The following is an argument supporting patient access to full CPAP control that I copied and pasted from another website.  I did not post any actual instructions for how to gain access because I know that this forum does not allow such posts.  Hopefully this forum's moderators are not afraid of a little free speech.  (We'll see.)


There is a lot of talk about how it's "illegal" to adjust one's own CPAP machine pressure, that only a licensed, certified or qualified technician, physician or clinician can do it.  First of all, I challenge anyone to show me any local, state or federal law that makes adjusting your own legally-obtained CPAP machine a crime, or even threatens punitive action for doing so. Go ahead - I double-dog dare 'ya.    Yes, you must first have a prescription to obtain a CPAP machine - but after you OWN one, you are within your rights to do whatever you darn well please with it, including using it as a leaf blower, running it over with the family car, or... (oh no!) - changing your own pressure settings.

Remember the last time you went to the pharmacy to pick up a prescription? You walked up to the counter, handed over the script, waited a few minutes and received a full bottle or package of something - pills, liquids, whatever. "Take the prescribed dose once per day for ten days, with food", the pharmacist said.

Fast forward to right now. You've just bought a CPAP machine - or maybe you've been using a CPAP machine for years - and you've discovered that you don't know how to adjust the pressure setting. The primary function of the CPAP machine is to blow air at a certain pressure, and you don't even know how to change the pressure? That's like not knowing how to change the ringer volume on your cell phone, isn't it? Isn't that a vital function that all CPAP users should be familiar with? To you - and to most other CPAP users - the CPAP machine is a mysterious "black box". Something only someone else knows how to program. You just turn the thing on, put on your CPAP mask and hope your CPAP therapy works as advertised.

So why is that you don't know how to adjust the pressure setting on your CPAP machine? The problem is that the manufacturer of your CPAP machine has hidden some controls from you. In fact they've hidden an entire menu of controls found in what is commonly referred to as the "clinician's setup" or "provider setup" mode.

Consider that trip to the pharmacy one more time. When you think about it, there's an awful lot of trust between you and your doctor, the doctor and the pharmacist, and the pharmacist and you. You've been told what to do, and they're assuming you're going to do it - correctly. You're also assuming your doctor wrote the right prescription and the pharmacist filled it as written.

Taking this trust issue a step further, consider the fact that when you get a prescription filled at the pharmacy, you don't have to go get one pill at a time. You're trusted with the whole bottle of pills and everyone involved is assuming that you're responsible enough not to do anything stupid with those pills.

So given the secret of the clinician's setup mode would you suddenly become irresponsible? Untrustworthy and reckless? Bent on self destruction by way of CPAP machine? It could happen. But I don't think it will.

I firmly believe you are your own best primary care provider - that nobody else is looking out for your health and well being as much as you are. I therefore think you should be trusted with the knowledge of how to adjust the pressure setting on your CPAP machine. Don't get me wrong. I'm not advocating changing the pressure setting on your CPAP machine willy nilly, without regard for your own well being, and I'm certainly not providing you with medical advice (primarily because I don't know you and I'm not a doctor). I think all responsible CPAP users should use common sense when using their CPAP machines, and I think it's a very good idea to talk with your physician or sleep therapist before making any changes to your CPAP therapy. Sleep apnea is a very serious condition, and altering your prescribed therapy settings could reduce the effectiveness of your CPAP therapy.

pamunkey wrote:

Sleep apnea is a very serious condition, and altering your prescribed therapy settings could reduce the effectiveness of your CPAP therapy.

You just bought back your whole rant with that!  

Whether you like it or not, for some users altering xPAP settings could be deadly!   Sleep disorded breathing (SDB) takes many forms, of which OSA is only one.  Also, other Sleep Disorders may accompany OSA.  Patient altering of their OSA treatment prescription may well have consequences in terms of concurrent sleep disorders.

Bill Bolton wrote:

pamunkey wrote:

Sleep apnea is a very serious condition, and altering your prescribed therapy settings could reduce the effectiveness of your CPAP therapy.

You just bought back your whole rant with that!  

Whether you like it or not, for some users altering xPAP settings could be deadly!   Sleep disorded breathing (SDB) takes many forms, of which OSA is only one.  Also, other Sleep Disorders may accompany OSA.  Patient altering of their OSA treatment prescription may well have consequences in terms of concurrent sleep disorders.

Amen to that.

Daniel.


