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[Pressure] You CAN Adjust your own CPAP Pressure
#71
(10-01-2015, 09:03 PM)zonk Wrote:
(10-01-2015, 07:38 PM)Toby6698 Wrote: It's not something to play around with or tell somebody that it is ok to do.
With my machine "AirSense 10 AutoSet", no need to play around, the machine play all by itself, automatically adjust pressure on breath breath basis all night long. Normally, doctors, uses the 95th percentile pressure of the AutoSet to set fixed pressure machines

Yes, the S10 is a very nice machine. I hope that is working well for you.
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#72
Toby, welcome. Please stay around and help.

You're getting better, but slow down and use shorter paragraphs. You're still too hard to read.

Unfortunately, the current big box style assembly line medicine system is failing apnea patients.

1) See a doctor. ***CaChing*** on the cash register.
2) Get a $leep $tudy ***CaChing*** Don't bother with a split night study.
3) Run a poorly done sleep study. Noisy environment. Start the test at 7 PM for someone who's probably not sleeping well and going to bed late. Make him lie on his back when he can't sleep on his back at home.
4) Don't provide a sleep aid to the patient in case he can't sleep.
5) Get a poor, invalid, or even a failed test for many patients because they didn't sleep well. ***CaChing*** anyway.
6) Consult with a $leep $specialist ***CaChing***
7) Have an unnecessary titration study ***CaChing*** when you could have done a split night study.
8) Have another appointment with the first doctor who doesn't really know anything about apnea or CPAP. ***CaChing*** BTW, a lot of the so called sleep specialists are really clueless about CPAP machines and what they can do.
9) Get a DME who may well screw the patient with a brick CPAP machine that doesn't record full data. ***CaChing***
10) Dispense a full face mask because the DME is too lazy to try to find the right mask.
11) Bill separately for machine and humidifier, mask and headgear, hose, etc. All at way above cost. ***CaChing*** ***CaChing*** ***CaChing***
12) DME monitors the data. Even though the good machines record data nearly as good as a sleep test, in the patient's home, of his actual therapy, just check the compliance numbers and base all the therapy on that.
13) If the patient has problems, come in for an appointment with the doctor who has no idea how to adjust machines or read the data collected by the machine. ***CaChing*** Denigrate the patient, only look at $leep $tudy data.
14) If the patient doesn't back down like a good little sheep, send him in for another in lab $leep $tudy, instead of looking at his in-home therapy data. ***CaChing*** ***CaChing***

The current assembly line medical system is causing a lot of patients to quit CPAP. Lots of these people lose years of their lives because they were screwed by the system. There's almost no one who goes though the apnea/CPAP process who doesn't feel violated. Most of them get a very poor standard of care.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#73
There is a big difference between the ideal standard of medical care and what actually happens, as kaiasgram’s post shows. Some people come to Apnea Board looking for quick answers, but many others come here because the system failed them in some way. Well-meaning health care professionals sometimes come here wearing rose-colored glasses, believing that the system always works the way it should, especially if they come from a practice where things actually work properly.

I ended up self-titrating my pressure out of a combination of my own denial about sleep apnea and the inexcusably poor customer service standards of the health care industry. My boss told me to get a sleep study because I was falling asleep on the job, and I was having dental problems at the same time. I put off getting the sleep study for a year, until I was past the point of no return. I caught a sore throat when I had an abscessed tooth pulled. I had a difficult recovery that pushed me over the edge, to where I was so exhausted that I could not continue working. Even a 3-week FMLA leave was not enough to allow me to recover.

I was prescribed an auto trial after my diagnostic study, which was covered by insurance. Because of unreasonable delays in the health care system, I had to go out of pocket to buy a machine on Craigslist. That sent me down the rabbit hole of self-treatment. I got my machine a full month later than I expected, although it would have taken a few more weeks or another month if I had obtained it from a DME. My sleep doctor dropped me as a patient during my 3-month follow-up consultation when I told him I searched the internet to find the instructions to do my own set-up. I started with a prescribed pressure range of 6-16, and later changed it to 10-16 after talking to the sleep doctor’s PA. Strangely, the PA was unconcerned that I knew how to set my own pressure despite my doctor’s disapproval.

I am presently using a pressure range of 14-20. It has been a fantastic success with a 90% pressure of 17 and an AHI of 0.2, but getting there was a long, hard journey. I’ve found that titrating my own pressure has taken more skill than most people would have patience for, but far less skill needed and far less danger than learning to drive a car.

I find it inexcusable that the health care industry can make patients wait weeks or months to schedule a sleep study, and more weeks or months to get set up with a machine, as if CPAP therapy is unimportant. Then, self-treatment is forbidden because it’s considered too risky. That’s having your cake and eating it, too. The delays cancel out much of the benefit of doing it by the numbers. You can get most car repairs done in a day on a walk-in basis, and I’ve never had a car repair take longer than a week. Are car repairs more important than health care?

