Is it Illegal to Change Settings on One's CPAP Machine?

[boston]

you'd have to be a pathetic moron to change your settings based on what you read on a website forum. Consult your doctor!

our doctors are probably reading these forums behind closed doors, so i say cut out the middle man !!!!!!

and besides, no one has a higher stake in my health as I do, no one konws everyhing thats going on, how i feel, etc. as well as i do.


i cant believe this topic comes up soo much, its air, if we adjust our settings wrong, we dont feel as well the next day, we pay the price, we learn and readjust.
its not like were getting drunk and driving here.

WITHOUT the help of any "medical professional", i have gotten my AHI down consistently under 1, usually under 0.5.
so id say this board and its members are a pretty damn good resource for people serious about their treatment.

[JZ]

...or as needed ...

Kinda hard to violate a prescription that vague!

(Why would anyone care if Texans OD themselves out of existence anyway? )

Our Legislature is in their biannual session right now, which kinda does make you want to OD. There is that old saying about the Texas Legislature that it meets for 150 days every 2 years, but would be improved if it met 2 days every 150 years.

JZ

[Guest]

you have no idea what you're talking about. Go talk to someone with respiratory insufficiency who changes their pressure based on a bunch of "scientists" on here.

[-SWS]

the great self-prescribing clueless....I can't wait for the first COPD patient to come on here stating that they were harmed because they self-titrated based on advice received here.......just sayin..........it's coming.

Well, fortunately we haven't had one yet.

But what's even more amazing than not yet having had what you described: the vast number of patients who show up here with totally screwed up CPAP pressure settings from the health professionals. And they're not even scientists!

[WearyOne]

I'm just throwing out another "guess" here. If someone forgets to take one of their pills that they're supposed to take once a day, that's not following the prescription. It may not be on purpose, but technically, they aren't following the prescription. Is that illegal? How can it be, when instructions are provided on what to do if you do forget to take one. Something like, "If you forget to take you medication, take it as soon as you remember. If it's close to the next dosage time, skip the missed dose. Do not double up." And how could one separate those who "forget" from those that actively decide to take a different dose, and say one person is doing something illegal and the other one is not?

Another guess might be that maybe it's not illegal to do differently than your prescription states (meds or med equipment), but it can certainly be dangerous in certain circumstances to do things differently, or if you don't know what you're doing. I've changed some med dosages, and I've changed my pressure---but have been very careful about both.

I still believe that what goes for prescription meds goes for prescription medical equipment, whatever that really is.

This is an interesting debate.

Pam

[boston]

you have no idea what you're talking about. Go talk to someone with respiratory insufficiency who changes their pressure based on a bunch of "scientists" on here.

i dont think anyone here ever claimed to be a scientist, that said

why dont you stick your cpap hose where the sun dont shine and set your pressure to the max !!!!!!!!!!!

[LoQ]

Consult your doctor!

I did. He told me to let him know what pressure I end up with.

Ditto. I phoned him (my "sleep" doctor) and left a message for him telling him what I had decided on. He had someone on his staff relay a message back to me that that was fine. He also told me that he would not be changing settings for me, that I needed to do this myself. Ha. He's a brilliant doctor.

I told my PCP that I had been all through the clinician's menu on my machine, and he chuckled. He seems to think it's a good thing that I am willing to figure this out for myself. Imagine that--an actual M.D. with tens of thousands of hours more medical training than an RT who thinks it's not only OK, it's a really positive thing for me to change my settings to make it therapy work for me. He actually said to me at one point that if I wanted a different machine, that he would write a prescription for "anything you want."

That's two M.D.'s right there that not only have no problem with me changing my settings, they actually encourage it.

If it's so dangerous for me to do that, how come my doctors are so much more ignorant than our "Guest" here and other RTs slamming this practice? Does anyone honestly think an RT knows more about the potential consequences of this than medical doctors? And these are not just any doctors. They both are in full-time practice, and both have either taught or are teaching medical school at a prestigious institution.

[Slinky]

Lawdy, Guest!!! It was a licensed sleep pulmonologist, critical care specialist who ORDERED AN AUTO PAP LOANER SET AT 4 CMS TO 20 CMS for three weeks when he was well aware not only that I had COPD but also had the results of a recent PFT, ABG and chest CT scan films and was aware of my history of one spontaneous pneumothorax. Talk to me about changing my own pressure settings again, will ya? I can hardly do worse than that.

And guess what? I had NO problems that entire 3 weeks - other than no humidifer thanks to the sheister DME supplier I was unfortunate enough to be stuck with at the time. I did keep the sleep pulmo/critical care guy but was smart enough to dump the sheister DME supplier.

[WearyOne]

<snip> Go talk to someone with respiratory insufficiency who changes their pressure based on a bunch of "scientists" on here.

No one is forcing a person to search the Internet for help with CPAP. No one is forcing that person to follow what is said on a forum. The freedom to decide to or not to change pressure is soley up to that individual person. If that person decides to take a chance and change their pressure based on what they read on the Internet, they also take the responsibility of the consequences, good or bad. We're not physicians on here, and we don't claim to be. Just sharing what we do know, and what has worked for us. It's up to each person to decide if they want to try it, too.

(And why did you say "scientist," instead of "physician"?)

