rested gal wrote:

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.

And the key to that study was patient education and monitoring.  I still have no issues with someone working with a doc and keeping em in the loop.  As a number of folks have found, just diddling with the pressure doesn't fix things and can be dangerous.  How is it dangerous?  Well if you think its pressure and its not, the real problem goes undiagnosed.  There are many heart and lung ailments that will make you tired.  With the fact that most OSA patients are already not in the best of health, its not a stretch to think they have multiple conditions.  (I seem to recall someone that was having an extremely rough go, and it turned out not to be hypopnea's as the machine was showing, but rather very severe reflux)  Pressure didn't help

Its simply reckless to suggest to someone just adjust your pressure it won't hurt you, because you don't know any of their underlying medical history.  Its akin to telling a diabetic to up their insulin without knowing what their blood sugar is.  

Its very easy and suggest anything over the internet, but in the end, the person getting the treatment or not, is the one who pays, not the well meaning folks on the net.  (gotta admit I got sucked into that myself)  But, we aren't talking cars, here, that if we make a mistake, we can just get a new one, or possibly fix the broken one, we are talking about people, and while someone is on a pressure change goose chase, they could be missing the serious condition that they could really have.



Last edited by Mike on Mon Apr 07, 2008 5:27 pm; edited 1 time in total

My 2 cents:  Everyone should be able to see the data in their machine and change it if they desire.   Should we also put governors on all motor vehicles so they don't go over the speed limit?  After all, if allowed, someone could really hurt themselves.

HooYah!  CrohnieToo makes some excellent points.  Teamwork with good docs is the way to go.  After the first two posts I was thinking that people were missing the point of the article.  A patient can just as easily go against medical advice and take his meds anyway he wants and we are okay with giving him that power.  But for some reason, CPAP is a sacred cow that just cannot be trusted to the patient.  

As I said in my original post, the article was cut-n-paste from another website.  I do have another reason why we should have access and that is that the manufacturers have already built it in for us.  I have a Resmed S8 Elite with a lot of features intended to aid therapy and ensure correct data is recorded.  These features include adjusting the machine to account for different hose lengths and mask types.  It also has some mild options such as setting the ramp and reminders that can be set for when to change filters and other parts.  All of these features are explained in the USER's manual.  But the only way for the patient to access these features is through the very same menu that gives them access to change pressures.  I have the machine mask setting for the nasal pillows I use.  When my head is congested, I change the machine mask setting to account for the full-face mask I use.  If I don't make these adjustments, then the data that the machine records is skewed for that time period.  Am I supposed to drive 60 minutes to have my DME change the mask setting every time my head is congested and then go back when my head is fine?  Sorry, but if I am going to pay for the machine, I want access to these features and if that means I have access to the pressure settings, so be it.

Quote:

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".

In a sense this is the exact message that is being given (that a data capable machine gives out as much info as available in a lab).

Next, where I come from 'he/she who pays the piper, calls the tune'. I really get so cheesed off reading posts here where sufferers didn't sit down and go through reports with their sleep doctor. Stories like 'the doctor was in a rush', really don't wash. If doctors' get away with this type of service........well...'monkey see, monkey do'.

I agree......work as a team, but every team has to have a captain..........and where MY health is concerned I AM THE CAPTAIN.

Quote:

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!!

And why not condone it............there are plenty of suckers out there who will accept second rate service......just sign the insurance form, bend over and let them sc**w you every which way.

I have had a good life, am pretty happy with my lot..........BUT one thing I have found, there are numerous people out there just looking for a chance to sc**w you..........whether they have white coats, armani suits, boiler suits, brass name plates or whatever...........and finally if you want to stop the house from flooding, turn the water off at the mains.

This is my one and only contribution to this thread.............and I won't be revisiting it.

If you are all honest with one another, you know where the answer to the problem lies.

Daniel.


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

(Anon)

Mike wrote:

And the key to that study was patient education and monitoring.

Which a person of average intelligence can most certainly get on the internet if they have the sense to sift through posts and decide what seems like reasonable advice and what seems off-the-wall.  In other words, using their brains to make the same kinds of decisions they make in life.

Mike wrote:

(I seem to recall someone that was having an extremely rough go, and it turned out not to be hypopnea's as the machine was showing, but rather very severe reflux)

And where did he finally find help?  On that internet message board.  You were one of the ones, in fact, who suggested what might be happening to him.   I seriously doubt that any doctor he could have gone to, even sleep specialists, would have ever zeroed in, the way you and -SWS did, on what was causing loonlvr's xpap treatment problems.   For one thing, most doctors would never have bothered looking at his detailed data reports.  You know how so many of them scoff at "meaningless" data from xpap machines.  And if they had looked at loonlvr's downloaded reports, I still doubt that many doctors would have made the acid reflux connection that was driving his pressure up and up to no avail.

