Trilogy

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Brent1

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Jun 26, 2021
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PALS
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09/2016
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US
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LA
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Jena
I’m new and this is my first post. Diagnosed ALS 9/2016. Started trilogy a few months due to fatigue and results from sleep study. I’ve been using the nose/mouth mask. It’s going ok except sometimes I’ll develop leaks during the night. I’m making my self keep up with the set rate but really could go a little slower. Also I’ve tried moving to nasal only but man it gets carried away at times. If my mouth opens or just cracks it’s a new ballgame. Even when not it feels that my cheeks are being puffed up. Any thoughts or suggestions?
Thank you
 

lgelb

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Hi Brent, and welcome. There is no reason to "keep up" with the set rate (actually, you shouldn't even be conscious of the rate). The idea is to support your natural breathing, not change it. Frequently in ALS, settings are started too high. I'm happy to help you fix them to your comfort and will message you about that. You might need a full face mask for now if your mouth opens a lot, but you could also try a stretchy hairband around your chin just to see if it helps. Some PALS go with a full face mask at night and a nasal mask during the day.

By adjusting the settings, we can also get rid of the puffed cheeks and reduce leaks so they don't interfere with your sleep as much. When you are getting too much air flow and/or it's coming in too fast, the amount you can't process ends up somewhere else.

Best,
Laurie
 

MToole

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Apr 16, 2016
Messages
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I use nasal pillows. I also use a chinstrap to keep my mouth closed.
 

Brent1

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PALS
Diagnosis
09/2016
Country
US
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LA
City
Jena
Thank y’all very much. Laurie I’ll get that info as soon as I get a few minutes and get back to you. Again thanks very much.
 

KenM

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Jun 21, 2019
Messages
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Reason
PALS
Diagnosis
03/2018
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NC
City
Charlotte
Brent I fought the trilogy for two months before learning to work with it. Now it feels natural. Give it time. As for leaks, you need to replace the pads regularly and make sure the mask is on tight enough. The team providing you with the Trilogy should be able come to your house to help adjust it.
 
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