Adapting to Trilogy with Bulbar symptoms

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PrimaVera

New member
Joined
Apr 23, 2020
Messages
9
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Does anyone have advice on how to adapt to a Trilogy while having severe bulbar nerve symptoms? That means that my lip seal is weak, so my cheeks puff right out and air gets blasted out of my mouth when the Trilogy ramps up the pressure. I use a chin strap and full face mask. I have had the machine about two months now, and previously used a CPAP, so am not struggling with claustrophobia.

Despite several respiratory tech visits to tweak the settings, it still puffs me so full of air during the night (within 2 - 4 hours) that I feel my stomach and intestines will explode. It is VERY uncomfortable and I cannot imagine what is going on...I am not knowingly fighting the Trilogy as I am asleep when this is happening.

I almost feel my machine is possessed because it seems to have a mind of its own. It seems to want to breathe more times per minute, and at higher pressure, than I need at this time. Any advice would be greatly appreciated.
 
I would be happy to help you tweak your settings, which is very commonly needed. RTs operate within a somewhat different context. Most of the PALS I help need less aggressive parameters set. The pressure and interval/shape of breaths can all be adjusted. If the pressure is too high, that will definitely break your fragile seal and puff out your cheeks. I'll PM you.

Best,
Laurie
 
Hi,

I had the same happen to me. This was my first machine ever. I was so freaked out that I could not bring myself to even try it again. No compassion or advice from the person who set me up. Just watched me struggle.
 
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