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Hello I’m Douglas

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    Well the last 2 CO2 readings were 6.4 then 6.6

    They aim to combine a sleep study with the overnight ventilation as the current settings sometimes send the next boost before I breathe out

    The doctor has come round to RIG so I need a CT scan to ensure the stomach is in the right place

    RIG may not happen in this stay

    Comment


      It's certainly turning into a saga Douglas, I'm sorry.

      Hope the sleep study gives relevant information on what's happening during your nocturnal breathing - be it apnoeas, actual BPM (breaths per minute) data and tracked O2 saturation levels etc. - so you can get the optimal benefit from NIV.

      Are your sats / O2 levels OK and fairly constant?

      Sounds as if you have to bear hospital food a while longer

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        Pressure Support vs Pressure Control ?

        Comment


          Pressure Support mode is best for augmenting breathing in people with respiratory failure due to ALS.

          However, I don't know your sleep study results Douglas and, if your Nippy is in Pressure Control mode, there may be a reason why. If yours is in Pressure Control mode, ask why. (The difference is to do with inspiration timing.)

          How was the sleep study?

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            Still haven’t been told the sleep study results

            The consultant listened to my description and had the mode changed to support

            I told him “
            ventilation is brutal

            When the mask is fitted I’m Drowsy then the first blast hits and I’m
            Wide awake thereafter

            Comment


              It really should've been on Pressure Support from Day 1

              You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel natural, i.e. set up correctly and with a comfortable mask.

              I suspect the CO2 retention is making you feel drowsy and when these levels drop from using the Nippy, you feel more alert.

              I do wonder about your settings though, especially as it appears not to have been in the optimal mode all this time.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                Hi Douglas and Ellie

                Originally posted by Ellie View Post
                You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel natural, i.e. set up correctly and with a comfortable mask.
                I have been provided with a Nippy by the breathing team as my overnight sleep study showed sleep apnoea and a minimal loss of diaphragm strength at the moment.

                When I first tried it in the clinic I had this real sense of air being pushed at me when I did not want it and they did something to the settings that means this does not happen quite so much - would it help if I posted my settings?

                Please note I also have the Nippy 4 not the Nippy 3+ and while the 1st one I had simply would not light up the 2nd one seems to adjust to the length of my breath inwards and outwards so as I breathe more slowly as I fall asleep the machine seems to adjust.

                Warmly
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                "Things turn out the best for people who make the best of the way things turn out"

                Comment


                  Yes Andy, settings are key to using NIV successfully !!

                  With the optimal settings, you shouldn't feel any forced breathing - just that the machine is in sync with your breathing pattern, which seems to be the case with you Andy.

                  It doesn't matter what model of Nippy is used, nor the brand of NIV machine, the settings are constant for the individual's 'prescription'. You can post yours if you want - because you use NIV more for apnoea rather than respiratory failure, your settings may be somewhat different.

                  Love Ellie.

                  Vote Andy for Trustee
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    Hi Ellie

                    Thank you - both for the information and for the endorsement

                    I guess the St Thomas's Lane-Fox Respiratory Unit knew what they were doing after I complained about it blowing in my face.

                    Warmly
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                    "Things turn out the best for people who make the best of the way things turn out"

                    Comment


                      Well I’m sleeping much better but of course the CO2 is reset and last night 6.9

                      PEG is back on the agenda but maybe not on this hospital stay

                      Comment


                        Douglas, can I just check please, it's just room air you're breathing, is it? No added oxygen?

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          Originally posted by Ellie View Post
                          Douglas, can I just check please, it's just room air you're breathing, is it? No added oxygen?

                          Love Ellie.
                          Yes just room air after it’s passed over the water tank

                          Comment


                            Do you know the settings they've set the Nippy at? IPAP & EPAP.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              Co2 6.8

                              ipap 24
                              epap 5

                              Comment


                                Hi Dis;

                                I think that's what Ellie's after. Hope you are keeping well and entertained. At least they have not given you oxygen like two of our friends have had over the last year.

                                Love Terry
                                TB once said that "The forum is still the best source for friendship and information."

                                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                                Comment

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