How many people adjust CPAP presure w/o consulting their MD?

I haven't ever seen or talked to the McSleep Clinic doctor who prescribed my current CPAP, and my GP doesn't seem to care that I am on CPAP.

I watch my numbers and my original titration was pretty good. I have adjusted my pressure from 10 to 10,5 cmh2o and neither of my doctors know or would probably care.

I think if you walk in to office with your printout-
showing compliance- how you adjusted- what results were-
actually show the doc you know- they will be OK with it
I even printed out a report from the oximeter showing
that O2 levels were good all night- what could he say?

probably docs are worried of people hurting themselves somehow and blaming the doc- you know the magic word liability!

anyhow- my doc was cool with it- I even lobbied him pretty hard
to prescribe APAP for newbies as a way to improve compliance

I flat told him that leaf blower and full face mask I had originally would have made me give up along with the rest of the [at least] 50% that quit!

perhaps my personality is weird or whatever- but I simply
am not afraid of the doc-
KNOWLEDGE IS THE KEY- YOU CAN GAIN THAT KNOWLEDGE HERE !!!!
VERY HONESTLY- CPAP TALK IS WHY I AM GETTING SUCCESSFUL TX

I don't do anything to MY BODY that I don't agree with. Therefore you can guess my answer. I change whatever I want on my equipment whenever I want.

I know there are rogue instructions on the web. But they usually come with a very scary warning. Such as:

[quote]DISCLAIMER & LEGAL NOTICE: BY USING THESE CPAP SETUP DIRECTIONS AND SETUP GUIDES, YOU UNDERSTAND THAT YOU ARE PERSONALLY ASSUMING ALL RISK FOR USING INFORMATION ON THIS WEB PAGE AND IN THESE DOCUMENTS AND WILL NOT HOLD APNEA BOARD, ITS MEMBERS, OWNERS, ADMINISTRATORS AND MODERATORS LIABLE FOR ANY PROBLEMS, DAMAGES, PHYSICAL HARM, (INCLUDING DEATH), MENTAL HARM OR ANY OTHER HARM THAT MAY COME TO YOU, YOUR FAMILY MEMBERS, FRIENDS, CO-WORKERS OR ANY OTHER PERSONS WHO MAY RECEIVE THIS INFORMATION FROM YOU. YOU MAY NOT USE, COPY OR DOWNLOAD THESE DOCUMENTS UNLESS YOU HAVE A LEGAL RIGHT TO DO SO UNDER ALL APPLICABLE U.S. LAWS. INFORMATION CONTAINED ON THIS WEB PAGE, APNEA BOARD FORUMS AND ON THE APNEABOARD.COM WEB SITE SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A QUALIFIED PHYSICIAN BEFORE SEEKING TREATMENT FOR ANY MEDICAL CONDITION, INCLUDING SLEEP APNEA. ALWAYS SEEK THE ADVICE OF A QUALIFIED PHYSICIAN BEFORE CHANGI[NG PRESSURE ON ANY MEDICAL DEVICE, INCLUDING CPAP MACHINES. [quote]

Is really dangerous??

Chares

Drinking too much water can be dangerious, some even have came up with a name for it, Drowning. Everything in excess can cause us trouble. Jim

That's why most humans have free will, and common sense. I'll admit some are lacking in some areas.

My wife and I self titrate, but we tell our Pulmonologist what we are doing and we give him printouts to show our results. He says ok and everyone is happy.

Yup, I modified my pressures.

My pulmonologist wrote the APAP Rx for 5-20. And, from the excellent advice I got hereabouts, I changed that to 7 to 9 (bracketing my titrated press of 8.)

I've slowly nudged the pres range up to 8.5-10.5, which got me through allergy season and a bit of weight gain (had to stop running for 6 months due to injury).

I've also learned that other folks w AFLEX have needed a tad bit more pressure to compensate for some apparent differences in effective therapeutic pressure values between AFLEX and other exhalation relief methods.

AHIs run typically below 1, and I feel great. I'm actually looking forward to telling all this to the doc, who's a pretty good physician.

Life's pretty good when you can prudently modify your PAP pressure to realize it's maximum therapeutic value.

Regards all - - Tom


.

I certainly do.

What is a sleep doctor. Got my machine at the VA April, 2007, and have yet to see a sleep doctor. I set my machine based on what I read here and advice I've been given here. The RT set my machine at 4-20 when I went in to have it checked last month. I had it set at 9-16 with an avg 90% pressure of 11.5. I changed it back as soon as I got home. She did this after reading my card which showed several days of 0's and avg. AHI of .03. So, God bless this forum and everyone on it. I'm a completely compliant patient in spite of the VA. I'm happy that I didn't have to pay for the machine and proud to have served. However, I reserve the right to be in control of my therapy.

Hmmmm,

Why pay the doctor for advice when in my opinion he should be paying me for what he learns (said in good humor)

Last visit I wrote the prescription & gave it to him & he confidently wrote it out on his letterhead verbatim (he did ask me what it meant (was for an SV machine) ) and he is looking forward to my input on the results.

