[Pressure] Danger Involved - Changing your own CPAP pressures

[SuperSleeper]

[Note: parts of this thread were copied over from our old forum (thread started in May, 2009); some posts have not been included for the sake of brevity, and some posts have been cleaned up for clarity, accuracy & updated info]

I am a Respiratory Therapist who works in the home care field. Prior to working here I worked in a sleep disorder lab. When I stumbled across this site I was shocked. I saw the article at the begining that states with such bravado that there is no law that states you cannot change the pressure on your own CPAP machine. You are correct to a point. The law of common sense would tell you not to manipulate the pressures when you are completely unaware of the consequences. Hell you can go buy a gun and stick the barrel in your mouth, I don't suggest you try that but it can bring about the same results. The pressures are set by the Physician to the optimum level to alleviate the apneic events. Elevating them too high and you can cause more apneic events or possibly reduce flow of blood to the brain. These machines are medical devices not toys, so the author who compared them to a leaf blower is showing just how little his understanding is of these systems. I would strongly suggest any person who feels they do not get enough relief from their CPAP unit to consult their physician or homecare provider. Otherwise feel free to follow the advice of the collectively ignorant and take your own life or well being into your own hands.

[SuperSleeper]

Hi, allow me to respond on behalf of the "collectively ignorant..."

If you care to read all the posts on this subject (apparently you did not), you will note that we have discussed ad nauseam most aspects of adjusting one's own CPAP pressure. All the warnings you state in your post have been stated by myself and other Apnea Board members, including the advice to consult with your doctor prior to adjusting your own pressure.

As one example, please read my reply to a member in this thread:
http://www.apneaboard.com/forums/Thread-...-old-forum

Or read our discussion in this thread:
http://www.apneaboard.com/forums/Thread-...P-Pressure

Believe it or not, most of us actually do have an IQ a bit higher than 50, and we realize what we are doing and the risks involved. You state this "shocks" you; how could "ignorant" people assert with such "bravado" that we have a right to tread upon the sacred temple that only licensed physicians, home care providers or therapists dare to step foot? Oh my, the shear pretension of suggesting such a thing! :o

Welcome to Apnea Board, where we don't bow down and worship doctors and therapists. We use their advice and expertise, but we keep all things in perspective and, believe it or not, use our own common sense as well. We have a strong belief that the patient is best served by educating themselves in order to play an active part in their own Sleep Apnea treatment.

[SuperSleeper]

In your response you show that you are truly not ignorant of the possiblity of harm coming from incorrectly changing pressures on a CPAP unit, however, if you are the original poster in this case, there is no discussion of consulting anyone. Just an arrogant person daring professionals to find laws that prohibit the information given within. I agree there are no laws the forbid individuals from being stupid. In your case I understand there are persons of signifigant intelligance that use CPAP and are more than capable of changing settings but it should always be done under a physicians care which I believe you understand. There are individuals however that will read that particular post and go away with the assumption it is ok to just change their pressures to whatever they feel is needed.
The thing that shocked me was the arrogance in which the original post was written. I meant no depriciation towards anyone, if that is the way it read, I apologize. I only wanted to make a point to individuals who might think it was ok to just go change pressures to check with a physician prior to doing it seeing how it is very dangerous to mess with settings on a medical device. I also believe that patients that are active in their therapy are patients that will recieve the most benefit from their therapy. One must however realize I am not asking for anyone to bow down to me and my superior knowledge and to imply that is just rude. I am simply saying when you have questions and problems with an ailment you are best served consulting a professional that has training and a deeper understanding as to what makes certain things work the way they do. I would not go to a financial consultant to ask how to change the oil in a car. I understand that knowledge and self educating to ones disease is very important, but in order to get educated perhaps talking with physicians, therapist and speacialist is not such a bad place to start. You seem very bitter and for that I am sorry but I am not trying to talk down just talk to you about an issue I feel so passionate about that I have dedicated my life to the treatment of those afflicted with these disorders. I hope you are well and blessed and I pray you recieve the treament that makes you better no matter what you feel towards me and my beliefs.

[SuperSleeper]

Also I am sorry to bring up an issue which you have discussed so earnestly but I am new to the site and thought this site was where one could speak their minds and try to give information they feel is pertinent to the treatment of sleep disorders. I will try to be more current if I am allowed to stay as a member.

[SuperSleeper]

Hey, you're welcome here, you don't have to agree with me in order to be a member of Apnea Board. It is a discussion board, after all!

Perhaps you should note the degree of sarcasm in that original post. It was not suggested that people actually use their CPAP for a leaf-blower... that illustration was given to show the absurdity of not allowing the owners of a machine (which they paid for) to make adjustments to that machine.

Neither did anyone say that people should not consult with a doctor if they have the financial ability to do so... again, you appear to have not read the entire post, which said:

"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."

I'm agreeing with most everything you said with regard to getting a doctor's help prior to adjusting the pressure yourself if at all possible.

I'm not sure I fully understand your objections...

If you're simply objecting to the "arrogance" of the post - please understand that for years and years, many Sleep Apnea sufferers have been scolded by medical professionals and talked down to, and even insulted by warnings that "only I, as a licensed medical professional can adjust the machine that you paid for with your own money", suggesting that even small adjustments could kill a person. We've been told that it's illegal to do so, which is just not true.

