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Have other people on forum declined to use a NIV?

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    Have other people on forum declined to use a NIV?

    Hi All,
    My respiratory consultant recommended nighttime NIV use.I tried using it but struggled .
    I tried day time use for an hour or two.Pre using the NIV I slept well.Once I used the NIV night times became a time I dread"When wearing the NIV mask I woke a lot coughing.I have had an increase in dry mouth for months and worse when NIV mask was on( I have oral spray and artificial saliva.)
    When in hospital recently I saw respiratory nurses and settings were again altered but I just kept waking up.My NIV has a humidifier fitted.
    I haven’t used it for several weeks now and sleep so much better.

    Just wondering are there others who chose not to use a NIV or couldn’t tolerate it.?..?

    I realise there is likely to be a build up of carbon dioxide if I don’t use the NIV and presume life will be reduced.For me it feels at present I need to have good sleep versus waking every hour or less coughing or so dry I need to drink when using the NIV.

    Mary



    #2
    I have stopped using NIV. I PEG strong black Nescafé instant coffee with lots of sugar. I sleep for up to eight hours with breaks to empty my catheter bag. 👍😁❤️🤗xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Hi Matthew
      did you sleep well with NIV?
      Mary

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        #4
        No definitely not.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Hi Mary,

          People not getting on with NIV is more common than you think. I’m aware of several recent and current forum members who have stopped, or not really started using NIV, for a variety of reasons including secretions, claustrophobia, sore nose, sore mouth, noise and general comfort. Many don’t post of their decision, but maybe you’ll have more replies.

          I do know that the experience is very much linked to one’s breathing ability. I totally get that you were doing pretty well and sleeping nicely, thank you very much (!) before it was decided to start you on NIV, which wasn’t a success by any stretch of the imagination 😩 You saw no benefits for all your hardship because you woke up feeling refreshed beforehand - all very understandable, nobody would want to take a step back in their quality of life.

          If you were waking up struggling to breathe, had difficulty waking up, felt very lethargic or had headaches from CO2 retention, that would be another matter - incidentally, low-grade CO2 headaches usually go soon after getting up/sitting up.

          are you happy with your breathing in general - inhale, exhale, hold your breath, blow out, cough (you don’t need to answer me, those functions are all part of overall lung function)

          I’m sorry you're in this quandry, my lovely.

          Sending you a big hug.

          Love Ellie.
          ​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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            #6
            Hi Mary,

            I’m very pleased you asked because I’m not getting on with NIV either! I started in early June and, to all intents and purposes, I’ve given up. It’s very uncomfortable for starters, it leaks, it ‘breathes’ faster than I normally do when resting, it fills up with saliva and I choke on thick mucus in my throat. Apart from that it’s great. Some people seem to have a fantastic experience; in my case I probably started it too early - before a critical need. I’d say don’t worry about it until you really need to worry about it, and then make your own informed decision. We are all different - I certainly wouldn’t benefit from Matthews’s black coffee solution!
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

            Comment


              #7
              Hi Ellie,
              feeling as you say in a quandary.I started going to bed later and later as dreaded putting on the NIV mask and the coughing fits.Poor sleep with the NIV mask on drove me nuts!I It was awful as I kept waking up throughout the night coughing and with awful dry mouth.Then Steve my husband also was awoken to readjust my mask and do a mask test.

              He is very patient and never complains.But he too pointed out that night times were becoming an ordeal as umpteen awakenings when NIV. Mask worn.I started to nap in the day as felt tired.
              So far I haven’t woken with headaches.Aware my breathing and swallowing are changing gradually along with weakening speech.

              Respiratory nurse ringing next week and I guess I need to ask the question I have not asked yet. I need to know what the respiratory consultant feels the consequence for me is likely to be if I make the decision not to use the NIV.So I imagine my breathing will deteriorate more quickly than if I had accepted the NIV and possibly reduce my life expectancy.