I like this Dr because he has the sense to know he can learn from a patient but he is professional enough to always have some comments he can give me while researching cpap matters and when he knows I am calling. So I respect what he has to say - we like each other .

DSM

[quote="CMF"]
Is really dangerous??

Chares

[quote="thimarine"]What is a sleep doctor. Got my machine at the VA April, 2007, and have yet to see a sleep doctor. I set my machine based on what I read here and advice I've been given here. The RT set my machine at 4-20 when I went in to have it checked last month. I had it set at 9-16 with an avg 90% pressure of 11.5. I changed it back as soon as I got home. She did this after reading my card which showed several days of 0's and avg. AHI of .03. So, God bless this forum and everyone on it. I'm a completely compliant patient in spite of the VA. I'm happy that I didn't have to pay for the machine and proud to have served. However, I reserve the right to be in control of my therapy.

Let me put it this way:

ResMed machines have "mask settings". Tese settings can have only one purpose...to adjust the blower to compensate for different masks.

Respironics machines have no such setting.

Therefore I will continue to change pressures to compensate for different mask choices, and for different hose lengths.

After a while, you can feel what the pressure does to your throat, and when you change, you notice a difference.

Not really... the Resmed machines have you insert the (Resmed) mask kind in them so they can save you from figuring out how what your leak was. Resmed wll subtract the expected leak rate from the meaured, and will give you the residual... but only on Resmed masks it knows. For all others, it uses "standard".



O.

ColinP wrote:I certainly do.

I certainly do, too.

deerslayer wrote:by no means do i want to wear a white coat and stethoscope, but afterall medical folks are merely educated guessers not God. i thank God this forum exists ! tim

Exactly.

jrfoster wrote:Thanks to this forum I am taking care of myself and feeling good!
Oh, I have been known to change my pressure without charging myself $200!

Same here.

EarlyStarts wrote:I consider it dangerous not to change it to the correct pressure.

I agree, absolutely.

dsm wrote:I wrote the prescription & gave it to him & he confidently wrote it out on his letterhead verbatim (he did ask me what it meant

That's how I went about getting my very first prescription.

thimarine wrote:I reserve the right to be in control of my therapy.

Me, too.

Captain_Midnight wrote:Life's pretty good when you can prudently modify your PAP pressure to realize it's maximum therapeutic value.

Yep.

snoregirl wrote:I change whatever I want on my equipment whenever I want.

Ditto.

packer wrote:KNOWLEDGE IS THE KEY- YOU CAN GAIN THAT KNOWLEDGE HERE !!!!

I agree.

paloa wrote:At my last meeting with my sleep doctor he wrote on my prescription and certificate of medical necessity: "patient can adjust pressure" rather than designate a pressure.

What a good doctor you have, Paloa! You've done a good job educating yourself about this kind of treatment and an equally good job reassuring your doctor that you can handle it yourself. Excellent!

Catnapper wrote:I must say the right mask is part of the equation.

Yup. A mask a person can actually sleep with while wearing is probably the biggest piece of the treatment puzzle to "get right", imho.

Needsdecaf wrote:After a while, you can feel what the pressure does to your throat, and when you change, you notice a difference.

Paying attention to that while relaxing to drift off to sleep is exactly how I figured out what MINIMUM pressure to set. The software data confirmed what I already had found out through noticing that.

granti55 wrote:I adjusted mine and am feeling alot better.

Ditto.

Gerald wrote:Hardly any of us are "bovinely compliant".

Right!

j.a.taylor wrote:nobody but you will suffer if you're not interested in your own care.

Amen.

GumbyCT wrote:This is the CPAP Police - give your card readers to me and no one gets hurt, ya got it!

That's is and now put the software on the floor - easy does it!

Nice & slow.

Now set your machines back to where they blow cold air & won't help - then I'm outta here.

Good one, Gumby!!

ColinP wrote:I certainly do.

I certainly do, too.

Excellent point (and caution) here by DreamStalker:

DreamStalker wrote:there are some folks with complex sleep, neurological, and respiratory issues that need professional monitoring by the medical profession ... just make sure they are doing their job. However, if you have the simple, common obstructive sleep apnea, taking control of your own treatment is not only simple but also encouraged by many on this forum.

Right. And when it's simple, common OSA, here's an interesting study that was done a long time ago....
Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?

Excerpt from the study:
In summary, this study demonstrates that self-titration of CPAP in patients with OSA is as efficacious as manual titration in a sleep laboratory, with similar subjective and objective outcomes. Clearly, for this strategy to be successful, the patient must understand when and how to change the CPAP. Although the patient population studied did include a wide age range, this strategy would not be feasible for intellectually disadvantaged patients and those with physical handicaps that would severely limit vision and/or manual dexterity. Nonetheless, the findings from this study imply that routine overnight polysomnography is unnecessary for the purpose of CPAP titration in many patients with OSA, provided that the patient is given some basic education and support.