Changing My Own CPAP Prescription: Illegal or just Dumb?

Snooze_Blues · Post by **Snooze_Blues** » Mon Mar 10, 2008 6:38 pm

Is it criminal or criminally dumb to change my own CPAP prescription?

Can turning on C-Flex cause or increase central apneas?

*** WARNING: Do Not Read Below This Line! ***

Long, whiny post. Skip unless bored...

After 2 months of therapy, I raised my pressure from 6 to 7cmH20 and swallowed lots of air. Last night I turned on C-Flex at "1" to see what's what with that. Wow, my air swallowing (aerophagia) was minimized and the back pressure seemed to disappear. Nice.

Important discovery: Changing anything via my Encore Smart Card deletes all my data. Changing anything via my CPAP LCD interface deletes one day's data.

2nd PSG: I was re-titrated last Thursday at CPAP 8cmH2O and swallowed lots of air, but I was so sleep starved by morning I forgot to mention it and ask about C-Flex. I've felt better after bachelor parties. I had the worst room facing a long, sound channeling hallway. It was like an insane asylum. A lady in another room woke me up 2 or 3 times shouting, "HELP! HELP!". Weird, but there were so many other wall bumps, door closings, and assorted sharp sounds that she was in the minority of my wake-up events. At 10am they said they kept waiting for me to hit REM on my back, but after 5 hours of some mix of sleep stages, I never made it. *Sigh* What a waste. I can't wait to get the PSG summary to see what all happened. I haven't talked to the sleep lab since the PSG. I missed their call and the nurse I like speaking with isn't in on Mondays.

A gestapo DME RT who believes she has complete control over my medical treatment, perhaps my life, filled me in on my new prescription today. Our conversations always devolve into petty power struggles with me reminding her I prefer to work with their other local office. But not before I usually slip and mentioned something about monitoring my own data or such, which always triggers a surly interrogation about hardware or software, why I "need" data capable equipment, etc., which always gets me worked up and writing these long, whiny posts hoping to blow off some steam and re-center myself before I talk to my less aggravating, but even more "we control the vertical, we control the horizontal" sleep lab staff. What's a PAPer to do?

Anyway, after watching (and deleting) my data and making a couple very minor tweaks, I was feeling "in control" of my therapy. After the new PSG and the DME conversation, that's all changed.

I now wonder: am I breaking the law by changing my prescription? I feel like it after talking to either the sleep lab or the DME. It is a prescription after all. Can't just prescribe myself oxycodone, can I? I know it's probably unwise to 2nd guess the sleep doctor recommendations based on PSG data, especially since my 1st PSG showed a bunch of central apneas, but my 2nd PSG apparently showed less, so they are keeping me on CPAP. In fact, they didn't bother titrating me on the ResMed VPAP Adapt SV (ASV) machine they used to blow my CPAP therapy all night, which was calling me like a siren all night long from the night stand.

So again, if you made it this far, my questions are:

Is it criminal or criminally dumb to change my own CPAP prescription?

Can turning on C-Flex cause or increase central apneas?

RipVW · Post by **RipVW** » Mon Mar 10, 2008 6:51 pm

Definitely not criminal or criminally dumb to change one's pressure. CFLEX doesn't cause centrals, though I have heard that very high pressure can trigger centrals if one is prone to have them.

Wulfman · Post by **Wulfman** » Mon Mar 10, 2008 6:54 pm

If it was a "criminal" offense......most of us would be fugitives from the law.

If you were to press her on WHICH statute you'd be violating by changing your own pressure, she couldn't tell you because there are NONE.
That statute would probably have to apply to people with diabetes, too.....we monitor our therapy a lot more than our CPAP therapy.

C-Flex is a comfort setting and will have no effect on your therapy. See which of the three settings feels best to you. (I like the setting of 2)

I would highly suggest getting the card reader and software so you're not at the mercy of those idiots. It shows a LOT more about what's going on at night than just the totals on your LCD.

It's your therapy, not theirs. Glad to hear you're on your way to taking control of it.

Den

dsm · Post by **dsm** » Mon Mar 10, 2008 7:10 pm

Snooze,

Just move to Australia & become like a local (anti authority & do wot ya flamin want ) Here, some of us tell our highly qualified sleep docs what machines we want, they can argue with us but it gets em nowhere.

