myapnea dot org

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Sat Nov 22, 2014 8:16 pm

asleep@thewheel wrote:It is a prescribed medical therapy. * * * This is why you can not buy over the counter opiate narcotics. You potentially might take too much and die.
I have been thinking about this analogy all afternoon and getting madder and madder at the thought that someone here might be misled by it.

First and foremost: air is not a controlled substance.

Second, not all prescriptions signify that a drug is a federally-controlled substance. You can't get penicillin OTC, either. There are even a lot of medications that are now OTC that were once prescription-only. Are they any less dangerous now that they are not prescription only? No.

Third, let's consider the opiates analogy for a moment. If you have prescription for opiates, it is not ILLEGAL to deviate from the dosing instructions. Here's an example. You have a tooth pulled, you get a prescription for painkillers. The label says take it every four hours. You go to bed and don't get up in the middle of the night to take it, so you go eight hours between doses. Is that "illegal"? Of course not. The next day, your mouth doesn't hurt very much, so you start stretching out the time between doses. Is that "illegal"? Of course not. There's no law that says if you are prescribed opiates, you must take every pill in the bottle (there is a law that says that if you are prescribed opiates, you can't let someone else have them, but that's a different matter). I should also point out that if you have a valid prescription for opiates you can still take too much and die. Your prescription does not prevent you from doing so.

Fourth, let's consider this situation. Imagine that you are a CPAP patient with a lazy doctor who prescribes you an APAP with the pressures set from 4 to 20, which isn't really a prescription at all. In our hypothetical, let's also assume that your lazy doctor at least made the effort write that prescription for a data-capable machine. You dutifully start using the machine and you discover over time that (1) you absolutely suffocate at a pressure of 4 every night until the machine climbs to around 10 and (2) you never, ever, see the pressure climb above 12. Why on earth would it be illegal to change the APAP range to 10 to 12? Those are the only pressures you are actually using.

I think a much better analogy for xPAP is insulin. Diabetic patients who are insulin dependent have to learn a great deal about managing their own blood sugar. The insulin is "prescribed," but the amount the patient has to administer to his or herself may be quite variable.

In some cases it may be a dumb idea to change your pressures, but it ain't illegal.

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Last edited by Drowsy Dancer on Sat Nov 22, 2014 9:05 pm, edited 1 time in total.
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archangle
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Re: myapnea dot org

Post by archangle » Sat Nov 22, 2014 9:02 pm

Johnnyb01 wrote: the DME apparently has a policy of locking the machines, which basicly lets you see no sleep data on the machine itself and only allows you to turn the machine on/off, turn the ramp on/off and adjust the temp (humidity) that lasted about 5 minutes from the time I got home
Far be it from me to defend DME's, but ResMed delivers sleep quality, EPR, and a few other things to the most patient unfriendly "off" and "locked" settings when they come from the factory.

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archangle
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Re: myapnea dot org

Post by archangle » Sat Nov 22, 2014 9:06 pm

asleep@thewheel wrote:Hello All,

viewtopic/t101787/viewtopic.php?f=1&t=9 ... rg#p929869

Let me see if I can clear up a few issues. I am the volunteer chief operating officer of the American Sleep Apnea Association. The ASAA is now a patient only organization. We have moved our sleep professionals into a newly formed Medical Scientific Advisory Council without voting privileges. We plan on inviting healthcare professionals from all arenas that connect with sleep fragmentation to join our advisory council so we can learn from each other in a bidirectional manner. Our executive director is a now patient with 20 plus years experience of being on bipap for mixed central apnea and has a ton of experience of running a forum. She was the founder of talkaboutsleep.

...

Adam Amdur
Welcome, Adam.

I hope this is truly a turnaround and ASAA will truly be patient focused.

However, who's paying the bills? How are you funded?

I do realize that even if you're funded by "the industry," that doesn't make you "corrupt."

I do understand the legal potholes of "the board" or "the association" suggesting to change the pressure settings and other things. There is a considerable degree of protection in US law for the operators of web sites for statements made by posters on web sites. It isn't absolute, but keep that in mind.

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cnaumann
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Re: myapnea dot org

Post by cnaumann » Sat Nov 22, 2014 9:23 pm

asleep@thewheel wrote:It is a prescribed medical therapy. What you do in your own home is your own business. This is why you can not buy over the counter opiate narcotics. You potentially might take too much and die. It has to do with one and only one issue. Liability. Doctors don't want to be sued for your error. It is not anymore complicated than that.
That statement makes no sense on any account.

