Announcement

Collapse
No announcement yet.

Nippy and sleep. Masks. Any tips?

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

    #16
    Hi my husband uses a mask that covers his nose and mouth. We also have to use a chin strap as he naturaly sleeps with his mouth open. As for getting used to it, mick has been using it throughout the night for a year now and we still often have nights when he cant stand it on so i take it off for him. The benefits of him using it have been massive. He had no appetite at all due to not exchanging his gases and had gone from 12 stone to 7.5 stone. He was experiencing hallucinations when awake and having terrible nightmares his voice had nearly gone. He didnt sleep properly and throughout the day would drift in and out and suffered terrible headaches. Since using the mask he has gone up to 9 stone, regained his appetite his voice is nearly back to normal and the hallucinations have stopped. If he doesnt manage a full night on it he suffers the next day so if you can possibly get used to using it. It is well worth it. I know that if my husband stopped using it he wouldnt be long on this planet.
    Thanks
    Jo

    Comment


      #17
      Thank you all for your responses. And I wanted to give you an update on how I got on.

      Nearly 2 weeks ago I got issued a Nippy 3+ and Amara View mask. I started out just an hour at a time and quickly worked up (over a few days) to having it on all night. From around 10:00 PM until around 5 AM the next day some 7 hours.

      This NIV has transformed my life. I had low appetite and I was very tired at the end of the day. I am now actually hungry at dinner time and can my meal with ease. I am not nodding off at 7PM in the evening and can make it all the way to bed time.

      So for me its a positive change and I am glad I have it now.

      Comment


        #18
        Well do Chris;

        It's best to start with a low expectation and build it up. Ellie always says it makes so much difference and it is nice to know that it has worked out so quickly for you.

        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


          #19
          Good to hear Chris. They're good masks.

          I'm all for getting and using "stuff" to improve my quality of life!! Whatever's on offer, I gratefully accept

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

          Comment


            #20
            That's great news Chris. It just goes to prove that one aid can improve 2 functions, in your case breathing and eating. Pleased you have also found new energy.

            Best wishes,
            Barry
            I’m going to do this even if it kills me!

            Comment


              #21
              Originally posted by Ellie View Post
              Good to hear Chris. They're good masks.

              I'm all for getting and using "stuff" to improve my quality of life!! Whatever's on offer, I gratefully accept

              Ellie.
              Same here. And BOGOF

              Got my PEG assessment tomorrow and I will have that as well

              Comment


                #22
                Hi. I went to mnd clinic yesterday. Did the blow into the tube test and its gone down from 29% to 26% the nurse said that's a fair bit since last time (4 months) I have noticed in the last couple of weeks it's a slight effort taking a deep breath. I don't know what the numbers mean. What is normal? I've been given a nippy machine but only been using it sporadically in the day time.

                Comment


                  #23
                  Hi Pinkelle;

                  What did the nurse say about using the Nippy?

                  Do you know what your blood day time CO2 and oxygen level were and also your over night oxygen levels?

                  I can't blow much to order but I can at other times and I have the ability to do a good cough.

                  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


                    #24
                    I don't know those terry. I was given the nippy about 8 months ago now but didn't feel any benefit from it. I will use it now as I feel it could help. The consultant said just persevere and take it off when it becomes intolerable. He said I will probably get used to it in time.

                    Comment


                      #25
                      Great instructions, normally they say use it over night but it's a good idea to try to get used to it for a couple of hours during the day time first.

                      They do seem rather vague about the whole thing.

                      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


                        #26
                        Hi Pink,

                        For most people, the greatest benefit in using a BiPAP / Nippy machine is to be had whilst sleeping, as O2 levels tend to decrease when lying down and CO2 levels can increase if the breathing muscles are not strong. The BiPAP lessens the load on your breathing muscles, so even if you don't "feel any benefit" from using it, your muscles do benefit from it.

                        It's shameful that your consultant is negative towards the BiPAP and advised you to use it until it became intolerable A mask, any accessory, nor the machine settings should ever be intolerable - there are numerous variables which can make using a BiPAP machine a comfortable and positive experience.


                        Originally posted by Pinkelle View Post
                        ... gone down from 29% to 26% ... I don't know what the numbers mean...
                        An FVC of 26% means that for a given gender, height, weight and age, you are at 26% of predicted outcome with respect to a healthy peer.
                        BUT... a poor lip seal can affect the test (that applies to most of us) and the SNIP test is seen as a better test, which many clinics now do, rather than the "blow test". They are just numbers - meaningless on a day-to-day basis - what is important is managing your symptoms to allow you live the best life possible.

                        (FWIW, my last FVC was also 26%, that was over 4 years ago)

                        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


                          #27
                          The mask is OK. It's the dry mouth I can't cope with. Tried a humidifier but the that gets full of condensation and makes a gurgling noise which wakes me up!! I've got a respiratory appointment next month so will have a good chat with them.

                          Comment


                            #28
                            Yes, do tell them about your issue with the condensation - it IS solvable.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              Thank you, I will x

                              Comment


                                #30
                                Hi Pink;

                                You could do with support and information now waiting a month is not good. Ask for your overnight oxygen %, both average and lowest and day time CO2 and oxygen as well.

                                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

                                Working...
                                X