Bipap question

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Colleen15

Active member
Joined
Jun 16, 2023
Messages
57
Reason
PALS
Diagnosis
03/2023
Country
US
State
MA
City
Boston
I use a non invasive ventilator, like a bipap, with a full mask, only a few hours a day. But either my mask gets loaded with saliva, or my mouth gets soooo dry after an hour. I don’t know how i will be able to use this all night. Does anyone else have these issues?
Thank you
 
Try using a different mask. Like you I deal with excessive saliva. I could never use a mask that covers my mouth. I use a ResMed AirFit N20 mask. It covers my nose vs nose/mouth mask. This mask allows me to use a washcloth tucked in the sides of the mask to soak up any excess saliva.
 
You may also want to adjust your machine and room heat/humidification settings.
 
I too am bulbar-onset ALS. I was first diagnosed with Sleep Apnea in 1999, but did not start using a CPAP until 2008 when the technology finally had auto-adjusting features available readily. I’ve always used the nose pillows vs. a mask covering mouth.

I was only diagnosed with Bulbar-onset ALS in August 2023 after 9 months of searching for the cause of my slurred speech that showed up after a tongue biopsy in Dec 2022. (Had to run out many things: from stroke to Parkinson’s before arriving at bublar onset ALS.)

Anyway, I’m not sure about the differences between BIPAP and CPAP as I’ve only used CPAP. But, I simply cannot sleep without CPAP.

the Saliva mess I have is somewhat managed with Botox, but it’s very much there. I don’t have the problem with the CPAP machine because the nose pillows force the air down my nasel passageways into my windpipe — with the intention to ‘push’ the tongue out of the way! With Bulbar onset, your tongue becomes a ‘flappy’ mess Which you cannot control much anyway.

I’ve not needed to sleep sitting up. But, I have found a little bit of elevation helps. and, i find that I need to sleep on my side (vs. directly on my back as I have since starting CPAP).

The only usage of CPAP during the day is when I take a nap. I monitor my pulse-ox with a finger device from time to time and constantly via my Apple Watch. Fortunately, I’ve not felt ‘winded’ enough as of yet to push me to use it during the day otherwise.
 
Paul please talk to your neurologist and / or pulmonologist asap about changing to bipap. Cpap is not recommended for pals because as the respiratory muscles weaken from ALS people are unable to push out against the constant pressure of cpap and then get CO2 buildup which is dangerous and ultimately fatal
 
Thank you Nikki, I was just posting the same message as you. Sleep apnea was my first symptom of ALS though I didn't know it at the time. I was 100lbs and very fit and active. Out of the blue I developed sleep apnea in 2016. From there other symptoms started to show, it wasn't until 2019 that all of my symptoms were put together and after alot of testing that I received my diagnosis.
 
I use nose pillows. I didn't know that they could be used with a CPAP. My mouth stays closed and moist for the most part.

My wife says that some mornings my lips flap a little bit. I told her that has to be the cutest start to her day.:LOL:

I was also going to mention checking with their ALS doctor about the CPAP and biPap issue.
 
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