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Adjusting your own CPAP machine
#11
RE: Adjusting your own CPAP machine
(11-03-2015, 11:06 AM)jec335 Wrote: There really are many dangers associated with it. What if you increase it too much and cause central apnea to increase? What if you have lung disease or a heart condition? What if you turn it down too much and still have OSA and suffer the consequences of untreated apnea?
First of all, if you've lung or heart disease, you won't hang-out around here, you'll under the care of your physician or/and specialist, and you won't using just CPAP/APAP but rather more sophisticated machine

As for the other two points been raised, no problem with either my 'AutoSet', knows central apnea when see one and doesn't respond with pressure increase . Also, does it all unaided, I only pick a range works for me

Here is a guide may helps choosing the right machine http://www.apneaboard.com/wiki/index.php...ne_choices





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#12
RE: Adjusting your own CPAP machine
(11-03-2015, 03:08 PM)kaiasgram Wrote:
(11-03-2015, 11:06 AM)jec335 Wrote: I have to say something about this. Although I know it seems harmless enough, it is not harmless!
You asked to show you a law or rule and the rule is you cannot change your own prescriptions. That is why it is required to have a prescription! lol
There really are many dangers associated with it. What if you increase it too much and cause central apnea to increase? What if you have lung disease or a heart condition? What if you turn it down too much and still have OSA and suffer the consequences of untreated apnea? Quality sleep can be complicated. Simply adjusting your own cpap as a way to improve your sleep is reckless at best.
I speak up about this with good intentions for everyone to take a minute to think about it first. It is not a good idea.

jec335, welcome to the forum.

You would be wise to take a minute and educate yourself about this. Your machine -- the Sleepeasy you list in your profile -- is a "brick" machine that records absolutely no treatment data. So if you think your doctor has any idea how well your machine is working for you, or what your pressure should be, or whether your apnea is truly under control, you're very much mistaken. Your doctor has no more information than you do about what your machine is doing. Someone in your position, with a no-data machine, should not be making changes to your pressure because you have no way to monitor the result. Sadly, neither does your doctor.

We never advocate that people adjust their pressures without understanding what they are doing and why they are doing it, and how to do it responsibly. First, you need a machine that reports actual treatment data. Then you need to learn what the data means. We patients now have excellent software that allows us to understand our treatment data and to manage our PAP therapy, often more effectively than our doctors have the time (or interest) to do.

If you spend some time on the sleep apnea and CPAP forums you will soon find yourself reading accounts of doctors ordering wrong machines, wrong pressures, and having poor working knowledge of the intricacies of PAP therapy (even in cases where the data is available from the machine). And some of those medical mistakes have involved serious risks to patients. We also hear stories of people whose doctors tell them at follow-up appointments that they're doing great, when in fact they, like you, are using brick machines -- so when the doc says "you're doing fine" what that means is "I see you're using your machine" because a count of total use hours is all the data the doc has. Reckless at best?

If you feel you are doing well and you are comfortable with you and your doctor being in the dark about how your machine is actually performing, that is your choice. Just be aware that nowadays it is possible for patients to have a more active and responsible role in their own health when it comes to PAP therapy, just like diabetic patients learning how to read a glucose meter and use that data to appropriately adjust their medication dose. Always in partnership with our doctors.

Should you ever wish to understand or evaluate your CPAP treatment with a machine that can actually give you that information, we'll be here to help you.


LOL! Thank you for the welcome. I understand I have been put in my place.
I responded to the text I read on the front page, before requesting to join the forum. It is clear reading the responses I am getting that all of you are actively participating with your health care providers (and I have heard the horrible stories). I sometimes forget the difficulties of managing sleep apnea in primary care. Sleep Medicine physicians can be of the most help but often do not know or care for machines.

AND, you are all right. I need a machine that I can monitor. I will not deny that.

My intent to express an opinion to inexperienced cpap users was not needed here. I can see you are all very experienced in managing your sleep apnea.

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#13
RE: Adjusting your own CPAP machine
very cool. Sounds like you have a GREAT doc.
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#14
RE: Adjusting your own CPAP machine
jec335,

Your outlook is refreshing. We sometimes see people that toe the party line which seems to be that patients are too ignorant to be allowed any authority over their own treatment. Just like with much of medicine patients should be treated on a case by case basis and we feel that the one that knows our case best is ourselves. We tend to get a little touchy when doctors ignore us or try to put us off with platitudes. We also get very disappointed when we find medical professionals specializing in "sleep" that do not know the first thing about the practical aspects of the therapy.

Some of us have run across intelligent and caring doctors and other professionals dealing with sleep problems. We are very appreciative when we find this type of person. What tends to stick in our collective craws is that there are so few of these and so many of the opposite inclination.

Another feeling that I have, is that there is a cooperative effort to harvest large profits based on the lack of knowledge concerning the practical aspects of the condition and the therapy. This allows the manufacturers to provide the DMEs and the insurance companies with very pessimistic replacement schedules in the name of being careful.

We do appreciate medical professionals with the right attitude.

Best Regards,

PaytonA

Admin Note:
PaytonA passed away in September 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
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#15
RE: Adjusting your own CPAP machine
Thank You PaytonA, kind words indeed.
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#16
RE: Adjusting your own CPAP machine
I have also decided to take home a home sleep test tonight. It will only test respiratory effort, airflow, oxygen saturation and heart rate but if it shows I am not well controlled on my current settings, with my old "brick" (lol) then I may just have to upgrade and follow your advice!
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#17
RE: Adjusting your own CPAP machine
jec335

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#18
RE: Adjusting your own CPAP machine
Hi jec335,
WELCOME! to the forum.! Good luck to you with your home study and I hope you do upgrade to a newer, (fully data-capable,) machine.
Much success to you and hang in there for more responses to your post.
trish6hundred
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#19
RE: Adjusting your own CPAP machine
G'day jec335, welcome to Apnea Board.

Quote:My intent to express an opinion to inexperienced cpap users was not needed here. I can see you are all very experienced in managing your sleep apnea.

Well some of us are experienced, but we were all newbies at one time, and there are many CPAP newbies on the forum. I think your comments are valid to the extent that people shouldn't blindly change settings without an understanding of what's going on and what the implications of the change might be. You'll see we often do suggest changes, but only when there is some data available to justify it. More commonly we will tell people to obtain the software and get an in-depth understanding of how their therapy is working.
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#20
RE: Adjusting your own CPAP machine
(11-03-2015, 05:04 PM)jec335 Wrote:
(11-03-2015, 03:08 PM)kaiasgram Wrote: jec335, welcome to the forum...

LOL! Thank you for the welcome. I understand I have been put in my place...

Credit where credit is due -- thank you for listening to us and being open to our message about patients' involvement in their PAP therapy. Your response to us is refreshing and not what we usually encounter on this subject. We are all definitely on the same page about not blindly 'spinning the dial' on our CPAP machines. Wink

Which HST will you be using? It sounds like you're going to do the HST while using your machine?
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