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    NIV machines at night

    Hi, So I have had the NIV for several weeks and my personal best is a tolerance overnight of 6 hours.I dislike the mask but realise it’s necessary and I try and lie still on my side so I don’t disturb the mouth seal.I wake up every few hours with a raging dry mouth plus aching legs or buttocks from lying in more or less one position.I pull the tube out to sip a drink via straw then I struggle to get it reconnected and my husband ends up helping me.Bless him as he doesn’t moan about broken sleep.

    On a few occasions I have left the NIV off after a loo call after a few hours sleep.(I slept so well before the NIV).

    How do other people manage keeping NIV in place during sleeping hours?Do people generally manage to tolerate the mask for longer periods?
    I have kept going as I need to take it into hospital when I get the PEG fitted on 16th June.
    It felt like 2 big changes in a month ..the NIV and PEG.
    Oh well I will keep going with it.

    Another lovely day today sat in the garden with family and friends.
    Wishing everyone a good nights sleep.
    Best wishes
    Mary

    #2
    Hi Mary I think you’re doing really well 👍 I always slept on my side but couldn’t keep a seal on the mask so now only sleep on my back but also raised up quite a bit and I sleep a lot longer now. It’s a bit of trial & error but your doing better than I did at the beginning so keep doing what you’re doing xx
    Janette x

    Comment


      #3
      Hi Mary

      I sleep (well, try to) from 10.30 to 8am with my NIV mask strapped to my face. I like to sleep on my side but need to swap sides during the night which requires me to use grab rails to haul myself over. My legs sort of follow and end up in various positions. I don’t like sleeping on my back but know I will have to eventually. I tend to wake during the night with various aches and pains.

      The mask drives me mad, I always get leaks which cause the air to blow into my eyes and with the moisture in the mask I have it blowing raspberries on my face.

      I tried using biotene gel to reduce the dry mouth but it didn’t make a great deal of difference.

      I’ve now been given a humidifier to work with the NIV and this has reduced the incidence of dry mouth and also seems to have reduced my usual morning coughing.

      I have to wait for my wife to remove my mask in the morning.

      I’d love to be ‘normal’ and have a good nights sleep in my old bed.

      Hope you get used to it.

      Andy x
      Last edited by AndyB; 10 June 2021, 19:27.
      Sporadic MND/ALS - Limb onset - Diagnosed May 2016
      night time NIPPY, cough assist, PEG (not currently used)


      Today is the tomorrow I feared yesterday

      Comment


        #4
        Hi Andy , I relate to what you describe about the mask and if not exactly fitted right the noises start!
        I tried biotene gel and biotene mouth wash but no real improvement in dry mouth.I caught sight of myself in the mirror as heading for a loo trip in the night complete with the mask on supported by my husband ..what a sight it is😂
        I have a humidifier too on NIV .Well I guess practice makes perfect so let’s hope us NIV wearers get a good nights sleep.
        Janette..thank you for the encouragement.
        Best wishes
        Mary

        Comment


          #5
          I confess that I have have finally given up NIV. At the end of the day I want to be comfortable and sleeping is a big part of this. Plus I don't want to extend anything. 😁xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            The niv is the only thing Stephen has taken to. Im really surprised. He puts it on and thats it. Each time he sees the technician he has a little moan about something but basically he's quite happy.

            Comment


              #7
              Thinking about it. If a good nights sleep is beneficial to our health and wellbeing then struggling with a mask seems more trouble than it's worth. I know the niv, if it works for you, is beneficial but lack of sleep really does drain us. Perhaps using it during the day and doing without during the night. Think I've come to the conclusion you should do what works for you.

              it's just my view on things I know some will be horrified.

              😊

              Comment


                #8
                Hi Matthew/Denise.
                Pre NIV I was sleeping well so hadn’t complained about poor sleep to respiratory team.( I was getting a cough in the evenings but a low dose of Oramorph t time and bed time seems to have improved that)
                I was told the NIV is necessary following a blood test taken by respiratory team with the explanation it’s needed to expel carbon dioxide from the body.
                The result is ..I hate wearing the mask but tolerate it.I wake when wearing after 3 hours .Then at intervals during the rest of the night I wake and look at the clock, have a sip of water and head to the loo usually once in the night.I aim to keep it on 5-6 hours then when removed I sleep another couple of hours.
                I left it off for a night recently and slept very well.
                I think I will discuss with respiratory nurse when I go into hospital next week if it’s really necessary to support my breathing and have a Frank discussion about what the outcome is likely to be if I don’t use it every night.
                I guess as you both said it needs to be an informed and personal decision.
                Woke up with a sore ear this morning as NIV strap must have irritated it.
                Best wishes
                Mary

                Comment


                  #9
                  It’s swings and roundabouts with it, the other night I couldn’t tolerate it at all only lasted an hour if that I think I was too stressed but last night did a full 10 hours x
                  Janette x

                  Comment


                    #10
                    Originally posted by Nettie View Post
                    It’s swings and roundabouts with it, the other night I couldn’t tolerate it at all only lasted an hour if that I think I was too stressed but last night did a full 10 hours x
                    Great that you managed 10 hours with the NIV Jeanette. As you can guess I’m not using one yet but I read every post about them as a learning opportunity so that I’m clued up before it becomes necessary for me. My blood gases, taken from my ear, and my sniff test were described to me as ‘normal’ at my recent clinic appointment. Long may that be so.

                    Thanks everybody for all of your potentially useful information for me and good luck for solutions and good nights sleep for everyone. Love Lynne xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Mary C You always have a choice to use equipment, or not; to take a medication, or not.

                      You know your body best so, if you feel better not using NIV at night, even if your figures show its use would benefit you, you can politely decline.

                      And, it is never seen as a failure if someone doesn't get on with a piece of equipment or a medication, same goes for just not wanting equipment or medication. There is no right way or no wrong way to live your life with MND, just your way.

                      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


                        #12
                        To Nettie
                        Wow you rock girl...10 hours at night with NIV is amazing.I know some people wear NIV day and night.Can’t imagine how that must feel.
                        Lynne K...so pleased you aren’t requiring a NIV at present.
                        Oh well I will try again tonight with the NIV..
                        I might sleep better as got friends coming for drinks this evening.😂
                        Best wishes
                        Mary

                        Comment


                          #13
                          Hi Mary, your post is timely for me. I was in hospital on Wednesday and yesterday for a respiratory assessment, and I've now had two nights with NIV. The first night in hospital was awful and I hardly slept a wink - a combination of the claustrophobia of the mask, the London heat in an old building, and windows with faulty blinds. Last night, back home, I slept much better but almost drowned in saliva in the mask, which I took off after five hours. Definitely not a dry mouth experience! The Phillips A40 BiPAP has a humidifier, but that was turned off. Seems that one problem with MND leads to another and I'll have to have something to stop the saliva. I tried Glycopyrronium twice in the past but the result was almost instant stomach upset. On the plus side, having managed the five hours of NIV I do feel very much more alert today. Have a good evening!
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                          Comment


                            #14
                            PeterPan Good to hear you're finding benefits from using NIV, Peter. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Well done Peter, it takes some getting used to.
                              To Ellie, I know we have choices but guess I was guided by respiratory teams assessment that if I don’t use the NIV carbon dioxide levels will build up in my body which leads to fatigue, dizziness, headaches as well as shortness of breath or worse.
                              I decided it’s worth a try.I have to say I hadn’t noticed any of those symptoms so it came as a shock to me that I needed a NIV.
                              I was also told I would need to use it for the PEG procedure hence I am trying to tolerate it nightly.Plodding on with it for now.
                              Best wishes
                              Mary

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