Final diagnosed and first night with CPAP with ???s

[TheRealMacGyver]

I finally dragged my sorry butt in and did the sleep study only to find out what I already know! My final follow-up is tomorrow afternoon and I will get my prescription. In the meantime I learned that my no-so-great insurance with Blue Cross has a $250 deductable and then they will split 50/50 the rest of the cost. After doing the simple math I realized I would be out of pocket way more than I had planned. So I took to Craigslist and found a local CPAP for $200! Since I already know my pressure setting is a 9, I wasn't too worried about it. (I've thought about taking this route several times before and completely avoiding the sleep study, but figured it would be best to go through with it).

So I now have a Phillips Respironics REMstar Pro C-Flex + with humidifier and a Resmed Mirage Quattro full face mask. (yes I've been doing my homework).

It wasn't long after I got it home and sanitized it real well that I was able to hack into it and change the settings to 9.0 So, that is the short story and last night was fine, everything working well and I slept 20 times better than at the clinic! So here are my thoughts/comments/questions:

I feel like the 9.0 setting on my unit is not as strong as the 9.0 at the clinic, but I can't be sure about that, because there are a lot of factors to consider. My Resmed mask is much more comfortable than the one at the clinic. In fact I still have a sore nose bridge from the one they had on me. They tried the nose only mask, but I really could not breathe, so they went to the full face and I think they over tightened it or it just didn't fit.

The C-Flex feature seemed cool at first, but I ended up turning it off, because the sound of the unit revving up/down just bothered me.

The ramp up feature (again seemed cool) is probably more important if you have a very high setting, since my 9.0 setting doesn't really bother me that much right out of the gate.

A few times in the night when I had to get up to go to the bathroom, I just pulled the hose of the headgear and left it on while I took care of business. When I did this the air volume and sound was really high. Is this normal?

Should I bring my new (used) unit to the Dr's tomorrow for any reason?

Any thoughts about my purchase?

Thanks.

[BlackSpinner]

I just pulled the hose of the headgear and left it on while I took care of business. When I did this the air volume and sound was really high. Is this normal?

Amazing, isn't it? It sound like a vacuum really reving up, but when the mask is on after a few moments, it doesn't feel like there is air moving at all. Just remember that for those middle of the night wakeups where your brain decides to freak out that it can't possibly breathe with that thing on your face.

[TheRealMacGyver]

Yes it is amazing. I felt like that last night at times (that I wasn't feeling the pressure), but then when it is off the mask its blowing like crazy! I guess that is normal then.

The other thing I forgot to mention is that I removed the data card so my info would not store with the previous owners info. I'm guessing if I format it through my computer it probably won't be able to read it at all. So, is this something I should bring to the doctor tomorrow?

[Xney]

You won't feel so much pressure as the test because you get used to it, probably. Go by the numbers you get whether you need to increase it

As far as the data goes, you can reset the data on the machine and card in the clinician menu. (note: will erase your data up to now)

[TheRealMacGyver]

Okay I didn't see that in the clinicians menu, but maybe that was because I had already removed the card? I'll have to put the card in and try it again. Probably is a good idea to record some data i guess. Is there software available to read the card?

I really feel like my first night was a real success. I wasn't so sure after the sleep study night, which was pretty horrible overall! I'm looking forward to night two!

[mzlaura1884]

I am on night 21.... tonight week 3! I've had to put my hand over the vent on my full face mask quite a few times to make sure the air was coming out. Like you i have a relatively low pressure my min is 6 and max is 10. I thought the night of my titration that my mask wasn't working or they shut the machine off but surprisingly enough i just got use to the pressure with the air coming through that it just doesn't phase me anymore. Now i know when my mask is on my face that even though it doesn't feel like the air is coming through it is! I clean my mask usually 1-2x a week and my humidifier at least once a week some do more some do less. I love the full face mask because even though my mouth gets dry somedays the other night my left nostril was blocked and the air actually cleared it up lol with any other mask that would be impossible to handle.

