Breathing Question

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KW1234

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Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
City
Hillsboro
I am finding sometimes at night that my brain is telling my lungs to breathe and then there is like a glitch where I don't breathe which then wakes me up and then I start to breathe but make like a wierd vibration sound for a few breaths then I go back to breathing normally. It usually happens when I am really tired and never when I am awake. I am using a bipap at night but wondering if I should go in and have them adjust the settings or if this is just another aspect of this condition. Thoughts from the collective ALS wisdom?
 
Yes, your data should be analyzed to see what these glitches look like -- they may be central or obstructive, and that would have different implications for settings. Do you have a backup rate set? What kind of BiPAP do you have?
 
I have a Philips Respironics BIPAP AVAP System One. I got it in January. Not sure if there is a backup rate.
 
Not to open my sermon book, but everyone who uses a PAP should know their settings and why/how to change them, which includes knowing how to access at least machine data. This isn't a "set and forget" enterprise in a progressive disease like ALS, and also unexpected events like choking or a cold can change your needs drastically.

For your particular machine, you can write data (which will show the "glitches" and other metrics on how well you are breathing) to a SD card each night and then pop the card into your computer to view/analyze it in Sleepyhead, a free app available for Windows and Mac.

To view your current settings, I have attached a "how-to." Once you are in the Setup tab, you can scroll through the settings and write them down. You should have a backup rate set of 8 or so, depending on respiratory rate, another piece of info you can get from the data. If you post the rest of the settings, I could be more helpful.

Feel free to PM me if you need more info about how to download/interpret the data.
 

Attachments

  • PR System One Philips-Re...ician Menu Instructions.pdf
    1.2 MB · Views: 528
Here is what I have for settings...
Mode S/T
AVAPS on
Tidal Volume 350
IPAP max 20.0
IPAP min 8.0
EPAP 4.0
BPM 8
TI 1.5
Rise time off
Rise time 5
Ramp time off
 
Rise time off? It needs to be on, and then the number (5 at present) should be adapted to your best comfort and overnight data. I'd start w/ 3. Higher numbers means more time between breaths, lower numbers less time.

There are some other settings that might bear tinkering, but the data would help.
 
I feel like I'm having a similar issue. I get into a comfortable breathing rhythm then as soon as I fall asleep I get a huge gust of air with a lot of pressure that wakes me up. This inevitably leads me to taking the bipap off. Apria dropped the machine off and did not school me on settings. I go to my first clinic on the 20 so hopefully the rt will teach me. I use the resmed air curve 10. It does have an sd card but I wouldn't know how to read it. I know I have had episodes but have no idea what that means
 
Kelly, it's a progressive disease and you should know how to tweak them yourself. You can read the AirCurve data using Sleepyhead, which is free. Which AirCurve do you have? (Letters after the "10" in model number)

From your description, your target volume, inspiration time (Ti) and/or backup rate may be set too high. I'm happy to help optimize any time.

Best,
Laurie
 
It's air curve 10 st-a
 
Do you know how to read the settings? Hold the home button and dial down together for 3 seconds. Move the dial to Settings and scroll down to read them all. Then exit. If you tell me what they are, together with your height/weight and any pulmonary disease/test info, I can suggest how to tweak them.
 
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