Another newbie needs help/advice

[gljo1215]

Hello everyone!

Where to start??? Sorry, this is going to be a loooong story. I’ve been lurking for about 4 months.

My kids have always told me that I snore (who doesn’t?) and I was a bit tired in the mornings… but I figured if I stayed up till after midnight and got up at 6 AM, I deserve to be tired.. Sleep Apnea? Not ME! So I asked my doctor about a sleep study and went in for that two years ago tonight. It was a cold and nasty night, freezing rain predicted and I could hear what I thought might be sleet hitting the window all night. Since I am a ‘chicken driver’, especially on ice, I slept very little, thinking of the drive home at 5 AM. Also, strange bed, (I am used to a waterbed) hospital smells, wires all over, etc. In the end, they claimed that I did sleep a bit and I needed a CPAP. Dang! I only agreed to do this test because I was trying to convince my husband that HE needed one! (and still does!)

Three months pass before my family dr tells me the results of this test. He forgot and I didn’t really want to know about it. I don’t have a copy of it, but from what I remember, they set my machine to 15 with a 15 minute ramp. The DME basically shoved the machine into my arms, asked if I had any questions and pushed me out the door. That was the end of them.

I tried, very unsuccessfully, to use the darn thing. I hated it from the minute I set it up. Lots of air in my stomach, sore throat from mouth breathing, you name it. About the middle of May, I got a terrible cold that eventually went into pneumonia and that was the END of that damned ‘germ delivery system’! I packed it up and stored it in my closet until mid-Sept 08. I roomed with a friend at a seminar for a week who used a CPAP and she nagged me to get it back out. I was soooo tired all the time, memory slipping, all that stuff, so decided to give it another try.

I found this forum and a different DME that had me try several different masks. After reading about the Liberty on this website, I asked to try that one. It is certainly the best of the bunch that I have tried and think I could do this using it instead of the one they gave me with the machine. I know now that I NEED this thing on my face at night so I am determined to DO IT and improve my life!

Starting out, I could only stand it about 2 hours at a time. The new DME had set my machine for Auto 4-20. Every time I woke up and looked at it, it was still on 4. I found after reading on the forum, that a pressure of 4 did NOTHING for me. I think I woke up after two hours because I wasn’t getting ENOUGH air, so I would take the mask off.

I stopped in at the DME one day with my card to have them read it and found that it only records if you use it for a least 4 hours, so I had no information to read. I asked them about bumping me up to 6-20 and she told me that she could program the CARD to make that change…I was pretty skeptical that the CARD was going to do that, but I took it home and tried again. Still on 4 – big surprise. Sooo, I went in search of directions on the forum to do it myself. Thank heavens for this forum!

I was able to change my pressure to 6-20 and want to bump it up again in a few more days. Am I on the right track, here? I am able to keep the mask on a bit longer now, but still not all night. When the pressure gets up to about 10, it wakes me up! Several times I’ve looked at it and it was up to 10, 12 or 14. Once last night, it was at 18.5!!!! Eeek! I usually end up taking the mask off about 5 AM and go back to sleep for a couple of hours. I can remember dreaming during that time, but no dreams with the mask on...

I am never sure if my mask has been leaking when I wake up…. If my mask was leaking badly, would that cause the pressure to keep going up and up or what is going on here?

How can I be getting better sleep if I keep waking up every time the pressure changes? Does this happen to others? I’ve been working at this nearly every night now since Nov 1, 08 and I’m still tired. A bit better, but not wonderful.

I know I need to get the software and a reader to track all of this on my own. Should I get Encore Viewer or Encore Pro? I’ve noticed lots of people have the Pro, but I get the impression it is no longer available? Where can I find it? Do I NEED it? My computer has XP on it, not Vista.

I have a two year old Remstar Auto w/C-flex (just over 200 hours on it!) and a Liberty full face mask. I will add this to my signature when I figure out how to do it!

Thanks for everyone’s help the past 4 months. I know I would not be able to do this without your help!

gljo

[Slinky]

There are others more well-versed w/the Respironics devices than I am so I'll stick with telling you how to add your APAP, mask and I assume humidifier as well to your sig.

Go to User Control Panel to the left near the top of the page and click on it.
Near the top of the page the second tab is labled Profile, click on it.
Look to the left of the page, the second choice down is Edit Equipment, click on it

I would suggest that you use Text for displaying your equipment. The icons are cute but they are a PITA for us to check which device you have before offering suggestions, especially for those of us w/slow speed dial up, as we wait for the new page w/your item on it to load.

