[Pressure] Danger Involved - Changing your own CPAP pressures

[SuperSleeper]

This is a wonderful discussion. Being new to sleep apnea but NOT new to the potential faults/informational deficiencies that can occur with the medical community, may I say thank you for this board and for the needed information.

[SuperSleeper]

I've got to chime in here. I got the instructions for adjusting the pressure on my cpap from this site. Surprisingly when I received the download it was instructions that I had already figured out for myself. It isn't that hard to figure out that you push two buttons at the same time. After looking over the settings, the only thing I adjusted was the length of the ramp feature. WHY in the world would this be locked from the user? I can see no way this could possibly harm me. Also, how could the information page regarding how many apneas were obstructive and how many were central do me any harm? Why would information be locked from the owner/user?

I agree someone would have to be a fool to crank up their pressure from a 6 to a 17 without first consulting a doctor. The main reason I wanted to be able to adjust my pressure was because the increase my doctor prescribed made my chest hurt all day. I wanted to lower the pressure and then increase it a small amount each night instead of being hit with the high pressure all at once.

[SuperSleeper]

When I was diagnosed in October with severe OSA I was titrated and a pressure of 9 cm was recommended. When I got my ResMed S9 Autoset with the pressure set to 9 cm by the DME supplier I was not happy with high AHI data. I downloaded the Clinician's Manual and set the machine to APAP 4 <-> 20. After some experimentation I discovered that the best setting for me is 4 <-> 13.6. I sleep a whole lot better than I did prior to using C/APAP and I don't think that I'm putting my life in danger. It's that simple.

[SuperSleeper]

Health care professionals have gone through much training in utilizing safe and effective diagnostic methods for their patients vis-a-vis a polysomnogram, which can record a minimum of twelve channels requiring a minimum of 22 wire attachments to the patient. But I suppose that you and your little CPAP machine and PC software can do it much better. Yeah right. :annoyed:

It alarms and stupefies me that a few know-it-alls on a web forum promote self-treatment for such a formidable condition as sleep apnea. Who here can suitably interpret an EEG, ECG, EOG or pull it all together as a determination is made from the scoring results, keeping all in balance with the medical history a complete list of drugs the patient is taking and any other relevant information that might impact the study? How many of you can do that? If you can't, you have no business changing your own CPAP pressure.

There is a reason you should use health care professionals. We are the professionals, not you.

I agree with the original poster. A little knowledge is a very dangerous thing. To ensure patient safety, it takes thousands of dollars of state-of-the-art equipment, a well-educated Registered Polysomnographic Technologist to perform the study, a well-organized Clinic Director and accompanying staff to make sure all runs smoothly, a physician trained in sleep medicine to diagnose while consulting with the patient's Neurologist or Pulmonologist as necessary, and acting in cooperation with a DME, RT and others.

But no: you people think you can dispense with all that and tinker with your health as if it were the family lawnmower.

Whatever. Just don't expect your health care provider to pick up all the pieces after you've ruined your health. You did it to yourself.

[SuperSleeper]

Respiratory Chip said: My wife set up my first e-mail account 15 years ago when we got married. chipthejackass@yahoo.com.

Isn't that dangerous?
Should you not have engaged and paid a professional ISP to do that for you?

I see that you favored the cheapest route (free) withOUT any regard as to what dangers you were exposing yourself to.

I am very adequately insured and even if I were not, I do NOT do the things you say I should not do to be able to save money. I do them because it is the [big]very best way[/big] for me to accomplish the best treatment for my Sleep Apnea.

[SuperSleeper]

Health care professionals have gone through much training in utilizing safe and effective diagnostic methods for their patients vis-a-vis a polysomnogram, which can record a minimum of twelve channels requiring a minimum of 22 wire attachments to the patient. But I suppose that you and your little CPAP machine and PC software can do it much better. Yeah right. :annoyed:

It alarms and stupefies me that a few know-it-alls on a web forum promote self-treatment for such a formidable condition as sleep apnea. Who here can suitably interpret an EEG, ECG, EOG or pull it all together as a determination is made from the scoring results, keeping all in balance with the medical history a complete list of drugs the patient is taking and any other relevant information that might impact the study? How many of you can do that? If you can't, you have no business changing your own CPAP pressure.

There is a reason you should use health care professionals. We are the professionals, not you.

I agree with the original poster. A little knowledge is a very dangerous thing. To ensure patient safety, it takes thousands of dollars of state-of-the-art equipment, a well-educated Registered Polysomnographic Technologist to perform the study, a well-organized Clinic Director and accompanying staff to make sure all runs smoothly, a physician trained in sleep medicine to diagnose while consulting with the patient's Neurologist or Pulmonologist as necessary, and acting in cooperation with a DME, RT and others.

