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Adjusting your own CPAP machine
#1
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.
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#2
I for one would never advocate simply changing the settings blindly.
First step is to get software like Sleepyhead, Resscan, etc and monitor your therapy for at least a week. Then assuming you have an auto adjusting machine, make adjustments to the upper and lower limits based on your data. Comfort settings are more subjective. Having led a sheltered life I have never heard of your machine. It appears to be a straight CPAP, which I would never own. It also may not have software available to monitor the effectiveness of your therapy. Again, something I would never own.
So in your situation no one, not you or your doctor, has the ability to verify effective therapy or proper settings.
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#3
Quote:I have to say something about this. Although I know it seems harmless enough, it is not harmless!



Its not illegal. My 4 year old machine just died. I bought a used machine and am setting the settings to what they should be for me. Sometimes we have to do that. I can't tell you how unhelpful our "local" supply co has been. I called 3 pm on Friday to say my machine died. The lady said she wasn't sure she could get my presc on a Friday before 5. She'll call me back on Monday. Well, its Tuesday and no call. Glad I got a new one and am using it. If she doesn't call by Wed, I'm making an official complaint. They are horrible. NorthEast Wisconsin.

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#4
(11-03-2015, 12:06 PM)coffeegal33 Wrote: They are horrible. NorthEast Wisconsin.

It's only because they are frozen solid. Oh-jeez Big Grin

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#5
(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.

When you list your cpap as a sleepeasy. Does that mean it's from one of the Sleepeasy Centres in Australia ? Looks like it would be a Phillips product from them.
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#6
(11-03-2015, 02:29 PM)dwd1249 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.

When you list your cpap as a sleepeasy. Does that mean it's from one of the Sleepeasy Centres in Australia ? Looks like it would be a Phillips product from them.
It is an older machine. It works fine for me. It is a Philips Respironics machine.
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#7
(11-03-2015, 11:35 AM)bwexler Wrote: I for one would never advocate simply changing the settings blindly.
First step is to get software like Sleepyhead, Resscan, etc and monitor your therapy for at least a week. Then assuming you have an auto adjusting machine, make adjustments to the upper and lower limits based on your data. Comfort settings are more subjective. Having led a sheltered life I have never heard of your machine. It appears to be a straight CPAP, which I would never own. It also may not have software available to monitor the effectiveness of your therapy. Again, something I would never own.
So in your situation no one, not you or your doctor, has the ability to verify effective therapy or proper settings.
I am glad you are happy with your machine. Software is helpful and doctors and Respiratory Therapists use it every day to make decisions to successfully treat sleep disordered breathing. I am involved in these decisions every day as a RRT for over 30 years. I am also a registered in sleep.
I was just putting out a friendly reminder to those new to sleep apnea and sleep disordered breathing that there are other things to be considered and software and self monitoring is not always the best answer.



(11-03-2015, 12:06 PM)coffeegal33 Wrote:
Quote:I have to say something about this. Although I know it seems harmless enough, it is not harmless!



Its not illegal. My 4 year old machine just died. I bought a used machine and am setting the settings to what they should be for me. Sometimes we have to do that. I can't tell you how unhelpful our "local" supply co has been. I called 3 pm on Friday to say my machine died. The lady said she wasn't sure she could get my presc on a Friday before 5. She'll call me back on Monday. Well, its Tuesday and no call. Glad I got a new one and am using it. If she doesn't call by Wed, I'm making an official complaint. They are horrible. NorthEast Wisconsin.

There is surely a large host of things going on with local DME. If you get a good one you are lucky.
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#8
(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.
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#9
I am one of those fortunate people that has a doctor that insisted that I have a data capable, auto-adjusting machine and that the DME provider LEAVE the DME's set-up manual with me. Mine is a little bit more complex problem then OSA/CSAs and she wanted me to provide data sets, drug logs, with subjective clinical result reports, and we would tweak the machine settings. We did this in the beginning almost weekly - then monthly - now rarely. In the process I also became much more conversant with what did what and how small subjective things might be reflective of what the machine was doing. I still will sometimes tweak a setting if something isn't feeling right and either leave the change or set it back. And I do see her once a year for an update, face to face, talk about any new meds that may have come out we may want to try, and to see how I am doing. There is no way that we would have ever reached the results we did unless I could have made the adjustments. Yes, I did it with the Dr.'s input/monitoring/mentoring - but she was relying on me as much as I was on her. And now, she would be the last person in the world to say - OMG don't touch the settings unless we talk first. You know - it takes a scrip to get the drug - but only the patient can use it responsibly or decide to swallow an overdose.
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#10
Robert, I'm so glad you posted your story. It's such a good example of how well patient education and empowerment can work when the patient is motivated and the doctor is wise -- even in complicated cases. In fact when the case is complicated it's even more important that the patient be an active partner in treatment.
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