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    Last night was a waking nightmare for me. I was involuntary burping my stomach contents roughly every half hour which woke me every time, add to that hiccups and by 4am I was seriously considering my brachial artery.
    There is more to MND than meets the eye. 😞
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    That sounds really horrible. I gather you haven't eaten anything suspicious. Let's hope it's not the same tonight. You ok now? 😚

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      #3
      I'm back to my normal self and hoping it was my abortive attempt at attempting to turn back the clock that was the culprit. I'm not blitzing sausage and beans with milk again. πŸ˜ƒ
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Oh yuk. The milk was probably the culprit. Beans can be deadly.

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          #5
          Morning Matthew, it's handy to always have a bottle of domperidone in the house (very different to a bottle of Dom Perignon unfortunately πŸ˜€) It's an antinausea/antisickness med and really, anyone with bulbar issues should get a script for it - vomiting would be catastrophic for me, so I take it if I feel nauseous, which isn't often, and it works a treat.

          You should also learn how to vent your stomach using the feeding tube - YouTube it some afternoon you're bored.

          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 Ellie
            just looked at a few YouTube videos. So you can suck out wind or liquid using the pump and then pump warm water (could you add some bicarbonate of soda?) to settle the stomach?

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              #7
              Originally posted by denise View Post
              So you can suck out wind or liquid using the pump
              Erm, that doesn't sound like venting πŸ€” There is no pump, nor is anything sucked out. Air is let escape from the stomach through the tube and an empty syringe.

              Bicarb could block a feeding tube so do be careful if you ever were to use it.

              ​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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                #8
                Thanks very very much Ellie. I have domperidone on the way πŸ˜ƒx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  πŸ₯‚
                  ​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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                    #10
                    Hope you have a better night Matthew,

                    Being awake in the night can lead to the darkest thoughts so fingers crossed you'll snooze peacefully.

                    Love Debbie x

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                      #11
                      Deb you are a lucky charm. 😍x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        Hi Ellie
                        just looked up venting with a peg and yes it does saying about manually venting using a syringe to pull out the air, on you tube. Not that I intend trying this. We call his syringe a plunger or well anything just depends on the name that comes to mind. I thought bicarbonate of soda mixed with water would settle the stomach as well as clear the pipe.

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                          #13
                          Venting a feeding tube is all about letting any air which is causing discomfort to escape of its own accord using a syringe, minus its plunger, and held high above the tummy to minimise the risk of fluid coming out. Personally, I wouldn't advise "using a syringe to pull out the air", but if that's what you prefer, that's fine - we all have our preferences, many of which would undoubtedly raise an eyebrow of a healthcare professional...

                          Same goes for using bicarb - advice is not to but I'm sure plenty do, just be careful Denise, I'd hate to see you stuck, especially as you don't have much support there...

                          All the best to you.
                          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


                            #14
                            Sorry to hear about your experience Matthew, and noted down Ellie's advice for thing to have handy. I thought I was going to be sick with pain from cramps a while ago, but hope to have this more under control with exercises now. x
                            Diagnosed July 2020, ALS bulbar onset.

                            Comment


                              #15
                              The venting thing is really handy to know. When I was being shown how to feed Stephen with the syringe/peg she did pull out stomach contents and say if this happens when going to flush do it later. It wasn't a pleasant introduction.

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