

Hi Ken,

I hope the addition of supplemental oxigen will help.

Also, hopefully you can ask your sleep doctor to review the data recorded by your S9 Adapt ASV machine, in case the machine needs any tweeks made to its operating parameters. (I bet some doctors would be doing this without needing to be asked, and if your sleep doctor doesn't see it is neccessary for him to make the time to do this, hopefully you can find a new sleep doctor to work with.)

In any case, I think you will need to download the ResScan software, install it on your home computer, and start familiarizing yourself with the detailed data recorded by your machine.

It may take a while before you understand the terms and start to understand what the data is saying, but if we make a start and keep going, eventually we get to our desired destination. It can take some time in the beginning to come up to speed, but eventually it becomes quick and easy to review the data and see what is happening.

I think you will need to make the time to review your data daily or at least weekly. I think your machine's SD card only holds one week of detailed data, so it is important to read the data at least weekly into your computer, so that the detailed data is saved for future reference.

And you can print out reports and discuss with your doctor anything you find regarding how well your machine is handling the CSR.

On another subject: Also, maybe having a new ASV titration study would help.

I suppose a sleep lab must have done an ASV titration study while you were hooked up to a machine working in ASV mode, but was the machine used during your ASV titration study a ResMed machine running the exact same ASV algorithm as the S9 Adapt ASV machine you are now using? Or, instead, was it a Respironics unit using a slightly different ASV algorithm than the one the ResMed machine uses? I suppose it could affect the accuracy of the ASV titration results.

If the sleep lab used a Respironics unit during your ASV titration study, perhaps it would help to get the new ASV titration study done while you are connected to a ResMed machine using the exact same ASV software algorithm as your S9 Adapt ASV machine uses.

You may need to change the sleep study facility you use, in order to get this all arranged beforehand for any new ASV titration study.

Also, be sure to bring the mask you are having success with at home (and with a fairly fresh mask cushion) to use during any new titration study. Mask cushions should be replaced every couple months, I think, and the complete mask and headgear replaced every 6 months.

Take care of yourself.

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: 09-17-2012 05:02 AM by vsheline.)
09-17-2012 04:58 AM
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archangle Offline
Wiki Editor
Advisory Members

Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #16
RE: New Member
Even if the CPAP treatment doesn't make you feel better, the apnea and and CSR will probably do even more damage to your body if you stop.

Be sure your treatment is actually stopping your apneas. Your machine records data about how well you're breathing every night. Unfortunately, a lot of the people who prescribe and sell CPAP equipment have their head up their -mask- and don't really look at the data and adjust the CPAP properly.

Sometimes, the machines need to be adjusted to make them work for you. Far too often, the medical community simply thinks they can set the machine on "auto" and let it go. Sometimes this works, sometimes it doesn't.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
09-17-2012 12:31 PM
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slug1956 Offline

Members

Posts: 7
Joined: Aug 2012

Machine: s9 vpap adapt
Mask Type: Full face mask
Mask Make & Model:
Humidifier: h5
CPAP Pressure: 8/20
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #17
RE: New Member
Thank you for your information really appreciated.
Have downloaded resmed 4.1 sofrware but cannot get it to read from my card reader. Could somebody please help me with this.

Went to see cardiologist does not want to put me on oxygen.
Wake up in the morning so tired short breath,and get a lot extream pain in chest
After i take the mask off lasts the whole day. Doctor says thats because the heart is pumping the fluid back in my lungs during the day and the machine takes it out of a night time. Had to come home from work early and lay down because of shortness breath and pain. It gets unbearable a lot of the time just sick of it.
Am booked in for sleep study in about 8 weeks with my machine see what happens.

Once again thanks to every one for their input really appreciated
Ken
09-19-2012 05:21 AM
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slug1956 Offline

Members

Posts: 7
Joined: Aug 2012

Machine: s9 vpap adapt
Mask Type: Full face mask
Mask Make & Model:
Humidifier: h5
CPAP Pressure: 8/20
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #18
RE: New Member
Well it has been about 10 wks since i started on the vpap.
dont really know if it is working Am so short breath and tired during the day get a lot of pain in chest which my Cardiologist tells me it is because
the machine is pushing fluid out of my lungs during the night and it going back during during the day causing the pain.

I dont know if this is correct or not but i am getting that way that i feel nausia and have a funny tast in my mouth. I really feel crap.

Of to have a sleep study tonight with my machine and see the sleep doctor tomorrow cardiologist in 3wks does any body else suffer from these symtoms

Thanks for your input Ken
10-23-2012 05:13 PM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,068
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: #19
RE: New Member
Um, not sure if he is correct on that. The CPAP, even set at 20, cannot push fluid in or out of your lungs. Sinuses, yes. Lungs, don't think so. If anything, it would push the fluid further in, not out. I could be wrong, though. I still have some "Paula can be wrong" tokens, even this late in the year.

The humidity of the air can help with breathing, just like sitting next to one will.

Please let us know how the sleep study goes.

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.
10-23-2012 06:31 PM
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trish6hundred Offline

Advisory Members

Posts: 6,452
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #20
RE: New Member
Hi slug1956,
Best of luck to you on your sleep study.

trish6hundred
10-23-2012 08:15 PM
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