Announcement

Collapse
No announcement yet.

Saliva problems

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31

    Comment


      #32
      Woohoo John - I have a playmate! You and I can go swinging through the trees 😄😄
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #33
        Hyocine tablets & patches were awful! However, Botox into the salivary glands reduces the hypersalivation greatly (my GP wont prescribe it though so had to pay privately). Botox is used in many countries for non-cosmetic treatments such as haemorrhoids, arthritis etc BUT not in UK - so far behind the times!

        Comment


          #34
          Your MND Clinic should provide Botox into the salivary glands, so ask them for your next injection (as you know, it only lasts 2-3 months)

          Hyoscine doesn't suit a lot of people because of its nasty side effects, but there are other meds available which you may need to take on Botox breaks.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #35
            Originally posted by Ellie View Post
            Woohoo John - I have a playmate! You and I can go swinging through the trees 😄😄
            Yes my orangutan is called Arnold from Chester zoo

            Comment


              #36
              Does the treatment stop saliva or do you produce a bit to keep mouth moist ?

              Comment


                #37
                Sink or swim literally 😉

                Comment


                  #38
                  Hi John (Arnold), I still produce a small bit of saliva but it can take a while to get the dose and frequency of meds spot on.

                  If your mouth is very dry, try using Biotene Dry Mouth gel (widely available) There are dry mouth lozenges too but, if you've any tongue or swallow weakness, avoid them. Dry mouths aren't great for oral hygiene either...

                  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


                    #39
                    No still producing some saliva and spend day bringing it up off my chest. I'm on 1.5ml three times a day. Hospice doc won't increase it ! She fears that mucus in my chest would get too thick to bring it up. My gp prescribed 2.5ml three times a day but gp has not seen me? John

                    Comment


                      #40
                      I have good and bad days. I'm happy on the swings but I don't mind a turn on the roundabout. 😊

                      Comment


                        #41
                        Bronchial secretions are different to saliva and yes, it is a balancing act to lessen saliva production, whilst knowing that the drug has an effect on all respiratory tract secretions 😌

                        That said, it's surely up to you to try achieve that balance, after all you know how it affects your secretions/daily life best, not a Dr. By all means, Doctors are there to advise and impart knowledge but you're the one living with, and trying to control, what are often distressing symptoms. If you find you're worse off on a higher dose, you can revert to a lower dose, knowing that you tried.

                        I take it 2x a day. I find I don't need it at night, lying down and on NIV. Does saliva bother you in bed?

                        Or maybe the saliva is worse at specific times of the day and you can use different doses throughout the day?

                        It saddens me when Doctors aren't creative 😣

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

                        Comment


                          #42
                          I'm on a ventilator at night so any saliva I produce ends up on my lungs. I bring it up using the huff puff method You breathe in and in and in then cough on exhale thats opened the airway and it flows out. My chest is clear but med is attacking the saliva glued to my voice box thats what is happening today so hopefully should be sorted in a couple of days. Yes saliva does vary during day. Thinking of buying an aspirator. Spitting is tiresome. Ill see the hospice doc on Mon when I go to physio.

                          regards
                          john

                          Comment


                            #43
                            Just had my video consult with my neurologist and he is putting me forward for a treatment that involves blasting x-rays at my saliva glands. The drawback being it's permanent. Something to ponder. 😊

                            Comment


                              #44
                              Matthew, would you not try Botox first?
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #45
                                He told me that because of Covoid Botox is not happening so they are going back to something they did before.

                                Comment

                                Working...
                                X