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Experiences Trilogy Machine

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dldugan

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During my first clinic visit yesterday it was found that my breathing while sleeping needs assistance and they want me to use a Trilogy while sleeping. Is there anything I need to know about this process.
 

Nikki J

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There will be lots of experienced people who will comment. Generally people feel better with early respiratory assistance once it is needed

It MAY affect your qualifying for trials and/ or radicava. That is not saying delay because it is a proven intervention to enhance quality of life and probably quantity too

Good luck

Moving this to general for better visibility
 

lgelb

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Just FYI, it's OK to use one post for two topics.

The Trilogy is a portable BiPAP. It has an internal battery so you can go out with it, and move around the house with it. It comes with a humidifier so that the air is easier to breathe.

A BiPAP is a machine that delivers one air pressure for breathing in and a lower one for breathing out, so you don't have to work as hard to breathe. PALS usually have a "target volume" set so that the pressure adjusts to keep the amount of air that you move constant.

Like any machine used in health care, the Trilogy is not "set and forget" and often it is set wrong to begin with. So usually some tweaking (something I frequently help with here) is needed at the beginning to get it right and along the way as ALS progresses.

What you may not always hear at the clinic, but what I preach here, is that every PALS/their CALS should know how to adjust settings, if only for emergencies, and feel comfortable in doing so, for both comfort and safety.

It can seem pretty freaky to wear a mask and have air blowing into it. There are many types of masks, some for the nostrils only, some that cover the whole nose and others that cover the "full face." There can also be big differences even within the same type of mask, so again, you might try a couple of masks before finding the one that's right for you. Getting the right size and letting the suction determine the fit, instead of overtightening, are both key.

Spending the time to make BiPAP work is worth it because it extends both quantity and quality of life, and therefore is part of every published guideline set about treating the disease.

Let us know when you get it and we will support you however we can.

Best,
Laurie
 

Doglady

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I'll alert you to a "mistake" I made when I first started using my Trilogy. For the first couple of months I only used it during the daytime up to about 4 hours a day. Every time I talked to a health care professional about it they would ask "are you using it at night?" and I'd say "no". Nobody specifically said that I should use it at night. So I finally got the message and switched to overnight use and immediately felt better. Day 1! I slept better and was more refreshed in the morning. I had more energy all day long. Sharing this just in case it is helpful to you...
 

lgelb

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Doglady, that's insane that they didn't specify starting it at night. Yes, that's an excellent point!
 

chally

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Nighttime trilogy help me! I use it daytime some too

Getting use to mask can be tough I just tried not to think about it


Good luck
 

Kristina1

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I'm still trying to get used to mine. It's an adjustment, but I have had a lot more energy during the day so I know it is helping. Laurie was a big help for me figuring it all out!
 

dldugan

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Got my Trilogy a couple of days ago. Trouble breathing through nose so I have a mask covering the nose and mouth. First night I could not go to sleep using it so I removed it and got 7 hours of sleep. Was able to fall asleep with the mask on last night, but awakened after 4 hours and cannot get back to sleep. Thinking I may not use it tonight and see if I can get some sleep.
 

Nikki J

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Often people try it at first while relaxing during the day- watching tv or something. It may help you acclimatize so it will be easier at night. It does sound as it that is already happening but maybe a little day time practice will speed the process. Good luck
 

Kristina1

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dldugan, ive had mine for about exactly one month now. Laurie helped me make sure my settings were appropriate (they weren't- her help made a big difference in my comfort). You could PM her. Beyond the settings aspect--

-I too have a full face mask. I was told to first practice using it while relaxed- while watching tv for example. I did about 15 min at a time.
-When I felt ready to try it at night I initially used a low dose sleep/anxiety aide to fall asleep with the mask on. My doctor provided a very low dose lorazapam.
-When I woke up, whether it had been 2 hours or 4, or whatever, I removed the mask rather than trying (and failing) to fall back asleep in it. I slept the rest of the night without it.
-Over time I was waking up later and later- like having it on 8 hours before waking up and removing it. Around that time, I tried keeping it on to fall back asleep, and was able to do so without trouble.

Take it slow. Don't rush yourself. Keep in contact with the prescribing doctor to discuss issues. Laurie here on the forum is a big help. Let us know how it goes!
 

dldugan

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I have been practicing during the day. Had to learn to let the machine follow my pace and not react to every change.
 

Nikki J

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Great. It sounds like you are well on your way then. Hope you getca good night’s rest abd your next try at night goes well
 

dldugan

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Have not used the last 2 nights. When using at night I wake up after 4 hours and cannot get back to sleep with the full mask on or off. I have used prior to going to bed.

When not using Trilogy I can get 7 or 8 hours sleep. Any suggestions on getting use to the nighttime mask?

Also, have tried Mucinex, Sudafed, and salt spray to open nose. Still stuffy most of the time. Any suggestions?
 

Kristina1

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i forget, have you considered a sleep medication?
 
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