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Hospital respiratory appointment and laryngospasm.

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    Hospital respiratory appointment and laryngospasm.

    Yesterday my son kindly supported me to go to hospital for breathing tests and to see physio about equipment (my last hospital appointment must have been good 7 months ago?). I use my Bipap ventilator all night, and increasingly in the day when feeling too tired and breathless. I have got 2 ventilators, one with a battery for power cuts and going out/away. Physio suggested both have batteries in case power cut whilst sleeping, and I will now keep one for daytime use when I am feeling particularly breathless, with higher settings. I am also trying a new mask which seems easier to breathe through. All useful, physios kind and helpful.
    Then we looked at my cough assist, which I didn't initially take to because I thought it strained my throat too much. However, having had a chest infection and great difficulty breathing with mucus blocking my throat, I am very keen to find things to help in such a horrible situation. I have been practising on the cough assist regularly since then, on its original low settings, but haven't really noticed it helping bring up phlegm or bring up something I have choked on. But mind you the phlegm is not really bothering me much now, it being a lot thinner on carbocysteine. So the physios persevered getting me to try different settings until I was tired and my voice so croaky. Anyway I brought cough assist home to try on more powerful settings.
    In the evening I tried to eat some pureed ready meal, but the first mouthful really set off a bad laryngospasm. Used to get some of these but not at all recently, and this time it seemed to affect me more, racing heart, hot, trembling, absolutely exhausted. I remembered Ellie's advice to just relax, which I attempted after trying unsuccessfully to open the door for fresh air. Just checked threads on this subject. My guess is that my throat was very sensitised by working so hard on cough assist. But will consult the physios. Anyway, I suppose there isn't anything preventative that will help prevent these? In a drawer I have an old bottle of baclofen, was it for preventing cramp? I think I was getting cramp in my hands when using them a lot, eg preparing veg for cooking, and cramp in my legs. Is laryngospasm similar? Thanks
    All this equipment to keep me alive! I used to try to live a simple life with low carbon footprint ! x
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

    #2
    Heather R read with interest as my breathing is an issue. Needing cough assist...yet to materialise.

    Good idea to have 2 NIV machines...did hospital provide both?

    Take care๐Ÿ’™

    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      #3
      Heather R I really admire you Heather, you're such a gutsy lady ๐Ÿค—๐Ÿ’ช

      I'd tend to agree with you in that your throat had been through a lot yesterday and was perhaps tired and/or extra sensitive.

      Baclofen is an antispasmodic medicine, meaning it treats spasticity rather than a transient spasm - spasticity is when the muscle tone is so high that, for example, to bend your knee feels as if you're trying to bend plastic - so taking it won't prevent any muscle from going into spasm, but it may lessen the severity of a spasm in *some* muscles as the muscle tone is already lowered (by taking Baclofen daily). I can't see Baclofen use really aiding laryngospasms however.

      "All this equipment" is to improve your quality of life, which you deserve in bucketfuls. As for your carbon footprint... I'm quite sure you're travelling less now than before, don't consume high CO2 tariff chunks of steak or buy much - we'll have to accept the sadness of medical plastic waste ๐Ÿ˜ช๐Ÿ˜ช

      Anyhoo, let us know what you think of the cough assist machine over the coming weeks. ๐Ÿ˜˜๐Ÿ˜˜
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

      Comment


        #4
        Originally posted by LindaB View Post
        Heather R

        Good idea to have 2 NIV machines...did hospital provide both?

        We were provided with 2 and advised that it is a NICE recommendation. 1 as a backup. neither are used yet.

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          #5
          LindaB yes Linda both provided by NHS. I got the second when worrying about having to go away when my adaptations were done, but up to now just treated as a spare which I was so glad to have when we got a power cut at night round here. xxx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Ellie thanks so much again for very useful information and advice. I was so glad at the time of having your p
            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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              #7
              Ellie thatโ€™s my clumsy fingers again, shooting off the message before finished. I was so glad to have remembered your previous info about trying to relax and the fact that if itโ€™s too bad, you pass out and muscles relax, comforting! Xxx
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

              Comment


                #8
                Heather R Iโ€™ve never had much success with my cough assist but better results with my LVR bag and willing partner! Clumsy fingers are also a problem for me ๐Ÿ˜‚
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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