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[CPAP] Being your own advocate
#1
Being your own advocate
I totally agree with a post I read recently about being your own advocate.  Everything I have learned about sleep apnea has mostly been by looking things up.  I am in my second year of treatment and I am still learning.  I wear a full-face mask (one of many I have tried) and just recently someone suggested I get a satin bonnet to put on to help with the pulling of the straps on top of my head.  My comfort level improved tremendously!  That's the good news.  The not-so-good news is my events started going up and now they are consistently between 8-10 events. My machine is supposed to come on as soon as I stop breathing for 3 seconds.  I realize that sometimes your events can increase for various reasons but I have never had consistent numbers like I am experiencing now.  I am waiting on a clinician to call me tomorrow so I can see if I can borrow another machine (same type) and see if it makes a difference.  I am not sure if they can remotely check to see if the machine is coming on spontaneously or not.  Does anyone know?  I have enjoyed reading everyone's posts and many have been helpful to me.
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#2
RE: Being your own advocate
Welcome to Apnea Board. Can you clarify for me what you're referring to "My machine is supposed to come on as soon as I stop breathing for 3 seconds."

Does this refer to Auto Start and Stop settings? Because the wording makes it sound like the CPAP isn't on, you stop breathing for 3+ seconds, and it didn't turn on. If this is truly the case, you do need the CPAP to be turned on to provide therapy, either via a manual press of the power button or auto start. Auto Start can turn the unit on just after you begin breathing into the mask. But it shouldn't be turning itself on and off while you're asleep.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Being your own advocate
You have a VAUTO listed under your profile but it sounds like your describing a Bpap with backup. Either an ASV or ST.
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#4
RE: Being your own advocate
(07-25-2018, 06:09 PM)SarcasticDave94 Wrote: Welcome to Apnea Board. Can you clarify for me what you're referring to "My machine is supposed to come on as soon as I stop breathing for 3 seconds."

Does this refer to Auto Start and Stop settings? Because the wording makes it sound like the CPAP isn't on, you stop breathing for 3+ seconds, and it didn't turn on. If this is truly the case, you do need the CPAP to be turned on to provide therapy, either via a manual press of the power button or auto start. Auto Start can turn the unit on just after you begin breathing into the mask. But it shouldn't be turning itself on and off while you're asleep.

Thank you for responding.  I guess my wording was a little confusing.  My CPAP is breathing with me but if I stop breathing for longer than 3+ seconds, I get a burst of air to whatever pressure is needed up to 23.  My guess is the pressure is not going beyond what I need to start me breathing which is what it is supposed to do, unless I am totally confused about how the machine is supposed to work.  I will find out tomorrow after I talk to the clinician.
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#5
RE: Being your own advocate
(07-25-2018, 06:34 PM)Walla Walla Wrote: You have a VAUTO listed under your profile but it sounds like your describing a Bpap with backup. Either an ASV or ST.

Thank you for responding.  I am on a BiPap.  I am not certain that I have ASV or ST.  The machine breathes with me but if I stop breathing more than 3+ seconds, it is supposed to send me a burst of pressure up to 23 to initiate my breathing again.  At least, that is the way it was explained to me previously.  I will be talking with my clinician tomorrow and hope to get more information.  It took me over a year to get the proper mask and a comfortable one, and during that time I was reading online about the different machines and read about the Vauto.  I was NOT getting results with the initial machine and then the Dr. tried me on another machine but it was horrible and did not work out at all.  After that was when I suggested to the Dr. that perhaps the VAuto might work for me and it has until just recently.  I no longer have that physician but go somewhere else now.  The new physician seems to be more reactive to helping me.  The past two years have been a real challenge for me with minimal support from the one physician and then trying to get a supplier and clinician that would act like they cared.  I stuck it out with the one I have and after several conversations with a Supervisor, I began to see a change.  Again, Be Your Own Advocate.
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#6
RE: Being your own advocate
(07-25-2018, 10:02 PM)Unrequited sleep Wrote:
(07-25-2018, 06:09 PM)SarcasticDave94 Wrote: Welcome to Apnea Board. Can you clarify for me what you're referring to "My machine is supposed to come on as soon as I stop breathing for 3 seconds."

Does this refer to Auto Start and Stop settings? Because the wording makes it sound like the CPAP isn't on, you stop breathing for 3+ seconds, and it didn't turn on. If this is truly the case, you do need the CPAP to be turned on to provide therapy, either via a manual press of the power button or auto start. Auto Start can turn the unit on just after you begin breathing into the mask. But it shouldn't be turning itself on and off while you're asleep.

Thank you for responding.  I guess my wording was a little confusing.  My CPAP is breathing with me but if I stop breathing for longer than 3+ seconds, I get a burst of air to whatever pressure is needed up to 23.  My guess is the pressure is not going beyond what I need to start me breathing which is what it is supposed to do, unless I am totally confused about how the machine is supposed to work.  I will find out tomorrow after I talk to the clinician.

OK, makes more sense now. On the front of all ResMed 10s is a metallic looking name, such as Air Sense 10 something or AirCurve 10 something. What does yours say in full? Alternatively, what does the label on the rear call your machine? Just trying to give your machine a proper ID to help us help you.

I'm starting to believe as Walla Walla, you may have a BPAP with backup.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Being your own advocate
(07-25-2018, 11:35 PM)SarcasticDave94 Wrote:
(07-25-2018, 10:02 PM)Unrequited sleep Wrote:
(07-25-2018, 06:09 PM)SarcasticDave94 Wrote: Welcome to Apnea Board. Can you clarify for me what you're referring to "My machine is supposed to come on as soon as I stop breathing for 3 seconds."

Does this refer to Auto Start and Stop settings? Because the wording makes it sound like the CPAP isn't on, you stop breathing for 3+ seconds, and it didn't turn on. If this is truly the case, you do need the CPAP to be turned on to provide therapy, either via a manual press of the power button or auto start. Auto Start can turn the unit on just after you begin breathing into the mask. But it shouldn't be turning itself on and off while you're asleep.

Thank you for responding.  I guess my wording was a little confusing.  My CPAP is breathing with me but if I stop breathing for longer than 3+ seconds, I get a burst of air to whatever pressure is needed up to 23.  My guess is the pressure is not going beyond what I need to start me breathing which is what it is supposed to do, unless I am totally confused about how the machine is supposed to work.  I will find out tomorrow after I talk to the clinician.

OK, makes more sense now. On the front of all ResMed 10s is a metallic looking name, such as Air Sense 10 something or AirCurve 10 something. What does yours say in full? Alternatively, what does the label on the rear call your machine? Just trying to give your machine a proper ID to help us help you.

I'm starting to believe as Walla Walla, you may have a BPAP with backup.

The front of the machine is labeled Air Curve 10 and underneath that is "VAuto".  No further description on the back of the machine, just model number, serial number, where it was made, etc.
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#8
RE: Being your own advocate
That machine is a vauto (auto bi level machine) it does not have the ability to provide a timed breath
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#9
RE: Being your own advocate
I think we could help you more if you could provide copies or summaries (images) of your sleep studies. In particular it is important to know if your machine should be treating central or complex apnea. Also, posting a chart from the free #Sleepyhead program would provide comprehensive information on your machine type, settings, effective therapy pressures, and conditions that give rise to increased events. Please consider downloading and using #Sleepyhead.

Instructions for organizing and posting charts and images can be found in the signature links below.
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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.
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#10
RE: Being your own advocate
Thanks for checking the ID. Agree as well with advisement of the others.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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