Stop self adjusting your pressure.

sleepie · Post by **sleepie** » Tue Nov 06, 2007 12:22 pm

i'm starting to think the software is only a guide---but i know that if my ahi increases --i can get to the dr without waiting 2 months feeling like crap....i plan on this---as soon as the ahi starts to increase steady in a trend---i'm calling the doc..i never want to feel like i did the first time i saw him-----pat

rested gal · Post by **rested gal** » Tue Nov 06, 2007 12:27 pm

Wulfman wrote:The "software" has always seemed like an enigma to me.

(for the most part)
The doctors don't believe in it or trust it (they think they know better). And, they want the patients coming back to them. (the CONTROL factor = $$$)

The DMEs don't use it because they hand out the cheapest machines to patients in order to maximize their profits.....so, the machines don't even have the capabilities to utilize it.

Den

An enigma indeed. I guess the only reason anything more than "compliance" was put into the software at all was for the occasions when doctors ordered an autopap for a couple of weeks or a month of titration at home.

And of course we know that most of them (doctors/DMEs) will never even GLANCE at the Daily Details pages. They'll stop at "AHI" and 90 or 95% pressure used. We're lucky the Daily Details ever got included at all, I suppose.

rested gal · Post by **rested gal** » Tue Nov 06, 2007 12:33 pm

sleepie wrote:i'm starting to think the software is only a guide

You're right, Pat. That's what it is.

It's good to have all the guidance we can get, even if none of the guidance (from doctor, DME, RT, people on the message board, info on the internet, books, cpap software, etc.) is 100% accurate.

That's when we have to use our own brains. To pick and choose within all the forms of guidance, figuring out what we think will work for us.

Even if "what works" includes tape, tights, and twirling dials. The three T's!!

DreamStalker · Post by **DreamStalker** » Tue Nov 06, 2007 12:39 pm

sleepie wrote:i'm starting to think the software is only a guide---but i know that if my ahi increases --i can get to the dr without waiting 2 months feeling like crap....i plan on this---as soon as the ahi starts to increase steady in a trend---i'm calling the doc..i never want to feel like i did the first time i saw him-----pat

Yep .. the software is like a road map to show you where you been and where you need to go.

tillymarigold · Post by **tillymarigold** » Tue Nov 06, 2007 12:40 pm

bear1mdr wrote:Thank you, I now understand why there are no other RTs on this board. Rude, rude, rude. Sorry I tried to help.

Frankly, I think what's "rude, rude, rude" is waltzing in here and yelling at us like we were children when you known NOTHING about us or our medical condition or our training and experience.

Not that it's any of your business, but my (AASM accredited) sleep doctor told me that I SHOULD adjust my own pressure, Mr. Smarty-Pants, and I'm not about to stop following my doctor's advice because some stranger on the Internet told me too.

ozij · Post by **ozij** » Tue Nov 06, 2007 12:44 pm

[quote="bear1mdr"]rested gal, you got most of the BIG reasons right but there is a little more to it then that. The software is taking in data through the tubing only which means that even though it can "sense" and record changes in flow, vibrations, etc... it can not directly measure some very important readings, which should be measured, (e.g. oxygen saturation, CO2, etc…) in order to determine whether or not a change in pressure is needed. There are also outside forces at work during an average night sleep, which the software may not be able to differentiate correctly, such as movement, coughing, swallowing, etc... and can be misinterpreted by the software as an apnea event.

There's more but I have to get back to work now, sorry.

WearyOne · Post by **WearyOne** » Tue Nov 06, 2007 12:48 pm

I don't think very many people here would argue that a sleep study is better overall, and more thorough that the xpap data for that one night. But some other good points to remember about the sleep study, as other have stated:

1. Some people have a hard time going to sleep in the sleep lab, with all the wires and being in a strange environment. Some don't sleep at all, or not enough to meet the 2-hour insurance requirement.

2. Because of #1, some people will take sleeping aids, which, even if okayed by the doc, could skew the results.

3. Some people have a REAL hard time sleeping with all the wires AND the mask in the titration. For example, I know my heart rate was all over the place on my titration, and I know it was because I kept waking up and panicking with the mask on.

4. It's only a one-night deal. With the machine, you can look over a period of time and see trends, and then go from there.

