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Saliva episode 58

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    Saliva episode 58

    I'm still having trouble with saliva. I've got a hyoscine patch on and I have an atropine drop early afternoon and late evening. When I have a feed the saliva production seems to go into overdrive. How many drops do others take and how long do you try to keep it under your tongue. I usually manage about ten minutes before it's mixed with the other saliva and been swallowed. Could it be that neither of the drugs are working? The respiratory physio came today and while she was here I put the ventilator on. I only had it on a few minutes but she was surprised how much saliva ended up in the mask. I think she realised why I haven't used it much. I know there might be the option of Botox or the Matthew option of radiotherapy, but I'm not sure I want to go down that route just yet. Any comments or experience welcome.
    Each day is made easier with a bit of humour.

    #2
    If you want to try other meds before going for other interventions, you could try glycopyrronium bromide or amitriptyline, if you haven't done so.

    Sorry I can't help you on atropine, never took it x
    ​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
      Originally posted by Ellie View Post
      If you want to try other meds before going for other interventions, you could try glycopyrronium bromide or amitriptyline, if you haven't done so.

      Sorry I can't help you on atropine, never took it x
      Yes, the physio mentioned glyco. She's going to feed back to the consultant and see what he says.
      Each day is made easier with a bit of humour.

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        #4
        The good about glyco is that it goes through the tube and it can be easily titrated x
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Thanks, I read that it went under the tongue.
          Each day is made easier with a bit of humour.

          Comment


            #6
            I wasn't aware glyco came in an under-the-tongue form GaryM It seems counterintuitive to prescribe sublingual treatments when excess saliva is the problem - at least you know that it comes in liquid and tablet forms if needed.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Originally posted by Ellie View Post
              I wasn't aware glyco came in an under-the-tongue form GaryM It seems counterintuitive to prescribe sublingual treatments when excess saliva is the problem - at least you know that it comes in liquid and tablet forms if needed.
              I was just going off this;

              https://www.palliativecareguidelines...il-2020-10.pdf
              Each day is made easier with a bit of humour.

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                #8
                Oh, OK, if you think you could manage to take it that way. 200mcg/ml is a tiny dose though, so you'd need 5ml to get 1mg of glyco, which is the same as the liquid (by tube) formulation. As a guide, I take 2mg, 2x per day which controls my saliva production.
                ​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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                  #9
                  It'll probably depend on who prescribes it. It might be the respiratory consultant at Wythenshawe or the palliative care nurse that I've not met yet.
                  Each day is made easier with a bit of humour.

                  Comment


                    #10
                    Hi Gary,

                    My saliva I thought was bad last year now I’d describe it as horrendous and controlling my life more, last year I tried every medication with no positive result so after a lot of pushing I finally got a referral to Queens Square hospital in London and had Botox injected this Thursday Apparently it will take about two weeks to take affect so fingers crossed, I’ll let you know if it works.

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                      #11
                      Thanks for the input David. After battling with too much during the day, last night I woke up at 3am choking on thick mucus somewhere in my throat, you know the sort that lets you breathe out but not in. I did have my second covid jab yesterday and took some paracetamol before bed as a precaution. I had a bit of a fever after the first one. So whether that affected my saliva I don't know, although I wouldn't have thought so. I couldn't think how to get rid of it, so we tried a mouth sponge dipped in water to add some moisture which seemed to help. I hope it's not the same tonight.
                      Each day is made easier with a bit of humour.

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                        #12
                        Are you taking carbocisteine? I really notice the difference when I run out.

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                          #13
                          Originally posted by matthew55 View Post
                          Are you taking carbocisteine? I really notice the difference when I run out.
                          No, but I was going to mention it to the palliative care nurse when I see him.
                          Each day is made easier with a bit of humour.

                          Comment


                            #14
                            GaryM If you were using NIV when the thick mucus happened, the humidifier might help as you wouldn't be breathing in dry air.

                            And, sorry to bamboozle you with more suggestions to ask the palliative care nurse, maybe using a saline nebuliser would thin the secretions too, as well as the carbocisteine. Ask him too how carbocisteine might impact your saliva, given it's such a problem for you. x
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Not using NIV yet. It does have a humidifier. I'll ask about nebuliser. Ta.
                              Each day is made easier with a bit of humour.

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