[kteague]

Hello and welcome. Glad you decided to jump in and join the party after watching a while. I just want to throw out there that if you are extremely sensitive to pressure changes, you may wake less with your machine in cpap mode at a fixed pressure with exhalation relief. At higher pressures, some say a bipap helped them. Hopefully you'll get some suggestions here that help you figure out how to make this best work for you. Takes a while sometimes, but I for one feel it was worth the effort.
Kathy

[jules]

you can change the pressure on your machine yes ----- however before you get into making radical changes, which machine do you have exactly? does it say m series on it? is the humidifier on the front clear tank or under a black cover? What is the model number on the bottom of the machine?

there is plenty of data on the card for sessions under 4 hours if you know how to find it - all the DME's care about is compliance so that is 4 hours to count - she obviously didn't care to go further or might not have even known how to do it -

[bdp522]

I am never sure if my mask has been leaking when I wake up…. If my mask was leaking badly, would that cause the pressure to keep going up and up or what is going on here?

Yes. If the mask leaks the machine will raise the pressure to try and compensate, then the leak gets bigger, the machine goes even higher, etc. The machine can also chase snores. You snore, the machine raises the pressure, you snore some more, etc.

Once you have the machine adjusted to your needs, most of this should stop. Your lower number needs to be where it stops the majority of the snores, and respiratory events. Once you get there, the runaway pressure changes should stop. You may need to tighten up the range some by lowering the upper pressure of the machine. This way the machine won't be able to get to those real high pressures. Some of us can't sleep well through the machine changing pressure and do much better on one steady pressure(cpap mode).

The software and card reader is available at cpap.com our host. Encore pro is no longer available but encore viewer will give you the same info, you just can't make changes to settings with the card using viewer. Not a problem, because we can tell you how to do that manually.

Brenda

[gljo1215]

Thanks to all who have replied! Slinky, your directions were perfect! Got that done!

Jules, the humidifier is a big tank on the front of the machine. Forgot to check the model number on bottom, but it says Remstar Auto on the top. The DME had me borrow an M series to try an at home titration, so I know which one you mean. Good to know that my card does have some information on it! When I get some software, I will probably need your help to read what little information is on the card. I'm sure my DME won't be much help.

Kathy and Brenda, thanks for your suggestions. After reading stuff on the forum, I have wondered if I should use the machine in cpap mode instead of auto. My BIL has been on CPAP for several years and has his set to 14, no ramp. At first (two years ago) I couldn't imagine how he could stand that... it felt like a hurricane blowing in my face when I used mine back then. I could NOT get to sleep! I think now, I am a little more used to it so it could work....

Maybe I will try bumping it up to 8 and setting the top pressure at 16 and see how that goes. I will try each way for a week or two and see which way works best. I would kill to sleep through the night again and not be soooo tired in the AM.

Good to know that the pressure increase is likely from snoring or leaks. Will have to order the software to see what is really going on. I am amazed that with Pro, you CAN make changes with the card. I thought the gal at the DME was pulling my leg when she said that!

Thanks again for all your help! Off to order that software and reader!

gljo

[elader]

I have to say, the whole auto range thing hasn't been too successful for me. I get the best sleep, lowest disturbance from leaks, and best AHI numbers when I set my machine for a narrow range. I was titrated at 8cm, but using the auto for a while clearly showed that my AHI dropped lower at 9-10cm and stayed realtively low after that. But when I set the range large (e.g. 9-16), the machine often went after leaks and made them worse and woke me up, etc...) - I now have the machine at 9-12cm and my AHIs are low (below 4, with the A part under 2 - untreated I am at 74.5) and I don't wake up with some crazy leak going on. The other thing critical for me is washing the skirt of the mask and my face EVERY night so it's clean and grippy and not sliding around.

You people have also cured me of nasal decongestants and flonase with your suggestion of using the netipot.

I don't know what I would have done without the caring people on this board.

[rogier40]

It sounds to me as if you're easily disturbed by the machine or leak noises. Foam earplugs really helped me. With them, the machine has a distant, faint sound. You will mostly hear your own breathing, which can be relaxing. Leaks can still be heard, but it is just a whisper.

I've also had good success using either melatonin or other sleep aid before bedtime. It helps me overcome the initial mask and pressure sensations at start. Now days, I'm usually out before the end of the ramp. Wishing you success, stay with it!