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[Symptoms] HELP FROM ANYONE PLEASE
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Peter_C Offline

Advisory Members

Posts: 1,308
Joined: Sep 2013

Machine: System One DS960HS
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro "MED"
Humidifier: Attached
CPAP Pressure: Auto mode-script is:15/3/3
CPAP Software: EncoreBasic Other Software

Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

Sex: Male
Location: Akron, Ohio USA

Post: #21
RE: HELP FROM ANYONE PLEASE
One possible suggestion? If you are going to your Doc and he is not helping, perhaps it is time to find a new/different Doc? I am very lucky, my sleep Doc is more interested in how I feel, and what my wife says about my sleeping than in what the machine is telling him. He wants spouses to come to the visits~! he chases good sleep, not numbers. Stick with it, don't give up, many smart people here may give you great ideas to try.

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
08-19-2014 12:56 PM
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trish6hundred Offline

Advisory Members

Posts: 6,450
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: #22
RE: HELP FROM ANYONE PLEASE
Hi ctolstad,
WELCOME! to the forum.!
I'm sorry you are having such a rough time with CPAP therapy.
If your doc isn't working with you, you should get a second opinion from another doc.
Keep us posted on how you are doing.

trish6hundred
08-19-2014 04:35 PM
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bwexler Offline

Advisory Members

Posts: 563
Joined: Mar 2012

Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
Mask Type: Nasal mask
Mask Make & Model: Sleepweaver √Član
Humidifier: Resperonics Heated Tube humidifier
CPAP Pressure: Max pressure 25.0 cm H20, Max
CPAP Software: SleepyHead EncorePro

Other Comments: CMS 50i with Software for SpO2

Sex: Male
Location: San Marcos, CA, USA

Post: #23
RE: HELP FROM ANYONE PLEASE
Ctolstad you really need to help us, so we can help you.
Remove the water tank from your machine if you have one. Then search the machine for a model number. It may be something like REF 750. We need to know the exact model number before we can advise you on how to get your data. How long have you had that machine. The age may help us figure out what it is.
We also need to know the brand and model of your mask and how long you have had that mask.
08-19-2014 09:20 PM
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Stroppy Offline

Preferred Members

Posts: 32
Joined: Jul 2014

Machine: F&P Icon
Mask Type: Full face mask
Mask Make & Model: F&P
Humidifier: F&P
CPAP Pressure: 17cm
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Australia

Post: #24
RE: HELP FROM ANYONE PLEASE
(08-18-2014 06:47 PM)justMongo Wrote:  
(08-17-2014 09:19 AM)Stroppy Wrote:  I can't help you at all with the technical stuff because I am new to all of this BUT from a medical viewpoint you need to take command of your situation. YOU are the patient and you have every right to pursue a fix for your problem. Just like any other condition, if you are unhappy with the way things are going with your current doctor go and get a second opinion. Sometimes that second opinion can be a life saver. There are times when doctors get too "comfortable" with patients... they listen to their woes but because they have preconceived notions about you they sometimes don't listen. My father complained to our family GP for years that he felt tired and thirsty all the time and all the doctor did was to reassure him he was okay...basically patted him on the head and told him to go home and stop worrying. One day while on holiday he felt so bad we had to take him to see a doctor in the ER. Within half an hour the ER doctor had diagnosed (correctly) that my father had developed type II diabetes and had probably had it for some time. So there's an illustration of the benefit of a second, unbiased opinion.

The second anecdote I will relate to you concerning second opinions relates to my poor mum. She had seen a GP over a course of year with back pain. He diagnosed osteoporosis without actually doing any scans and put her on NSAIDs to treat the pain. My father wasn't happy with this because my mum kept complaining that the pain was coming back. So he went and talked to the doctor and the doctor told my dad that my mum was overly dramatising the situation and that she'd be fine. Yeah...sure! My father told the doctor that he wanted a CT scan done on my mum and the the doctor reluctantly agreed...saying that he was only doing so for the sake of calming everyone down. So off mum goes for the scan. Whilst at the radiography rooms the senior radiographer comes out and tells my father that he is ordering an ambulance for my mum. My father is taken aback and asks why. No answer. But once at the ER the answer is provided...not a good one. My mother had cancer in her bones from the tips of her toes to the clavarium in her skull. It had probably been growing for over a year...the year my mum had been complaining to the original GP.

