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Will I get used to NIV?

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    Will I get used to NIV?

    There are a couple of other "breathing" threads already running, so forgive me starting another.
    After Respiratory clinic yesterday I was sent home with my very own NIV machine (BiPAP Philips DreamStation)
    I have had a couple of goes with it both lying in bed and sitting up, neither of which I could bear for very long

    Due to inability to exercise, my lung capacity has plummeted in the year since diagnosis, and I believe there are parts of my lungs that haven't inflated for a long time. When the machine pumps air at me it felt like my lungs were hitting capacity, but the air just kept coming and ended up blowing out the sides of the mask. Also, my Physio taught me the "rectangular breathing" technique where you need to breathe out for longer than you breathe in, and the machine does not seem to let me do this.
    My first impressions are that the machine is throwing more air at me than my limited lungs can currently handle, and not giving me time to exhale properly before throwing more at me which starts to induce panic.

    What were your first impressions, and will I get used to it?
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.

    #2
    I will be interested in the answers.

    Did the physio say about breathing from your tummy?

    Sending positive thoughts. A few of use having mornings that are not as good as they could be.

    Positive from my side. Had the toilet frame thingy's fitted this morning.

    Oh how unimpressed my son will be when he gets back from school .

    Comment


      #3
      WheelsOfSteel I wonder if the strength of the air stream is set too high? Did you try it at your appointment on those settings? Panicking won’t help of course (!), can you try it when your mind can be on other things like tv programme? (And sitting up because if your lung muscles are weakening, you will be able to breathe more easily sitting up than lying down, because of gravity helping your diaphragm muscles contract)(I think!!) Hope someone can advise more knowledgeably! It’s strange getting used to it, but hope like for me you will find it very useful in time. X
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

      Comment


        #4
        Hi WheelsOfSteel I have a Vivo55 and left hospital with it after being on the industrial hospital version whilst there for two weeks.
        It was a brand new machine for them and they trialed it with me, testing different levels and I eventually chose the lowest strength of having to 'breathe' in, maybe they have the setting too high for you?

        All I know is there are two settings that have to be set, one is for the amount and the other for the strength. I don't feel overly forced to breathe, it just takes over and is comfortable. Sometimes waiting for the first 'breath' puts me out of sync, as it is a little delayed, but if you remember and prepare it goes right first time. Sometimes air leaks out and I just adjust where the mask is fitting - maybe it needs to go lower down on my face a little for example. For me, it feels normal again and recognise my 'tummy' is doing the work, not the other muscles which have taken over when not using the NIV - you can visibly see me breathing during the day.

        I too was taught the 'rectangular' breathing method in hospital - but only use this during the day when I am breathing too quickly/shallow and need to slow down - I was instructed to hold my breath for a second or so before releasing to increase the absorption of oxygen - it really works as I watch the oximeter level go up. I don't apply this method when using the NIV though.

        I don't lie down flat - this would put me at a disadvantage to inflate my lungs, so always go to sleep propped up and a firm pillow under my knees for support. I usually find myself lower down by the morning but without any negative effect.

        I have found the respiratory centre the most helpful out of all the services we are involved with, I would give them a call and tell them your concerns on using the NIV. It is really worth persevering if you can. xx
        Last edited by Cinderella; 19 October 2022, 14:32.

        Comment


          #5
          Originally posted by WheelsOfSteel View Post
          My first impressions are that the machine is throwing more air at me than my limited lungs can currently handle, and not giving me time to exhale properly before throwing more at me which starts to induce panic.
          It's a bit of a bug bear of mine that an alarming number of people are sent home with NIV machines programmed to the max treatment settings for them from day 1, which all too often leads to them shunning the machine because they can't get on with it in that particular set-up. It's like learning to drive in a Ferrari, rather than in a Nissan Micra 😏

          I wish that everybody had the chance to first get used to a few days of 'gentle' settings, before being put on personalised settings.

          The mask shouldn't leak, so perhaps the straps are slightly loose.


          Originally posted by WheelsOfSteel View Post
          What were your first impressions, and will I get used to it?
          My I used it overnight from the get go, Eddie, but my settings were tame - 10/4 and pressure support, rather than control - and it was relatively easy to sync my breathing with the settings. I have changed the settings since.

          And yes, I have every faith that you will get used to it; the key is to breathe normally, let the machine learn how to respond to your breathing patterns and vice versa - of course to 'breathe normally', one has to be relaxed, hence why people sit with it on whilst watching telly.

          If you think you'd like a day or two on lower settings, do ask. Any idea what your settings are? xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Thanks Ellie (and others)
            I just gave it another go and did better.
            I tightened the mask which makes it respond better when top pressure is reached and made efforts to "breathe normally" and not fight it.
            I listened to The Goon Show as a distraction
            Joked with my son that my corner of the living room is starting to look like Darth Vader's bathroom
            Hi, I'm Eddie.
            Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
            Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
            Still wondering what the future will bring.

            Comment


              #7
              WheelsOfSteel - really appreciate your post as this will be me next week and I'm trying to stay calm and optimistic. But really unsure how it will all work out. I am desperate to get used to it quickly.

              Do keep us updated on how you get on x
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

              Comment


                #8
                I absolutely hated the NIV at first! Like you I couldn’t get into the breathing pattern and it leaked everywhere. It’s now my best friend!!! They eventually gave me a different mask (not sure if they give the cheaper version out first ?!) so maybe mention that. I found that I was fighting it but now it’s a godsend so it’s well worth persevering. Good luck. Xx

                Comment


                  #9
                  I am trying it in one-hour stints sitting up. Still need a little more confidence before going for overnight.
                  I think my mask is ideal - it's a mouth / nose job.
                  Getting there
                  Hi, I'm Eddie.
                  Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                  Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                  Still wondering what the future will bring.

                  Comment


                    #10
                    WheelsOfSteel Good for you Eddie.

                    Does your mask kind of look like this?


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

                    Comment


                      #11
                      Ellie - Yes, that's the badger, just like an Alien facehugger
                      Hi, I'm Eddie.
                      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                      Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                      Still wondering what the future will bring.

                      Comment


                        #12
                        WheelsOfSteel That's the one I wear and my favourite of them all (so far) 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
                          I love my bipap once getting the pressures and timings right. it's the masks i have trouble with. I haven't found any that don't leak noisily
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                          Comment


                            #14
                            Rosemary6NT that’s so annoying isn’t it, particularly at night x
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              #15
                              Originally posted by Rosemary6NT View Post
                              I haven't found any that don't leak noisily
                              Rosemary, all masks can "leak noisily" if they're the wrong size or if the straps are too loose - have you tried tightening the straps and do you think the actual mask fits your face well? xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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