With my 90% pressure of 17, I may need to switch to a bilevel machine at some time in the future. I see three risks of going through the system for this: First, I may have to wait until I fail CPAP for this, which may mean using a pressure of 20 with an AHI > 5, for yet another delay. Second, a doctor may prescribe a bilevel sooner than needed based on my 17 pressure, causing an unnecessary expense. Third, the doctor may prescribe a lower pressure, suspecting centrals without looking out at my detailed data. (I do not have centrals.) Therefore, it’s inevitable that I’ll be looking for a private sale if I need to switch to bilevel. Not to mention, it may be difficult to find a doctor willing to work with someone who has been using self-treatment. It looks like I’m stuck in the rabbit hole.
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#74
(10-01-2015, 08:31 PM)kaiasgram Wrote:
(10-01-2015, 08:12 PM)eseedhouse Wrote: Well I totally disagree, along with, I suppose, many users of this board. And my Dr. and my Respiratory therapist agree with me.

As to your arguments, I might have gotten around to reading them if you'd thrown in the odd paragraph break. But my eyes and mind are no longer up to reading a thousand or so words all smushed together in one long line.

Lol, well then you missed the part where about halfway through the rant he revealed that he works for a DME. Wink

This happens periodically on all the sleep apnea forums. An RT or DME rep feels slighted or threatened by the idea of a competent person learning how and when to make adjustments to keep their therapy on track. They come onto the forum with a longwinded rant trying to whip up hysteria with the claims of illegality, lethal pressure changes, etc. What's laughable is that many of them hand out bricks to patients so in reality they have nothing more to base pressure changes on than do the patients themselves.

No one advocates for blind dial-spinning. But any reasonably intelligent and motivated person can learn how to responsibly manage their own CPAP therapy.


I apologize if my writing skills were not up to par for you, and yes it would've been much easier for you and others to read, had I broken it up into paragraphs. The fact that I work for a DME company has nothing at all to do with my reasons for posting what I did. Most of my income is obtained from working in a hospital, and I receive no pay or compensation on this job from CPAP or Sleep Study driven revenue.

I realize that DME companies and sleep labs make a lot of money by diagnostic studies and equipment used to treat OSA, and I often get discouraged when money making decisions get in the way of providing patient care. Most medical professionals, including myself, are in the business because we care about people and their health, and luckily, we are able to make a living doing something that we enjoy. Many of us really care and will often buck corporate leaders, in an effort to keep the actual patient care first, before the almighty dollar. But we don't make or enforce the rules, and like most, we have to perform our jobs as we are told or we would lose them.

Not everyone who posts against forums like this are doing it to protect their jobs as much as they are trying to make people aware of the very real potential dangers and risks that can be involved with manipulating pressures on pap machines. Even in a hospital setting, patients are not put on PAP machines unless they are monitored during initial and changing pressure settings.

I am not saying that the people using the machines, without a medical background, are stupid or incapable of participating in their own care. I am all for the pro active patient. I am one myself, with my own health issues.

Not everyone who reads these forums have educated themselves enough to really know what they are doing and do not have a full understanding of other problems they could be creating within their bodies when they start adjusting pressures without cardiac, EEG and pulse oximetry monitoring. I have been witness to some pretty serious issues, even deaths, that were due to improper pap adjustments.

On this forum, even though medical advice is often recommended, I have also read several incorrect statements being given as "educated advice" on adjusting or setting pressures. I read one, in particular, where someone asks how to set a BIPAP to their CPAP prescription and the advice given to them was completely incorrect, and not just in a minor sorta way.

If that person followed that advice, they would be receiving a much lower exp pressures (which is the CPAP portion of a BIPAP) than what had been prescribed by the doctor and then receiving a much too high inspiratory pressure, that wasn't even prescribed at all for the person. I feel sure the advice was probably followed, and if so, their obstructions were probably not treated effectively due to too low of an exp pressure and the potential for pressure induced central apneas would have been fairly high. The machine being discussed, was also not current enough to provide the data needed to see if these problems were actually occurring or if treatment was even effective enough. It was obvious from their responses, that the person asking for the advice, had placed a lot of trust and faith in the very incorrect advice they were given in setting this machine according to their needs prescribed by their medical doctor.

While many have been very proactive in learning about their sleep disorders, what AHI's are, how to monitor their sleep reports along with the changes and who will also stay in communication with their Dr, not everyone who reads the posts or advice given on this site will know the first thing about any of it and can really hurt themselves with getting machines and trying to set them on their own.

