Re controversy over changing pressure

izzyb · Post by **izzyb** » Mon Nov 05, 2007 5:00 pm

When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?

jskinner · Post by **jskinner** » Mon Nov 05, 2007 5:04 pm

izzyb wrote:When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?

Did she given a reason why she belevied they are not accurate?

Wulfman · Post by **Wulfman** » Mon Nov 05, 2007 5:07 pm

izzyb wrote:When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?

These devices are FDA approved. How long do you think the FDA would allow the manufacturers (Respironics, ResMed and Puritan Benntt) continue to market these devices if they weren't "fairly close". A doctor that would say that they go by "how you feel" only wants to make more money by doing more sleep studies. Ultimately it DOES come down to a matter of "how you feel", but if you have the right machine and software, you can get there a lot sooner.

I'm quite sure that the manufacturers wouldn't have put these machines on the market if they hadn't done lots of parallel testing in sleep lab conditions.
These things contain highly sophisticated sensors and software to detect events.

Den

Perchancetodream · Post by **Perchancetodream** » Mon Nov 05, 2007 5:08 pm

I think the accuracy may be a bit less than what you would get if you were wired up at a sleep lab. That being said, the type of sleep you get at a sleep lab is not the same as the sleep you get at home. At least it wasn't for me. (Then again, why would they even bother setting a pressure level on a machine that wasn't accurate?)

Even if the accuracy is not as great, if used properly it is worth more. Look at how the data changes with differing variables, like mask, sleep position, etc. It can help you in making mask adjustments based on how well you sleep.

It seems those figures are likely to be more accurate and objective than "how you feel" in determining your therapy.

But, that is just my opinion, and I am not a doctor or physician's assistant or respiratory therapist or any other kind of health care provider. Just an involved health care consumer.

Susan

echo · Post by **echo** » Mon Nov 05, 2007 6:12 pm

That's funny that most centers now actually use APAPs for the titration itself.

It's even funnier that MY sleep doc said that "APAPs are not accurate", yet they use APAPs during the titration. Go figure. My take on that it that they ahve a hard time determining central's from obstructive events and for some reason "they respond too slowly" (i'm still not sure about either one though).

WearyOne · Post by **WearyOne** » Mon Nov 05, 2007 6:43 pm

izzyb wrote:When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?

Some of us, including me, can't do that because of other health issues. The same daily problems I had before before being diagnosed with OSA--extremely sleepy and tired during the day and waking up a lot--are the same symptoms that can be caused by my thyroid hormones beings off (Graves' disease--on thyroid meds), and/or my female hormones being off (perimenopause). Or just my being plain stupid and not eating and exercising right, or getting in bed early enough.

(Although I snored a lot, I never had the more severe symptoms such as waking up gasping for breath, morning headaches, getting up a lot during the night to go to the bathroom.)

Pam

j.a.taylor · Post by **j.a.taylor** » Mon Nov 05, 2007 7:07 pm

Wulfman wrote:
izzyb wrote:When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?
These devices are FDA approved. How long do you think the FDA would allow the manufacturers (Respironics, ResMed and Puritan Benntt) continue to market these devices if they weren't "fairly close". A doctor that would say that they go by "how you feel" only wants to make more money by doing more sleep studies. Ultimately it DOES come down to a matter of "how you feel", but if you have the right machine and software, you can get there a lot sooner.

I'm quite sure that the manufacturers wouldn't have put these machines on the market if they hadn't done lots of parallel testing in sleep lab conditions.
These things contain highly sophisticated sensors and software to detect events.

Den

I second Den, and I also think that your doctor made a very thoughtless statement.

It seems to me a doctor would rather go with some objective data, even if it does have some inaccuracies, rather than simply subjective information provided by the patient.

Since we can't live permanently in a sleep lab, this "inaccurate" data, coupled with your thoughts on how you feel, should enable the doctor to more effectively guide your therapy.

This is the argument I used on my doctor, when I asked him to prescribe a data-capable machine for me. Fortunately, I have a good doctor who listens to his patients. However, his initial comment to me was, "This concerns me, because sometimes people get too obsessed with their data."

I told him that I thought that his statement was rather thoughtless. Since he also treats my wife, I pointed out that he expects her to regularly monitor her sugar, then I asked him how that was different from me monitoring my CPAP therapy.

He looked at me, and said, "You've made a good argument. I'll wriite the prescription."

echo · Post by **echo** » Mon Nov 05, 2007 7:09 pm

so Mr Taylor, have you become obsessed?

