Change in pressure and a question about it....

[sleepyJen]

Hi everyone -

While I've yet to sleep through the night since starting cpap, the past two nights have been really rough - waking up all the time, feeling like I can't breathe, having leaks and having to adjust the nasal pillows often, etc.... Overall I don't really have any big issues (other than being an idiot - I have managed to have 3 or 4 nights where I had the nasal pillows upside down, then several nights where I had the headgear upside down!! what is the matter with me??)

Anyway, I was originally going to post and mention that on my machine, the AHI number, periodic breathing and leak rate had all disappeared and there was a new "90% Pressure" info (I believe that's what it was) - so I was going to ask about that. But, I decided to look at sleepyhead, which I hadn't for awhile as my AHI #'s had been good - and to my surprise, it appears my settings have been changed from CPAP to APAP with a pressure of 9 to 20. My ramp time was changed to 15 mins from 30 (I actually like the ramp time) and the exhale relief was back to 2 (I had changed it to 3).

Is it normal to have this changed without anyone telling me? Would you guys know who changed it - the DME or the Doctor? I see the Dr on Monday so I didn't bother calling today but I'm really kind of surprised by this. I guess more surprised that things can just change and no one gives me a heads up. It explains a lot to know that I was going from a pressure of 9 to it being as high as 17 at times last night.

This is what I saw when I checked Sleepyhead this morning -



I will say that through this whole process my headaches had actually worsened but today and yesterday have been much better - but I need some sleep! It's weird having more energy but being more tired!

Thanks,

Jen

[kaiasgram]

SleepyHead has some little bugs and the change in pressure setting you see might be a reporting bug. Go into the clinician menu on your machine to see what the pressure settings actually are. If you need help with how to do this, see the link at the bottom of my post.

[Pugsy]

Do you by chance have a modem on the back of your machine that the DME could remotely access your machine or have they had the SD card recently. They can remotely change things using the modem or the SD card.

Though your most recent average pressure is showing 4...and that's almost impossible if your minimum pressure is 9 in APAP mode unless you were using the ramp all night.

[sleepyJen]

LOL, yes, I'm still in the compliance portion of the program - so I still have a modem on the back of the machine.

My other clue was that the screen no longer says "C-Flex" but "A-Flex" now - and like I said, the AHI, Leak rate and periodic breathing information have disappeared and were replaced with something that says "90% pressure". So, it's more than just Sleepyhead - the machine is definitely telling me something was changed.

I do not understand about the pressure of 4 though The graphs definitely don't show that.

But would the DME do this on their own? More than ever I feel like big brother is watching!

[Pugsy]

But would the DME do this on their own?

Well.....the aliens didn't do it... I ask them just now and they swore they didn't
So that leave 2 other options for making the change....the DME via the modem or you.
The machine just doesn't go from cpap mode to apap mode all on it's own.
And 90% pressure being reported on the LCD screen is something only APAP mode would report.

Regarding the mystery 4 cm pressure average...just watch it. Maybe there was a bad file or portion which pertained to the calculations.

The statistics page...I just don't get all excited about it because I personally have seen various little inconsistencies..and don't know if it is SleepyHead bug (you know it is Beta software) or just maybe a little quirky file and the calculations.
Nothing major like big problem with AHI or leak on the statistics page...just little things that don't quite make any sense sometimes....like the 4 cm average last night.

[Badnvsleep]

Jen,

From your print out it looks like we started xPAP about the same time. I fought for APAP, Dr script was for CPAP set at 9. Anyways, were you feeling better for the 15 days prior to the change? If so, tell your Dr on Monday when you see him/her and that the setting look like they have been changed and you didn't do it. Ask to go back to the other settings....

I find now that if I am not sleeping for 7-8 hrs a night I feel tired but can make it through the day without a nap. If I can go to bed early enough and get the 7 - 8 hrs I feel better and I am not as tired. I track the number of hours I am on the machine and the number of hours I am sleeping, trying to find the magic range.

Anyways let your Doc know how you were feeling and what you want to do. You should have a say in your treatment and if the doc is any good will listen to your input. They have no way to know how we feel unless we tell them, numbers on a print out are just that.

Good luck.....

