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Permalink Reply by Cliff on March 5, 2009 at 1:46pm

Is it considered unethical to make a change to a prescribed treatment without substantiation? I agree with your idea but are there consequences to "just making a change"?

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Permalink Reply by Mike on March 5, 2009 at 2:03pm

it's absolutely considered unethical to do so, perhaps even illegal. so i'm not saying people should do that. but they certain should be able to, if they know what they're doing and it's something as simple as this. also, even if they have to make an appointment with their doctor or equipment provider to do it for them, it'd still be a heck of a lot cheaper and easier to do that than go through a whole new overnight sleep study.

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Permalink Reply by Claudia on March 5, 2009 at 2:05pm

It is them. I have been in treatment for sleep apena for over two years and still don't have my pressure right. They won't let us do it ourselves--a "professional" has to do it. It's crazy! And, although I've been in treatment, I'm still exhausted an cannot work.

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Permalink Reply by Judy on March 5, 2009 at 2:22pm

The "sensible" solution is to call your doctor (your PCP will do) and have a loaner autoPAP scriipted for a month. Duh! Or, if you make a mistake and call your sleep doctor HE should just order an at-home sleep study/titration and adjust your pressure accordingly. Duh!

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Permalink Reply by Jeffrey Donaldson on March 5, 2009 at 2:28pm

I'm sure that the medical field looks at this as unethical, just like playing with your medications in pill form, However with that said, how many of us have adjusted our pressures? Let's see a show of hands. I know that my pressure was set way to low at first. The doctor told me it was intenional so that I would get used to C-Pap gradually and not be frustrated with it. You might want to take that into consideration. He ordered it increased at a later date and that was done. That was quite some time ago and since then I did turn mine up myself until it felt right. So I am guilty too. I just couldn't see going through another sleep study just for that.

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Permalink Reply by Mary Ann McPheeters on March 5, 2009 at 3:12pm

Well, I don't think either of you are crazy. First, if the CPAP is one that can be turned up by the user, it's a great idea to try it at a higher setting. However, if it's like mine it can only be altered by the providing company ONLY with a prescription from my sleep med. doctor...so it will involve a new sleep study. It is for this very reason that I keep my very first CPAP around (>12 yr. old); it has the ability to be altered simply by the user turning a dial. It also allowed varying the ramp time, which I used alot because some nights I just had a harder time winding down and needed more time to adjust to the pressure and the mask. I use this old machine primarily for traveling but am willing to 'experiment' with it on the few occasions when I am not getting the relief I need. Sorry that the new machines are so advanced that we are not allowed to 'tamper' with them! Seems that technology got smarter as we got dumber...according to them, anyway! :-(

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Permalink Reply by sleepycarol on March 5, 2009 at 6:34pm

I want to know where in the law it states that it is illegal for USERS to reset their OWN pressure. I know it is illegal for a DME / medical professional to change it without a doctor's orders. But no one has ever convinced me that there is actually a law that makes it illegal or unethical to change one's own pressure.

Yep, I have changed my pressure but not blindly. I took the data and went on the way I felt and changed. I have only changed it once in the year and half I have been on it.

As long as you have a data capable machine and the software and are monitoring your therapy I do NOT see any reason why you shouldn't be able to change your pressure according to your needs.

Instructions on changing your pressure are available on the web and may be found in several locations. Do a google search and you should be able to find it.

Here is a link that will tell you how on some of the machines: http://www.cpap-supply.com/Articles.asp?ID=130

All I did was do a google search on clinician's manuals for (insert what cpap you are using here)

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Permalink Reply by Mike on March 5, 2009 at 6:57pm

i don't know whether it's illegal to change one's own pressure. would be stunned if it were. they certainly do discourage us from doing so, though,

sleepycarol said:

I want to know where in the law it states that it is illegal for USERS to reset their OWN pressure. I know it is illegal for a DME / medical professional to change it without a doctor's orders. But no one has ever convinced me that there is actually a law that makes it illegal or unethical to change one's own pressure.