Some of us are quite simply fed-up with implied suggestions that we're too stupid to educate ourselves on any medical subject. It's really a threat to the medical professional's livelihood - if we can treat ourselves to a greater degree, we don't need to pay them to do it.

Sorry, but there is no evidence that making very small, incremental and scientifically-analyzed adjustments to one's initially-prescribed CPAP pressure will kill a person. If you have solid, empirical evidence to support such an absurdity, please post a link to the evidence. Making large, sudden changes can cause harm, I agree - and I have stated so in many posts here.

[SuperSleeper]

It is not going to hurt my job one way or another if you "self treat" yourself as it is nearly impossible to obtain a CPAP unit without a prescription. I really have a problem with the fact that it should be in bold lettering at the top of the page that this is for informational purposes only. As I stated before, I believe you and others are more than capable of monitoring and manipulating your therapy under a physician's care without the need of therapists and techs at the point you are home with your unit. There are some individuals I have helped that really did not fully grasp what the treatment was really doing and it is for those individuals that may happen across your site and gain information as to how to manipulate pressures that I am simply warning that there may be consequences. In any case, if a machine feels like it is not meeting your needs changing the pressure should be the last thing done. Perhaps the machine is malfunctioning and needs to be checked. I agree completely that small changes are not going to affect most individuals however patients with conditions such as hypertension or other cardiac disorders should really be careful. Once again I feel perhaps I am covering ground you may have already gone over, just to say that I really do care if persons receive the best care and that I am in no way shape or form an elitist.

[SuperSleeper]

I'm not sure what purpose putting "for informational purposes only" at the top of the web page or post would accomplish. That would not be accurate, as it's not for informational purposes only - it is specific directions for CPAP users to make small, incremental and scientifically-analyzed adjustments to their machine.

Your concerns that some individuals may not fully grasp what the treatment is doing is valid. I'm assuming that if a person has the ability to read, the ability to use a computer, navigate the Internet, find this discussion board and comprehend the post enough to actually make pressure adjustments to their own machine... well then, they probably have the ability to read the advice and warnings we have given along with the information, and act accordingly.

If they not competent enough to navigate the Web, then, yeah, I suppose they might not be able to grasp the risks involved. But then again, if they can't navigate the Web, they can't get here and read how to make pressure changes anyway.

We've already given a warning on the web page:

http://www.apneaboard.com/CPAP%20Adjustment.htm

It's written there in ALL CAPS and IN RED, including the statement "ALWAYS SEEK THE ADVICE OF A QUALIFIED PHYSICIAN BEFORE CHANGING PRESSURE ON ANY MEDICAL DEVICE, INCLUDING CPAP MACHINES."

This is in addition to the section (on the web page and the forum post) that states, "talk with your physician or sleep therapist before making any changes to your CPAP therapy."

Some have suggested that I should take the pressure change information off the web site entirely since someone may use the information incorrectly and do themselves harm.

Over 40,000 people die in car accidents each and every year in the U.S., but you don't see people suggesting that automobile maintenance manuals should be banned from the public, since only "trained, qualified, or certified" auto repair people can safely do basic car maintenance, do you? Neither do you see a warning on the front cover of an auto repair manual saying "for informational purposes only".

You are correct, if someone's therapy is not working, there may be other issues involved other than the pressure setting. That's why this forum is here also, so we can help one another during our CPAP treatment. Does that negate the need for professional help at times? No, of course not.

Am I to deprive the vast majority of intelligent CPAP users of the information listed here, simply because a handful of foolish people may choose to ignore the warnings and may harm themselves? That would be like banning kitchen knives because a handful of foolish people may use the device incorrectly and end up hurting themselves.

As I said in previous posts, I'm for individual freedoms, along with individual responsibility. Your warnings (as the ones that I and others have given here) have validity and should be included when handing out this information.

Our willingness to give Sleep Apnea patients information previously reserved to the "professionals" and our refusal to allow medical commercialism to control forum operations is what makes Apnea Board unique. As a group, doctors, sleep therapists, sleep centers, DMEs and CPAP manufactures have a vested financial interest in keeping CPAP users in the dark with regard to the full functionality of the machine. Yes, the vast majority of them are sincere, honest people who, like you, want only to help the patient. But withholding critical information from intelligent patients simply because you do not want them to hurt themselves is not doing them service. Give them the information and let them make the decision themselves - do not make the decision for them.

[SuperSleeper]

You bring up good points but I have to contend with the automobile reference. The routine maintenance explained in the manuals with vehicles only covers a small portion of what maintenance a car will need. I don't care how much explaination you give me I would never try to work on the brakes of a vehicle I am going to drive. Likewise, the manufacturers of these medical devices make two copies of the manuals. One is an owners manual the other is a providers manual. I am not saying anyone is too dumb to read or any other such thing, just that if the manufacturer sees that there is a need to have select information concealed for the benefit of patient safety then it should be warranted and I believe having read through all the posts and links you are diligent in noting the warnings. Also I would never suggest you deprive anyone of information. I believe this to be a good thing and the way you are presenting yourself is admirable and I wish you continued success in helping others in a like situation.

