Status
Not open for further replies.

BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
It's been three months and I simply cannot sleep with my trilogy. I've tried countless times and the best I've done us about 20 minutes,then wake up for an hour or two, then try again and same thing. I just can't do it. I've been a light sleeper since I was a teenager. I've always averaged about 5 or 6 hours max. I need those 5 or six hours.

I can wear the trilogy through the day by breaking it up in two or three sessions totaling 4 to 6 hours but can't handle it while trying to sleep. Everyone always says how important it us to wear it at night to help with breathing and sleep but it's just not working for me and quite frankly I'm getting pretty sick of it. If it helps me through the day then great. However if I have a build up of CO2 at night that releases me, I consider that a blessing.

Vince
 
Vince, I'll sound like a broken record but if your sleep was OK pre-Trilogy, there has to be something fixable wrong related to the Trilogy -- the mask, the settings, the humidification, and/or your position in bed relative to the hose/machine.
 
Vince, thanks for this post!

My PALS just received his Trilogy Friday. He made it 3 hours and took it off. He says he can't get comfortable with it, he is usually a tummy sleeper. Also says he doesn't breathe like that, it gives him too much air? I am going to call today about the too much air part but I am hoping we can figure out the sleeping position part because I understand that the Trilogy at night is important.

Just wanted to say thanks and I hope you get some tips to make it more tolerable.
 
Vince and soonerwife, don't give up on the Trilogy. My PALS had been trying to use it at night for 6 months and was ready to give up on it. The respiratory therapist who was coming monthly was not helpful. Laurie is extremely knowledgeable about the Trilogy and was able to instruct me in adjusting the settings and turning off various alarms. She asked us questions like is it too fast/too slow, too deep/too shallow, etc. While using the machine during the day, I had Frank concentrate on the answer to each question and emailed Laurie with his responses. She suggested adjustments that worked. Now Frank is using it nightly and sleeping much better.

Sharon
 
Laurie is a wonder with the settings. The mask can also be this issue if PALS is moving around at night. Sometimes the mask works here, other times the nasal pillows are easier to use. We have different settings for each, as too much pressure through the pillow openings is not comfortable.

Keep trying!!
Becky
 
Does anyone use the Trilogy while sleeping and sleep on their stomach with no pillow? If so, what mask do you use?
 
I tried all the masks available. The most comfortable one for me is the Reperonics Dreamwear mask. It's a sling type mask that just fits under the nose. The hose fits on top of the head and it has a swivel to allow you to sleep on your side. Prior to my RT coming last week and changing my card and resetting all my settings, I did fine as long as I used it during the day. I'm just such a light sleeper, always have been. The sound of the machine, let alone having something attached to my face, just will not allow me to sleep.

Laurie, I'm going to have to go back through my emails to try and find the settings you gave me a few months back.

Vince
 
Folks,

I was in the same boat. I know settings can be changed, but I don't know anything about that. I too would make daytime use of the unit, but couldn't manage sleeping with it, but then one day after about four months... It happened.

I use it nightly now. I tend to wake at least twice a night, because of mucus flow, so I often take it off at the first wake-up, and then put it back on at the second wake-up.

I tend to be a persistent individual (so I've been told). Hang in there. In the long run you'll be better off for it.

Toodles
 
Vince, I had/have the same problem with the BiPAP. I'm an irregular breather and always have been. I think it had something to do with my heart arrhythmia and never took deep breaths with my diaphragm. I was a chest breather. After I gained 30 pounds, the arrhythmia got lots better and I started taking deeper and slower breaths. But I still breath in an irregular pattern.

I think the way I breathe contributed to my never feeling the settings were correct. Laurie gave me the best settings but I hated the full face mask and they wouldn't give me a nasal mask or nasal pillows even though I am not a mouth breather.

Finally, after issues with Medicare, I gave it back and am starting again.....most likely with a Trilogy.

I'm sorry that you're going through all this but I understand.
 
I have a cpap with a nasal only mask. I do sleep on my belly
 
Using it has been tough. I don't like it at all. I do use it to sleep with and recently had a second set of settings added to allow me to use it with a nose mask during the day. The noise of the machine, the pressure, the forced breathing patterns, the itching on my beard, it all is just annoying and makes night time very difficult. However for me I simply would not be able to breath lying down with out it. When your body gives you no choice then you will do what you have to. Until then do what you believe you need to do. I will not judge your decision to not wear it. It is just another part of this awful disease and the choices we are forced to make.
 
Status
Not open for further replies.
Back
Top