Yep, I have changed my pressure but not blindly. I took the data and went on the way I felt and changed. I have only changed it once in the year and half I have been on it.

As long as you have a data capable machine and the software and are monitoring your therapy I do NOT see any reason why you shouldn't be able to change your pressure according to your needs.

Instructions on changing your pressure are available on the web and may be found in several locations. Do a google search and you should be able to find it.

Here is a link that will tell you how on some of the machines: http://www.cpap-supply.com/Articles.asp?ID=130

All I did was do a google search on clinician's manuals for (insert what cpap you are using here)

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Permalink Reply by Banyon on March 5, 2009 at 7:57pm

Help me compose a snappy retort to medical professionals who say patients should not change their CPAP settings. Something like,

"Sleep doctors and other sleep medical professions need to come out of the dark ages. Look at what the diabetes medical profession has been doing for years. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise. CPAP is much simpler than that. But sleep apnea is a very damaging condition and it is very important to have an optimal therapy. So come out of the dark ages and model your practice after what your associates in diabetes treatment have done. This will come. Don't let your practice be left behind. Empower your patients to take control of their own therapy and improve their lives."

Now if I can just say that to them without clenching my teeth. :)

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Permalink Reply by Mike on March 5, 2009 at 8:21pm

I like it. Here are my edits: Sleep doctors and other sleep medical professionALS need to come out of the dark ages FOR THEIR OWN SAKE AND THE SAKE OF THEIR PATIENTS. Look at what the diabetes medical profession has been doing HOW MEDICAL PROFESSIONALS TREAT DIABETES. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise. CPAP is much simpler AND LESS INVASIVE than that, BUT JUST AS IMPORTANT TO GOOD HEALTH. BUT YOU "HIDE THE BALL" FROM PATIENTS BY NOT LETTING THEM MODIFY THEIR CPAP SETTINGS. But sleep apnea is a very damaging condition and it is very important to have an optimal therapy. FURTHERMORE, YOU JEOPARDIZE YOUR ENTIRE FIELD OF SLEEP MEDICINE BY LETTING YOUR PATIENT BASE BECOME FRUSTRATED AND HOSTILE TO YOUR "GOLD STANDARD" OF CPAP THERAPY. So come out of the dark ages and model your practice after what your associates in diabetes treatment have done. This will come. Don't let your practice be left behind. Empower your patients to take control of their own therapy and improve their lives.DO WELL BY DOING RIGHT. EMPOWER YOUR PATIENTS TO TAKE CONTROL OF THEIR OWN THERAPY AND IMPROVE THEIR LIVES.

Banyon said:

Help me compose a snappy retort to medical professionals who say patients should not change their CPAP settings. Something like,
"Sleep doctors and other sleep medical professions need to come out of the dark ages. Look at what the diabetes medical profession has been doing for years. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise. CPAP is much simpler than that. But sleep apnea is a very damaging condition and it is very important to have an optimal therapy. So come out of the dark ages and model your practice after what your associates in diabetes treatment have done. This will come. Don't let your practice be left behind. Empower your patients to take control of their own therapy and improve their lives."
Now if I can just say that to them without clenching my teeth. :)

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Permalink Reply by Banyon on March 5, 2009 at 8:31pm

That's good Mike. "Less invasive" is a good add.

We could also make a slam at the sorry compliance record of their patients. But careful not to let it get too long winded.

Sometimes you need to break a little china in the shop.

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Permalink Reply by Darillyn Patterson on March 5, 2009 at 11:01pm

I've only had my machine for a couple of weeks. My pressure is quite low. The therapist told me the lowest setting is 4; my setting is 5. How would I know if it should be higher?

Mike said:

it's absolutely considered unethical to do so, perhaps even illegal. so i'm not saying people should do that. but they certain should be able to, if they know what they're doing and it's something as simple as this. also, even if they have to make an appointment with their doctor or equipment provider to do it for them, it'd still be a heck of a lot cheaper and easier to do that than go through a whole new overnight sleep study.

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