Trilogy Encouragement and Tips

lgelb

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The extent to which you're NIV-dependent, even 24/7, is not correlated with IPAP max or Vt. At all.

Height, weight and age are weakly correlated with settings, but not in a way that you have a chart for it. They suggest a starting point, along with pre-existing lung conditions, etc.

You might need to go up on your pressure later, alternate between up and down, go down till the end, with really infinite settings possibilities. I see people dying at very low settings, very high settings, and everything in between. It is the use of optimally-titrated NIV, not a certain settings profile, that keeps you going.
 
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Kristina1

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I'm going to go against the grain and say I love my full face mask. But I had to try a lot of masks to find what worked for me. I also experimented with chin straps and mouth tape and hated it. When I first started trilogy it felt way too strong to me, and Laurie helped me decrease my tidal volume. But over the last year I felt I needed more and gradually increased the tidal volume. It's now back to where I started and feels really comfortable, even though back then it seemed unbarable.

This week I switched from my trilogy to a VOCSN because I liked the idea of having fewer devices to haul everywhere. I am using the exact same mask and same humidifier setting, but somehow my mouth isn't getting dried out! With trilogy I would wake up with my moutth so dry I couldn't move my tongue it was horrible and the humidifier didn't help. Somehow that's not happening with the VOCSN! I have no idea why but I'm really happy.
 

KarenNWendyn

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Kristina, what’s VOCSN and why do you think it keeps your mouth from drying out?
 

Jimi

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I have to wear a mask 24/7 so a full face during the day would be a problem. I even eat with the mask. What is the model of full face you liked? I use a dreamstation bipap during the day but use a trilogy at night. I noticed right away that the air from the trilogy was definitely dryer. Luckily I got used to it. Thanks
 

lgelb

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Many PALS wear a full face mask at night and use a nasal mask or mouthpiece ventilation during the day.

The Trilogy's humidifier is frequently rated as inferior to other machines'. At home, tweaking room humidification and temperature may help. Clean machine and furnace filters are also really important. Also, I believe that a heated tube is a Trilogy option, as it is for the Astral.
 

beauty4everyone

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Although I use a CPAP for Sleep Apnea, I Don't use the water chamber. The congestion was upsetting for me. Although I froze the Distilled Water, crushed it and put it in the chamber because cold air helps me. I finally opted to decrease the room temperature. That helped both of us a lot (he has one, too). Just a thought. May blessings abound. B.
 

lgelb

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A fan at night helps also if you like cooler air. You can position the airflow so it's as direct or not as you like. But Beauty, you should be using a BiPAP with ALS, not a CPAP, which can address both your pre-existing sleep apnea and the muscles that fail in ALS. Using a CPAP makes those very muscles work harder.
 
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ejb24d2

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Update: My mom found a mask that she likes and she is up to about 5 hours at night! All your encouragement, tips, and suggestions really helped. I know this diseases can be so cruel, but I’m so thankful that the ALS community is nothing but loving and supportive! Sending love and prayers to you all!
 
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