Trilogy Encouragement and Tips

ejb24d2

New member
Joined
Feb 8, 2020
Messages
5
Reason
CALS
Diagnosis
00/0000
Country
US
State
MO
City
Blue Springs
My mother has been using her Trilogy machine for the last three weeks. I think we finally found a mask that works for her. However, she is having some struggles. Any insight or encouragement for the follow concerns would be appreciated.

1. She hates using it at night. She wakes up panicked with it on and asked to have it taken off immediately. She then struggles to fall back asleep. Do the nights get better or has anyone else struggled to stay asleep with this machine?
2. Because the nights have been hard, she is having to get in her time during the day. Does anyone have any suggestions on transitioning from using it during the day to getting in more hours at night?
3. She has had a couple panic attacks while wearing it because she hates the feeling that she cannot remove it because she cannot use her arms. She goes from being okay one minutes to asking for it to be taken off immediately, and then is breathing heavy because of the panic. Anyone else had this feeling?
4. Her nose has been really dry and has had some bloody noses since using the Trilogy. Has anyone else had this problem?

Thank you so much in advance for any insight or encouragement!
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
602
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
My DH used his Trilogy at night only, but did better with nasal pillows rather than a mask. Maybe the smaller nasal pillows will help her feel less trapped. It took a few attempts to get the right ones - ask your RT or Trilogy DME to bring different ones for her to try.

We also asked for a humidifier for the Trilogy. It was just a small vessel which you fill with distilled water. That helped with the dryness.

So much is really trial and error. Good luck.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,055
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Everyone should have a humidifier!!! It's not "set and forget" any more than the pressure is, either. Weather and our internal environment changes. Your mom might also benefit from ointment in her nostrils at night, like RoEzIt, A&D, grapefruit seed, whatever she best tolerates. With bloody noses, I would start with a nasal mask that does not have prongs or pillows, just goes over the nose.

She is likely waking up because of either discomfort or incorrect settings. If the suggestions in this thread don't work, I'm happy to help you adjust the settings to her comfort. You can't be panicked about BiPAP in deep sleep.

There are many mask options. The Circadiance versions (nylon instead of silicone "body") may be less claustrophobic since they are lighter. They also offer a lighter tube connection as an option (the tubing nearest the face), called a featherweight tube. However, as Jersey points out, no mask works for all.

cpap dot com offers free return insurance on many masks so you can try before you buy.

Best,
Laurie
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
76
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Tell your mom for me, she is not alone. I will not use the mask that covers the nose and mouth, it feels like you're trapped. I am paralyzed from the neck down, so please forgive me if I over step. It is not just the mask it's the head gear too that causes that claustrophobic feeling. The little one that just covers the nose works for me at night, with one moderation. I have a high nose ridge, so the mask was uncomfortable until we put a little piece of foam on the bridge . During the day I use the pillows. They irritated my nostrils, so I did what I did for my sons football mouthpiece I boiled some water dunked my nose pillows into for a few seconds, I popped it into my nose, it was warm not hot and it fits perfectly without any issues. Oh one other thing if your Mom has longer hair separate the straps on the head gear and place the bottom strap against the back of her neck under her hair, also the hair near her ears should be put behind her ears. Believe me it goes along way to relieve the claustrophobic feelings. (when I say "I" did or do it is my aids hands. )
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Please let your Mom know that she absolutely can adjust to this! I have been dependent on non invasive ventilation (bipap/trilogy) for breathing 24/7 for 2 years with about another year of night use prior. I am paralyzed from the shoulders down. I have got things down to a science. As Laurie pointed out, the settings may need adjusted. The trilogy has 2 different setups you can switch between. (one for day and one for night) I use the dreamwear nasal mask and nasal cushion (the nasal pillow is the one that goes into the nostrils and I don't like it as much - both types of nose pc fit the mask) What follows is a description of my system. Please know that this is only what has worked for me and it is very comfortable. It may be a completely different for your mom. Maybe it will give you some ideas. As breathing becomes more difficult, the machine will naturally start to seem not so bad relative to the alternative. Sorry in advance for boring everyone with my description. ..... (I copied and pasted from an email I wrote to someone else )

I have been on NIV 24/7 (bipap) to breathe for 2 years. Will die without. I use a dreamstation bipap pro while awake (it is much smoother, but does require a slight breath input to trigger) and switch to the trilogy at night (although any bipap with a backup rate would work) I bought the dreamstation with my own money. I have a battery backup for it and have tested it at my current pressure settings ) and it provides 22.75 hours of backup power. I have 5 batteries @$130 each. Also use an older system one bipap in the bathroom with a battery backup. All machines are unlocked and I adjust them myself for comfort. Relying on a respiratory therapist for adjusting things is not a guarantee of comfort! Night time settings are important and require some experimentation. I live in Southern California - fairly low humidity. I started out using the humidifier. I found this gave me chest congestion. I have not used the humidifiers for the the last 1.5 years. I'm not too dry, nose is just the right moisture level. Fluid intake is 2 cups of black coffee and 1.5 liters of water per day. No soda or alcohol. I also use a cough assist every morning 6 sets of 6 deep breaths. I'm not congested, but the breathing exercises really keep things clean. I look forward to it like it's my work out. I use the Dreamwear nasal mask/nasal cushion. Here is the best part: at night I use 3m micropore surgical tape 2" width to tape my mouth shut (almost ear to ear - across the mouth) and also I use a chinstrap. Between those two things, my mouth is sealed and sees very little airflow. I have minimal to none dry mouth. With the breathing setup, I am proud to say that it is very rare that I need help for the night (12am to 8am) I don't nap in the day and average about 6-7 hours sleep. I have tried many things and this is the most consistent way for me. It just works and I don't dread the night. Just takes some getting used to
 
