How do I know CPAP therapy is working?

msteve · Post by **msteve** » Fri Dec 22, 2006 5:49 pm

I've logged over 1700 hours on my CPAP machine during the past year; but I cannot honestly say that the therapy has made the slightest difference in how I feel during waking daytime hours. How do I know that CPAP therapy is working and not just a monumental waste of time, effort and discomfort?

I'm using a RemStar Pro2 with a humidifier. The air pressure prescription is set at 13 and I have C-flex set at 3 and the Ramp Startup at 9. My situation is complicated by my cleft-palate. The nasal-mask doesn't work well because it leaks through the defect in the roof of my mouth and blows through my lips even when I use a chin strap. And the full-mask doesn't keep a good seal if I my sleep on my side (preferred position). I get a terrible case of dry mouth with both masks, even with the humidifier set on 5 (its highest setting) after about 2 hours and have to get up and rinse my mouth with Bioetene. It is rare for me to tolerate more than 6 hours of therapy per night -- usually more like 5 -- and my sleep is always interrupted at least three times by broken seals, dry mouth, etc. No wonder I don't feel rested in the morning.

I'm sure it's not supposed to work this way. But I have to admit that I'm becoming discouraged. The only reason I've stuck with it this long is that I'm really motivated (fell asleep driving on the toll road and only avoided wrecking the car by God's grace).

Snoredog · Post by **Snoredog** » Fri Dec 22, 2006 6:04 pm

Is your pressure too high or is it too low? What events seem to disturb you the most? Mask leak? You don't know without the reporting software.

The reporting software is about the only thing I can suggest.

Your machine should be recording all that data and should be able to guide you in a direction.

You really feel the effects of your disorder if you stop treatment, I could never drive more than a couple hours without cpap.

Wulfman · Post by **Wulfman** » Fri Dec 22, 2006 6:08 pm

As per Snoredog's post, here's a link to the software and card reader.
It's the only way you'll know.
One year is a long time to struggle without knowing what's going on.

https://www.cpap.com/productpage-bundle ... undle.html

Den

msteve · Post by **msteve** » Fri Dec 22, 2006 6:24 pm

Thanks folks. I didn't even know about the software. I'll discuss this with my medical equipment supplier after Christmas. They've Never looked at what's recorded on my card.

Wulfman · Post by **Wulfman** » Fri Dec 22, 2006 6:29 pm

msteve wrote:Thanks folks. I didn't even know about the software. I'll discuss this with my medical equipment supplier after Christmas. They've Never looked at what's recorded on my card.

If you're talking about your local DME supplier, I doubt that they'll be of much help. Lots of them don't know about the software, either......or, if they do, how to extract the "full details" reports. If you want to buy it from them, they may either not sell it to you or will quote you prices that will leave you choking.

Good luck,

Den

Goofproof · Post by **Goofproof** » Fri Dec 22, 2006 7:54 pm

It sounds like you are mouthleaking and losing most of your treatment. Due to your problems, you must make friends with a ff mask or tape your mouth air tight. Until you do this you are spinning your wheels. After that much machine time I would also kill the ramp, shouldn't be a need for training wheels.

But by far, keeping the treatment pressure inside your airway is the only way the treatment works. The software guides you in seeing where the problem is and can help you find the best pressure. Jim

_________________

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

dataq1 · Post by **dataq1** » Fri Dec 22, 2006 7:58 pm

In addition to checking the cpap.com website for the Encore Pro software and reader as Wulfman suggested, you may also want to check with billmyinsurance.com
This is the "sister" company of cpap.com. Besides a price difference, they will bill your insurance co for you.
Check it out, and good luck

Snoredog · Post by **Snoredog** » Fri Dec 22, 2006 8:28 pm

[quote="dataq1"]In addition to checking the cpap.com website for the Encore Pro software and reader as Wulfman suggested, you may also want to check with billmyinsurance.com
This is the "sister" company of cpap.com. Besides a price difference, they will bill your insurance co for you.
Check it out, and good luck

mattman · Post by **mattman** » Fri Dec 22, 2006 9:54 pm

You can take your card to your CPAP provider and they will be able to download the card for you (This is typically a free service) and give you copies of the reports.