Now I can assure you it is worth the move just ask Blarg who shifted from the US (IIRC from Portland Oregon). He can now et his machine how he wants when he wants & where he wants & without any fear of RTs.

Another US cpapper (a cpaptalk regular) was here last w/e & we met & during the meeting (in a Sydney pub) had a discussed about him buying a machine while here - he was worried about breaking the law by taking it back to the US - now he is another person who needs to live here for awhile to help adjust his 'attitude' to authority

We Aussies really worry about youse folks in the US - this fear you have of authority figures just scares the daylights out of us, you folk have to get a grip.

DSM

Banned · Post by **Banned** » Mon Mar 10, 2008 7:15 pm

Snooze_Blues wrote:Is it criminal or criminally dumb to change my own CPAP prescription?

It's criminal and criminally dumb not to change your own prescription.

Cheers

Capri · Post by **Capri** » Mon Mar 10, 2008 7:21 pm

Welcome to an online group of smart people who are getting healthier by listening to their bodies, to each other, and adjusting their machines accordingly. BTW: I took my CPAP reports from my ResScan software to my doctor today.. I had to explain the reports to HIM. He just said, "carry on - looks like you've got it under control. Just let me know if you need an Rx for anything" (as if...)

Cheers!
Settings: CPAP 7cm, Ramp 10min @ 4cm, heated humidity, AHI=39

Main unit: ResMed S8 Elite, ResMed Humidaire 3i
Backup: ResMed S6 Lightweight, ResMed Sullivan Humidaire
Mask: ResMed Swift II
Backup: NasalAire I
Health Tools: ResMed ResScan Data Card, CMS-50E Pulse Oximeter, OneTouch Ultra glucometer, Citrus II spray mask cleaner
Software: ResMed ResScan 3.3, OneTouch, SP O2 Manager/Review

goose · Post by **goose** » Mon Mar 10, 2008 7:35 pm

Gotta go with DSM......Don't worry about the CPAP police being under the bed. Don't necessarily need to be from Oz to have that kind of attitude mate!!!
It's not illegal or criminal to change your settings -- as banned said, it's criminal or dumb NOT to change your settings if they are not working for you. It's your treatment and you know what feels good and works well for you.

Here in the US I believe it's unlawful for a DME to set a machine other than what is prescribed by the doctor, but you are not bound to that!!!

If I was worried about changing my own settings, I'd be in hiding, in a cave somewhere the "cops" couldn't find me, and I'd go down fighting!!!!!

Take control of your treatment. Put your foot down and don't put up with their crap. YOU are the patient and the customer. Make them treat you as such!!! If you have another option, perhaps exercise it!!

Good luck
take care
cheers
goose

alnhwrd · Post by **alnhwrd** » Mon Mar 10, 2008 9:00 pm

Yes, it is a crime. Everything you have said will be used against you. You have 24 hours to turn yourself in to the local police station. Expect a long sentence making little rocks out of big rocks. This goes for the rest of you criminals on this website too!

This message brought to you by the Friends of Medical Bullies and the Society for the Prevention of Good CPAP Therapy

Gerald · Post by **Gerald** » Mon Mar 10, 2008 9:16 pm

Snooze........

Welcome to the "dark side of the CPAP underground". What the others have said is correct. Take charge of your own treatment.....and you'll succeed. I've been 100% "compliant" since I started in Sept of 06......and I never again heard from my doctor after he extracted all the $$$$ he could get from my case.

I've purchased all my own equipment.....and managed my own care from day-one. My doctor was good for only one thing.....a prescription that allowed me to purchase what I wanted. In fact, after learning what I needed from this forum, I wrote my own prescription.....handed a copy to the doctor's assistant....and told him that was what I wanted said in my prescription. I was sized up as someone they didn't want to "mess" with....and I got what I wanted....quickly.

Read the "yellow lightbulb collective wisdom"....and everything else you can get your hands on. Educate yourself.......Knowledge is everything.

You can do it........

Gerald

dsm · Post by **dsm** » Mon Mar 10, 2008 9:26 pm

[quote="Gerald"]
<snip>
I wrote my own prescription.....handed a copy to the doctor's assistant....and told him that was what I wanted said in my prescription. I was sized up as someone they didn't want to "mess" with....and I got what I wanted....quickly.