Medical professionals are concerned about safety and the very "real" dangers, that, those who have never seen occur, do not believe exists, but they definitely do. So treat yourself if you wish, but be careful and don't bash those who warn against the dangers of it, and use caution when educating the entire public that it is ok to do this on their own, because it is not for everyone to be doing.

Just because you have never witnessed a person having a heart attack, CO2 induced coma, cardiac arrhythmias and other issues caused by incorrect pressures, including death, doesn't mean it's not real and doesn't happen. These issues happen more frequently than you know, especially if you are not around the CPAP life and hundreds of different users on a regular basis. Any of those who have warned against doing this, are probably doing so because they have seen it happen 1st hand, not because they are ranting or worried about losing money over it.....a very critical judgment.

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#75
""Not everyone who reads these forums have educated themselves enough to really know what they are doing and do not have a full understanding of other problems they could be creating within their bodies when they start adjusting pressures without cardiac, EEG and pulse oximetry monitoring. I have been witness to some pretty serious issues, even deaths, that were due to improper pap adjustments.""

Toby,

I am not sure what your point is. Should we shut down the forums because people took it upon themselves to read internet advice without knowing what they were doing? Alot of internet boards would be shut down on that basis which of course would be absurd since it is the responsibility of readers to not do stupid things.

So how many deaths, serious injuries were actually due to improper cpap adjustments did you witness? And how do you know there weren't other mitigating circumstances that had nothing to do with improper pap adjustments by the person.

If you're going to go this route, you also have to recognize all the people who were badly served by your colleagues who finally got their therapy on track thanks to the self help apnea forums. Examples of bad service - Being set up with a wide open auto range from 4-20. Horrible fitting masks. Oh this is my favorite - Many of your colleagues incorrectly telling patients that nasal pillows don't work well above pressures of 12 so people struggling with mask issues at above those pressure never try a mask that might save their therapy. Sleep med physicians telling me that due to being petite that I am on way too high of a pressure and I only need a small amount. This is before they review my data showing my AHI index is constantly below 1. Former sleep medicine physician constantly minimizing my situation because my AHI was 5.9, overlooking the fact I had an RDI of 23.

I rest my case.Smile
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#76
Toby,

I did want to make another point. Let's say, I post to this board asking for help and my data shows I have a 10 AHI and feel horrible. Don't think this is an uncommon situation.

So how I am I causing risk to myself by changing my pressure slowly with the board's help in monitoring my data providing it consists of hypopneas/apneas and not centrals which is a whole other issue? Without doing anything, it seems I am likely causing more harm. Sure it would be great if I worked with my doctor and or the DME but then there is reality as people have pointed out in various posts.

I agree with you that someone blindly changing their pressure from 7 to 20 would be putting themselves at risk. But as we have pointed out, we discourage that which you seem to be overlooking.

Your comments would be appreciated.
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#77
I have found the advise given here to be most helpful. It is never given blindly. If we are seeking help, the advisors ask for the needed information on which to base ther advise.
*machine
*settings
*mask...and so on...
Of course a screen shot is even best of an actual night of sleep is great. It shows what the advise seeker cannot put in words.

My sleep treatment improved in many ways. I have never been told 'just do it.' If I changed pressures, I was told to do it slowly over time. Best of all was knowing I could come to a forum such as this and 'let out my frustrations.'

I also know...if anyone is unsure, they say so...asking for more info.
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#78
It's all about the money and liability. If I hire a company to cut my grass, they are required to have liability, worker comp, licensed, regulated. In case his mower fails and sends a blade sailing through my window and kills my cat, I have recourse. There is no law that says I can't take a lawnmower and cut my own grass and if it fails and kills my cat, I won't go to jail nor would I have broken any law.

As Supersleeper said, show us the law where it says we can't change our own pressure or anything on the machine or even stop using it altogether. As a RT or a DME you have to be licensed, you have to be insured, you are regulated so *you* can't change pressures without a doctor's script but I sure as heck can.

Taking down the man - one 1cm h2o at a time.


Using FlashAir W-03 SD card in machine. Access through wifi with FlashPAP or Sleep Master utilities.

I wanted to learn Binary so I enrolled in Binary 101. I seemed to have missed the first four courses. Big Grinnie

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#79
(10-02-2015, 04:41 AM)49er Wrote: ""Not everyone who reads these forums have educated themselves........... RDI of 23.

I rest my case.Smile

Interesting read. Just read all 8 pages.

Couldn't find this in a search. What is RDI?
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#80
(10-02-2015, 08:03 AM)cate1898 Wrote: Couldn't find this in a search. What is RDI?


http://www.apneaboard.com/wiki/index.php..._%28RDI%29

Coffee
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.



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