Pam

[Trebor Croy]

Gee, if I change my own pressure would it be a misdemeanor or a felony? Sure hate to think that I might loose my job, couldn't vote, own a gun or get a loan from the federal Small Business Administration. Will they allow CPAP's in the Big House? Me thinks it's all BS.

[CollegeGirl]

If I had listened to my sleep doctor I fully think I would have had a stroke by now.

Short version:

100+ events per hour.

Rxed 6 cm. Couldn't breathe. Kept telling sleep doc (at school) I wasn't getting enough air. Still having drowning dreams, night sweats, exceptional fatigue.

"We'll up it to 8. No further. Your sleep study was flawless."

Except it wasn't.

Still tired. Still couldn't breathe. Still having apnea symptoms.

I needed 11 CM to bring my AHI down to a reasonable level.

If my family doc back at home had not RXed an auto so I could find the right pressure for me, I fully expect I would have given up on CPAP after more than six months of absolutely ZERO improvement.

Doctors who don't listen to their patients' concerns are much more dangerous, IMHO, than a patient who makes informed decisions based on data, peer interaction, and research.

[WearyOne]

As long as I smoked in the privacy of my home or car and wasn't subjecting anyone else to it I was not endangering anyone but myself.

I sure as heck wouldn't want mail out of a smoked-up car. Gross. Also, the smoke does not stay just in your space. One of the reasons I bought my own separate house was to get out of second hand smoke in apartment buildings. It was killing me. Only to find I can't enjoy my yard or open my windows because my neighbors sit on their porch all day and night chain smoking. I'm pretty damned sick of smoke and smokers myself.

I know this is OT, but I just have to say I agree with you. Fortunately, I don't have as much of a problem as I used to, but there are times...LOL

I will say that my dear SIL is the nicest smoker I have ever met. She doesn't even smoke in her own house because of her kids (she smokes outside). And when we go out, we take my car because she says hers smells too bad. And when we go out to eat, she wants to sit in the non-smoking part of the restaurant since I don't smoke! She wants to quit, but it's a huge battle for her, especially since her husband smokes and doesn't want to quit.

[Slinky]

Nobody, I'm sorry you are so super-sensitve to smoke that you can't even tolerate your neighbors smoking outdoors in their own yard.

I, on the other hand, am super sensitive to so many of the scents added to cleaning products, room deodorizers and especially colognes and perfumes. I dread getting in an elevator and prefer to use stairs whenever possible. These scents are a LOT more difficult to avoid than cigarette smoke. There's no law against wearing perfume and cologne in offices, restaurants, etc. Some people seem to take a bath in the darn stuff!!!

[greenvelvetdragon]

Consult your doctor!

I did. He told me to let him know what pressure I end up with.

Ditto. I phoned him (my "sleep" doctor) and left a message for him telling him what I had decided on. He had someone on his staff relay a message back to me that that was fine. He also told me that he would not be changing settings for me, that I needed to do this myself. Ha. He's a brilliant doctor.

I told my PCP that I had been all through the clinician's menu on my machine, and he chuckled. He seems to think it's a good thing that I am willing to figure this out for myself. Imagine that--an actual M.D. with tens of thousands of hours more medical training than an RT who thinks it's not only OK, it's a really positive thing for me to change my settings to make it therapy work for me. He actually said to me at one point that if I wanted a different machine, that he would write a prescription for "anything you want."

That's two M.D.'s right there that not only have no problem with me changing my settings, they actually encourage it.

If it's so dangerous for me to do that, how come my doctors are so much more ignorant than our "Guest" here and other RTs slamming this practice? Does anyone honestly think an RT knows more about the potential consequences of this than medical doctors? And these are not just any doctors. They both are in full-time practice, and both have either taught or are teaching medical school at a prestigious institution.

I have had the same experience as Nobody and LoQ-as i was tried on pressures between 10-12 during my study, put on 10 by the RT and after several weeks of little improvement tried 11 then 12 and found 12 to be optimum for me, neither my thorasic MD or his cohort, also from a prestigious teaching hospital, batted an eye and congratulated me for listening to my own body and finding what worked best for me.

so there mr/ms guest, if you really want to attempt to be a worthwhile contributer to this wonderfully helpful and supportive forum, stop being a condesending jerk, actually register and stop hiding as a guest. show some conviction if that is how you really feel, but my guess is you cant stand the fact that us mere 'uneducated' mortals, or was that morons you called us, might teach you a thing or three....

[greenvelvetdragon]

Nobody, I'm sorry you are so super-sensitve to smoke that you can't even tolerate your neighbors smoking outdoors in their own yard.

I, on the other hand, am super sensitive to so many of the scents added to cleaning products, room deodorizers and especially colognes and perfumes. I dread getting in an elevator and prefer to use stairs whenever possible. These scents are a LOT more difficult to avoid than cigarette smoke. There's no law against wearing perfume and cologne in offices, restaurants, etc. Some people seem to take a bath in the darn stuff!!!

While I am almost but not quite as sensative as Nobody, I do understand where he is coming from as I used to live next door to people I swear had their own backyard pub...

Slinky on am totally with you on the perfume. One good whiff of some overpowering flowery scent and I get a migraine in seconds.......