I do remember your post about that, I had a really good laugh.
And yes, my name is echo, and *I* *AM* obsessed with my xPAP data capabilities:)

j.a.taylor · Post by **j.a.taylor** » Mon Nov 05, 2007 7:13 pm

echo wrote:so Mr Taylor, have you become obsessed?

I do remember your post about that, I had a really good laugh.
And yes, my name is echo, and *I* *AM* obsessed with my xPAP data capabilities:)

Obsessed and feeling great!

I knew I heard an echo in this forum tonight.

RosemaryB · Post by **RosemaryB** » Mon Nov 05, 2007 7:40 pm

I don't understand the "going by how your feel" idea for a doctor. Sure, there may be some individual patients who can go by this, but even with xpap, I have some days where I'm more tired than others. I can't always figure out why.

But I recently tried a new mask. Now this mask didn't leak at all during the night, but my AHI was over 11. I felt more tired, but no more than a normal tiredness variation. Last night I went back to my regular mask and my AHI was back in the less than 1.0 range. I feel just as tired today. Maybe daylight savings time? Who knows. There are just too many other factors for this to be dependable for many of us.

The data did tell me that I will need to do something different if that mask is ever to work for me, though. Plus, I'd still be at a pressure of 5 and disappointed that this treatment was not working very well for me even though I'm compliant, without the software, that is.

Obsessed? Yes. Once you have found the cure for all that brain fog, you never want to go back to it. I'm obsessed with feeling healthy and awake. The machine with the data is the best way to get there.

There are worse things to be obsessed about. . .

izzyb · Post by **izzyb** » Tue Nov 06, 2007 4:37 pm

Thanks for all your responses. I don't know whether I want to push this or not. My data on my LCD looks good, but I don't feel "like a new person" and have not "gotten skinny" yet. These were promises made by my doctor on my initial visit. He is a pulmonary doctor, but all my follow-ups have been with a physicians assistant. The PA is not quite as overly optimistic as the doctor. If I decide to push getting a read-out from my Smart Card, will the doctor's office do it or my DME?

LavenderMist · Post by **LavenderMist** » Tue Nov 06, 2007 4:42 pm

It depends on whether or not the doctor/DME has the software to read it. Some doctors dont' have the software and just let the DME handle it. Just place a call to the doctor's office and they can let you know how they handle it.

As far as going by how I feel. I can't do that. I have other medical conditions that influence how I feel. If sleep apnea is your only medical problem then maybe your doctor feels it is sufficient to use that as an indicator. I'm sort of fond of having numbers to look at to gauge progress though in addition to how I may be feeling at that time.

RosemaryB · Post by **RosemaryB** » Tue Nov 06, 2007 8:04 pm

[quote="izzyb"]Thanks for all your responses. I don't know whether I want to push this or not. My data on my LCD looks good, but I don't feel "like a new person" and have not "gotten skinny" yet. These were promises made by my doctor on my initial visit. He is a pulmonary doctor, but all my follow-ups have been with a physicians assistant. The PA is not quite as overly optimistic as the doctor. If I decide to push getting a read-out from my Smart Card, will the doctor's office do it or my DME?

coldnose · Post by **coldnose** » Tue Nov 06, 2007 9:59 pm

When I asked my doctor (PA) about checking my machine readings, she said that they are not accurate and they go by how you feel.

Does anyone have any thoughts on this?

Some use a manometer to check the pressure of their machines. I've checked mine several times and have never found it to be off. Some DMEs will check your machine if you ask. I'd really like to know the basis for your doctor's comment. Ignorance may well be a factor.

If in doubt check your machine's pressure, its easy, even if only to ease your own mind.

Good Luck!

---gary[/quote]

tillymarigold · Post by **tillymarigold** » Tue Nov 06, 2007 10:29 pm

I think there is a possibility that your doctor misspoke and/or you misunderstood or mis-remembered what she said.

My sleep doctor told me to keep an eye on my numbers if I wanted to, but it was more important to find the setting that made me feel the best than the one that gave me the "best" numbers. I think that makes far more sense (assuming one isn't having really bad desats, which I'm not).

And I think it's well-established that the software isn't a 100% accurate picture of how you sleep. For one thing, it doesn't record all your sleep time, it doesn't know when you're awake or asleep, it misinterprets ambient noise as snoring...

Re controversy over changing pressure

Re controversy over changing pressure

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Re: Re controversy over changing pressure