on CPAP for 5 years still don't sleep all night.

goose · Post by **goose** » Sat Sep 29, 2007 9:10 pm

I'm not a doctor so this is just an opinion!!!

Shoot for an Auto CPAP machine with A-Flex (Like the RemStar Auto with A-Flex M-series manufactured by Respironics. There are other Auto machines on the market, but read the software comment below). The auto machine will allow you to titrate yourself at home, as it will vary the pressure within a specified range to determine what pressure works best for you. At least that's the theory!!!

That said, it is difficult to monitor your treatment without the software and card reader. Presently, the software is no longer available to the patient -- general consensus is because it contains the ability to re-write the prescription on the card. (I happen to believe there are $$$ involved somewhere!!!!) There are other ways to change the parameters in the machine -- you don't need the software. It just makes it a bit more convenient.
Rumor has it that sometime in October, Respironics will be releasing a software package called Encore Viewer (or something similar) which will be available to the patient. What is in it or what data it will show is unknown at this point, but we all hope that it is basically the same as Encore Pro without the prescription section (which makes the most sense).

Someone smarter that I will have to explain all the numbers. What I look for is the AI number, the HI number and the AHI.....There are threads at the yellow light bulb that can hopefully clear up some of the info....
The AHI (which consists of the AI added to the HI) should be less than 5 to be considered "normal", but we all shoot for zero -- some of us actually get to zero and stay there.
Personally, my numbers are about AHI of 2.5 average for the past 6 weeks, so my intention is to up my pressure by 1cm H2O (to 11) and see if I can get it a bit lower -- I'm very happy with 2.5, but I know it can be better.
I have not experienced that "burst of energy" that some talk about. I still get up groggy at times, until I get my jolt of caffeine, but I do notice I have more energy throughout the day and I'm not falling asleep during the day.

I hope this has helped a wee bit -- there's a ton to learn!!! Again, knowledge is power -- read, read, read!!!!

Take care -- Good luck
cheers
goose

wabmorgan · Post by **wabmorgan** » Sun Sep 30, 2007 12:14 am

goose wrote: Presently, the software is no longer available to the patient -- general consensus is because it contains the ability to re-write the prescription on the card.

You can still get the software.... IF you know where to LOOK;)

wabmorgan · Post by **wabmorgan** » Sun Sep 30, 2007 2:14 am

Also.... if they pulled the software becasue you can re-write the Rx on the smart card and chage the Rx....

You can also change the Rx on the CPAP as well and you don't even need the software to do that

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Smart Card

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Smart Card

goose · Post by **goose** » Sun Sep 30, 2007 12:13 pm

That said, it is difficult to monitor your treatment without the software and card reader. Presently, the software is no longer available to the patient -- general consensus is because it contains the ability to re-write the prescription on the card. (I happen to believe there are $$$ involved somewhere!!!!) There are other ways to change the parameters in the machine -- you don't need the software. It just makes it a bit more convenient.

For all intents and purpose the software is unavailable -- Yes, if you search hard enough you can find it, but it may cost you an arm and a leg. It's probably more prudent to wait to see what Respironics releases in October.
Also -- if you do find it, please do not post the location here!!!! When posted here, the site tends to disappear rather quickly.....

As noted in the original post, you don't need the software to change the settings, it just makes it more convenient......

cheers
goose

mel334 · Post by **mel334** » Wed Oct 03, 2007 9:03 am

Well I had or attemped to have my sleep study last night but couldn't sleep so they sent me home at 2 am. I'm ready to give up. At least they sent me home with a ff mask so I will try that tonight. My husband has some xanax but I read that taking it with sleep apnea is not a good idea. What to do? I'm worn out, getting more irritable by the minute and feeling utterly hopeless.

Slinky · Post by **Slinky** » Wed Oct 03, 2007 9:14 am

If I were you I would take the one Xanax. You need some sleep. If it works you can use another one for another study and sleep long enough to get some results. At this point, who cares if it causes a few more "events" during the study?

At least using once at home will let you know if it will get you some sleep or not so another study isn't wasted.

Or maybe it will get you a loaner autoPAP for a home titration.

gasp · Post by **gasp** » Wed Oct 03, 2007 11:01 am

mel334 wrote:Well I had or attemped to have my sleep study last night but couldn't sleep so they sent me home at 2 am. I'm ready to give up. At least they sent me home with a ff mask so I will try that tonight. My husband has some xanax but I read that taking it with sleep apnea is not a good idea. What to do? I'm worn out, getting more irritable by the minute and feeling utterly hopeless.

Welcome!

I've read through this thread and applaud you for being diligent! Your stick with it power is amazing.

I can't believe a sleep center would send you home at 2am when there is still a good 6 hours work with. They should have given you something to help you sleep there, and worked with different masks, pressures - as the expression goes - until the cows come home - which is in the morning.

When I had trouble with a FF mask, wanting to tear it off my face, the sleep tech introduced another mask, gently rubbed my forehead, and said I hope this one works better for you. Just relax and we'll find one you like. Which we did. It's not the mask I'm on now as I've gone through several since. Keeping with the forum has helped me find what I need for successful therapy.

If it's any encouragement, I've actually slept almost 10 hours once! When my asthma isn't kicking up, I usually sleep 8 hours now. This after a sleep study that showed an average hypopnea index (AHI) of 52.8. Not good - in the severe range. Now I have an AHI regularly under 1, and rarely over 5. From 52 down to 1 - even if these numbers have no meaning, it is clear how much my apena events at night have been reduced. It's like being 52 pounds overweight and now only being 1 pound overweight : )

Best wishes!

mel334 · Post by **mel334** » Wed Oct 03, 2007 11:23 am

It looks like you have to be your own doc to get results. My husband & I have the same Resmed S7 and he has heated humidification but doesn't use it so I swapped the fronts of our machines and will sleep with the Ultra Mirage FF mask tonight that they sent me home with. Theh tech gave it to me on the QT. Going to fit it this afternoon and maybe take a nap or just lay there for awhile to get used to it. I love the swift but because I am a mouth breather it just ain't working even with a chin strap! Hopefuly this will do the trick. My machine is set at 15 or 16. Is this going to be too much and cause air leaks? Is there a way to set the machine lower? Thought I'd try this tonight before I call sleep doc tomorrow to get it set down if I need it. I really value all the help I am getting here. I JUST WANT TO SLEEP AND FEEL HUMAN AGAIN.

Mask	Humidifier

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