First, you are comparing CPAP to narcotics. There is no similarity on any level. But beyond that...

I can't make narcotics in my home, so what goes on in my home is apparently not just my business. I can't make narcotics and sell them to other people even if I am willing to accept the 'liability' of them taking too much and dying. Whose liability is being limited by not allowing me to make narcotics at home?

Narcotics are dangerous and addictive. Society as a whole benefits from limiting their availability. That is the reason narcotics cannot be purchased OTC. It has absolutely nothing to do with liability.

Unfortunately, prescriptions are usually only about control and by control of course, I mean money. I can wear the exact same pair of glasses for 20 years. There is nothing illegal about that. However, if I broke those glasses, I would have to have a current prescription to replace them. What is the logic in that? A woman can take the exact same birth control pills for years. Yet very year, she must get a new prescription. Why? CPAP is the same way. You can use your machine for the better part of a decade, but if it beaks, you must get a prescription to replace it. How is this not about control and money?

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Re: myapnea dot org

Post by palerider » Sat Nov 22, 2014 9:29 pm

Drowsy Dancer wrote:
asleep@thewheel wrote:It is a prescribed medical therapy. * * * This is why you can not buy over the counter opiate narcotics. You potentially might take too much and die.
I have been thinking about this analogy all afternoon and getting madder and madder at the thought that someone here might be misled by it.
First and foremost: air is not a controlled substance.
+1

nice job smashing the bullshit!!!!

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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palerider
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Re: myapnea dot org

Post by palerider » Sat Nov 22, 2014 9:33 pm

cnaumann wrote:I can wear the exact same pair of glasses for 20 years. There is nothing illegal about that. However, if I broke those glasses, I would have to have a current prescription to replace them.
not even close to true, you can buy remarkably inexpensive corrective glasses online, no prescription needed, as long as you have the specifics needed.

here's a good starting point: http://glassyeyes.blogspot.com/

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SleepWrangler
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Re: myapnea dot org

Post by SleepWrangler » Sat Nov 22, 2014 9:41 pm

asleep@thewheel wrote:Imagine if we were all treated earlier and avoided those 7-10 years of misdiagnosis experience that most of us share.
Yes. That specific problem seems like it should be achievable but this forum struggles with the aftermath from 7-10 years of failed diagnosis. Given the current state of technology, the treatment protocol is too heavyweight, and does not specifically educate and empower the patient to become part of the healing process.
asleep@thewheel wrote:The Two major focus of their charge is to focus on diabetes and obesity. The HealtheHeart allinace, creaky joints, COPD, mood disorder, crohns, and many others chronic disease cohorts make up the Patient Powered Network that is being funded by the ACA. We have a chance to share our knowledge and identify all of those cardiovascular, anxiety, inflammatory patients that are still suffering inside of their healthcare system. Let's break the silos. Not one disease defines any of us.
This forum is practical and a few information packed FAQ articles are as close to a top down "policy" as you're likely to find. I hope you get some motivated contributors willing to make the leap to a more heavyweight top down policy driven forum. Likely it takes someone like Ancel Keys to correct all the policy mistakes that someone like Ancel Keys made in the first place.

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OkyDoky
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Re: myapnea dot org

Post by OkyDoky » Sat Nov 22, 2014 9:53 pm

SleepWrangler wrote:
asleep@thewheel wrote:Imagine if we were all treated earlier and avoided those 7-10 years of misdiagnosis experience that most of us share.
Yes. That specific problem seems like it should be achievable but this forum struggles with the aftermath from 7-10 years of failed diagnosis. Given the current state of technology, the treatment protocol is too heavyweight, and does not specifically educate and empower the patient to become part of the healing process.
Educating and empowering the patient through a respected partnership would go a long ways to limit liability.
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Re: myapnea dot org

Post by big_dave » Sat Nov 22, 2014 9:57 pm

What is a heavyweight top down policy driven forum? Is that the same as a heavy handed over-moderated forum? No, thanks.

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racprops
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Re: myapnea dot org

Post by racprops » Sat Nov 22, 2014 10:29 pm

I too had a jerk of a Doctor, and got the You cannot change the settings…and other power control games…So I have been treating myself with the help of this and other sites. IF not for these sites I would not be doing anywhere as well…

I find the idea of $1200.00 to $2000.00 (or higher)per person per night for a sleep study out of line especially when they usually have two people to one sleep tech…that is $2400.00 to $4000.00 PER ONE NIGHT.

