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    Non invasive ventilator update

    Good morning all.
    Well having received the NIV a week ago I think I am finally getting used to it.Just saying this in case there are others about to start NIV.
    It takes some getting used to but Ellie among a few other members advised me to try wearing it in the daytime first watching TV before going for all night.
    Mine has a humidifier attached and I suffer with dry mouth at night which triggers a dry cough.The respiratory team changed the setting on humidifier after 2 nights of not much sleep and I actually managed to keep mask on for 5-6 hours so getting there .
    Bed time routine has changed as Steve helps put the mask on for me..and he too has got used the noise it makes( not loud) .I played relaxation you tube video to distract me from the mask ..just 10 minutes and that helped me too.
    Finally we both slept well and woke up to sun shining.Positivity resumed.😂
    Best wishes
    Mary

    #2
    Well done Mary. Glad you've found it easier to use. You realty are an inspiration to everyone.

    Denise xxx

    Comment


      #3
      Thanks Denise..went through days of dreading going to bed because of wearing NIV mask.There are some very supportive members on here who are coping with so much more but still find time and energy to help others.Have a good day..sun shining .x
      Best wishes
      Mary

      Comment


        #4
        Woohoo girl, that's fantastic 👏👏👏👏 You must be so chuffed with yourself.

        Gold star for Steve too for playing his part.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          My wife Caroline was given an NIV today as a result of a recent lung function test, it was set at 12:4 as recommended however she was not able to breath describing it like sticking your head out of a car window at 70mph. It was reduced to 10:4 but she is struggling. I tried it and agree. How do others manage?

          Comment


            #6
            MartinB What type of mask is Caroline using, Martin, and does it give a good seal, i.e. no air leaks.

            Mine is 10:4 also.

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              I admit that I use zopliclone sleeping pills to send me off when on NIV overnight. Yes I do occasionally. 👍🤗😍😋xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Hi MartinB
                I have only been using the NIV overnight for just over a week.I listened to suggestions of trying it in the daytime watching tv at first to get used to it which helped.
                I can’t say I like wearing the mask but I have got used to the what feels like the rush of air into my mouth.
                I haven’t succeeded in longer than 6 hours of keeping mask on overnight so far.
                My NIV has a mask check on it to ensure it’s got a good seal.( otherwise there are awful noises if air is leaking).
                Is your wife able to discuss with the respiratory team if there is an option for a lower setting with a gradual increase...I don’t know if that’s possible as new using a NIV myself.
                The worst part for me is the dry mouth I experienced before using the NIV is now worse.Not sure if that’s due to the NIV or impact of MND in my tongue or both.Whatever is the cause of my dry mouth I know I need to persevere .
                Really hope your wife gets used to wearing it.I find if I listen to relaxation talks or music it helps me relax.
                Ironically I felt I slept so much better before I had the NIV.
                Wishing you both a restful night
                Best wishes
                Mary

                Comment


                  #9
                  Originally posted by Ellie View Post
                  MartinB What type of mask is Caroline using, Martin, and does it give a good seal, i.e. no air leaks.

                  Mine is 10:4 also.

                  Love Ellie.
                  Hi Ellie, a full face mask connected to a head strap. Yes a fitted and good seal

                  Comment


                    #10
                    It's probably a case of getting used to the airflow then, Martin. The more in synch the machine is with Caroline's natural breathing, the less of a gale it will be. As Mary said, this is best done when she is relaxed, distracted and not focussed on her breathing rhythms.

                    She'll get there in the end. xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      My full face farts and gushes air regular 😠
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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