Mike wrote:

But, we aren't talking cars, here, that if we make a mistake, we can just get a new one, or possibly fix the broken one, we are talking about people, and while someone is on a pressure change goose chase, they could be missing the serious condition that they could really have.

Speaking of cars, while people are waiting and waiting and waiting for their busy doctors to figure out how to adjust their treatment, those car drivers are out on the road...fighting (sometimes successfully, sometimes not) to stay awake and stay in their own lane.

There are millions of people in the U.S. who don't have any medical insurance at all and cannot afford to go see a doctor, much less get a sleep study.   If getting a cheap cpap and trying to set a pressure on their own, makes them feel better -- actually helps them -- helps them not get fired from a job because they fall asleep -- helps them not have a car wreck that kills or injures them or someone else -- helps their body cope with or even heal other medical conditions (for example, high blood pressure) -- I say, go for it.

It's better than doing nothing.  Those people can't go to a doctor.  Nor can they go from doctor to doctor until they find a GOOD one.  Which (of course) reminds me of another great link you posted years ago.     (You knew this one was coming, too.

Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004 - "Not Every Patient Needs to Go to the Sleep Lab" - Dr. Barbara Phillips (board certified in Pulmonology and Sleep.)

Yes, Dr. Phillips was talking about doctors using their clinical judgment to go on and prescribe cpap without a sleep study, when their patients had obvious symptoms of Obstructive Sleep Apnea.  And presumably the person's family doctor would know what other health conditions their patients have, including the few things listed in the cpap manufacturers' machine manuals as contraindicating using cpap at all.  She's also been known to say words to the effect, "Some people have OSA so obviously, even the janitor at a sleep lab could diagnose them."  

Whether it's a general practitioner family doctor using his/her clinical judgment and prescribing "cpap", or a reasonably intelligent layperson who educates (yep..on the internet *gasp* ) himself/herself about OSA and self-treating with cpap,  the odds are good that the treatment will not hurt them.  And very likely could help them.  Each one who gets help, or helps himself/herself, including tweaking their own continous positive air pressure treatment,  is one less drowsy driver out there.

Give 'em all "cpap @ 10 cm H2O", I say.      Even if it undertreats,  it's better than NOTHING.  And even if it overtreats, that pressure is very unlikely to hurt them.   Sure, it could.  But so could that next trip down the highway when they're rolling the window down, turning the radio up, and fighting those closing eyelids.   Better to turn the pressure up than the radio.

Just my thoughts.  However, I'm not a doctor.

Even if there are valid reasons for restricting access to the pressure settings on the machine, I don't see any reason to disable the display of data to the user. The Respironics M Series Pro and Auto, for example, have an option in the provider setup to display or not display AHI and leak data. What harm is there in showing those numbers? At least Respironics has released a read-only "patient" version of their software so anyone with a data capable machine can read the data themselves ... even if it won't show on the display.

Also, why should I take time off of work so I can take my machine to the DME and let them press a few buttons that I could press myself? I started out with my machine setup as an auto, but once I got my sleep study results and my prescribed pressure, I set it to that pressure myself. It is set to my prescribed pressure, and I didn't have to take time off work or use a few gallons of gas to do it.


_________________
Respironics Auto M Series, Pressure: 12 cm
Fisher & Paykel Opus 360 Nasal Pillows
My Sleep Blog

I have never seen a sleep doctor. My insurance doesn't think it is needed. They think a regular MD can handle OSA and cpap. My MD told me to learn all I could on the internet because he didn't have time to learn about cpap, so I did. This same doctor has since been diagnosed with OSA and put on cpap. After seeing my encore pro charts, and how well I'm doing on my own(with help from another forum)...He has asked me to help him tweak his cpap therapy. If my DOCTOR sees no problem with me doing this for myself (and now for him), I don't know why you, Mike, should have such a problem with it.
 My doctor belongs to a large medical group and has shown the other MDs my charts and told my story of success with cpap. They are all impressed and see no problem with this at all. Many have told me that they wish other patients were so involved with treatment, and willing to titrate themselves.
 I see my MD once a year for a physical, unless I have a problem, but other than showing him my charts once a year he has nothing to do with my cpap treatment...and I like it that way! Would it be best to have a caring, knowledgable sleep doctor? Probably. But it isn't the only way and it shouldn't be the only way.

rested gal wrote:

Give 'em all "cpap @ 10 cm H2O", I say.      Even if it undertreats,  it's better than NOTHING.  And even if it overtreats, that pressure is very unlikely to hurt them.   Sure, it could.  But so could that next trip down the highway when they're rolling the window down, turning the radio up, and fighting those closing eyelids.   Better to turn the pressure up than the radio.

