[Pressure] Danger Involved - Changing your own CPAP pressures

[0rangebear]

I just read finished reading this entire thread......Fascinating

Back in the 1980's when the new oral medications, home test kits, and insulin pumps and A1C test were becoming available to the public. I had more that one conversation with a doctor or nutritionist about Self Management of diabetes.

Many of them stressed that in was not only illegal but life threatening to change my own dosages, perform my on blood testing, and experiment on myself.

I walked out on more than one Dr. Who said. If you going to come to me, your going to follow my regime without exception. I will not have a patient self medicating.

My response to that attitude then and now is; thank you for your time, b ut you not the doctor for me. I interviewed several doctors before I met the endocrinologist I use now as my primary Dr. He was very open to the idea of Self Management.

I have Self Managed my diabetes now for 30 years. My Doctor is a great advisor and counselor, and he recognizes that have had far more success controlling my BSL than the doctors and dieticians did before I took control.

Today almost all diabetic experts will tell up front that you hive to take charge your self and Self-Manage your own diabetes; no one can do it for you.

From what I have learned about this Positive Airway Pressure therapy in the last year, it appears to be another madly that requires self management to be successful.

I time this will become the norm.

[Luvmyzzz]

I just read finished reading this entire thread......Fascinating

Back in the 1980's when the new oral medications, home test kits, and insulin pumps and A1C test were becoming available to the public. I had more that one conversation with a doctor or nutritionist about Self Management of diabetes.

Many of them stressed that in was not only illegal but life threatening to change my own dosages, perform my on blood testing, and experiment on myself.

I walked out on more than one Dr. Who said. If you going to come to me, your going to follow my regime without exception. I will not have a patient self medicating.

My response to that attitude then and now is; thank you for your time, b ut you not the doctor for me. I interviewed several doctors before I met the endocrinologist I use now as my primary Dr. He was very open to the idea of Self Management.

I have Self Managed my diabetes now for 30 years. My Doctor is a great advisor and counselor, and he recognizes that have had far more success controlling my BSL than the doctors and dieticians did before I took control.

Today almost all diabetic experts will tell up front that you hive to take charge your self and Self-Manage your own diabetes; no one can do it for you.

From what I have learned about this Positive Airway Pressure therapy in the last year, it appears to be another madly that requires self management to be successful.

I time this will become the norm.

I agree with you Orangebear to a certain point, not everyone is as closely in tune with their own well being, I for one can see the relevence to your stand, although some individuals have so much going on with their health, they are over whelmed and don't want to understand or even try to help themselves. It's nice to know there are MD's who can trust their patients to look after their own health needs, too many are either too busy to take the time to get to know the individual and what their capability of handling a delicate "life line" of optimum health and well being. There are also Md's who fear the repercussions of any accidents that have a high probability of happening and flat refuse to go deep into self medicating.

[FrankNichols]

I agree with you Orangebear to a certain point, not everyone is as closely in tune with their own well being, I for one can see the relevence to your stand, although some individuals have so much going on with their health, they are over whelmed and don't want to understand or even try to help themselves. It's nice to know there are MD's who can trust their patients to look after their own health needs, too many are either too busy to take the time to get to know the individual and what their capability of handling a delicate "life line" of optimum health and well being. There are also Md's who fear the repercussions of any accidents that have a high probability of happening and flat refuse to go deep into self medicating.

I agree with this. for those that can and want to, I strongly advise to find a doctor you can work with and that will work with you. However, I really do think those are the minority among us, and we should be careful in calling doctors stupid or hard to get along with. For most, and I do mean most by a large margin, the doctor needs to decide and they need to strictly adhere to the prescriptions. This forum represents a very small percentage of the people on CPAP machines and most here are highly motivated and capable of making treatment decisions giving help on forums like this one. But "rugged individualism" that is often seen online can lead to dangerous results if the wrong people see that advice and follow it instead of their doctor.

I am glad the forum is here, and I devourer all the info I can get. But, that said, I do firmly believe in having/finding a doctor you can discuss your treatment with even if you are planing to make real time treatment decisions. If you don't like your doctor, or think your doctor is a jerk, find another one.

[tmoody]

I haven't seen my doc since starting to fiddle with settings. I have no idea how he'll respond. If I'm successful in reducing AHI, I suspect he won't be too annoyed. If I'm not, I'll probably just revert to the original settings anyway, since they wouldn't be any worse than my modifications.

[0rangebear]

Good point Frank and Luvmyzzz


Y'all make good points about risk. Some of us all more willing to assume risk than others. Neither position is wrong or right.

We all should have the freedom to choose. It is when the system denies us that choice that it concerns me.

I would never accuse any doctor of being stupid, you can't get through medical school on stupidity.

I also respect those people who aren't willing to take the risk, because that is there choice; even if those people are doctors. I just won't choose them to be my doctor nor do I want them foisted upon me

Quote:
Polonius, Hamlet act one

To thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man.
William Shakespeare 1599

I agree with you Orangebear to a certain point, not everyone is as closely in tune with their own well being, I for one can see the relevence to your stand, although some individuals have so much going on with their health, they are over whelmed and don't want to understand or even try to help themselves. It's nice to know there are MD's who can trust their patients to look after their own health needs, too many are either too busy to take the time to get to know the individual and what their capability of handling a delicate "life line" of optimum health and well being. There are also Md's who fear the repercussions of any accidents that have a high probability of happening and flat refuse to go deep into self medicating.

