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

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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CMF
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How many people adjust CPAP presure w/o consulting their MD?

Post by CMF » Fri Jun 06, 2008 6:19 pm

I'm curious as to folks opinion on this.

Charles

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granti55
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Post by granti55 » Fri Jun 06, 2008 6:23 pm

quite a few people around here adjust their own and have the software to analyze the results. I adjusted mine and am feeling alot better. Some nights my ahi is 2 or 3


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SleepyNoMore
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Re: How many people adjust CPAP presure w/o consulting their

Post by SleepyNoMore » Fri Jun 06, 2008 6:39 pm

CMF wrote:I'm curious as to folks opinion on this.

Charles
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Post by deerslayer » Fri Jun 06, 2008 6:55 pm

very good ? ...as Goofproof,Wulfman & others have posted on here--i was setup to fail......heres your machine,heres your mask,go use it and mail in the smart card after 30 days...we will see you next year..to me that don't get it ! before i had to turn in the card to the VA i got a replacement,reader & software to track my own therapy... like the one link i keep on my postings says--who is more interested(concerned)to deal with ones condition/therapy. just this morning i dropped a letter in the mailbox to my VA cpap contact w/data printed off the encore and an explanation of what i had done(tweaked)settings and also said how much have spent out of pocket to achieve better results. i would think they may very well setup and say,wow this poor soul is really trying. after all if it is not ultimately our responsibility for our health, than who do you rely on ? ...we all have to go through the trial & error mask fit/leak thing,mouth leak,etc.....my ahi has dropped down a good 2 points & is hovering around ahi of 1 or even less recently because of raising min. setting,little by little-being patient and not rushing change. 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


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Gerald
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Post by Gerald » Fri Jun 06, 2008 7:17 pm

I suspect that ALL of us change our pressures. Hardly any of us are "bovinely compliant".

Gerald

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j.a.taylor
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Post by j.a.taylor » Fri Jun 06, 2008 7:23 pm

This group is known for being independent (some say rebellious) enough to take a personal interest in their own treatment.

Fortunately, some of us have good doctors who also believe in the value of patient-centered treatment.

And others . . .

Well, let's just say, nobody but you will suffer if you're not interested in your own care.
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GumbyCT
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Post by GumbyCT » Fri Jun 06, 2008 7:24 pm

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.


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Post by 6PtStar » Fri Jun 06, 2008 7:42 pm

Yep, I'm guilty!

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Post by Goofproof » Fri Jun 06, 2008 8:00 pm

I resemble the above remarks, I tell the Doctor what I'm doing and the results. He's happy with it, life is easier for both of us. Jim
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Post by bap40 » Fri Jun 06, 2008 8:13 pm

I changed my pressure also. I was titrated at 10 and that comes nowhere near the pressure I need to keep apnea's at bay!
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Post by DreamStalker » Fri Jun 06, 2008 8:36 pm

My doc was not that bad but he was definitely not very good. He was mixed in with one of those one-stop-shop outfits called a "sleep center". I found this forum early on and had pretty much taken control of my therapy before I went in for my one-month follow-up. When he gave me a puzzled look after asking him to explain the differences between a ResMed and Respironics auto cpap algorithm, I knew I was on my own.

I have maintained an average AHI of about 0.4 compared to about 3 or 4 during the first month of treatment. And that was only because the good folks here showed me how to read the data off my machine ... otherwise, the sleep center staff would have kept me totally in the dark about the efficacy of my treatment.

It was here that I learned that finding a leak-free mask that I could wear all night as I toss-n-turn was essential to treatment success. It was here that I learned that using the software and understanding the data was essential to optimizing my treatment. And it was here that I learned about the different machines and options available. The "sleep center" never mentioned any of this (nor any of the other interesting OSA info I have learned on this forum). The "sleep center" was either ignorant or negligent (not professional or helpful). The "sleep center" took my money and the insurance money and said call us if you need new supplies (rather than call if I had problems).

Having said this, 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.

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Post by azaloune » Fri Jun 06, 2008 10:21 pm

I changed my pressure from 11 to 11.4. That was the magic change to get my AI to less than 1 and my AHI less than 2.

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Post by bdp522 » Sat Jun 07, 2008 5:01 am

Ditto what DreamStalker said!!!

Brenda

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Catnapper
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change

Post by Catnapper » Sat Jun 07, 2008 5:32 am

I certainly changed mine. Then I talked my way into an auto bipap, and changed it too. When I had a follow-up sleep study, the doctor was surprised to find I had set it at the exact pressures the sleep study proved was ideal.

My AHI is 0.0 at least 3 to 5 nights a week. I will rarely have an apnea and sometimes some hypopnea to bring it up a fraction. Always under 1.0.

I must say the right mask is part of the equation. I cannot achieve those numbers with anything but the Headrest mask and some homemade headgear.

Thanks Rested Gal for the headgear inspiration.

This forum helped me figure out the way to set the machine and to understand in particular the way to set the bipap.

Thanks everyone.


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Post by paloa » Sat Jun 07, 2008 5:52 am

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.

I had been adjusting my own pressure. He was impressed by the additional tracking data I provided. (EPA, pulseox, blood pressure, and subjective feeling tracking)


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