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Side sleeper & niv

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    Side sleeper & niv

    Hi all. Do any niv users sleep on their sides? I am a side sleeper and I have seen a pillow that may help.

    But wondering whether its time to sleep on my back for when I start niv on the 20th.
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 I sleep on my side too and have been wondering the same. There is just so much to think about isn’t there? x
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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      #3
      Hope always having to be one step ahead. I've seen them cpap pillows on a site 'putnams'. The reviews are a mixed bag though. I think if you used a normal pillow but vertical so the mask hung over the pillow. X
      Diagnosed May 2021 bulbar onset als.

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        #4
        shelly21 I’m a side sleeper and have no problem at all with the NIV mask. Nice soft down pillows probably help but I certainly haven’t had to buy anything special
        Last edited by PeterPan; 8 June 2022, 12:09.
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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          #5
          PeterPan that is great. Thank you. save my pennies for the next aid 🙃.
          Diagnosed May 2021 bulbar onset als.

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            #6
            Originally posted by shelly21 View Post
            PeterPan that is great. Thank you. save my pennies for the next aid 🙃.
            I’ll just add… it sometimes takes a while to clear secretions in my mouth and throat before settling down to sleep, but I can honestly say I’ve never slept better than now with NIV. It takes a few nights to get used to it but the slow, rhythmic breathing is very restful and promotes deep sleep 💤
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #7
              PeterPan I had read other members posts on how to break in niv use gently. That also helps re secretions. I try to have my last blast on my nebulizer about 8pm. But I will be issued my cough assist machine on the same day as niv. Lots of practice time. I do sleep reasonably but have found waking up a few times. I was upset when I was told I needed niv. But after reading other members experiences I feel more accepting of it.
              Diagnosed May 2021 bulbar onset als.

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                #8
                One of the face mask supplied to hubby has the hose connected on top of the head with air tubes going down on each side of the face, it was explained that if you sleep on your side and "block" one side, the other side will suffice. Think its called dreamwear. Can't comment on comfort as he doesn't yet use it, but provided to see if he would tolerate a smaller front section which still covers nose and mouth.
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                Respiratory and blood gases still within normal range.

                No speech but sense of humour still fully intact.

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                  #9
                  MMG thank you. I will make sure I mention it. I'm at Stoke on the 20th.
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    It was supplied by Stoke Respiratory team. They are great. xxxx
                    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                    Respiratory and blood gases still within normal range.

                    No speech but sense of humour still fully intact.

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                      #11
                      I use something like this and sleep on my side, I find it fine x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #12
                        sorry, was referring to this:

                        “One of the face mask supplied to hubby has the hose connected on top of the head with air tubes going down on each side of the face, it was explained that if you sleep on your side and "block" one side, the other side will suffice.”
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                        Comment


                          #13
                          Heather R thank you. I feel better now I know its an easy solution x
                          Diagnosed May 2021 bulbar onset als.

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                            #14
                            I have to use my NIV whilst sleeping on my back and I sleep very soundly. Sadly I am unable to sleep on my side which I miss not being able to change my sleeping position. I don’t have the strength to move on my side now ☹️
                            i hadn’t realised yawning was another symptom of this wonderful disease I thought I was tired !!

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                              #15
                              Originally posted by Madge View Post
                              I have to use my NIV whilst sleeping on my back and I sleep very soundly.
                              That's great to hear Madge 👍👍

                              From one Sleeping Statue to another 😉😘
                              ​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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