[SuperSleeper]

Thank you SuperSleeper. I was beginning to despair that the organized medical "machine" had squashed all hope of me finding out how to get to at least view the "clinical" menus.

I especially like the way you have written in this thread. It was like reading my thoughts exactly.

A note to RespiratoryChip: I have worked on my car's brakes on all my vehicles for 37 years. They work perfect every time.

[SuperSleeper]

The PA, after 3 ($6000/each) sleep lab tests, AND, me calling him over the holiday because my vpap didnt feel like it was giving me adequate pressure, FINALLY told me over the phone how to adjust my machine. OMG! It was like getting the keys to a car after I got my driver's license! He had me at 14 inhale pressure and 7 counter/exhale pressure. After spending a couple hours testing up and down, I discovered my optimum intake was more along the lines of 17! (Yes, i adjust it every couple days depending on how I sleep the night before!) I immediately started feelilng the benefits they (the docs) said I'd get initially, but didn't.
Futhermore, I video-cam my sleeping some nights and review the data. The website creator has it absolutely 100% correct when saying, "nobody cares more for your health than you do." My sleep disorder PA has a zillion patients and he tries hard to do a good job, but the science behind treating apnea with an air-pressure machine isn't exactly rocket-level engineering! After researching my own condition (central brain apnea), I feel I know as much or more "practical knowledge" of the procedure. Why is that? Well, my PA doesn't have sleep apnea, for one, so he can't possibly have the motivation to understand it like I do. Duh.

Not everyone can wait the weeks it takes to be seen for cpap/vpap adjustments, NOR can they afford the costs! Furthermore, I think those who seek the information on how to adjust the pressures understand their personal needs...thus the impetus for the research. I wouldn't have dared adjust my machine (more than the once when my PA told me how over the phone) had I not carefully studied my condition. Quite frankly, I'd rather be in control of my treatment than a mildly-concerned 2nd party. Sorry, but I'm acutely aware of just how nebulous and tenuous the apnea-world is on treatment...sure, they can diagnose (and talk about overkill!!!...it's funny that they expect an accurate sleep-reading on a person who's hooked up to a hundred servos, wires and got glue all over in their hair...sleeping in a strange bed-lmao!), but they struggle to find the "perfect" pressures for your treatment. A person in REM sleep (in the lab) gets air blown up their face from the attending nurse/PA and rudely awakened.

They go back to sleep and have more adjustments by the PA, trying to take care of the apneas. Sure, they do their best with what little time they get to figure out the correct pressures, but it's simply not enough time! Even 2 or 3 tests cannot fully accommodate ALL the conditions/situations a patient may experience. Tissue inflamation one night may be much worse or much less the next. Someone on sleeping pills or pain medication may have more blockage due to relaxed muscles. Conditions change constantly. Here's the thing (the analogy from hell): you take your kid in to the ER because he has a temp of 102, the ER doctor says take 2 Tylenol and call in the morning. Being the worried parent you are, you do as you're told. However, an hour later your child's temp has now risen to 103.5! You feel like and idiot rushing him back to the ER after you were just there and the doctor was explicit in his instructions of what do you...yet, you feel like maybe he missed something. The doctor has trained himself to be emotionally detached (he has to!)from his patients, unfortunately this detachment (and over-work) also means he isn't giving your kid the necessary attention. If YOU had been the doctor, you'd have kept the kid in the hospital to see if the temp went down...you'd try various solutions, etc. But you're not the doctor! It's the SAME with CPAP users and their worry about treatment not being effective. We HATE going into them with our concerns and being told we're being silly, hasty, or over sensitive...or worse, to schedule another sleep test in 2 weeks. Meanwhile, you're dying. So, "Chip" (if that IS your real name), if you're they type of person who enjoys putting up with delays in treatment, if you have 100% confidence in your physician AND his ability to dedicate the time necessary to find your exact treatment, and, if you don't mind letting others be completely in control of your life-and-death situations, by all means, be that way! But I seriously doubt you are! You're in the sleep-care industry? How'd you learn everything to be such a professional?? Guess what? You're not the only one who can read and understand texts, manuals, mandates, and medical journals! This isn't meant to be rude; it's meant to be realistic Before we can get anywhere in a discussion, we have to be honest with ourselves. My truth (and I'm guessing most ppl would agree) is that I don't have limitless faith in my doctor--not in his knowledge, not in his time-constraints, and certainly not in his empathy. He does his best, I'm sure, but many times his best is not good enough.

As for the sleep-care "professionals" out there who clamour about self-adjusting CPAPs, I certainly hope that if you or someone you love ever (God forbid!) get a disease, that you don't leave 100% of your care and treatment to your physician. That's apathy...and, it's illogical...and, un-american! If you are able, you'll do EVERYTHING in your power to better understand and treat the condition. If you wait for a doctor, or a break-through treatment, you're have given up your power as an individual, as the master of your temple. Sorry this got philosophical, but it's the root of why we rebels in the CPAP world do what we do...to us, it's natural (in my opinion).