When i get up to the bathroom i also tend to take my mask off and leave it connected to the climateline hosing it does cause a very loud noise like you described and i even have a different machine then you. Mine also causes pretty large leaks when i do this though because it sees it as the hose being hooked up but the mask is just blowing out air not where it should be... i really need to disconnect the mask but most of the time i just get up 5 seconds of less so i don't bother. Congrats on your great 1st night and welcome to the world of sleep apnea.

[TheRealMacGyver]

Mzlaura: thanks, this is something I've been putting off for way too long. If you notice I joined the board a long time ago looking for advise and finally did what I needed to do! At my titration study it was really unexplainable, because while I like the less intrusive nose mask, I just could not breathe only through my nose without opening my mouth, but after the full face mask was on I had my mouth closed and I was only breathing through my nose! I can't explain it, but I am planning on staying with the full mask until I get some hours under my belt. Then maybe I'll experiment a little.

[Pugsy]

You have a SD card that stores the data? Then that means you have a PR System One machine and SleepyHead software will work with it. See the links in my signature line.

To reset the machine so prior owners data is not showing on your reports you have to first remove the SD card.
Stick it in the computer for right now.
Got to the Therapy clinical menu and reset the therapy data to zero. You have to hold down that selection until the machine beeps. They say 5 seconds but it seems more like 10 to me.
The machines blower hours won't change but the therapy data will reset to zero.
Don't put the SD card back in the machine yet..use your computer to erase the SD card then put it back in the machine and the machine will do its recognizing thing and everything will start fresh.

You can't erase the SD card from within the machine's settings...that reset to therapy zero is only for the data that is stored on the machine.

The Therapy section is the lower left on the LCD screen...this is where the AHI and large leak % is shown...you have to do the get to clinical set up menu to be able to view the "reset data" prompt. It is not in the same area that you go to for setting of the pressure.

[TheRealMacGyver]

Thank you pugsy. I'm on my iPad now, but I'll download that program and check it out. The way I'm seeing this whole thing is that I am the best person to take control of my situation! The whole sleep study gimmick could have been done in one night, but the they wouldn't make as much money! ( sorry just had to vent a bit )

[Pugsy]

Totally understand the need to vent. Been down that road myself more than once. My own titration study was the study from hell with a sleep tech from hell and I won't even start my rant on that. I might as well have not done it as I barely got enough sleep to even come close to finding a suitable pressure. Fortunately I had the help of some forum members here and I was able to fairly quickly get things pointed in the right direction.
I swear if I ever see that sleep tech in a crosswalk I will be tempted to run him down....

Please add your equipment to your profile so people won't keep asking (and they will). Since you got it off Craigslist I doubt it is the 60 series machine with the heated hose.
So go to your Profile and equipment tab and the equipment look for the grouping that starts with PR System One and there you will find your equipment. I know you don't see PR on it but the PR is for the Phillips Respironics that you do see on the machine. The PR S1 part tells us it is the newer model of the Remstar Pro CFlex because Respironics has used that particular name through at least 3 models that I know of. All the way from an old model that collects no data to the current model that does collect data.
The humidifier is simply the PR System One Heated Humidifier.

If you don't have the provider/clinical manual for your machine send me a private message and I will get you a link for a direct download of the pdf. It has some additional information in it besides how to get to the clinical menu that may benefit your understanding of what you see on the reports as well as some of the other functions you see in the clinical menu.

CFlex is entirely optional...so use it or don't...up to you. My first machine had CFlex and I couldn't really tell that it did all that much but my second machine had AFlex (your Pro won't offer it) and I fell immediately in love with AFlex. Other people hate it. You will find that pretty much anything related to cpap and masks comes with a YMMV sticker. One person's treasure is another person's trash. What work's for one person may be a dismal failure for the next person.

[jzap]

My PR System 1 has two settings in the setup menu for auto-on and auto-off.