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The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

ON THE OTHER HAND, diabetics have been entrusted w/checking their own status at home and administering their own "therapy" as needed with the education, support. guidance and advice of their doctor.

There is no excuse for the Sleep Disordered Breathing patient not to be given similar education, support, guidance and advice from their sleep doctor.

The problem is the heightened awareness of OSA and too many in or associated w/the medical profession seeing sleep medicine as a "cash cow" sub-specialty wanting to milk all they can out of "sleep medicine" while they can. It requires little investment of time or money for this sleep medicine sub-specialty.

Most "sleep doctors" rely on the Durable Medical Equipment suppliers to provide the "education, support and guidance". For most DME supplier's xPAP therapy is a very small part of their DME business.

And too many DME's Respiratory Therapists, altho well-versed in oxygen equipment and education, don't have all that much experience or knowledge of the various brands and models of xPAPs and related equipment to provide that "education, support, guidance and advice" the "sleep doctors" are relying on them to provide. (And for which Medicare and insurances are paying them).


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

I've taken meds for a seizure disorder for 25 years now.  There have been times when I have had to make adjustments to my meds on my own. I was on a high dose of phenabarbatol once, I was walking around like a drunkard most of the time, and half my body would go numb. It was so bad that my supervisor , who had a drug problem in the past, told me I was worse than some of her druggie friends. This dose wasn't doing anything to reduce my seizures and my neorologist refused to adjust it. So I cut those little pills into quarters, and reduced by one quarter every 2 weeks until I was off of the stuff.  With no change in my seizure problem . There was another time when I was taking dilantin, and my husband and I wanted another baby. I asked my doctor about taking me off of it, and he told me " don't worry, if your baby comes out funny looking , just blame it on your husband. "  I took my self off of it, very slowly, and didn't go back to that doctor.  My son was still born with a birth defect, we don't know if the dilantin caused this or not, but it would have been a lot worse if I was on the drug while pregnant.  That said, I would never take more of a prescription than the doctor ordered. I know better than that. I also read the inserts that come with the meds.  You will notice many have a notice about certain side effects, sometimes you are told to continue the drug and see your doctor if you notice these, there are other times when you are told to quit taking the drug immediatly , then get to your doctor.  Cpap treatment is a prescription. If my doctor told me I needed a change in my prescription, I don't see why I need to take the machine to the dme so they can press two buttons and charge my insurance company . I'm able to do it myself.At the moment, I am having problems with daytime sleepiness, and my doctor doesn't want to change my prescription, he wants me to take provigil . I don't want to be on this for too long , it's not a good drug for people who are bi-polar.  So I'm monitering my AHI levals, and am trying to get out in the sunshine when I first wake up. If things get worse, I will talk to the doctor again and go from there. I don't plan on altering my cpap prescription on my own, I believe this doctor will work with me if I show him the data . But it I felt I had no other choice , I would do it in very small increments, using a bit of common sense.  Virginia


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Resmed elite , 17, mirage quattro ff . 25 + years of untreated OSA

This argument is non sequitur

Comparing OSA to Diabetes is not accurate for the following reasons.

#1 Diabetics have access to equipment that will gauge the effectiveness of their treatment

Vs

OSA has a few machines that try to measure events, and in all reality, they don't have enough sensors to determine anything other than a complete obstruction.

#2 Diabetics are trained how to use the equipment (this could be resolved if the other issues were resolved)

Vs

Someone on a OSA forum tells ya turn it up its only air


#3 Diabetics have the WHOLE picture of their treatment.  Blood sugar is one measurement.

Vs

OSA treatment effectiveness uses Sleep Studies to determine effectiveness.  Simply monitoring a single channel or two does not give you enough information to gauge effectiveness



Now the one point that I will give to this argument is that

#1 With Diabetes, mistreat your diabetes and you can get yourself in a mess


And with OSA Undertreat and you are in trouble, and over treat and you could cause centrals, and or lung problems.


Comparing years in medical school versus hours studying on the internet simply does not make anyone an expert.  

Unless of course you want to stay in a Holiday Inn Express and then adjust your pressure.  Cuz then you would be an expert...  

CrohnieToo wrote:

ON THE OTHER HAND, diabetics have been entrusted w/checking their own status at home and administering their own "therapy" as needed with the education, support. guidance and advice of their doctor.

There is no excuse for the Sleep Disordered Breathing patient not to be given similar education, support, guidance and advice from their sleep doctor.