I got my report and other that the EKG showing that I was clearly having clear air apnea, the rest of the report was LESS DETAILED than my Sleepyhead report of last night.

And the trucker horror stories of a Sleep center opening near their work and then all being made to pay for a sleep study or lose their jobs seems a little suspect.

At the time I was seeing a Sleep Doctor whom demanded $125.00 per visit while I was seeing my Heart Doctor who was charging me $72.00…and which is MORE qualified?? I did not see all that many diplomas on my sleep Doctors was as I did on my Heart Doctor’s wall.

And I feel they are over calming how much this problem can really cause…after so far NO ONE Has said they LOST weight from JUST being on CPAP…yet they will calm it CAUSES weight gain and problems…

I was told that my Sleep Apnea very well may have caused my quad by pass…I may never know for sure…

I can say that it seems to be a factor with what I have thought was chronic fatigue…

My 2 cents worth.

Rich

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Re: myapnea dot org

Post by Merlin7 » Sat Nov 22, 2014 10:35 pm

After reading the comments here, I was prepared to sign up and have a look at the general feel of the forum. BUT. When I went to do the sleep survey on their opening page, I was told I had to sign up first.
I'll not be spending time or any mental energy on them and will be sticking with the wonderfully helpful people on here, who are real everyday people.

As I'm a Brit I had a look at what's available in the UK forum wise, what a huge disappointment! Check out the British snoring association forum, I made some posts, but for some reason all my posts have to be approved by the administrator, and he isn't around for days on end. But all the Adds for products get a bloody quick response!

Thank goodness for the Apnea Board

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Merlin7
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Re: myapnea dot org

Post by Merlin7 » Sat Nov 22, 2014 10:39 pm

And now that everyone thinks I made a mistake with the forum name, I was just seeing how awake everyone was

The Cpap talk forum is really wonderful and I am grateful for its existence and all the genuinely helpful people here

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big_dave
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Re: myapnea dot org

Post by big_dave » Sat Nov 22, 2014 10:54 pm

Merlin7 wrote:After reading the comments here, I was prepared to sign up and have a look at the general feel of the forum. BUT. When I went to do the sleep survey on their opening page, I was told I had to sign up first.
I'll not be spending time or any mental energy on them and will be sticking with the wonderfully helpful people on here, who are real everyday people.

I'm not about to give them the next two years of my health information.

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cnaumann
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Re: myapnea dot org

Post by cnaumann » Sat Nov 22, 2014 11:55 pm

not even close to true, you can buy remarkably inexpensive corrective glasses online, no prescription needed, as long as you have the specifics needed.
Find a site there that claims you don't need a doctor's prescritpion for distance glasses.

You usually get something like this:
Will you be calling my doctor?
We will never contact your doctor without your permission. If we believe that there may be an irregularity with your prescription, we will contact you to confirm, not your doctor. We are required to take this information with your prescription.
The message is pretty clear. They will make glasses from an expired or bogus doctor's prescirption, no questions asked. That is not the same as not needing a doctor's prescription. There are no brick and mortar stores (around here) that will make glasses from an outdated prescription.

I looked into this recently. I have a heck of a time getting eye doctors to prescribe enough negative spherical correction. I seriously considered prescriping my own glasses.

racprops
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Re: myapnea dot org

Post by racprops » Sun Nov 23, 2014 1:20 am

Another thing:

I can just see the ads:

Become a sleep Doctor, no real work needed, all the answers are provided by your Sleep Tech and your patient’s sleep study, all you need do it read from their reports.

Almost no special training needed, just a fast short course in Sleep Treatments.

Charge big money and get big rewards, and even if you make a mistake NO ONE HAS EVER DIED from a miss-prescribed CPAP machine: cannot happen, so very little malpractice law suits, low risk and no one can prove you did anything wrong.

With such a sweet setup even I could be a Sleep Doctor.

Really how hard is it?? Do a sleep study and follow what your Sleep Tech reports..( By the way does anyone do one of these sleep studies and NOT need a machine??)

So you just need to understand what a few Apneas are.. and to prescribe one of four types of machine and say 4 to 6 settings…Tuning a car is more complex or was with older cars anyway.

Be a big shot and wow them at parties as a Sleep Specialist…sign up today!!!

At least that is how it looks from where I sit.

Rich

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