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Thread: Nippy and sleep. Masks. Any tips?

  1. #21
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    Quote 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

  2. #22
    Forum Member Pinkelle's Avatar
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    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.

  3. #23
    Forum Member Terry's Avatar
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    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.

  4. #24
    Forum Member Pinkelle's Avatar
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    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.

  5. #25
    Forum Member Terry's Avatar
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    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.

  6. #26
    Forum Member Ellie's Avatar
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    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.


    Quote 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 Limb Onset.

  7. #27
    Forum Member Pinkelle's Avatar
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    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.

  8. #28
    Forum Member Ellie's Avatar
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    Yes, do tell them about your issue with the condensation - it IS solvable.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  9. #29
    Forum Member Pinkelle's Avatar
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    Thank you, I will x

  10. #30
    Forum Member Terry's Avatar
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    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.

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