Most of the companies I have worked with will mail you a card and a postage paid envelope to return yours so you don't have to go in if you don't want to.

However, by going in to the facility you could also discuss your situation with a therapist and possibly get suggestions on various possibilities. You could also possibly try different masks and such.

Is your doctor a sleep specialist? It definately sounds like you have a more unique situation that won't fall under the typical suggestions or solutions. If your doctor is not a sleep specialist I might suggest looking one up in your area through:
http://www.absm.org/diplomates/listing.htm

mattman

blarg · Post by **blarg** » Sat Dec 23, 2006 4:24 am

That or they'll act like you're asking them to reveal state secrets and you'll just do it yourself. lol. Do make sure you're not deleting the data on the card (it does by default) just in case someone else wants to look at it.

Guest · Post by **Guest** » Sat Dec 23, 2006 9:21 am

blarg wrote:Do make sure you're not deleting the data on the card (it does by default) just in case someone else wants to look at it.

And how do I do that? The owner's manual doesn't discuss this at all.

Goofproof · Post by **Goofproof** » Sat Dec 23, 2006 11:49 am

Anonymous wrote:
blarg wrote:Do make sure you're not deleting the data on the card (it does by default) just in case someone else wants to look at it.
And how do I do that? The owner's manual doesn't discuss this at all.

You have to have the software, a file on the disc, can change the REG to not to autoerase the card. Jim

blarg · Post by **blarg** » Sat Dec 23, 2006 5:28 pm

Anonymous wrote:And how do I do that? The owner's manual doesn't discuss this at all.

Rested Gal wrote:Here's how to change the setting so it will ask you each time, the way SelfSeeker described:

In your computer, go to:

C:\Program Files\Respironics\Encore Pro\Utilities

In that Utilities folder, you'll see two files called:

"Don't erase data after download.reg"

and

"Erase data after download.reg"

Doubleclick the little icon in front of the file called:
"Don't erase data after download.reg"

A "Registry Editor" window will pop up, asking you:

"Are you sure you want to add the information (etc.) to the registry?" Click "Yes".

From then on when you do a download, it will be like SelfSeeker described. You'll be asked if you want to delete the data. Tell it not to. Then the data will all be there on the card when the DME downloads it. As SelfSeeker said, there will be no indication of any kind that you've been downloading data and looking at your data all along.

Click here to see the full thread that came from.

msteve · Post by **msteve** » Sun Dec 24, 2006 6:22 am

I was embarassed to even try it; but, hey, desperation leads us to try anything. I taped my lips shut last night. And guess what? Dry mouth gone completely. Didn't use the Ramp feature either. Only problem I had was that I need to buy a wider tape and refine my taping procedure a bit. But I think I'm really onto something here. The nasal mask worked fine for me with the tape (although I switched to the FF in the middle of the night when I found my tape leaking). I only used my mask for a total of 6 hours last night. But I actually feel rested this morning. Eliminating the leaks must have finally helped the therapy to work. Isn't it amazing that none of the "experts" at the sleep clinic and the CPAP provider never suggested tape?!

mattman · Post by **mattman** » Sun Dec 24, 2006 6:41 am

msteve wrote: Isn't it amazing that none of the "experts" at the sleep clinic and the CPAP provider never suggested tape?!

Heh. As you can imagine they pretty much can't since there are some obvious hard-core liability issues involved in suggesting someone tape thier mouths closed.

It's why you always get much more arcane suggestions (such as this one) from groups of users than you do from the folks who provide them. Like the time my dad showed me how to set the timing on a car by straddling the engine block and sticking a long screwdriver down into the cylinder while someone else keeps turning the ignition just enough to cause the engine to turn over a couple times. Is it safe? HAYEEELLLLL no. Would a shop ever suggest someone try this? Hayyyulllll no. Did it work? Damn right it works.

I'm glad it worked for you and that you are on the right path! I still really suggest contacting your DME and getting that card read too!

mattman