[Pressure] Danger Involved - Changing your own CPAP pressures

[jdireton]

Ken,

If you get the opportunity to read this, you sound like a dedicated and conscientious RT. I thank you on behalf of the entire community.

You know that you are not the norm. I don't think DME's and RT's are evil! I don't even think insurance companies are evil (okay, maybe just a little)!

I do think that economics pushes businesses (doctors, DME's, sleep centers) to spend less time with patients. Many of us cannot afford the copays and some insurances limit our availability to sleep specialists, meaning the whole fee would be out of pocket. On this forum I've read horror stories of DME's providing used equipment, doctor's basically ignoring patients input in the 3 minutes they spent with them, etc.

We're struggling here to do the best we can! We do this by sharing our knowledge with each other and taking control of our own therapy. As always, some of use will go too far (like mask mods, IMHO). I can't tell you how many people have had a problem solved, gotten adjustments that made compliance possible, etc. due to this forum.

Please help us! You are welcome to disagree adamently and tell us when we're wrong. I, for one, would appreciate it.

[DCwom]

According to the FDA a CPAP is classified as a class 2 medical device, if you're not familiar with the classification system its numbered 1, 2 and 3. Boiled down to simple terms its the risk of causing the following: class 1 injury, class 2 serious injury and class 3 death. So according to my simplified definition of FDA's regulations a CPAP, if improperly used, can cause serious injury. With that said most people can probably safely change CPAP pressure, the sticky point with medical advice is that it needs to cover the 100% case, not the "most people" case. For myself I would change my pressure if I felt it would help, however I would ALSO tell my doctor, and if he/she won't/can't adequately explain why it is a problem then I would find a doctor who could.

[Sleepster]

Ken,

I would like to welcome you to this forum should you decide to join us here. You believe in patient empowerment and you could do a lot of good for a lot of patients. Your participation would help us out.

I agree that extreme caution should be used when adjusting the pressure. In fact, I've never done it myself without an order from my DME and doctor to do so. But I think it's important for patients to understand why pressures need adjusting, and what effects pressure adjustments can have on their AHI. If I hadn't learned those things here I never would have been empowered with the knowledge I needed to request that my doctor make these pressure adjustments.

Central apneas increase the CO2 levels within the blood. Simply put, the brain attempts to adjust for this and tells the person to stop breathing for these CO2 levels to lower causing more central apneas (pauses in breathing where the body is no longer attempting to breath).

I thought that induced central apneas were caused by the brain attempting to adjust for the decreased CO2 levels caused by the pressure being too high.

I can understand the medical profession's stance, directing patients to not change their pressure, and withholding from them the means to do so. But along with that stance comes the responsibility to be available to their patients to change the pressure for them.

You seem like a competent and dedicated professional and I'll bet that if I were your patient and was concerned about the effectiveness of my therapy you'd look into it and see about accomodating my needs.

But the rest of the medical profession doesn't do that. If they did, they wouldn't provide machines that can't measure a patient's AHI. If they did, they wouldn't refuse to consider changing a pressure without an additional sleep study. Why is it that a lot of doctors think that the only way to determine the correct pressure is with a titration done during a sleep study?

My doctor refused to lower my pressure to treat my aerophagia. He told me that I needed a BiPAP. I got one, and it induced a large number of central apneas. To fix that, he lowered the pressure. Twice. But both times it was because I was watching my own AHI and reported it to him. Why didn't he monitor me more closely and request a report from his DME at least once a month for the first two months of therapy?

There're two sides to this issue, and you've done a good job of stating one side of the issue. Hopefully, we can help you see the other side of it.

[Ozone]

Naturally, I'd do anything my doctor/RT specifically says, IF they say it specifically and while paying attention. The doctor who is trying to use his/her knowledge to help you is obviously best. When's the last time you got that attention, though? Seriously, I had CAD, a heart attack, quintuple bypass, PAD, depression, and other symptoms etc., and I had to scream to get my primary and cardiologist to do anything at all about the news that I tend to stop breathing a lot when I sleep. The docs still don't acknowledge that any of these diagnoses and symptoms have anything to do with the breathing problems. Whatever; "C.Y.A.", I get it. But if I need to scream to get the treatment, why would anybody be surprised that I take an active role in making that treatment effective? I'm lucky to be alive at this point, despite a lifetime of medical appointments before my MI. I think at this point I'm on bonus time. I would never do something now that I thought might hurt me, but I expect, and trust, healthcare professionals to say something specific, rather than exert authority and chastise me because I didn't ask "Mother may I?"

If nothing else, it is noteworthy that although no one has instructed me in making adjustments to my machine, not once has any of my doctors, or the RTs, or anyone, personally said anything to me about any dangers from changing settings on the CPAP, despite the obvious prevalance of internet discussion boards like this one. Either it doesn't matter much, or no one pays attention enough to help. Either way, we are on our own.