But no: you people think you can dispense with all that and tinker with your health as if it were the family lawnmower.

Whatever. Just don't expect your health care provider to pick up all the pieces after you've ruined your health. You did it to yourself.

I have diabetes. I don't have to go in and get my glucose tested after each meal. I don't have to go in before every meal and have them tell me how much I can or cannot eat. I got a glucose meter (which I got to pick out myself) and can test my own blood sugar levels. I can adjust my own medication and my own eating patterns. Yes, I discuss it with my doc every 6 mos or so but she doesn't ask to see my meter to verify I have been compliant. She trusts me to tell her if there is an issue or if I have a concern.

You know why I am allowed to take care of myself? Because I am an adult who understands consequences. I understand how to read a manual. I understand how to take care of myself. I am allowed to take control over my own health. Same goes for my other medical conditions as well. None of them have as much regulation and Super Secrets and "our equipment is better than yours" control issues as I have encountered in treatment for my sleep apnea.

And yet, for my sleep apnea, I'm not even allowed to change the ramp setting without getting permission (honest, that's what I was told years ago). I am not allowed to take any control at all over my own health other than using the machine. Even then, my "compliance" can be tracked and verified.

But why? I am still that same adult who understands consequences. Not following the proper procedure for my diabetes has much much much larger consequences, don't you think? As dangerous as sleep apnea can be, I think most of us would agree there are worse diseases and conditions that are less regulated by the industry providing care and equipment. Yet, I can't change the pressure a tenth degree without getting lectures from Holier-Than-Thou folks like you?

Does any of the information here about changing anything about a CPAP not come with warnings and advice about seeing a doctor? It all does both. It is easy to read and understand and chock full o' warnings and strong suggestions, just as anything regarding health should be. Does any of it clam to "know it all"? Or does it say "here is how to have more control over your own health"?

Yes, I do have the business to change my own CPAP pressure. Yes, I do have the right to take control over my own health. How dare you or anyone else say otherwise! We who have sleep apnea are not idiots. Why are we considered so untrustworthy we are watched and regulated with as much scrutiny as a drug abuser in rehab? We comply with wearing uncomfortable masks, deal with dry eyes/throats/noses, with noisy masks and machines, with the daily and nightly routines we must establish to get sleep and treat our condition. We do what is necessary with what little information we are given. If I got as little feedback with my diabetes care as I do my sleep apnea, I'd have huge issues.

If you and others like you want us peon sleep apnea patients to utilize your 12 channel, 22 wire polysomnogram, then make them cheaper. Make insurance companies pay for them. Explain to us in small words why our at-home equipment is so expensive yet unworthy yet so complicated we can't touch them yet not diagnostic tools yet they have diagnostic tools built in. Explain to us why we aren't allowed access even to the information. Have you not read the reasons people are giving as to WHY they want the information? I'd bet nearly every single one of them is because of cost. Because insurance companies won't replace the machine that costs far too much. Because we don't understand why we can't be trusted.

Be useful with all that training and stop being the problem.

[SuperSleeper]

Good points, Steven and Paula...

Glad someone else stepped in to address the "clockpunchers" of the world.

[SuperSleeper]

It is quite interesting discussion recently i have read that one of Resmed ceo said that the only way someone can harm themselves if the cpap machine fall on their head .
when one become involved with their own treatment ,eventually they end up buying more products and the manufactures make more profit for their share holders .
I think the main reason company like Resmed would not make these information "directly" available to patients is to cover their backside in case of lawsuit ,but people who sell those machines and some doctors feel threatened and they go on the defensive when patients become knowledgeable and ask questions ,probably manufactures happy to bet each way as they end up winning all the way to the bank

[SuperSleeper]

If it were left up to Respiratory Chip, we also could not use parachutes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC300808/

Now that has to be the most clever web page I've read all week!

[SuperSleeper]

WOW - who is winning the pissing contest? RespiratoryChip or Patient Empowerment. I'm pulling for Patient Empowerment!!!

As for clockpuncher:

you have no business changing your own CPAP pressure.

Ummm... Last time I checked I did not read clockpuncher's name on my birth certificate. Nor is his name on the marriage certificate. So that only leaves one other option - and yours is not the name I pray to every night!!!

Dr. Don has been my PC for over ten years. Do you know what he tells me - Who knows me better than I do!!! And why shouldn't I take an active and aggressive role in my treatment? I know me better than anyone so Im not to worried if and when "all the pieces get scattered". I know how to pick me up and put me back together again!!!

Thank You for your concern "PUNCHER"!!!

P.S. I guess I shouldn't post when my dander is up - can't spell to good