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Thread: To all our bipap users

  1. #1

    To all our bipap users

    Hello all

    I haven't used bipap much cos I never had the need really.

    But this last week, whenever I wake up from a sleep, I feel breathless. It isn't a "gagging for air" feeling but I know I need to use bipap.

    Did you all start with this? It is a strange sensation, hard to describe.....! It just feels as if your lungs are half empty and I have a husky little tickle in my throat. Once i reach for bipap I am ok

    I have had pain in my left ribs, emanating from pre hoist days when Peter was man handling me from chair to shower chair. The surgery say it Is pulled muscles under the ribs which could have affected diaphragm -but I know diaphragm muscles weaken with MND

    I am getting so I don't want to fall asleep - cos i wake up in a fret! Was anyone else like this? Perhaps i had better get conditioned to using the bipap more often?

    Any advice much appreciated

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Joycie,

    I don't know much about the machine.

    Are your O2 levels low or your CO2 levels low.

    I think that we can wake up feeling like we need more air but are really OK.

    Get your over night level.

    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.

  3. #3
    Hello Terry
    The only time I have levels checked is at Sheffield

    Can you check it at home?

    Joycie xx

  4. #4
    Forum Member Katrina36's Avatar
    Join Date
    Jul 2015
    Hi joycie,, you can have your levels checked from home, dads had it done twice, the first time he had the monitor on his finger overnight when he was sleeping and it was attached to a like a watch thing on his wrist, and they picked it up the next day, then last week he had another one done overnight at home again, but this one clipped on his ear overnight and they picked it up the next morning, much easier than having to go to hospital, maybe you could ask for that..... Katrina x

  5. #5
    It hit me quickly after a chest infection. I am 24/7 now.

    If you feel like you need it, use it. Don't worry about the numbers.

  6. #6
    Steve, I have been ok for so long, as you know! . I have had a bad run since October really.. Seems every couple of days it throws something else up! May as well decide to use it at night! Last night it was utter confusion. I couldn't settle and had our lovely night carer transferring me to thevriservreckine chair at 0300 hours


    Joycie xx

  7. #7
    Me too Joycie, it never stops does it?

  8. #8
    Hi willsandco .. This is not a bipap machine but it might be of interested to someone out there .. My friend uses a manual bag and mask to help with his breathing and maintain a clear chest .. See photo ....he can work it himself or I can help him .. He uses it 4 times daily by placing the mask over his nose and mouth pressing the bag and at the same time breathing in thus forcing more air into his chest and lungs .. The physio works out how to operate it and gives advice on its use
    Just thought I would share this for anyone who might be interested or perhaps wish to enquire about it .... DVD
    Last edited by Dvd; 8th February 2016 at 16:12.

  9. #9
    Hello all

    I haver been using bipap, both in bed and in the chair

    Can't say I have used it much before. Every time the carers come to hoist me to the shower chair, I have a runny nose and can't breathe through it at all.

    Is this normal?

    If it is, I will cut back on bipap. Totałly incapacitating being unable to breathe - having to sit on the loo and manage tissues, a jar of Vick and a bio bidet remote control!

    Thanks, guys

    Much love

    Joycie xx

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