Just my thoughts.  However, I'm not a doctor.

If it undertreats, or doesn't treat at all, that is a problem, chasing a problem that doesn't exist when a problem that does exist might be readily found IF the patient is working with their doc.  

And if it overtreats, you are right, most folks won't get hurt, but for the ones that will, the ones that have severe centrals, and even worse the ones that *could* have lung problems the radio might be a better option, or better yet, find out what a GOOD doc says.  

I still don't buy the argument that "I can't find a good doc, so I am going to play one"  

I completely advocate taking charge of your therapy.  Don't like the doc?  Fire em, and find a good one.  The doc is too far away?  Get in the car, get on an airplane, but go!  I recently had to have a heart cath, and fired the original doc, why?  Because he was not giving the attention that I thought he needed to, to my case.  But I can tell you because I had a lousy doc, I didn't go and read up on doing heart cath's and do it myself because he was a horrible doc, I found a better doc, about 40 miles away by ambulance ride.  But to make a blanket statement that says, "its safe to just play with your pressure till you feel right, or the graphs look good" does NOT fit everyone, and for an organization that is dedicated to reducing injury that is caused by sleep apnea, we can't go and change that to causing injury by improper treatment.  By all means, if you think you are not getting good therapy, it NEEDS to be dealt with.  work with your doc, sleep lab, resp tech, whomever, and if you aren't getting the service from them that you expect, need or want, then FIRE THEM and get someone else!  

If this was a forum sponsored by an entity that sold machines, then you would probably see advice telling you to do whatever you want and to buy as many as you need, cuz its "Just Air" as our friend from Resmed likes to say.  What he always neglects to say is that he will make a buck for each one.  And in the meantime while you are playing Marcus Welby, you might be missing something that a real doc would catch.  

And Yes I helped Loonlover because he was asking for opinions, and I still advocated getting checked out.  He still should if he hasn't.  Without an endoscopy, he could have reduced the acid to the point that it isn't causing VCD, but still could leave him with Barrett's esophagus which can turn cancerous.  

And to go back to the car analogy, just because you turned up the radio so you don't hear the exhaust, does not mean that the exhaust is fixed.  

There are just too many medical conditions that can hide behind the symptom of "ineffective treatment" to make blanket statements. Now, if you said after they were screened for underlying conditions, then I might agree, but until there is certainty that there isn't something else going on, its just not wise.

If you are looking for the self treatment forum, this is not it.  Out of all of the forums there is only one that suggest that on a regular basis and that is cpaptalk.  If that is the route that you want to take, that is completely up to you, but we do not advocate the do it yourself mentality for the reasons mentioned before.  If you feel that you must do it yourself, then by all means look for help on that forum.  The idea is for folks to get EFFECTIVE treatment, Whatever method they choose.

Mike wrote:

... But to make a blanket statement that says, "its safe to just play with your pressure till you feel right, or the graphs look good" does NOT fit everyone, and for an organization that is dedicated to reducing injury that is caused by sleep apnea, we can't go and change that to causing injury by improper treatment. By all means, if you think you are not getting good therapy, it NEEDS to be dealt with.  work with your doc, sleep lab, resp tech, whomever, and if you aren't getting the service from them that you expect, need or want, then FIRE THEM and get someone else! ....  There are just too many medical conditions that can hide behind the symptom of "ineffective treatment" to make blanket statements. Now, if you said after they were screened for underlying conditions, then I might agree, but until there is certainty that there isn't something else going on, its just not wise. ... The idea is for folks to get EFFECTIVE treatment, Whatever method they choose.

There, Mike, I think your above statements clarify your position and ASAA's. And I won't argue w/those policies. I understand the need for them. What pushes my buttons is not giving us access to our own data, not recognizing us as a member of our own healthcare team, not providing us w/the education, support, and advice needed to make informed decisions regarding our own health care, DME suppliers less than truthful about equipment and insurance benefits, pawning off less the fully data capable CPAPs on unsuspecting, trusting clients and sleep labs and "sleep doctors" not providing adequate information regarding study and titration results and what they mean to us and our health.


_________________
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 VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I believe Mike has very eloquently stated the case why we, here at the Forum and the ASAA, strongly discourage patients from adjusting the pressure on their PAP devices.

Having access to the data so a patient can monitor their treatment is important and my hope is that all devices in the future will data-accessible.

That said... this discussion is closed.  Thank you to all that participated, your contributions are valuable to the many thousands who read these posts here in the United States and around the world.

Edward Grandi


_________________
Executive Director
American Sleep Apnea Association
6856 Eastern Avenue, NW Ste. 203
Washington, DC 20012
202-293-3650