[SlightlySleepy]

I'm obviously new here, so just found this fascinating thread. I think it should be required reading for sleep specialists and RT's.

In an ideal world perhaps the patient (I would prefer the word client or better yet, sleep deprived person) who suffers from any medical condition would be able to consult with the precise professional with the perfect knowledge and caring compassion to deal with their condition at the exact time they needed it. An internet website would match them with the next available doctor in their area within 48 hours.

Maybe in the old days when medical costs were affordable, and doctors came to your home, and knew your whole family, it made sense to have a father figure physician role. I don't know about other countries, but in the USofA, it is not going to happen. Now, the physician is more a consultant and you must be your own advocate and medical history consolidator. And when you call for an appointment, the first question is 1) What insurance do you have? and 2) What's your credit card number? When you get there, the first papers you have to sign are the "You will not sue me" forms.

Even with good insurance, if you want an appointment you are going to have to wait weeks or sometimes months for a specialist appointment, yet alone a sleep study, and that sleep study is going to be the furthest thing from sleep and still be called a sleep study. Electrodes on the head which make you feel like you're sleeping on a pincushion, a room too warm or too cold, strange hours and no bed partner, usually hungry because you don't know where restaurants were near the sleep study center and were running late anyway. A voice coming in over the intercom to 'reassure you' that you are being watched. A therapist who gets off shift at 7am so needs to disconnect you before that, even though you're finally getting some sleep. How can this possibly reflect your true conditions at home? Not to mention the $6000 bill which awaits you for your time...let's see, that's about $1000/hour for the privilege.

In medical school they used to teach the importance of physicians not treating themselves -- not for lack of knowledge, but for lack of objectivity or perspective. Sometimes not good idea to treat yourself or a family member. Yes, it's can be hazardous, and the guilt severe if one does do so and makes a mistake, but what are the options? Hide your intelligence and knowledge? Trust a stranger to care more and never make a mistake? Just because you could get carried away with a perception bias or self-delusion?

I basically diagnosed myself, suggesting the diagnosis to my doctor who only then ordered the sleep study which confirmed my own suspicions. I've had three sleep studies over the years, and I'm not sure any of them were representative of home sleeping. I make no pretense of being unbiased: I am 100% in favor of my own best interests. Perhaps what is needed is not less patient involvement but more informed patient involvement, such as making more and better sleep analysis available to the patient. Why not have miniature sleep labs built into these devices? I've paid good money to specialists and DME sleep equipment suppliers over the last 10 years an not once has anyone peeped a word about the possibility of data logging. I only found out about it by accident while searching for information on how to adjust my own machine.

In summary, while I might have phrased things differently on the home instructions page, if for no other reason than to make people think three times before changing anything, and I probably won't change anything at least until I have a machine capable of monitoring my breathing, but I am very glad to have found this site. This is the future of medicine, like it or not. Our only choice is whether to maximize the odds of success by making available the best information, or risk leaving medicine to the guild member men behind the curtain.

[zonk]

Hi SlightlySleepy
I've enjoyed reading your post

[Ozone]

"Now, the physician is more a consultant and you must be your own advocate."

Good, bad, happy, sad, or indifferent, this is the present reality. Scares the sh*t out of me, but this is the truth. The MDs and RTs can threaten me about what is "approved" or "legal" when they take up the responsibility; until that happens (when my grandson is retiring, maybe) I'll be ignoring the threats, and demanding awareness. Thankfully, I do have some advice from a doctor that is willing to acknowledge what I learn from outside sources. He won't abdicate his role as "The Decider," but he'll wink and send me on my little voyages, that lead to places like this. Great, but he is not taking any responsibility himself, and his fear to advise impairs his advice. Then I try to decide, and wish I had true consultants.

[Dreamcatcher]

What about us with a wide open Apap machine? Is it because our doctors couldnt be bothered to set a min & max? And what about the doctors making threats about taking machines of us? If it wasnt for the Apnea Board I would have sent my machine back to my doctor with a note on directions where to put it!!!

[CHanlon]

What about us with a wide open Apap machine?

Yeah, that part bugs me like crazy - all the people I've seen here that have 4 - 20 set as a pressure range. Someone - the Dr. or the DME/RT is taking a real shortcut there. And it's not really of as much benefit to the client as the APAP should be - someone that needs a low pressure in the teens is going to take a lot longer to get relief if their machine is starting at 4, then they will if the range was set to 12 -16+

[Sleepster]

Yeah, that part bugs me like crazy - all the people I've seen here that have 4 - 20 set as a pressure range. Someone - the Dr. or the DME/RT is taking a real shortcut there.

This may be why some doctors don't want to prscribe APAP's for their patients. They have to do a lot more work. For a CPAP they just set (at the titration pressure determined by someone else in a sleep study) and forget.

Maybe that's why some doctors don't want to bother with data-capable CPAP machines, either.