Announcement

Collapse
No announcement yet.

Nippy and sleep. Masks. Any tips?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Nippy and sleep. Masks. Any tips?

    I have been reading up on the reasons for my poor sleep. I understand that its probably low oxygen that is causing this. My Oxymeter reading was 92% which I understand is marginal.

    So I am looking forwards to a good night sleep from the 2nd of December when I get fitted out with a NIPPY.

    So my questions.

    Will it make that much difference to my sleep?
    What is the best type of mask?
    Any tips for getting used to the mask? I sleep on my side BTW.
    Will it keep my wife awake?

    Thanks, Ali&Chris.

    #2
    Hi Chris,

    As breathing muscles (diaphragm and intercostals) weaken, the exchange of gases (CO2 & O2) deteriorate, leading to a build-up of CO2 in the blood. It is this that a BiPAP machine addresses.
    Is the O2 sats of 92% whilst sitting or laying down? Early morning, daytime or middle of night?
    It doesn’t always follow that O2 sats of 95% means CO2 retention levels are low, btw.

    To answer your Qs:
    It all depends on why you weren’t sleeping in the first place – if it’s breathing related, then probably, yes.
    There are several types of masks. The Respiratory Technician will give you one best suited to you; nose / mouth breather etc..
    Usually one uses the machine for a few hours during the day at first to get used to it before night use.
    No, it’s quiet.

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

    Comment


      #3
      Originally posted by Ellie View Post
      Hi Chris,
      Is the O2 sats of 92% whilst sitting or laying down? Early morning, daytime or middle of night?
      It doesn’t always follow that O2 sats of 95% means CO2 retention levels are low, btw.
      Ellie.
      Thanks for answering my questions and the reply. The 92% was sleeping so lying down yes. And it was all night. Put the machine when I went to sleep and switched off when I awoke. They said the minimum was 94% and mine was 92% so I am borderline.

      I may where it at work then. That will get me a few stares

      Comment


        #4
        Hi Chris;

        I thought 92 whilst sleeping was not to bad but my advarge was 95 so it might be a little low. what is it during the day time? If you get headaches during the night and early morning (like a bad hangover) then you probably have a C O 2 build up. As Ellie says, try for short periods whist sitting, perhaps two hour, your lunch break I wish.

        Love Terry
        Last edited by Terry; 24 November 2016, 16:50.
        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


          #5
          Often other factors such as CO2 blood gas level and FVC are also used in determining a need for breathing support.


          Terry, 92% sats overnight is a wee bit on the low side.

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

          Comment


            #6
            Hi guys, I had an arterial blood test while I was at the respiratory center and that was normal. Dont know what my oxygen was during the day as they only monitored it at night. Nor do I know what my CO2 was. I will ask a lot more questions next time. But its a steep learning curve. But thanks for coming back.

            Comment


              #7
              Hi
              When I was given my nippy the other day, which im still getting used too.
              They tell me I've gone into respiritory failure? But I sleep well and I don't wake with headaches!
              So, I don't really know what I will benefit from using it?
              I'm using for half hour each day to practice, I can't imagine ever sleeping with it on, but as say, practice makes perfect
              Mags xx

              Comment


                #8
                I am waking with headaches - I think I'm retaining CO2. I have an appointment with the respiratory clinic on Wednesday. BC

                Comment


                  #9
                  Good luck BC
                  Are you going to St Thomas's? I usually to Kings for every thing, but I'm under St Thomas now as they are the experts in respiritory .
                  The tests show I have too much carbon dioxide.
                  Let's me know how you get on
                  Mags x

                  Comment


                    #10
                    Hi Mags,

                    I just want to say don’t be too alarmed at the “Respiratory Failure” label. Anyone needing BiPAP NIV has respiratory failure.
                    The term means the gas exchange in the respiratory system is inadequate – in our case we’re not expelling enough CO2 – hence the label.


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

                    Comment


                      #11
                      Thank you Ellie
                      That's makes me feel better about it.
                      Mags xx

                      Comment


                        #12
                        Hi guys,

                        My first sleep study pre-NIV was oxygen dipping down as low as 65% and CO2 levels of as high as 9.5 - i had been living with these levels for a few months before eventually getting access to a Nippy. To keep an eye on my oxygen levels i use a basic oximeter:

                        https://www.amazon.co.uk/Oximeter-Di...eter+fingertip.

                        In terms of a good mask to start with - i'm currently using a Philips Dreamwear mask at night and i am finding it the best I've come across:

                        http://www.eu-pap.co.uk/dreamwear-fi...2qYaAjDj8P8HAQ

                        Another tip from my perspective is to use as light weight tubing as possible as this will limit the drag on your mask - the best tubing i've come across is;

                        https://mysleep.resmed.com/GB/en/Sle...imLine/p/36810

                        Comment


                          #13
                          Hi Calum,
                          I can't believe you waited so long for a nippy while you struggling.
                          I'm not sure if I could use a nasal mask because my nose always feels blocked and I breath with my mouth open?
                          I bought a finger oximeter, to keep an eye on it, it seems to be 91 or 92
                          Mags xx

                          Comment


                            #14
                            Hi Ali and Chris.
                            My Trevor had very bad problems with drooling from very early on in his MND journey. Unfortunately we never did manage to find a solution for that that suited him for one reason or another. I think I he tried everything!
                            This meant that when he used a Nippy the full face mask was not successful for him as saliva collected in it. The nose mask was much better, with tissues under his chin.
                            As for my sleep ... I found the gentle rhythm of the Nippy quite soothing. I found that I tended to breath in sync with Trevor and dropped off easily. I was only disturbed if he woke to need the loo or something but the Nippy itself caused me no strife at all. It was good to feel that he was having some intervention that seemed to help him despite the fact that he couldn't manage full nights with it.
                            We did find that he needed a humidifier along with the Nippy. I think that's often the case.
                            I do wish you well. It's do good to see a couple both using the forum. We did too but in fact we caused a good bit of amusement from time to time when we were having communication problems so some friction. We were "in it together" but despite this MND did test us. Don't worry if this ever happened to you. It's nice if it doesn't but not surprising if it does.
                            May the good times out weigh the other bits. All the very best to you, Nettie

                            Comment


                              #15
                              Hi Ali and Chris,

                              You might find this website helpful http://niv.mymnd.org.uk It has some people talking about their experiences of using NIPPY (often also called NIV).

                              The MNDA also have a helpful few leaflets on Breathing problems, breathing support and tips and hints:
                              http://www.mndassociation.org/wp-con...g-problems.pdf
                              http://www.mndassociation.org/wp-con...ne-disease.pdf
                              http://www.mndassociation.org/wp-con...ng-for-niv.pdf

                              Comment

                              Working...
                              X