Last edited by a moderator:

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Not sure if I can post this link ( search TheLankyLefty27 dreamwear on YouTube ) His channel is great! Cpap/bipap info and mask reviews. Very relevant info for PALS

 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Also, I found that the trilogy is noisy especially when using the dreamwear mask, as the air passes close by my ears. My dreamstation machine is pretty quiet. A quick $23 fix was to order a Fisher & Paykel HC150 Heated Humidifier Chamber from Amazon and put in line with the air output. I use it dry (empty ) and it really baffles the sound a lot. If you end up with a humidifier it will significantly lower the noise of the trilogy also
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,055
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Please note Jimi's Trilogy settings [which I have now deleted for safety's sake] are not typical. Please don't take them as something to try. Even sealing your mouth with tape can be dangerous if you do not have adequate nasal airflow. A full face mask is the first step if you are a true mouth breather.

Best,
Laurie
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
So I carefully stated that this was an example of what works for me and that it can be very different for everyone. You can say what you want about tape, but until you have had to go thru the living hell of not being able to breathe on your own and the discomfort of the full face mask and dry mouth, you can not understand. There is someone sleeping in the room with me. I also assumed that if someone had issues with a stuffy nose that they would use a full face mask. I can rip the tape at anytime with a strong yawn. Of course I do not have the ability to breathe unassisted so tape or no tape on my mouth doesn't matter. What you are saying is that I should be using a full face mask at night and enjoy the wonderful high pressure air flowing through every where with no control? Ok. I thought this was a discussion between grown-up people with the ability to think for themselves. I understand now. Sorry for assuming people are smart enough to know that I was describing my personal experience that only works for me and that the sole purpose was to help give them ideas to think about to perhaps help. I am living with this disease for 5 years since dx. Just wanted to help people to think up ways to cope and make their life as comfortable as mine. I'm very disappointed that everything I write may be censored because some how stating that this works for me but can be completely different for you isn't good enough. I have faith in people's ability to think for themselves.
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
If someone seeking help from this site is stupid enough to change their trilogy settings to what some dude said works FOR ONLY HIM, then I think I had better stop sharing my experience with this disease immediately. I'm in the wrong place
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,259
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Jim, you’re in the right place. I for one appreciate your sharing. People need to understand their mileage may vary.
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Thanks Karen. Sorry for getting frustrated. I have little patience when people try to remove our right to think on our own
 

Jimi

Active member
Joined
Sep 24, 2019
Messages
77
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Please note Jimi's Trilogy settings [which I have now deleted for safety's sake] are not typical. Please don't take them as something to try. Even sealing your mouth with tape can be dangerous if you do not have adequate nasal airflow. A full face mask is the first step if you are a true mouth breather.

Best,
Laurie,
Laurie,
I believe that if there were "typical" settings for bipaps/trilogy than everyone would be comfortable and not seeking tips or ideas on how to improve. Obviously this is not the case. My goal was to share my personal experience in hopes that others would get some ideas about what is involved in achieving comfort. But thanks for censoring the details about tuning MY particular, atypical set up. I'm sure that helped. I believe that we are visiting this site because relying upon others for every aspect of our care is not enough. Figuring out what works for every unique ALS case is not going to have a "typical" answer
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,127
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Jim please don't stop sharing no matter that someone tries to correct you - you still have the right to tell us what has worked for you and it is very valuable. Sometimes this happens here - we understand.
You have years of important experience and I value your input 💗
 

ejb24d2

New member
Joined
Feb 8, 2020
Messages
5
Reason
CALS
Diagnosis
00/0000
Country
US
State
MO
City
Blue Springs
Thank you so much for everyone's advice and encouragement! We were told that she HAD to use a face mask that covers her nose and mouth by the Trilogy representative that comes out to the house. Seems like we need to do a little more research and push back on this. She has said that she thought she would feel much differently with a mask that only covered the nose. She gets really congested when we use the humidifier as well. I think it will just be a little trial and error to figure out the balance between the humidifier helping with the dryness without creating congestion. I think we will also try the ointment in her nostrils to see if that will help with the dryness. The encouragement was really helpful! My mother loved listening to the posts and made her feel more assured that we will get this worked out.

Jim, I also agree that I really appreciate your post! I can see why you felt upset, but please know that I thought the way you worded things was perfect, and it was clear to me that you were just sharing your experience, not telling us to do the same thing. I hope you keep sharing your experience with others because I know it was very helpful to my mom and I. :)
 
Top