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    Dry mouth

    Do other people suffer with a dry mouth at night?Its really unpleasant to wake in the night parched and despite sipping water it doesn’t feel better.I have artificial saliva gel and synthetic saliva spray.
    I have discussed this at length with the palliative care team as this was never a problem until I started taking Riluzole.I have tried eating pineapple to relieve this as suggested by consultant to no effect.
    I am not asking for medical advise as this is not a forum to do so.But rather wondering if others have experienced this nocturnal dry mouth symptom.??
    Best wishes
    Mary

    #2
    I wake up repeatedly with dry mouth and use a sponge on a stick in water . I changed the water daily. 😁

    Comment


      #3
      Hi Mary,

      Overnight dry mouth is all too common in MND, made all the more annoying as during the day we can't swallow our saliva fast enough, leaving us with the opposite problem 😣

      Sometimes it's a side effect of meds we take, sometimes NIV related, sometimes it's because our mouths open, even slightly, when we sleep due to weakening facial muscles - sometimes it's a combination of these factors, whatever the cause, dry mouth is a pain!

      You could try a chin strap, not the prettiest of nightwear, but if breathing through your mouth is the cause of your dry mouth, the strap should reduce or eliminate it.

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

      Comment


        #4
        Hi Ellie,
        I don't use a NIV yet and I don't have excess saliva in the day. The problem seemed to coincide with when I started taking Riluzole.I also get a coated tongue which may or may not be due to mouth breathing at night. Not sure about the chin strap yet but it may come to that.
        Best wishes
        Mary

        Comment


          #5
          Sleepiness and tiredness/lethargy are common side effects of Riluzole, maybe you're having a deeper sleep and your mouth is slacker than it previously was - I'm just thing aloud, Mary!!

          And I agree, the chin strap isn't exactly a great look to rock 🤭 xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi Mary,

            I wake up with a dry mouth every morning. The gel helps but it’s the NIV that causes the problem with me. I’ve sort of got used to it, just another one of the joys of MND.

            Andy x
            Sporadic MND/ALS - Limb onset - Diagnosed May 2016
            night time NIPPY, cough assist, PEG (not currently used)


            Today is the tomorrow I feared yesterday

            Comment


              #7
              Every day in every way it's getting better and better! 😁

              Comment


                #8
                Originally posted by AndyB View Post
                ... it’s the NIV that causes the problem with me.
                Have you a humidifier for the NIV, Andy, if not, it's someting to try if you want xx

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

                Comment


                  #9
                  The one on mine was rubbish so I have an extra super humidifier, only problem is the sound of water all night. 😉

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    The one on mine was rubbish so I have an extra super humidifier, only problem is the sound of water all night. 😉
                    Which humidifier have you and what on earth is happening to make "the sound of water" 🤔 Doesn't your humidifier just gently heat the water?



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

                    Comment


                      #11
                      I don't know it's name but it has a very long tube and condensation causes rain 😁

                      Comment


                        #12
                        You didn't just leave the kettle on 😊

                        Comment


                          #13
                          Oh, that's probably condensation - is it a gurgling noise?

                          The moisture needs to be able to drain back into the water chamber - my humidifier is on the floor. To stop condensation from forming in the first place, try a fleece cover for the hose (search for CPAP hose cover) or, if that doesn't cure it, you can get heated hoses.

                          I have to tape the hose in place to allow for free draining - you'll have to see how you can improve things, no one could ignore that gurgling...

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

                          Comment


                            #14
                            Hi Ellie,
                            I don’t have a humidifier, I can tolerate the dry mouth at the moment but no doubt that may change in the future.

                            Andy x
                            Sporadic MND/ALS - Limb onset - Diagnosed May 2016
                            night time NIPPY, cough assist, PEG (not currently used)


                            Today is the tomorrow I feared yesterday

                            Comment


                              #15
                              When I start to use it I will be ready thanks to you guys. 😍

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