Old 10-10-2018, 12:36 PM #1 (permalink)
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Default Experiences Trilogy Machine

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.
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Old 10-10-2018, 01:04 PM #2 (permalink)
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Default Re: Experiences Trilogy Machine

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
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Old 10-10-2018, 01:06 PM #3 (permalink)
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Default Re: Experiences Trilogy Machine

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
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Old 10-10-2018, 01:22 PM #4 (permalink)
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Default Re: Experiences Trilogy Machine

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...
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Old 10-10-2018, 01:26 PM #5 (permalink)
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Default Re: Experiences Trilogy Machine

Doglady, that's insane that they didn't specify starting it at night. Yes, that's an excellent point!
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Old 10-11-2018, 06:55 PM #6 (permalink)
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Default Re: Experiences Trilogy Machine

This was a recent thread on BiPAP you may have already seen, but itís worth reading in case you missed it.

Getting bipap
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Old 10-12-2018, 07:20 AM #7 (permalink)
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Default Re: Experiences Trilogy Machine

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
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Old 10-12-2018, 11:08 AM #8 (permalink)
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Default Re: Experiences Trilogy Machine

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!
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