Trilogy 100 Causing discomfort

[Janie H]

During a 3 month check up, the trilogy guy turned my air up from 24 to 28. I have had this deep cough and runny nose since, the first couple of days I would wake up with a mouth full of hot water but never threw up, has anyone else had this happen?
He said that I was maxing out the 24 and needed more air.

Janie

 

[JimInVA]

Janie,

Why did the trilogy guy turn up your settings? Where you having difficulty breathing? Or did he do so as a result of some measurement or indication? How were you feeling about the setting before it was changed? Darcey's trilogy is set for 12 ipap/5 epap. I've heard that the epap ALWAYS needs to be less than the ipap. The water in your mouth... is that coming from condensation created by the humidifier and temp differences between hose temp and room temp? If so, you may find that turning the humidifier to a lower setting may help. We've found that with the room set at 71 degrees, the humidifier setting needs to be just shy of the "2" setting to keep moisture from accumulating in the hose and mask. Hope you can sort this out...

Jim

 

[gooseberry]

If your water tank is filled over the line that can happen. Like Jim said it can also be a condensation issue. My husband is set for volume not pressure so I dont know about the bipap settings. If you get water in the little blue line it will alarm like crazy and you will need to change out the circuit of tubing...that is if you have the same tubing.

 

[Janie H]

Hi Jim,
Thanks for answering, the water in my mouth was like when you are getting ready to throw up but I never did. I don't know if all bulbar patients have this issue but as much air goes into my stomach as in my lungs when I'm asleep. I wake up with my stomach hard as a rock and feeling like I'm going to be sick, I have a bad habit of eating late and laying down, I have been working on that.
He turned my machine up because he said I was maxing it out at 24. I checked my settings and the epap is 5 and ipap is 14-28, my major issue is my breathing, I usually have a headache for a few days after he makes changes but never anything like this. My caregiver called yesterday and they said that my lungs haven't expanded like that in a while and I would get used to it, my ribs were sore Sunday but not since,I must be getting better.
Janie

 

[Janie H]

Jim, I don't have a humidifier, it wasn't helping and I sent it back.

Janie

 

[Graybeard]

When VA did the sleep study on me, they had it turned up so high that it was blowing air into my stomach, so I didn't sleep the first half of the night, until they turned it down to half what the doc said it should be for a PALS.

The local rep who services non VA patients, said it shouldn't be so high that it's uncomfortable. Thanks to instructions from Laurie, I run mine 15, 10 and 5, and it's like hypnosis.

 

[Janie H]

I'm still waking up with my stomach hard as a rock, coughing up a LOT of phlegm, all clear, I feel OK after I am up for a while. I go to the clinic on the 19th, trying to wait until then.

janie

 

[lgelb]

28 is a high IPAP. For that matter, so is 24. I don't know what mode you have set, what your volume target is, nor from what data the tech decided you should be maxed at 28. It is very possible that your lungs can't deal with that much air, that you are swallowing air, as you say, and that's why you feel sick. It's not just the nausea that I would worry about, though I'm sure it's no fun, but if your IPAP is more than your lung capacity can handle, that could make your lungs worse.

Do you want to turn it down? I really think someone should.

I've posted the quick start guide here:
https://www.dropbox.com/s/14xi89z1z8boypi/Trilogy100QuickStartGuide.pdf?dl=0

 

[Janie H]

Thank you, 24 felt OK, I have a hard time breathing but we are going to cut back to 26 and see how that does. I have a T that hooks my nebulizer to my trilogy and helps get the steroids and albuterol into my lungs. Thanks for the link, saved to my favorites.

Janie

 

[Janie H]

Went to the clinic yesterday, they said I was hitting 27 so they did not turn it down, they changed the air flow to longer breaths and gave me a third inhaler to use in the nebulizer/trilogy, said my breathing has gone from 74 in June to 41 yesterday. Still have lots of air in my stomach, maybe my lungs are that bad.

Janie

 

[affected]

Janie did they have any suggestions about the air going into your stomach?

So sorry to hear your breathing has declined, but don't focus on those numbers if possible xxx

 

[Janie H]

Tillie, no suggestions, they just mostly laughed it off, said that maybe changing the speed of the air might help. I don't feel like it has, maybe it is good to be coughing up all this mess.

Janie