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Thread: Nippy and sleep. Masks. Any tips?

  1. #11
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    Thank you Ellie
    That's makes me feel better about it.
    Mags xx

  2. #12
    Forum Member Calum's Avatar
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    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

  3. #13
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    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

  4. #14
    Forum Member Nettie B's Avatar
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    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

  5. #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

  6. #16
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    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

  7. #17
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    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.

  8. #18
    Forum Member Terry's Avatar
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    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.

  9. #19
    Forum Member Ellie's Avatar
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    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 Limb Onset.

  10. #20
    Forum Member Barry52's Avatar
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    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
    Iím going to do this even if it kills me!

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