So my attitude to medical help is ALWAYS ask questions and ALWAYS get a second opinion if you aren't happy with the first doctor. That might just save your life.

Sounds like a couple of GPs need to be waterboarded!


I felt like doing that to them...but I suppose there are twits in every profession out there. Friends of ours told us to sue the doctor who had stuffed up my mum's diagnosis but all that would have done was given us money...it wouldn't have brought my mother back to life. My father had already told the doctor what he thought of him and repeated the same words in a packed waiting room. I think that was payback enough in many ways. The doctor retired a few months later. So he couldn't hurt anyone else after that.
08-20-2014 04:02 AM
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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: #25
RE: HELP FROM ANYONE PLEASE
(08-15-2014 08:59 PM)ctolstad Wrote:  :huh:Help, I am turning everywhere. I have been on bipap for about 20 years and now, I am not sure what has happened, the last few years, when I get up I am totally exhausted, like I have climbed a huge mountain. I am not out of breath, I have O2 connected, they have done all the sleep studies. I got a new machine about 5 years ago, unsure of when this started to happen, don't think with new machine. I tell my doctor this 1,000 times, but he can't figure out what to do. He says the pressures are fine. I get up, and spend the rest of the day on the couch recooperating from the 5 hours on the bipap. Help me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I would appreciate alllll advise.

Sleep docs General Docs and Cardiologists seem to work inside their own tunnels. One usually has no idea what the other is doing unless you make them interface with each other. Dont ask me how I knowRolleyes

Your trouble could not have anything to do with your machine. It could be something else could be wrong that isnt tied to your therapy.

At this point the point your at with Doc saying your readouts are good Id probably touch base with cardiologist etc just to be sure. JMO.
08-26-2014 09:01 PM
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Peter_C Offline

Advisory Members

Posts: 1,308
Joined: Sep 2013

Machine: System One DS960HS
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro "MED"
Humidifier: Attached
CPAP Pressure: Auto mode-script is:15/3/3
CPAP Software: EncoreBasic Other Software

Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

Sex: Male
Location: Akron, Ohio USA

Post: #26
RE: HELP FROM ANYONE PLEASE
Not all problems have to do with OSA/CPAP - does not mean these are centered in this area, but you may need to rule the following out.

If not checked within the last year, you need the following:

Full blood panel and work-up
PCP plain old exam
Heart DR check
Make sure you are currently taking and all DRs know what your full med list is - over the counter stuff too


Any new meds lately? You actually saw the sleep doc last, how long ago? Have you been watching your data closely? AHI and LEAKS?

Consider a recording Oximeter to verify and confirm your blood O2 is *not* dropping too low at night?

Then, fill us in on all of the above please?

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
08-26-2014 09:34 PM
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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: #27
RE: HELP FROM ANYONE PLEASE
(08-15-2014 09:40 PM)Ghandi Wrote:  The DME can print reports or you probably can do. I dont know if sleepyhead is compatible with your pap (I think it is) http://www.sleepfiles.com/SH/ It's a software to read you sd card and it will show you everything you need to know about AHI OA HI and so on. Check it out. Like retired_guy said, rocket scientists will eventually arrive. unfortunatly that wasn't me Smile Hang in there .
To avoid any confusion you should follow retired_guy advice Smile

ctolstad, which of these pictures does your Respironics machine look like? If it's the pre 2007, yours may be white instead of black?

[Image: which-remstar.jpg]

If it's anything other than the rightmost one, you can't use SleepyHead won't work with it.

If it's the pre-2007 model on the left, you'll need the Encore program mentioned above and the encore smartcard reader. Available for $80 or so from supplier #1.

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.
08-26-2014 11:57 PM
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