[sleepyJen]

HI - I just wanted to come back an update this post -

Shame on me, I didn't call my Dr. about the change in pressure and the side affects I was having. I was to see her about a week later so I thought I'd wait until then. Of course, I'm in NJ....and it snowed....so, the appt was pushed back a week. In the mean time I've had a pounding headache and having a terrible time sleeping.

So, I had my appt today and mentioned to my Dr about the change from 9 to it now being apap 9-20. She pretty much flipped out - I guess the DME made the change and didn't tell her. She said based on my sleep study my pressure should be no higher than 9 and that it can be just as dangerous as having too high of pressure. So, she faxed over a prescription to the DME saying the patient should not be on Auto and the pressure should be 9 - she was also going to call them. She told me I'm not to use the machine at all until they put it back to the way it was - so weird to say that I can't imagine sleeping without it!! I'm relieved though because I feel like crap, but I'm a little worried too as my numbers weren't so great while just on the straight 9 - my AHI was all over the place. But, I felt better. Now I feel like my head is going to explode at any moment.

I'm still floored the DME can just make this change without the Dr's ok....

[chunkyfrog]

I don't think they "can"; they just did.
I'm glad I know how to set my machine.
"Murphy" makes sure anything that can go wrong will do it on the weekend.

[sleepyJen]

Well, regardless, I'm at least glad that I don't have to stick with the auto - which, I wouldn't be opposed to, but the varying pressure between 9 and 20 is rough. I do wish I knew how to change it myself because (and I can't believe I'm saying this) but I dread sleeping without it tonight. I have no desire to feel like I did a few weeks ago - but I also have no desire to have this pounding headache I've been sporting since the change. This does have it's ups and downs, doesn't it?

[Pugsy]

It's easy to change the mode to cpap mode if you wish.
http://www.apneaboard.com/pr-system-one ... structions
It's the very top choice in the clinical menu...mode...either auto or cpap...just change it back to cpap. I imagine the prior pressure setting of 9 is what it will revert back to.
There's a little video at the bottom on the page I linked to above.

[jweeks]

I'm still floored the DME can just make this change without the Dr's ok....

Hi,

I wonder if they were trying to change someone else, and got your machine by accident? At any rate, this is why I bought my two machines outright. I don't want anyone else to be in control of my treatment if I can avoid it. I certainly don't want anyone hacking into my machine and messing me up like this. It might take a few days for your body to re-adapt back to your old settings. For some reason, there is a "pressure hangover" effect where it takes a few days for your body to unlearn the old pressure setting and learn the new settings. You will want to start watching the data again in about 3 days to track your AHI and see what kind of events you are having.

-john-

[sleepyJen]

You.All.ROCK!!!!

Thank you, thank you - I wish I'd mentioned that I wanted to do this 10 days ago!! back to a pressure of 9 on CPAP. At some point I may need to go back to the APAP depending on how my AHI does, but not with the 9-20 range. That was not fun. I am so relieved - as much as I dreaded using the machine, I dread how I felt NOT using it more - I didn't even want to go one night without out it. Now I don't have to.

Again, thank you!!

[sleepyJen]

I'm still floored the DME can just make this change without the Dr's ok....

Hi,

I wonder if they were trying to change someone else, and got your machine by accident? At any rate, this is why I bought my two machines outright. I don't want anyone else to be in control of my treatment if I can avoid it. I certainly don't want anyone hacking into my machine and messing me up like this. It might take a few days for your body to re-adapt back to your old settings. For some reason, there is a "pressure hangover" effect where it takes a few days for your body to unlearn the old pressure setting and learn the new settings. You will want to start watching the data again in about 3 days to track your AHI and see what kind of events you are having.

-john-

thanks John - I was wondering if it might take a few days to readjust. As long as I don't feel like I'm being smothered anymore, it hopefully won't be too bad. I found myself reaching over and hitting the ramp button in the middle of the night just to lower the pressure because it got so bad.

But I am considering doing the purchase outright (especially since the insurance wants us to pay $400 towards the "$4,000 machine" which is I now know is no where near that price). It just seems like less of a headache in the long run. I hate this feeling of being watched - and if the Dr. isn't even aware of what is going on, that's a problem for me.