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    Choking at night

    I’ve been having random episodes of waking up choking and feeling I can’t breath. If I choke when awake I can manage it by staying calm and concentrating on taking air in through my nose. However, when it wakes me up I’m not conscious enough to deal with it in that way, and it’s distressing. I make really loud strained noises and really struggle to clear it. I assume it is saliva gathering in my throat while I sleep. Does anyone out there have a similar experience? Is anyone aware of ways to avoid/ deal with this situations ? Thanks. Lizzie x

    #2
    That does sound very scary and distressing Lizzie and, as you say, anything which happens during the night is 100x worse than daytime events, especially when it affects your ability to breathe.

    GaryM has posted about similar issues, - I think he may have thick secretions, as well as saliva pooling, I am sure he'll go into details.

    I know that loud noise - I make it too, it's like a reverse thrust and I often sneeze shortly afterwards. I take meds to reduce saliva production.

    You need to know if it's caused by saliva or thick mucus, then you can take meds, use nebuliser, cough assist, etc. Also, if you sleep flat and/or on your back, changing position may help.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hello Lizzie - only it reminds me of, something called larongeal spasm where can't breath for a half a minute or so. Feels like going to die. (Acute) Had for years. I didnt think related to mnd rather but to trachea going in to spasm. Assumed (still do) - related to alcohol / acid reflux - but recently had something similar choking on cup of tea.

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        #4
        Sounds very scary.
        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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          #5
          It is Evelyn! Like I say, think this probably unrelated.

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            #6
            Hi
            Well I had a call today from respiratory team saying time to consider NIV( non invasive ventilator ) at night ASAP based on sleep monitor readings last week.Apparently need to get this in place and used to it for a few nights before they have me in to do the PEG procedure.Gave me a shock even though I knew things are changing.I actually sleep fairly well for a straight 5 hours.Loo trip and back to sleep again.
            A challenging few weeks ahead I guess.
            Best wishes
            Mary

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              #7
              Originally posted by Mary C View Post
              A challenging few weeks ahead I guess.
              Maybe so, but you are not alone here Mary. x

              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                At 3am everything is scary. I have found that when I make noise I can silence it by focusing my mind on something else, for me going up the stairs backwards usually works. My breath stopping also happens and for that it's patience to force an intake via mouth or nose. Practice makes perfect I'm sorry to say. 🤔
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Originally posted by Lizzie View Post
                  I’ve been having random episodes of waking up choking and feeling I can’t breath. If I choke when awake I can manage it by staying calm and concentrating on taking air in through my nose. However, when it wakes me up I’m not conscious enough to deal with it in that way, and it’s distressing. I make really loud strained noises and really struggle to clear it. I assume it is saliva gathering in my throat while I sleep. Does anyone out there have a similar experience? Is anyone aware of ways to avoid/ deal with this situations ? Thanks. Lizzie x
                  Scary indeed Lizzie. I hope that the suggestions posted by others help and that you find a temporary solution for tonight so that you can have a great nights sleep without any choking. Lovely Lynne x
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

                  Comment


                    #10
                    Originally posted by Mary C View Post
                    Hi
                    Well I had a call today from respiratory team saying time to consider NIV( non invasive ventilator ) at night ASAP based on sleep monitor readings last week.Apparently need to get this in place and used to it for a few nights before they have me in to do the PEG procedure.Gave me a shock even though I knew things are changing.I actually sleep fairly well for a straight 5 hours.Loo trip and back to sleep again.
                    A challenging few weeks ahead I guess.
                    Best wishes
                    Mary
                    I hold that you hospital trip sorts out your problems Mary and you can have enough rest in the ward. I always take headphones and an eye mask. Too bright and noisy on hospital wards but these work for me at home and when admitted. Lynne x
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Thanks for advise Lynne.I have an eye mask so must remember it.I am one of those people that like it dark and quiet to sleep..not expecting that in hospital.

                      Amazing how the human mind has the ability to adapt to whatever comes our way.This morning I felt shocked about the thought of a NIV being needed sooner rather than later.Also the thought of a PEG which is also imminent.Some lovely people on here have reassured me and shared their own experiences in an honest way of how PEG and NIV helped their breathing and aided better sleep and improving nutritional intake.

                      I had a good on line monthly zoom session today with other local people living with MND arranged by MND Association.It’s great particularly as Covid prevented many support groups meeting face to face.It’s another source to share information and support each other whilst “seeing” each other.
                      Best wishes
                      Mary

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                        #12
                        These procedures are always made out by some to be a bad thing. Not so. NIV and Peg are up with movable beds and wheelchairs as things that actually improve our precious lives,
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          Sleep upright and get your GP to prescribe mucodyne. A 'mucus plug' can be deadly and an old thread is no longer available that discussed this matter.
                          Last edited by Graham; 13 May 2021, 23:47.
                          Copyright Graham

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