Trilogy Encouragement and Tips

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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, in order to 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!
 

beauty4everyone

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Wouldn't my CPAP help keep lungs and diaphragm exercised better? Not being able to breathe well has been a fear since childhood. Probably because of all the colds I had. B
 

lgelb

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No. The CPAP allows for at most a 3 cm difference between IPAP [air pressure that you breathe in] and EPAP [air pressure that you breathe out against]. The BiPAP for a PALS should be at a minimum 4 cm difference, usually more like a minimum of 6 and often higher (note: this difference is not related to progression, but on individual need).

So the CPAP is keeping you from deep breaths as your muscles weaken and prevent you from expelling CO2 as efficiently as you used to. Retaining CO2 will only accelerate the loss of respiratory function.

In addition, having to breathe out against more pressure than you need to (the EPAP) in order to have a high enough IPAP to get air in (because a CPAP can only achieve that difference of 3, and many machines can't accommodate any difference at all), speeds up the rate at which your muscles are overworked and therefore weaken more.

Let me know if this does not make sense -- it's important that you switch out.
 

beauty4everyone

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Thanks much 🌻. I'm breathing less well. I'll see what my Dr. will do. B :cool:
 

KarenNWendyn

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Laurie, my pulmonologist keeps insisting that an EPAP of 5 is physiologic. When I used to take care of vented patients in the ICU, we would set PEEP (positive end expiratory pressure) to 5. PEEP = EPAP.

I don’t think my pulmonologist has a lot of ALS experience, so I’m guessing that PALS are just different than your garden-variety vented ICU patient. Right? I know you recommend EPAP of 4. I’m curious about the rationale. Thanks.
 

lgelb

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For machines that can do it, I'm not averse to trying EPAP=3 in ALS, either (Dr. John Bach is the leading proponent of that, though we disagree on IPAPs), but many PALS seem to do well at 4 so I more often say that. There's a fair amount of literature suggesting that there's actually no "physiologic PEEP," but it's understandably been overshadowed by the controversy over weaning protocols. Of course, with PALS, arguing over how best to mimic beforehand what will happen when you d/c a vent doesn't come into play.

However, in ALS, exhaling against pressure is obviously harder on weak muscles than letting the IPAP push air in, which is one good reason to start at a minimum EPAP and go up if needed. Plus, the higher the EPAP, the more CO2 is likely to stick around.

So the machine's low is a starting point. Not everyone can do EPAP=3-4. Some need a higher set pressure, and some even need the AVAPS-AE mode where EPAP varies. Some PALS have some kind of pre-existing obstruction and/or an obstructive component in their ALS, though the latter often lessens in late disease.

So low EPAP for PALS may not relate to the ICU people as much as, say, muscular dystrophy, spinal muscular atrophy, GBS, etc. In each of these, BiPAP use has grown and with good results. Even in connective tissue disorders or any myopathy, you are starting to see use.

Honestly, were it not for the fact that BiPAPs are more pricey, everyone on CPAP would be on one already today, because so much more customization, which many non-weak people can benefit from, is possible. But that is a payer thing and will take time.
 
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