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desperate: stopping cpap for now
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vsheline Online

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Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
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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: desperate: stopping cpap for now
(08-16-2014 06:41 PM)storywizard Wrote:  had started this thread...
http://www.apneaboard.com/forums/Thread-...and-events

Hi storywizard,

In my view, the key thing to make sure happens (right away as soon as your doctor gets back, before your sleep study) is that you are scheduled not for a standard CPAP titration, and not for a standard bi-level titration, but for an ASV bi-level titration.

Do not let them schedule you for a standard CPAP titration or for a standard bi-level titration, or you will be delayed more months to see if a standard CPAP or APAP or bi-level machine perhaps with oxygen supplementation would perhaps be "good enough" for you. What a colossal waste of time and money, when what you probably need is an ASV machine.

Good luck, and 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: 08-16-2014 08:18 PM by vsheline.)
08-16-2014 08:07 PM
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Galactus Offline

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Posts: 1,385
Joined: Jan 2014

Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #12
RE: desperate: stopping cpap for now
The best thing you can do for yourself is be the squeaky wheel, don't allow them to push you off with their schedules, demand they see you sooner or send you to someone who can see you sooner. I regret immensely not seeking treatment sooner than I did. Hindsight is 20/20 and there is a lot of people here with good hindsight take their collective advice. Wish you all the best.

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
08-16-2014 09:02 PM
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storywizard Offline

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Machine: ResMed VPAP Adapt S9
Mask Type: Nasal pillows
Mask Make & Model: P10 taped to face
Humidifier: included with machine
CPAP Pressure: CPAP 11cm
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Vancouver, BC, Canada

Post: #13
RE: desperate: stopping cpap for now
(08-16-2014 08:07 PM)vsheline Wrote:  
(08-16-2014 06:41 PM)storywizard Wrote:  had started this thread...
http://www.apneaboard.com/forums/Thread-...and-events

Hi storywizard,

In my view, the key thing to make sure happens (right away as soon as your doctor gets back, before your sleep study) is that you are scheduled not for a standard CPAP titration, and not for a standard bi-level titration, but for an ASV bi-level titration.

Do not let them schedule you for a standard CPAP titration or for a standard bi-level titration, or you will be delayed more months to see if a standard CPAP or APAP or bi-level machine perhaps with oxygen supplementation would perhaps be "good enough" for you. What a colossal waste of time and money, when what you probably need is an ASV machine.

Good luck, and take care,
--- Vaughn

I will do my best...

thanks for the support it means a lot to me...
SW


(08-16-2014 09:02 PM)Galactus Wrote:  The best thing you can do for yourself is be the squeaky wheel, don't allow them to push you off with their schedules, demand they see you sooner or send you to someone who can see you sooner. I regret immensely not seeking treatment sooner than I did. Hindsight is 20/20 and there is a lot of people here with good hindsight take their collective advice. Wish you all the best.

I will do what I can, maybe even pay for my own study..

thanks for your help...

SW
(This post was last modified: 08-16-2014 09:40 PM by storywizard.)
08-16-2014 09:39 PM
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Galactus Offline

Advisory Members

Posts: 1,385
Joined: Jan 2014

Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #14
RE: desperate: stopping cpap for now
Call, keep calling, call again, b*tch and moan, and complain, be so annoying they have no choice but to help you. My wife is extremely good at this, I sick her on anyone that won't help me quick enough, just don't let her see this post otherwise I could be the next victim. But seriously just be a pain in the behind until they get you help. Don't be as stupid as some of us were to go untreated just because it was inconvenient.

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
08-16-2014 11:49 PM
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Stroppy Offline

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CPAP Pressure: 17cm
CPAP Software: Not using software

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Sex: Male
Location: Australia

Post: #15
RE: desperate: stopping cpap for now
(08-16-2014 07:29 PM)bwexler Wrote:  If your trial machine was on a fixed pressure of 10 cm, things don't make sense.
You apparently have not had a sleep study or titration study.
It would seem your machine should have been set for a range of pressures if this was a trial titration.

Yep...I am no expert (not by a long shot) but I think this gent would have been better off with a good APAP machine. That way the machine would have self-adjusted for any variance in his needs.
08-17-2014 02:40 AM
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me50 Offline

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Machine: resmed S9 VPAP Auto
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Post: #16
RE: desperate: stopping cpap for now
You mention that your wife is ill as well. Taking care of her can also be part of your sleep issues and exhaustion. Stress can also play a role in that as well.

Several others have mentioned things that could also be problematic.
The major thing you should consider doing is to get in to the doc's office immediately (not next Friday). Usually a doc on vacation has someone covering for him/her. Some doctor's offices have PA's and/or NP's that you can see.

If you don't get to the doc yourself, you can be jeopardizing your life and who will be able to take care of your wife?
08-17-2014 03:21 AM
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archangle Offline
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Posts: 3,159
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Machine: ResMed S9 AutoSet
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Mask Make & Model: ResMed Swift FX
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CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

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Location: USA

Post: #17
RE: desperate: stopping cpap for now
Your other thread indicates you may have a CAI of 13. Look into that some more. You may simply have central apnea and need an ASV machine.

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.
08-17-2014 04:29 AM
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PaytonA Offline
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Machine: ResMed S9 VPAP Auto
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CPAP Software: ResScan SleepyHead

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Location: Orange County,California

Post: #18
RE: desperate: stopping cpap for now
Be careful when changing sleep study groups. There are good ones and there are not so good ones. I was lucky. The group that I got nailed my prescription and I had it set the same for my new S9 and my AHI has been between 0.0 and 0.6 for the last 3 days. My leaks are well below the redline. As I said-I got one of the good ones.
08-17-2014 12:29 PM
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storywizard Offline

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Posts: 350
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Machine: ResMed VPAP Adapt S9
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CPAP Pressure: CPAP 11cm
CPAP Software: SleepyHead

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Sex: Male
Location: Vancouver, BC, Canada

Post: #19
RE: desperate: stopping cpap for now
Had a wonderful sleep last night, obviously not feeling great yet, but I think it is the right decision, given my situation to stop the CPAP therapy until I can have the Sleep Study..

Thanks for all the support, you folks have been wonderful...

Storywizard
08-17-2014 05:00 PM
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storywizard Offline

Advisory Members

Posts: 350
Joined: Jul 2014

Machine: ResMed VPAP Adapt S9
Mask Type: Nasal pillows
Mask Make & Model: P10 taped to face
Humidifier: included with machine
CPAP Pressure: CPAP 11cm
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Vancouver, BC, Canada

Post: #20
RE: desperate: stopping cpap for now
(08-16-2014 08:07 PM)vsheline Wrote:  
(08-16-2014 06:41 PM)storywizard Wrote:  had started this thread...
http://www.apneaboard.com/forums/Thread-...and-events

Hi storywizard,

In my view, the key thing to make sure happens (right away as soon as your doctor gets back, before your sleep study) is that you are scheduled not for a standard CPAP titration, and not for a standard bi-level titration, but for an ASV bi-level titration.

Do not let them schedule you for a standard CPAP titration or for a standard bi-level titration, or you will be delayed more months to see if a standard CPAP or APAP or bi-level machine perhaps with oxygen supplementation would perhaps be "good enough" for you. What a colossal waste of time and money, when what you probably need is an ASV machine.

Good luck, and take care,
--- Vaughn

Could not afford an ASV machine...so won't even go there..

thanks for the support though...all the best,

SW
08-17-2014 06:46 PM
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