With auto-on set to "on", the machine starts up when you put on the mask and take a couple breaths. With Auto-off set to "on" the machine shuts off when you disconnect the hose or take the mask off.

I have auto-on set "on" and auto-off set "off". When I get up during the night, which is less often than before I started CPAP, I just disconnect the hose at the mask and hit the button (actually the knob) to shut down the blower. When I come back, I plug in the hose, take a couple breaths and the machine picks up where it left off.

At first, I found the ramp to be rather annoying. The RT had it set to start at 4 and take 20 minutes to ramp up to my setting of 8. I felt like I wasn't getting enough air. I reset the start pressure to 6 and the time to 5 minutes. I really may as well have it turned off.

Good luck.

[TheRealMacGyver]

My PR System 1 has two settings in the setup menu for auto-on and auto-off.

With auto-on set to "on", the machine starts up when you put on the mask and take a couple breaths. With Auto-off set to "on" the machine shuts off when you disconnect the hose or take the mask off.

I have auto-on set "on" and auto-off set "off". When I get up during the night, which is less often than before I started CPAP, I just disconnect the hose at the mask and hit the button (actually the knob) to shut down the blower. When I come back, I plug in the hose, take a couple breaths and the machine picks up where it left off.

At first, I found the ramp to be rather annoying. The RT had it set to start at 4 and take 20 minutes to ramp up to my setting of 8. I felt like I wasn't getting enough air. I reset the start pressure to 6 and the time to 5 minutes. I really may as well have it turned off.

Good luck.

I'm going to try that auto on method tonight, thanks.

[cherylgrrl]

after the full face mask was on I had my mouth closed and I was only breathing through my nose!

I was convinced I would have to have a full face mask, because I suffer from allergies and seemed to have a stuffed up nose every night of my life! But when I put the mask on and opened my mouth, the air would rush out, my cheeks would puff out, and I would immediately close my mouth! The other thing that has changed is that my stuffy nose is gone. In 3 months of PAP therapy, I haven't once had a problem with this once-nightly occurrence. Someone else told me that when you stop breathing at night, then finally start it usually with a big gasp of air, and this dries out your nose and mouth. Think of diving down under the water holding your breath then opening your mouth wide and gasping for a big breath when you come up. So perhaps there is something about this that made me congested.

At any rate, I quickly made the transition to a nasal mask and never looked back. It is so much more comfortable and less obtrusive! You might surprise yourself if you try a nasal mask again at home after you get used to the whole CPAP regimen.

[gertrude]

A few times in the night when I had to get up to go to the bathroom, I just pulled the hose of the headgear and left it on while I took care of business. When I did this the air volume and sound was really high. Is this normal?

If this bothers you, you can always turn the machine off, and then turn it back on when you come back from the bathroom. This creates a gap in the flow data that is useful if you want to know what time you got up. And in my case (with an apap) it starts back up at my minimum pressure and stays there until I go back to sleep, so I can tell how long I laid awake after my bathroom trip. For someone who has insomnia problems, that can be a useful thing to track.

I haven't done what you are doing -- leaving the machine running -- but I would guess that it registers as a huge leak.

[TheRealMacGyver]

You might surprise yourself if you try a nasal mask again at home after you get used to the whole CPAP regimen.

Yes, I agree. I also think it would be nice to switch around between them, or at least have the option. The bridge of my nose is looking pretty gnarly right now!

If this bothers you, you can always turn the machine off, and then turn it back on when you come back from the bathroom. This creates a gap in the flow data that is useful if you want to know what time you got up. And in my case (with an apap) it starts back up at my minimum pressure and stays there until I go back to sleep, so I can tell how long I laid awake after my bathroom trip. For someone who has insomnia problems, that can be a useful thing to track.

I haven't done what you are doing -- leaving the machine running -- but I would guess that it registers as a huge leak.

I think you're right, I will turn the machine off from now on and set it for auto on. I have now erased the previous owners data card and it appears that it will now begin recording my data. I'll give it a week or so and see if I can read it with the sleepyhead software.

Thank you all