Breathing questions

Status
Not open for further replies.

Bob R

Active member
Joined
Jun 24, 2015
Messages
40
Reason
PALS
Diagnosis
06/2015
Country
US
State
FL
I have bulbar onset ALS for close to 2 years. I'm pretty much confined to a hospital bed for 22 hours per day. I find myself sleeping 12 - 14 hours per day. When i sleep, I have no problem inhaling but exhaling seems to take twice as long, and seems to be labored, although not consciously so.

And every 30 minutes or so, I have some kind of spasm where I unconsciously take a deep breath and let it out. I have a trilogy machine but I'm good without it, and I find it impossible to use. It doesn't breath at the same pace as I do, so often the machine is inhaling while I am exhaling. My oxygen number today was 95.

Anyone have any comments on all this ? Is this normal ?
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,198
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
I think you should get your Trilogy adjusted so it can make you more comfortable. Laurie will probably have more to say on this.

I do understand a BiPAP not breathing at the same rate because that was the problem I had with mine. I'll be getting my Trilogy on Tuesday and plan on working hard at getting it set correctly. My breathing has always been very slow and somewhat irregular and I'm thinking that is the problem.
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
One problem is that when you're asleep your breathing slows. If you're beginning to have breathing issues, even if you don't notice it when awake, you could be failing to expel enough CO2 during the night. Waking with headaches and being tired are signs.

An overnight sleep study or a simple recording oxy meter can diagnose this.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,198
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Your oxygen can read normal on a meter and you can still have excess CO2. My sleep study focused on apneas and O2 drops during events. Nothing was noted regarding CO2 at all. Meter was done by Mayo and sleep study done locally. This has been the most confusing part for me.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,262
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Hi, Bob, if you post or send me your current settings I can help you match them to your natural breathing, which would also help the Trilogy help you more w/ CO2 exhalation and adequate oxygenation. As others have noted, those are not the same thing, and they are tackled via different parts of the settings.

Best,
Laurie
 

Bob R

Active member
Joined
Jun 24, 2015
Messages
40
Reason
PALS
Diagnosis
06/2015
Country
US
State
FL
Hi, Bob, if you post or send me your current settings I can help you match them to your natural breathing, which would also help the Trilogy help you more w/ CO2 exhalation and adequate oxygenation. As others have noted, those are not the same thing, and they are tackled via different parts of the settings.

Best,
Laurie
I pressed settings/ RR is at 10 BPM, but in use, it fluctuates up to 18. There are other numbers but they fluctuate all over. what am I looking for ?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,262
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
PM'd you on how to retrieve the settings.
 

maxbama33

New member
Joined
May 25, 2015
Messages
9
Reason
PALS
Diagnosis
01/2015
Country
US
State
Mississippi
Hi Laurie I could really use your help with the setting on my triogy
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,262
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Max,
You can post the settings here (procedure for viewing them below) or send me an e-mail with yours.

###

If there is a closed lock icon on the main screen (as opposed to an open lock), you must first unlock the machine.

To unlock the keypad and enter the menu, hold the Right button for 5 seconds to unlock the keypad. An audible indicator sounds when the keypad is successfully unlocked. Once the display is unlocked, you can enter the Menu as you normally would by pressing the Up button.

Once in the Menu, scroll to “Options.” Press R physical button on machine (“Select”). Press the button again “Modify” to enter Menu Access. Use up/down button in middle to choose Full access. Press OK (R button) to confirm, then “Finish” and “Exit.” Continue navigating through the menu to view (so you can write them down for you/me) and later modify other parameters.

The first change I would make is to change "detailed view" to On, and so you can see more info about what's happening while you're using the machine.

Best,
Laurie
 

maxbama33

New member
Joined
May 25, 2015
Messages
9
Reason
PALS
Diagnosis
01/2015
Country
US
State
Mississippi
mode avaps-ae
avas rate 3.0
tidal volume 350ml
max pressure 35cm
pressure support max 18.0 cm
pressure support min 6.0 cm
epap max pressure 4.0
epap min pressure 4.0
breath rate 16 bpm
trigger type flow type 3
rise type 3
ramp length off
 

maxbama33

New member
Joined
May 25, 2015
Messages
9
Reason
PALS
Diagnosis
01/2015
Country
US
State
Mississippi
Thank you Laurie for all your help. Do you need my e-mail address
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,262
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Awesome, Max, but then the question is, how are you breathing with these settings? See questions on the current Trilogy thread. Height/weight is also helpful.
 

maxbama33

New member
Joined
May 25, 2015
Messages
9
Reason
PALS
Diagnosis
01/2015
Country
US
State
Mississippi
Hi Laurie I'm sleeping ok,waking up about 3or4 times. My height and weight is 5'10 and about 115
 

maxbama33

New member
Joined
May 25, 2015
Messages
9
Reason
PALS
Diagnosis
01/2015
Country
US
State
Mississippi
The main problem I having is too little air,i can't tell when to breathe in/breathe out
 

patrick123

Distinguished member
Joined
Oct 4, 2012
Messages
433
Reason
PALS
Diagnosis
09/2012
Country
US
State
co
I had issues the first 2 weeks with my trilogy. I was trying to do all the work. Once I figured that out I let the trilogy do the work for me.

Patrick
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks