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    Dry mouth meds

    Does anyone out there have experience of using Pilocarpine for dry mouth at night ? I’ve just had it prescribed and would be interested to hear the experiences of others .

    #2
    Hi Lizzie, Have you started your Pilocarpine yet? I have no experience of using it so I can't help there, but as someone who has suffered from dry mouth at night for about eight years now - long before I was diagnosed with MND - I am desperate to find a solution. It wakes me four to eight times each night so I never get any quality sleep and I can't get any healthcare professionals interested in my problem. They just suggest chewing gum or various gels or sprays which don't help at all. My worry about taking a drug to promote saliva is that it will add to the excess saliva during the daytime. Is that your worry too?

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      #3
      Sorry Lizzie, I can't help you with Pilocarpine - hope it works out well for you though 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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        #4
        Keep a sponge on a stick in a glass of water by your bed. Watch out for drips! 😁x

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          #5
          Thanks all for your replies. I’ll let you know how it goes.
          I have those little sponges Matthew and I dip them in pineapple juice. They do help, but my mouth is so sore overnight I’m prepared to try something new. Sally Ann Ifeel the same as you about the daytime dribbling, but nothing ventured nothing gained. I’ve been advised to use the Pilocarpine in the evening, before bed. I’ll report back 🥴

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            #6
            Don't worry Lizzie pretty soon you won't feel anything apart from teeth. Relief comes in strange ways. 😁😍x

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              #7
              I'm not sure that is helpful Matthew x not everyone runs the same path and I for one have full feeling and a pretty normal mouth after 10 years albeit dry at night


              I hope that it helps Lizzie but if not there are lots of other things to try xx Sarah xx

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                #8
                I thought everyone knew my views on we all take different paths? I was merely trying to put a smile on someone's face. ☹️x

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                  #9
                  Lizzie, my dentist was horrified at the suggestion of pineapple juice when I asked her for advice. I just keep water by the bed and take sips throughout the night. One thing I can suggest for sore mouth is the mild, alcohol-free mouthrinse from Oralieve. It doesn't help with the dry mouth as such, but it leaves your mouth with a soothing coating that lasts for a while. You can order it online and they deliver pretty promptly.

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                    #10
                    Thanks for your replies / advice Sarah and Sally Ann. xx

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