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Thread: Living with a Ventilator

  1. #31
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    Hi Ellie
    It started about 3 months ago, but seems to be happening more now. Not really breathless.I think it is just the chest but also my back. I get no warning it just happens. Hard to explain really, sometimes it happens when I lay down for a nap. Maybe I am over worrying.
    Thanks,
    Sheila x

  2. #32
    Forum Member Ellie's Avatar
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    Sheila,

    It could well be reflux, given that you've a burning/hot feeling which mostly happens lying down.

    Because our tummy and chest musles weaken, reflux often rears its ugly head and spams, heightened reflexes - oh, the joys!!

    Hope those meds work for you.

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

  3. #33
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    Thank you Ellie, I think you are right. The doctor gave me omeprazole to take. And I can dissolve it in water. Hope it helps.
    Love Sheila

  4. #34
    Forum Member Lynne K's Avatar
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    I've been prescribed Omeprazole before MND as the Naproxen an anti-inflammatory drug that I'd been on for years wrecked the lining of my stomach especially the eroded top of it. But I didn't take the Omeprazole because it can interfere with the uptake of calcium. And it can interfere with your uptake of Rilozone. So I take care of what and when I eat instead of the pills and that works for me most of the time. I avoid eating before bedtime and always avoid too much fat. I'm caught out sometimes though and loose most of a night's sleep because of reflux, heart burn and feeling sickly. I miss Naproxen though. It's a great pain killer for some conditions. Lynne
    Last edited by Lynne K; 12th November 2019 at 17:26.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #35
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    Thank you Lynne, that is good advice as Well. It is hard to find a happy medium with all our problems. My husband takes naproxen for pain, he said it is very good.
    Sheila

  6. #36
    Forum Member nunhead_man's Avatar
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    Hi Dina

    Quote Originally Posted by Gillette View Post
    The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough carbon dioxide
    That is quite right but actually in my case as I am practising for when my lungs do not work properly - at the moment, the diagnosis is sleep apnoea found when my neurologist was wanting a base line test on my breathing and oxygen levels overnight.

    I am increasingly finding that sleep apnoea is very common and it may be that the oxygen deprivation arising from it may be 1 of the reasons why the size of brain is thought to be smaller than it ought to be.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  7. #37
    Forum Member Gillette's Avatar
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    Hi Andy

    Is sleep apnoea a symptom of MND? I donít know. I know that weakness of the muscles for breathing is, which was why I mentioned it.
    Dina

    Trying to keep positive, but not always managing.

  8. #38
    Forum Member Ellie's Avatar
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    Andy,

    Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc? (I think I asked you before, sorry)

    It's just I wonder if you do breath stacking exercises or perhaps your FVC is good, so they aren't necessary?

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

  9. #39
    Forum Member nunhead_man's Avatar
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    Hi Dina

    Quote Originally Posted by Gillette View Post
    Is sleep apnoea a symptom of MND?
    As far as I know not - this was picked up for me when my neurologist wanted a based test of how my breathing was so that subsequent tests which show when it was deteriorating.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  10. #40
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie

    Quote Originally Posted by Ellie View Post
    Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc?
    As I have just said to Dina I got my Nippy when having a base line test and sleep apnoea was diagnosed.

    As to the other alphabet soup. I am afraid I do not recognise any of the other items you mentioned, but they do give me a full breath test when I go in - at least they have on the two occasions so far, the next one being in January 2020
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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