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Dry mouth in the night

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    Dry mouth in the night

    I am having problems waking up in the middle of the night as my mouth is extremely dry & uncomfortable. I don’t want to drink too much before going to bed as I will need to pee and have to call my wife to help me with this. My hands are too useless for me to get a drink for myself when it wakes me up. I have heard there might be some sort of gel which helps with this. Has anyone heard of this and give some advice.

    #2
    I use this spray. It is pump action. Maybe they do it in a tube.
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    Diagnosed May 2021 bulbar onset als.

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      #3
      Aidan in Shrewsbury Biotene oral gel is probably what you're looking for but there are other types, as Shelly says, Xylimelts being another.

      Do you use NIV overnight? xx
      ​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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        #4
        Thanks for the info Shelly &Ellie, I will try both and see how they go. No I don’t use NIV overnight.

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          #5
          Oralieve also do a gel as well as the spray. They do a starter pack for £25 containing those 2 products as well as mouth wash and foamless toothpaste. My GP prescribes Biotene for me.
          Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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            #6
            Aidan in Shrewsbury my gp prescribed the oralieve.

            John D i will look at the toothpaste as been meaning to buy some.
            Diagnosed May 2021 bulbar onset als.

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              #7
              I also have this problem. Never thought to mention to the doctor.I wake up a lot for sips of water. I looked up the starter pack, another expense though. On a subject of expense, my NIV needs distilled water . Haven’t even found any in a supermarket or pharmacy. Do I have to turn to Amazon yet again?

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                #8
                Originally posted by LesleyB View Post
                On a subject of expense, my NIV needs distilled water
                It doesn't really...

                Using cooled tap water which has been boiled once, is perfectly OK, if you have filtered tap water, even better.

                You need to descale the water chamber weekly with vinegar or citric acid and rinse it daily. I also give it a weekly dunk in Milton.

                I've used a humidifier for 10 years and never used distilled water, only cooled boiled tap water, and never had an issue. xx
                ​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
                  Thank you Ellie.

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                    #10
                    Ellie big cheers 🍻 👍

                    My respiratory nurse said the humidifier is tricky so don't use it!

                    Erm no! I will now use it now I know what to use 🥰
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Originally posted by shelly21 View Post
                      My respiratory nurse said the humidifier is tricky so don't use it!
                      Oh my days... it's child's play 🙄

                      Fill the water chamber to the black line, click it into its little house and the Nippy automatically knows to heat the plate under the water chamber then, wonder of wonders, it just works and humidifies the air before you breathe it in.

                      I have a Nippy 4 too. and, once the water is clicked in, a little symbol appears on the screen when the machine is switched on. Settings have a 1-5 range, mine is on 5, the highest, fwiw.

                      As for its care, all I do is as described above. xx
                      ​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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                        #12
                        Ellie i don't think they perhaps trust patients re cleaning it etc.

                        How often so you change the water? Does it tell you on screen that its empty?

                        I've just done 30 mins lol 😆 x
                        Diagnosed May 2021 bulbar onset als.

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                          #13
                          Originally posted by shelly21 View Post
                          How often so you change the water? Does it tell you on screen that its empty?
                          Oh use fresh water daily - you don't want to be using standing water, plus there might be some degree of condensation which went back into the water. No, I don't think the hot plate knows how much water is in the chamber but the full 350ml easily lasts me a full 8-9 hour night.

                          Originally posted by shelly21 View Post
                          I've just done 30 mins lol 😆 x
                          Get you... 👍👍😘
                          ​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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                            #14
                            Just jumping on here - I have started to get a dry mouth and coughing at night. Been getting worse a couple of weeks now. But I don't use NIV. Is it worth telling anyone (not sure who) or is it insignificant? Any thoughts?
                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                              #15
                              TinyLady Any idea if once you're asleep, your mouth opens because the jaw/facial muscles have weakened?

                              Or perhaps you take meds at night which may cause dry mouth as a side effect? xx
                              ​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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