              At the moment I feel like I prefer to continue with a good nights sleep however I realise this may be short term unless I use the NIV.I need to discuss the pros and cons of my dilemma with respiratory team.I guess I need to know if I don’t use the NIV will my breathing ability / lung function rapidly deteriorate .
              Off to bed minus NIV and hope to sleep as well as I have been lately since not using the NIV.
              Sharing my thoughts and not trying to discourage anybody to not use a NIV .We are all different .
              Best wishes and good night
              Mary



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                #8
                Mary, why was it recommended you use a mask? You slept well by all accounts, so I'm a bit confused here. I don't use a mask, and sometimes get light headaches upon wakening, which disappear after getting up. A small price to pay for a good night's sleep (apart from help turning). My swallow is not good, but I don't have the saliva and mucus problems.

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                  #9
                  I'm sure a good night's sleep does more good than anything else. Stephen has been without his niv for a week and he's quite happy. No sore nose, no blowing in his eyes and no noise. I just asked him if he missed it and he said no. Is there any benefit then? He said it helps him breath more deeply. He always complained it wasn't in tune with his breathing. I'm not sure why hes bothering as he smokes about 20 fags a day. Seems to defeat the object.

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                    #10
                    Mary C & others thanks for sharing the varied experiences. I'm having my first appointment with a respiratory consultant early August when I'm sure NIV will be suggested. My breathing has become more shallow...voice weakening...however sleeping ok.
                    Your posts don't put me off at all but give me more knowledge for when I need to make that decision. I haven't researched NIV yet however your posts are great for me as feel I've dipped a toe in the water rather than jump straight in the deep end.
                    Seems a balancing act for you Mary....sleep is so precious and healing...I hope you manage to strike the right balance somehow. Take care 🤗😘
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      Hi Peter Pan that experience you had is similar to mine so far.

                      Aussiegirl.....The mask was recommended as respiratory consultant said blood test showed highest rate that was acceptable as normal before I tipped into retention of carbon dioxide hence he wanted me to use the NIV.
                      Like others on here and despite settings being altered on NIV I never felt it was in sync with my breathing.
                      Slept very well last nigh without the NIV.
                      Best wishes
                      Mary

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                        #12
                        Hi Mary, I’ve had my Niv since October 2019 and I struggled with it sometimes only managing 2/4 hours a night sometimes not at all but I didn’t give up and now if I get my positioning right in bed I can use it 8/10 hours a night, best wishes Janette xx
                        Janette x

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                          #13
                          Hi Mary,
                          Ive struggled with my Niv and was given it because i had a reading of 16 (haven’t a clue what of!) and cut off was 15. It caused more problems that it solved so its now consigned to the back of the cupboard and I sleep with a clear conscience!
                          x

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                            #14
                            As I've previously said, if a person is struggling using NIV and wouldn't really feel benefit from its use, then making the decision to stick it in a cupboard is a no-brainer...

                            If, like me, lung function is so poor as to make sleep impossible without NIV and its benefit is blatantly obvious, then using it, and finding solutions to any issue, is equally a no-brainer decision.


                            However, it saddens me that people feel they basically are fighting to breathe in sync with their NIV - saddens me because there are modes and multiple settings which the respiratory technicians can change so this does not happen... They are too quick to use a default setting and expect folk to fit in with the machine, rather than the other way around, which makes me 😡😡 Some machines are set in Auto mode from the get go (machines need to learn an individual's breathing pattern) - just when users are most anxious using this strange gizmo and breathe differently for periods.
                            Ideally, new users are set up on gentle settings which, once they are using to a machine helping them breathe, can be adjusted to more therapeutic levels.

                            Similarly, there are many ways to improve any aspect of NIV use proving uncomfortable if and when its use will have tangible benefits.

                            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


                              #15
                              I'm with Ellie. What's the point in struggling when you felt quite happy before. The important thing is being comfortable and able to sleep. Hasnt everyone got enough to contend with. Stephen is without his niv, no peg food. He's perfectly happy. Sometimes I wonder if its you guys that are supposed to be happy or just those ticking boxes.

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