The problem is the heightened awareness of OSA and too many in or associated w/the medical profession seeing sleep medicine as a "cash cow" sub-specialty wanting to milk all they can out of "sleep medicine" while they can. It requires little investment of time or money for this sleep medicine sub-specialty.

Most "sleep doctors" rely on the Durable Medical Equipment suppliers to provide the "education, support and guidance". For most DME supplier's xPAP therapy is a very small part of their DME business.

And too many DME's Respiratory Therapists, altho well-versed in oxygen equipment and education, don't have all that much experience or knowledge of the various brands and models of xPAPs and related equipment to provide that "education, support, guidance and advice" the "sleep doctors" are relying on them to provide. (And for which Medicare and insurances are paying them).

And I will continue to disagree w/you, Mike.

1] A fully data capable CPAP, especially if one has purchased the software and reader cable, IS equivalent to the equipment a diabetic is provided to measure their state.

2] Education is the key, I agree, and the sleep profession for the most part FAILS MISERABLY to provide that education to those w/OSA. IF OSA patients were properly educated as diabetics are there would be no need to ask on these forums how to or whether to change their therapy settings.

3] And I will disagree w/you that checking their blood levels gives diabetics the entire picture anymore than a fully data capapble CPAP w/software and cable reader give the entire picture to an OSA patient. BUT, either DOES give the patient the information they need INCLUDING HOW THEY FEEL, whether their therapy is working or they need further guidance from their doctor.

I RESENT being treated like an addlepated idiot when it comes to my medical care. Either I am kept properly and adequately educated and provided w/the necessary access to my medical data and the doctor and I work AS A TEAM or that doctor is HISTORY.

I suppose you are too young to remember when HEAVEN FORBID the patient should see what their blood pressure, temperature and heart rate were. There are still too many "educated idiots" in the medical profession still wallowing in the dark ages not willing to treat their patients as a partner in that patient's medical care. NO ONE has a more vested interest in their health and medical care than the PATIENT!

Perhaps if some of these "sleep medicine/profession groups" would spend more time and money educating the medical profession we'd all be a lot better off.

If a patient takes an interest in and wants to take an active part in their medical care they SHOULD BE ENCOURAGED AND EDUCATED to do so!


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

Hear! Hear! for those in favour of patients taking control IF they want to, with help from the medical community.  I spoke to my GP in October (2007) about feeling more fatigued than usual.  I have other health issues but he and I agreed we should check out the sleep apnea situation first.  I have been on cpap for 5+ years and have not had another sleep study in that time, nor have I seen a Sleep Specialist in that time.  He never suggested I return!  I was new at it then and just went along.
My appointment with the Specialist was finally set for Mar. 27 of this year.  That's 5 months wait!   I saw him and am scheduled for a sleep study on June 19 and to see him for a followup in August sometime.  This is riduculous.  I do feel I should have another sleep study, given the length of time since my last one, but I had to initiate all this and then wait for most of a year!
In January I bought my own data capable machine with smart card as well as the software and card reader.  I have been working with and learning from people on these online forums and have an auto range now that is making me feel better and my apneas and hypoapneas are much fewer.  I DO think I need to have a sleep study to see if any other sleep problems have developed.  I say again - I had to initiate all this.  Five plus years ago I was given a machine and left to my own devices.
 With my other medical issue, I am encouraged by my Specialist, to take an active role in my treatment.  I see her every 6 months.  This is how she deals with a chronic condition. It was she who set up the regular 6 month checkup.
I think it was summed up, very well,  by the previous post on the topic.  "If a person takes an interest in and wants to take an active part in their medical care they should be ENCOURAGED and EDUCATED to do so!"

Right on, Hawthorne! Good for you. AND a PERFECT example of the failure of the medical profession to take an interest in their sleep disorder patients!!!


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

If presented with facts to the contrary, would ya consider retracting the following statement, Mike?

Mike wrote:

OSA has a few machines that try to measure events, and in all reality, they don't have enough sensors to determine anything other than a complete obstruction.

According to U.S. patent 7,168,429 B2, Respironics can measure flow limitations, hypopneas, apneas, snores, variable breathing and large leaks.

Other patents on xPAP machines allow monitoring such functions as cardiac oscillations. A number of xPAP machines are capable of treating Cheyne-Stokes disorder.