<snip>

Gerald

Goofproof · Post by **Goofproof** » Mon Mar 10, 2008 9:37 pm

dsm wrote:Snooze,

Just move to Australia & become like a local (anti authority & do wot ya flamin want ) Here, some of us tell our highly qualified sleep docs what machines we want, they can argue with us but it gets em nowhere.
DSM

We weren't the fools that turned in or guns and ammo. Good luck with your new crime rate. Jim

dsm · Post by **dsm** » Mon Mar 10, 2008 9:44 pm

Goofproof wrote:
dsm wrote:Snooze,

Just move to Australia & become like a local (anti authority & do wot ya flamin want ) Here, some of us tell our highly qualified sleep docs what machines we want, they can argue with us but it gets em nowhere.
DSM
We weren't the fools that turned in or guns and ammo. Good luck with your new crime rate. Jim

Jim, you have us on that one - but, have to confess that it wasn't the law that caused me to hand my guns in here - it was my wife & while I can give the finger to the law (if am game), this Aussie would *not* disobey wifey

D

#2

Jim, Also some have a different theory on guns & crime - this controversial view makes some interesting points

http://www.isteve.com/abortion.htm

rested gal · Post by **rested gal** » Mon Mar 10, 2008 9:45 pm

If the good old family doc that I called to ask for an "autopap" prescription had not been willing to write it (he was... and wrote it just like I wanted) I fully intended to ask my vet to write the Rx. Autopap for a dog. He would have. I didn't have to resort to that, though.

Snooze_Blues · Post by **Snooze_Blues** » Mon Mar 10, 2008 10:12 pm

I tried to get an AutoPAP and they flat refused. Getting information from them is frustrating to say the least. They tell me stuff, but nothing that helps me understand anything I haven't already learned here.

When I woke up from my 2nd sleep study I asked the sleep tech if my centrals that night were primarily in stage 2, she says she didn't know. After milking my coco-puffs the sleep nurse RN comes in and I ask isn't central apnea primarily a stage two thing (thanks SAG), and are my apneas in stage 2. The RN starts telling me that there are different kinds of centrals. I say, "Right, transient sleep onset and arousal onset, and then the bad ones that stack up and beget others in stage two."

She acts like I just said nothing, gives me that look like "you can't possibly know what you are talking about", and says, "Without getting too technical (as a technical professional, I hate it when people, other than me, say that), there are several kinds of central apneas."

Huh?! Didn't I just say that?! Is this an insane asylum? I was still a bit groggy, was now angry, my coco-puffs were getting soggy, and I just didn't know what else to say. I feel like I'm talking to a warden or a head psychiatrist in "commitment-village" and they are all just humoring me while they are within my physical reach. They know I'll soon be gone. Problem over.

Damn! Has the whole medical profession gone stark raving mad? I know they're smart and all that, but hey, if you tell me something, and explain it, maybe there's a chance I'll understand it.

This central apnea thing is like the great mystery that only SAG, -SWS, dsm, RG, and the sleep doctors understand. That's what's holding me back from spinning the dials and ordering up some "high-dollar" equipment.

I am a mere mortal and nervous that "hosing up" to an auto or bi-level will have Mrs. Blues waking up next to stiff and blue Snooze.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Arousal, auto

rested gal · Post by **rested gal** » Tue Mar 11, 2008 12:14 am

Snooze_Blues wrote:This central apnea thing is like the great mystery that only SAG, -SWS, dsm, RG, and the sleep doctors understand. That's what's holding me back from spinning the dials and ordering up high dollar equipment.

SAG and -SWS, yes. But not me!!

Snooze, besides those two gentlemen, another poster who understands central apneas extremely well is christinequilts. It's been a long time since she's posted here, but her posts are extremely informative:

Links to Central Apnea discussions
viewtopic.php?p=22702

Christine posted quite a bit about her machine in the ASV thread. This link will plop you in at some of her posts:
viewtopic.php?t=11458
That's page 33 of that monstrous ongoing thread. Turn the pages either direction for more of her insightful writings about using that particular machine.

btw, I always love reading your posts, Snoozer. Serious stuff, but the dark humor you put in your accounts of "what happened" is wonderful! Sometimes we have to laugh, or.....

I do hope you get it all sorted out soon.

Changing My Own CPAP Prescription: Illegal or just Dumb?

Changing My Own CPAP Prescription: Illegal or just Dumb?

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