My breathing seems to be getting more shallow everyday. In the event of diaphragm failure can the bipap “breathe” for me? My asthma inhalers just make me cough.
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Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily. -
Hi Rosemary,
sorry to hear that your breathing is not good, have you had breathing tests done at the hospital?
James xFoxes Never Quit 💙 -
Rosemary6NT like you I'm more worried about my breathing. Breathless now with even minor exertion. I'm ok just sitting.
I've asked for an early review with hosp respiratory team (was due March). Sorry I can't answer your bipap query...
xx
Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.Comment
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It depends what you mean by diaphragm failure - anyone with ALS needing BiPAP does so due to some degree of diaphragm failure and, those of us for whom BiPAP/NIV is recommended (whether we do so or not) are actually in Respiratory Failure, which sounds super scary, but we can live for a relatively long time in respiratory failure, especially with NIV support.Originally posted by Rosemary6NT View Post
A BiPAP machine alone cannot breathe for you, it's not like invasive ventilation in that respect, rather it supports your muscle function.
Whilst most machines are programmed to initiate a breath if you have't taken one, it's more of a prompt to your body to breathe - it's then essentially up to your muscles to follow through on taking the breath and processing it through your respiratory system, if that makes sense.
Your BiPAP settings may need tweaking if you're finding it hard on your body.
Love Ellie (Queen Shallow Breather 😉) 😘😘Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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I can’t speak more than a few words now without having to use my bipap and not enough puff to use my inhalers 😕Originally posted by LindaB View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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You should be able to get asthma meds to use in a nebuliser - inhale them in a 'mist' rather than using a puffer - def worth asking about. xxOriginally posted by Rosemary6NT View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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I’ve just put in a request, thanks Ellie xxOriginally posted by Ellie View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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I hope you get one soon. It’s horrible isn’t it? XxOriginally posted by LindaB View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Hooray, Oxford respiratory team contacted me today and have remotely tweaked my pressure and rise settings so I am getting more air. Much better 😀 Not good without NIV though 😕Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Hi Rosemary..glad you got some advise.
As I mentioned before I chose not to use the NIV.Decided to rely on palliative care team whilst I go through respiratory failure.
Wishing you well
Mary xComment
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Happy days Rosemary6NT that's great to hear.Originally posted by Rosemary6NT View Post
Hope the new setting is good for sleep too - I have different day and night profiles, just to let you know that it's possible. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Oh, thanks Ellie, I didn’t know thatOriginally posted by Ellie View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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