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Thread: Hello I知 Douglas

  1. #141
    Forum Member Ellie's Avatar
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    It really should've been on Pressure Support from Day 1

    You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel natural, i.e. set up correctly and with a comfortable mask.

    I suspect the CO2 retention is making you feel drowsy and when these levels drop from using the Nippy, you feel more alert.

    I do wonder about your settings though, especially as it appears not to have been in the optimal mode all this time.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #142
    Forum Member nunhead_man's Avatar
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    Hi Douglas and Ellie

    Quote Originally Posted by Ellie View Post
    You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel natural, i.e. set up correctly and with a comfortable mask.
    I have been provided with a Nippy by the breathing team as my overnight sleep study showed sleep apnoea and a minimal loss of diaphragm strength at the moment.

    When I first tried it in the clinic I had this real sense of air being pushed at me when I did not want it and they did something to the settings that means this does not happen quite so much - would it help if I posted my settings?

    Please note I also have the Nippy 4 not the Nippy 3+ and while the 1st one I had simply would not light up the 2nd one seems to adjust to the length of my breath inwards and outwards so as I breathe more slowly as I fall asleep the machine seems to adjust.

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  3. #143
    Forum Member Ellie's Avatar
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    Yes Andy, settings are key to using NIV successfully !!

    With the optimal settings, you shouldn't feel any forced breathing - just that the machine is in sync with your breathing pattern, which seems to be the case with you Andy.

    It doesn't matter what model of Nippy is used, nor the brand of NIV machine, the settings are constant for the individual's 'prescription'. You can post yours if you want - because you use NIV more for apnoea rather than respiratory failure, your settings may be somewhat different.

    Love Ellie.

    Vote Andy for Trustee
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #144
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Thank you - both for the information and for the endorsement

    I guess the St Thomas's Lane-Fox Respiratory Unit knew what they were doing after I complained about it blowing in my face.

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  5. #145
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    Well I’m sleeping much better but of course the CO2 is reset and last night 6.9

    PEG is back on the agenda but maybe not on this hospital stay

  6. #146
    Forum Member Ellie's Avatar
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    Douglas, can I just check please, it's just room air you're breathing, is it? No added oxygen?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #147
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    Quote Originally Posted by Ellie View Post
    Douglas, can I just check please, it's just room air you're breathing, is it? No added oxygen?

    Love Ellie.
    Yes just room air after it痴 passed over the water tank

  8. #148
    Forum Member Ellie's Avatar
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    Do you know the settings they've set the Nippy at? IPAP & EPAP.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #149
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    Co2 6.8

    ipap 24
    epap 5

  10. #150
    Forum Member Terry's Avatar
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    Hi Dis;

    I think that's what Ellie's after. Hope you are keeping well and entertained. At least they have not given you oxygen like two of our friends have had over the last year.

    Love Terry

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