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Seeing as humidifiers have been mentioned...
I have been using overnight NIV for a couple of months, and have become accustomed to my mouth feeling like dry cardboard every morning.
They gave me a humidifier last week, and it doesn't seem to make any difference.
I have turned it up to max (5) and the water reservoir only gets warmed to barely above body temperature.
Does that sound right?
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
WheelsOfSteelWhich NIV machine do you have, Eddie? Can you see a new symbol on the screen as some machines 'need to be told' they have a humidifier attached? xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
Hiya Ellie - it's a Philips DreamStation.
Everything seems to be in order, since there is indeed a new symbol on the screen when the humidifier is attached, and the settings respond to turning the dial on the machine.
Just doesn't seem to do much
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
WheelsOfSteelThat's disappointing. My Nippy 4 humidifier definitely makes a difference.
You're not getting 'rainout' (condensation build up), over-filling the water chamber or using a heated hose?
They don't need to be hot, around 30-31o is normal, depending on the humidity and time of year. Can you think of any environmental reasons affecting the humidifier? xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
Ellie - No. I reckon most of my time on NIV is spent breathing through my mouth
Pre-NIV I was having breathing difficulties, and probably got into the habit there.
I can find it more restful trying to get to sleep breathing through my nose, but I often find it hard to keep up
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
I reckon most of my time on NIV is spent breathing through my mouth
And that's the reason for the dry mouth - your mouth is not getting moist air.
I know you have a "mouth / nose" mask which, in theory, should hold your mouth closed, particularly the masks which extend from the chin to the nostril. Perhaps a different size mask or a different type/brand of mask is what you need. xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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