5. Some people use an oxymeter they can wear all night and that records the data. (Expensive, though.) That would help with knowing the O2.

I'm self-employed, like you are, bear1mdr. During the time I had my original sleep study and the titration, I was on COBRA from my husband's job, which paid for all but 40 bucks on each study. Now, COBRA has been exhausted, and because of health issues, OSA included, I have to take a $5,000 deductible to even have a chance at being able to pay for insurance., and even then, the premium is over $500/month. Therefore, any sleep study now would be out-of-pocket, and I don't have the money.

Still need to know what alternative there is to mouth-taping, as chin straps only keep the chin from falling down, not the lips from parting. (Maybe you answered this? This thread is generating so many posts, I may have missed it!)

Thanks!

Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration

sleepie · Post by **sleepie** » Tue Nov 06, 2007 12:51 pm

i have gotten no guidence from dme or my dr---other than put the mask on and you will feel better----see ya in 6 months----thats it!!!---everything else i have learned here since aug26-07---all of the people who post here are more of a help with this,than anything else--had i not found this place my blower would have been in the closet in a week ---thanks all----pat

WearyOne · Post by **WearyOne** » Tue Nov 06, 2007 12:54 pm

ozij wrote:I don't know if anyone can die of an overdose of pressured air - but I do know people have died of too much insuline. Nobody would think of keeping diabetics from monitoring their blood sugar levels, and giving themselves insuline.

Oh, good point. What would too much pressure over an extended period of time cause, other than possibly centrals? (Not that that's good, but that would show on the data, wouldn't it? )

Pam

Guest · Post by **Guest** » Tue Nov 06, 2007 1:04 pm

Yo, Bear1 - Who here hired you to be their RT? Not me. You're the one that started a flaming thread telling us we're all idiots.

Mind your own patients, why don't you???
Babs

Wulfman · Post by **Wulfman** » Tue Nov 06, 2007 1:07 pm

Anonymous wrote:Yo, Bear1 - Who here hired you to be their RT? Not me. You're the one that started a flaming thread telling us we're all idiots.

Mind your own patients, why don't you???
Babs

Now, Babs........ You know that the more of these RTs, DMEs and doctors we can "educate", the better off lots of people will be.

Den

Guest · Post by **Guest** » Tue Nov 06, 2007 1:12 pm

Oh all right, Wulfman... I'm feeling grumpy and getting a cold. Sorry...

Huggers,
B.

ozij · Post by **ozij** » Tue Nov 06, 2007 1:13 pm

Forget the data Pam. Too much pressure is too unpleasant - I can't imagine anyone staying on too much pressure for an extended time. (If by extended you mean more than on night). If they did it to themselves they'll change it the next day. If the sleep lab did it to them (or the idiot doctor -- are you there Den?) they'll either change it (Den went from 18 to 10) or -- and that's the saddest opition - get rid of the machine. Which reminds me -- daddyof7, are you reading this thread? And how are you doing?

Too much pressure on cpap is not hidden -- like eating too much sugar and developing insuline resistance, or too much fat and clogging your arteries is. Too much pressure on cpap is something that bothers the heck out of you - and you want to stop it.

By changing your own pressure you stop it.

People stick to the therapy bacause it makes the feel so much better - and this is a delightful case where better subjectively and better objectively go hand in hand.

People leave this therapy bacaus it makes them miserable, the don't feel it helps them - and then they live with untreated sleep apnea.

A data reporting machine and software help people tailor the therapy so that it works for them. And they know when it works.

O.

Wulfman · Post by **Wulfman** » Tue Nov 06, 2007 1:23 pm

I'm here, ozij......and, you can add UFO13/Steve to the "over-prescribed" list, too.
I went from 18 to 10 and ultimately to 12. Steve went from 18 to 12 and then to 13.

Best wishes,

Den

ozij · Post by **ozij** » Tue Nov 06, 2007 1:32 pm

Wulfman wrote:I'm here, ozij......and, you can add UFO13/Steve to the "over-prescribed" list, too.
I went from 18 to 10 and ultimately to 12. Steve went from 18 to 12 and then to 13.

Best wishes,

Den

Which coincidentally also shows us the people correct their own pressure when they've set it too low as well...

O.