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    Reprieve albeit temporary?

    A few days ago I got a Bipap A40 to try, and have tried it for the last 3 nights now. I was excited after the first night as I seemed to have more energy, disappointed after 2nd night as seemed more tired again, and today seemed to have more energy and have done more (though not nearly as much as I would like of course!). Don't enjoy wearing it , but not as bad as I feared. My gut seems full of air, is it normal to swallow some? Does using it have any effect on lung strength? eg encourage it to weaken? Does it affect voice? (just wondering why it's so bad today!) Thanks for any advice xx
    Diagnosed July 2020, ALS bulbar onset.

    #2
    Hi Heather,

    Bit of a mixed bag, so!

    At the start, some people tend to swallow air as they get used to its rhythm or, if it becomes a chronic issue, tweaking the settings can help - you should talk to your resp team.

    No, using NIV does not contribute to weakening breathing muscles, it helps you to breathe more efficiently - increases your oxygen levels and decreasing carbon dioxide levels.

    It does not affect the voice directly, but tiredness and poorer breathing can, just as a good sleep, more energy and better breathing can boost your voice.

    Heather, I don't want to scare you, but you need to contact your respiratory team and tell them you are aware of an issue with the A40, and what should you do. Details here: https://www.philips.com/c-dam/b2bhc/...tor-fsn-uk.pdf

    Love Ellie.
    Last edited by Ellie; 23 June 2021, 10:00.
    ​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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      #3
      Hi Heather
      I am struggling using the NIV too and hoping to talk to respiratory team today whilst I am in hospital.As soon as I have mask on I start coughing.Also aware my mouth opens so feel like I am having air blown into my mouth which is uncomfortable and makes my usually dry mouth even drier( despite having a humidifier attached)
      I get so tired but dread going to bed and the nightly battle trying to keep the mask on....Last night I only lasted an hour with mask on.
      I have had settings rechecked in hospital on this admission and altered and a different mask was tried.
      My Hope is the respiratory team can suggest something to make it easier for me to tolerate it.
      Initially when given the NIV a couple of months ago I built up to 5 hours using NIV at night but seem to have gone backwards.
      Good luck Heather getting sorted
      Best wishes
      Mary

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        #4
        I feel for all of you struggling with the mask and air intake. I tried my husband's out of curiosity. I'm sure it would probably help me. Have to say I did not like having, what felt like a clammy octopus stuck to my face and trying to keep up with the air going in and out I envisaged myself looking like the Michelin X man.😩

        good luck to all of you. You all deserve medals 😗

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          #5
          Many thanks all. Ellie, thanks for the info, I can't seem to get anything on your link though. Do you mean the issue of swallowing air? Mary, do hope the respiratory team can help, and all the best for the op. Denise, thanks for the sympathy xx
          Diagnosed July 2020, ALS bulbar onset.

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            #6
            I've given up on NIV and find pegging very strong coffee regularly keeps me awake. 🤗😁😍😘xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              Hi Heather think there's a typo in link address - sure Ellie will correct x
              Last edited by Gordan1111; 23 June 2021, 09:40.

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                #8
                Thanks Gordan1111 link now corrected. 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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                  #9
                  Thanks Ellie - I tried to find right page but failed! xx

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                    #10
                    Thanks! Have sent link to my respiratory physio x
                    Diagnosed July 2020, ALS bulbar onset.

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                      #11
                      Physio says they are currently in discussion with the Philips about this, government hasn't given any advice. Continue for now. x
                      Diagnosed July 2020, ALS bulbar onset.

                      Comment


                        #12
                        🤔 I found that info on the Gov.uk website.

                        Please let us know what the physio says about it Heather, if that's OK. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          She says she'll update me later today x
                          Diagnosed July 2020, ALS bulbar onset.

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                            #14
                            She says she hasn't had an update yet, carry on as normal. Ellie, does this include your ventilator? Are they all made by Philips?x
                            Diagnosed July 2020, ALS bulbar onset.

                            Comment


                              #15

                              "Carry on as normal whilst we figure it out" seems to be what's happening at the moment, Heather.

                              My NIV is a Nippy brand, so is not affected - only machines made by Philips Respironics, as listed on the notice, are affected. 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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