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

I would love to be able to tweak my pressure but dont know how to. Does anyone care to point me in the right direction???>>>>>>>>

rested gal wrote:

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.

Great Article RestdGal, thank's for sharing!

I have changed my pressure slightly before and it did help however, I just usually keep it on Auto Pilot 5.5/20, I was titrated at 9 however my pressure goes all the way to 15.5 at times and as low as 5.9 other times, otherwise, I would have tweaked with my pressure (using straight hard core cpap), lol until I got the setting perfect. I would have changed it by 1 number at a time, not 2, 3, or 4, no one here does that thet are to educated (by using this forum) to do something that would be dangerous to them or their lungs..

Some of these people have been on the hose for 20 or more years and i've got to tell them that "MY HATS OFF TO ALL YOU GUYS", it's been a long journey from the beginning!

For me, in August it will be 1 year for me so it's very hard to imagine wearing that hose for 20 years, whewwwwww

Have a great day!

mghaner wrote:I would love to be able to tweak my pressure but dont know how to. Does anyone care to point me in the right direction???>>>>>>>>

mghaner...I've sent you an email to the address on your website. The email has a PDF of the provider manual for your machine attached.

Maybe the OP should have asked who DOESN'T titrate their own pressure!

I do! I do! (Jumping and waving in a friendly manner)


I wouldn't waste one single second thinking that I wasn't allowed to do with myself as I wanted.

Paula

rested gal wrote:
Excerpt from the study:
........ this strategy would not be feasible for intellectually disadvantaged patients ........

Au contraire, I got my pressure correct by self-titration!

rooster wrote:

rested gal wrote:
Excerpt from the study:
........ this strategy would not be feasible for intellectually disadvantaged patients ........

Au contraire, I got my pressure correct by self-titration!

I used to be a "Caveman", and I did it! Jim

A little air isn't Rocket Science, it's almost yard work. (Leaf Blower)

rooster and goofproof.... you have me ROTFL!!!

I have said it before and I will say it again: thanks to the good people on this site, I have taken charge of my own apnea treatment, set the pressure that I really needed, and am feeling better rested than I have in years.

First, Thanks God leads me here!
Second, Thank you to this forum.
Third, Thank you to you all and many more.

I finally got real lucky when my Internist's husband had to go on CPAP therapy and she asked me how I managed. Boy, what a story I laid on her. Told her to get him online with cpaptalk.com and learn...Now I can get any Rx I want. LOL

Let me back up a bit, I have been self diagnosing and setting my own pressure for about 4 years now. Thanks Encore Pro and James Skinner for his software, and finally got Medicare to let me out of the ties that bind with Lincare, I buy what I want from CPAP.com, bless you CPAP.com.

I have gone through 10 or 12 different masks and finally settled on a much altered CL2 as my favorite. Still have a few leaks now and then but that is mostly my fault, not the mask...

My Remstar Auto /CFLEX is my second machine I bought from CPAP.Com and am looking at a 420E with the latest software for traveling.

I have several friends now with SA that lurk here and thank me for clueing them in to CPAPTALK.com so they can begin to understand and monitor their treatment too.

Thank you all, for careing, for being there when I had questions, for keeping this forum what it is today.

As others have said because of this forum I have changed and fine-tuned my pressure. When my doctor prescribed an Auto for me he wrote "pressure
4-20cm" on the prescription. I was titrated at 12cm and thought this range was way too large. I brought the APAP home did some research, found out how to change the settings and started with a pressure range of 8-13. Bought the software and reader and although I have been on PAP for almost 4 months I am still tweaking things here and there, my AHI averages about 1.3.

When I went to see the DME to read my card for the first time ( before I had the software) she didn't even comment on the settings being changed, her only comment was "wow you have 100% compliance!". Same thing with my doctor when I handed him the printout he just said let's keep you on auto and see me in 3 months. This is not a put down on my doc, in fact I like him very much. But it does illustrate that if you want successful therapy you have to be able to monitor yourself daily and change things when you think you need to.

Since being diagnosed with OSA I have taken the perspective that every night is another trial in an experiment that I will be conducting for the rest of my life and I am thankful that I can control the variables that will make it a successful one.

If I waited for my doctor appointment for each change then it would take a year or more to get to where I am just 3 weeks into my treatment. My ENT wrote the first prescription and I cancelled the appointment for the CPAP and got an appointment with a doctor that specializes in Sleep Apnea, because my ENT did not know what was available and wrote a generic prescription. The new doctor was convinced enough by me to write a prescription for a data compatible CPAP. With appointments 30 to 90 days apart, it would take a long time to fine tune your settings to get the best treatment for you.

With this said, you have to do what you are comfortable doing. If adjusting your settings is something you are comfortable doing then I think that is great, but if this makes you uncomfortable, then work with your doctor for changes. I think you should share what you have done with your doctors so they understand that you can and want to manage your therapy and you expect them to assist and council you to make sure you get the best treatment possible.

I was tirated at 8. 4 weeks later I started having some problems (let me say up front, I thought it was a pressure issue). When I went into the doctor, he agreed and popped it up to 11 OMG I went from waking 2 times a night to 6, my symptoms started returning and I felt like I was back to square one. When I went back for my followup, his comment was, "That pressure is fine, you just have insomia with your apnea" and gave me a presciption for sleeping pills. That was pretty much the end of my trusting the doctor.

My husband and I discussed it and decided I couldn't wait 3 months to have the doctor decide maybe he was wrong. I picked up a data capable machine - I went with an APAP, figured I'd save money in the long run if I found I need those functions. I'm still working on getting the APAP settings fine tuned, but it's looking like my optimum pressure is 9.5

I think that self-monitoring and adjustment was implicit in my doctor's prescription of an APAP. I never had a titration study, and have no follow-up scheduled. I'm fine with that ambivalence as long as I have the tools to monitor and evaluate my own treatment. This forum has been a tremendous help since my severe apnea diagnosis in April. Hopefully I can pass along some help, just as I received it.