I agree with this. for those that can and want to, I strongly advise to find a doctor you can work with and that will work with you. However, I really do think those are the minority among us, and we should be careful in calling doctors stupid or hard to get along with. For most, and I do mean most by a large margin, the doctor needs to decide and they need to strictly adhere to the prescriptions. This forum represents a very small percentage of the people on CPAP machines and most here are highly motivated and capable of making treatment decisions giving help on forums like this one. But "rugged individualism" that is often seen online can lead to dangerous results if the wrong people see that advice and follow it instead of their doctor.

I am glad the forum is here, and I devourer all the info I can get. But, that said, I do firmly believe in having/finding a doctor you can discuss your treatment with even if you are planing to make real time treatment decisions. If you don't like your doctor, or think your doctor is a jerk, find another one.

[PaulaO2]

Pfft, my sleep "doctor" never ONCE asked about the AHI. Why not? Not because I had a non-data capable machine, but because it was data I wouldn't understand and was not important (paraphrasing since it has been a while). And when I was having trouble with my blood pressure to the point I was a stroke risk (and after many other tests by other doctors), he had me wear a recording oximeter then bumped the pressure by 2. Said it will go down and I can come back to see him in a year.

So I didn't.

If I did go back and he found out I had an APAP now, he would remove me as a patient anyway.

Between my GP and my data capable APAP, my blood pressure is fine and I am in full control of my own health. But that does not mean I do things without researching or without thinking about it first. I have a fantastic GP and together we figure out the best way to get me upright each day and maintain that status.

If a person wishes to follow what the doctor says and go no further, fine for them. If a person wishes to never step outside the comfort of the "DR = GOD" zone, then fine for them. We here at ApneaBoard rejoice when we help get a member to be self-empowered in their own health. It is not our goal to get anyone to leave their sleep doc and never go back. That's not our intention at all. We want members to understand what the doc is saying (or not saying) and know what questions to ask. What their rights are. What equipment would best keep them healthy and, yes, compliant. And we rejoice even louder when we hear of a sleep physician who actually, you know, reads journals and self-educates!

[PsychoMike]

I have read the thread and understand the initial concerns....but...

Considering I have never actually met my sleep doc and my original DME's RT couldn't care less about "optimizing" my therapy to minimize apnea events (for them it was <5=perfectly fine...who cares that I am a UARS patient where my sleep disruptions are ~10x my apnea event numbers....a 4.9 to them was fine, but still meant ~45-50 sleep disruptions / hr for me), I'm one who is strongly in favor of letting patients have the tools to be able to be proactive in their treatment.

I'm not in favor of just changing settings willy-nilly, but using common sense and a solid scientific approach (i.e. small change to one thing at a time, give it time to see the effect of that change and then see about the next change). Patients have the time to do it (but generally lack the information to be able to), Sleep Docs don't have the time (and getting in to see them is expensive (US) and a long wait) while the DME's see the patient more as walking income (and less as someone they are supposed to be helping).

Yes, you can mess tings up by digging in without information...so folks, if you are going to be proactive in your therapy and adjust your own pressure, do your homework first (but I personally feel it is worth it...big time).

[Adoniscmj]

[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.

If I had not adjusted my own pressure I would still be getting way to much and I would have stopped using it altogether, as my doctor was slow to respond and my issue was more of an annoyance to him than what he would have liked. I was set at the default pressure 4-20. My machine would spike up to 16 and it was terrible. I now have it adjusted down to 7.8 to 9.5 and my AHI is 0.0 and the machine goes down in pressure steadily as the night goes on until it is sitting at 7.8. I don't see this as a problem. Some people shouldn't do this and those that do most understand the implications of their actions. Please don't let it trouble you so much. I question that I even need CPAP with what has been going on with my readings in SH.

[Luvmyzzz]

[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.

If I had not adjusted my own pressure I would still be getting way to much and I would have stopped using it altogether, as my doctor was slow to respond and my issue was more of an annoyance to him than what he would have liked. I was set at the default pressure 4-20. My machine would spike up to 16 and it was terrible. I now have it adjusted down to 7.8 to 9.5 and my AHI is 0.0 and the machine goes down in pressure steadily as the night goes on until it is sitting at 7.8. I don't see this as a problem. Some people shouldn't do this and those that do most understand the implications of their actions. Please don't let it trouble you so much. I question that I even need CPAP with what has been going on with my readings in SH.

I feel for anyone who has a Doctor that doesn't listen...I have MORE choice words, but I'm sure I can't use 'em...I am lucky, I have a doctor that specializes in SleepApnea patients and he deals with ALL the problems, he is a very "hands on" type o' guy, I wish I could share him with everyone here who has these issues!

[FrankNichols]

I feel for anyone who has a Doctor that doesn't listen...I have MORE choice words, but I'm sure I can't use 'em...I am lucky, I have a doctor that specializes in SleepApnea patients and he deals with ALL the problems, he is a very "hands on" type o' guy, I wish I could share him with everyone here who has these issues!

I am a life time smoker of 2 packs a day of Pall Mall (non filters). I quit smoking 6 years ago, so not a smart thing. I just got on Medicare and so for the first time in 16 years I have health insurance. My first step was to get a Primary care physician. My first meeting with her was scheduled for 30 minutes. We spoke for 1.5 hours. I decided to keep her. She then set me up with a full course of doctors to put me through the gauntlet - heart, lungs, sleep study, colonoscopy, complete blood work, etc. So far the tab is about $15K and my out of pocket is about $500 (including get the AirSense 10 Autoset.) In each case I have spent a lot of time with each doctor discussing ME and THEM all my first meetings ran way over and that to me is a good thing. I want doctors I can discuss things with and work with.

Personally I feel extremely fortunate in that I have had none of the problems I hear over and over here. I don't know if I am just lucky, or if my approach of opening a dialog and being very interested in them and their opinions helps that much, but so far so good.

BTW - I love Medicare not a single issue with billing or authorizations so far.