Regards,
Bill

There is another issue that many don't consider.   Let's say a person is uninsured and living check to check.  Chances are they are not going to be able to have a sleep study and therefore not be able to get even a script for a CPAP or maybe they no longer have insurance after being diagnosed.

 If this same person is almost dying nightly during his sleep or daily while falling asleep at the wheel, I can see this person trying to find a cpap machine and tweaking until they are at least not snoring and hopefully feeling better.  Maybe saving not only their own life but mine if I am in the same traffic lane.  Maybe even keeping a job. (Unfortunately all jobs don't provide insurance or pay enough for an individual to acquire it themselves)

I realize that insurance makes it possible for me to keep running back and forth to a Dr. for them to dole out information as they want to but not to long ago I did not have insurance and yet did not qualify for welfare or free healthcare.  I was stuck and I could have died without treatment.   If I had acquired a machine in desperation on Craigslist and started on a minimal setting and worked up if necessary until I was at least not snoring I don't see how that is more dangerous than no treatment at all.

In a perfect world we all have insurance, we all have caring Dr's and we all have DME's that are ready and willing and knowledgeable.  In the real world some of us are broke, Dr's work for cash or insurance and many become desperate and willing to try almost anything to rest.

In this case sometimes you would have to take things into your own hands and work with what you have.  None of us wants to OD on CPAP but even those without money have to try every avenue before they just give up and nod off for good.


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DONNA - TEXAS

SOMETIMES YOU'RE THE WINDSHIELD, SOMETIMES YOU'RE THE BUG!

M Series Auto
Activa

AND, Medicare recently decided to implement a policy of allowing certain types of at home sleep studies AND reimbursement for CPAP for up to 12 weeks in an effort to reduce costs and reach more patients needing OSA Dx and Tx. Many insurances will begin to follow suit.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.

Been awhile since I've posted here...but Mike, you know I can't resist an opportunity to stick in the link that you (as Mikesus on the "other" message board) posted so long ago.  I still miss you over there.  You found so many goodies.  

"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
Link to a study that concluded, "yes."
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

I agree that if a person has certain complicating health issues, he/she doesn't need to start twirling dials without consulting his/her doctor.  But if it's plain old garden variety OSA, I agree with what that study concluded.

Yes, it's better to have a good doctor in the loop.  But if people have no insurance and really do have to go it alone, then best they dig into "the other" message board as well as this one,  learn as much as they can, and do what they can for themselves.

Hawkeye wrote:

If presented with facts to the contrary, would ya consider retracting the following statement, Mike?

Mike wrote:

OSA has a few machines that try to measure events, and in all reality, they don't have enough sensors to determine anything other than a complete obstruction.

According to U.S. patent 7,168,429 B2, Respironics can measure flow limitations, hypopneas, apneas, snores, variable breathing and large leaks.

Other patents on xPAP machines allow monitoring such functions as cardiac oscillations. A number of xPAP machines are capable of treating Cheyne-Stokes disorder.

Regards,
Bill

Bill,

there are a bunch of folks that have played with them including a few engineers, while the patents say that, the results show otherwise.  If you don't believe me, try dragging your hose on something, it will register as a snore or more sometimes.  (Derek did a lot of testing, and he is a smart guy)

You are looking at a single device (a flow sensor) where in a PSG you have multiple sensors.  Its just not the same.

Mike, NONE of us are saying that an autoPAP is every bit as good as a full PSG in a sleep lab. But neither are we so gullible as to buy into the "the sleep profession walks on water" horsepuckies either. The sleep profession is in a dismal state w/less than dedicated specialists in every area. Most likely the best of the lot are the RPSGTs once they have some experience under their belt.

The BEST option is to work w/a GOOD sleep doctor AS A TEAM.

But then there is reality. There aren't enough of them to go around and they are hard to find. Sometimes we "do what we gotta do".

The sleep profession needs to QUIT trying to keep patients in the dark ages! For crying out loud the national sleep organization, whatever its name is, actually condones and supports sleep labs not having a sleep doctor on staff who actually sees and talks to the patient!!!!! They actually condone some prima donna "sleep specialist" reading over the scored report, dictating his recommendations and sending them on to the referring doctor who doesn't know diddley-squat about sleep disorders and this prima donna is NOT AVAILABLE for consultation w/the patient AT ANY TIME!! That should be discouraged not condoned!!


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed's new VPAP Auto. Humidaire 3i, Simplicity & Micro mask, ResScan 3.4 software, SPO 7500 oximeter.