Announcement

Collapse
No announcement yet.

Thick Mucus/Botox related?

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

    Thick Mucus/Botox related?

    Hi Folks
    Can anyone help with a mucus query? Mum has bulbar palsy and has been having botox in the saliva glands every 3-4 months. It has been working quite well up until recently. She had an injection 2 weeks ago and her saliva flow is worse than ever plus her mucus is thicker than ever. She chokes a lot. She has been taking papaya and watermelon puree in addition to fortisip and calogen as we thought the papaya would help reduce the thickness of the mucus. Now we aren't sure if these are exacerbating the problem or if it might be related to the botox. Does anyone have any recommendations for meds or natural products which might assist with breaking down the mucus. She also is sick regularly as her suction machine often causes her to gag and be sick. Any advice would be much appreciated. Thank you in advance! xx

    #2
    Originally posted by Martha View Post
    Now we aren't sure if these are exacerbating the problem or if it might be related to the botox.
    Sorry to hear this Martha, secretion mananagement in MNDs is one of the hardest symptoms to get under control, it's a constant balancing act...

    The issue with thinning secretions, be it using meds or pineapple/papaya juice, is that all secretions are thinned, mucus and saliva.

    Is she well hydrated with water? Water is also a vital component of managing secretions.

    Carbocisteine is the 'go to' medicine for thinning secretions and regular use of a saline nebuliser can also help. (15mins, 2x day may give good benefit)

    Love Ellie.

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

    โ€‹

    Comment


      #3
      I am unable to use a cough assist so I take 20 mil Carbocisteine five times a day. Does she use the suction machine herself? ๐Ÿ˜๐Ÿค—๐Ÿ˜Š๐Ÿ˜xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

      Comment


        #4
        Thanks v much Ellie & Matthew. Really helpful. I think actually Mum might not be getting enough water throughout the day so will try extra fluids. She did try Mucodyne a while ago which gave her severe tummy ache but i think we will try this again seeing as it's the go-to medicine. She hasn't been offered a saline nebuliser yet so will check with the MND nurse to see if she can try that. Thanks so much for replying to us. xx

        Comment


          #5
          Originally posted by Martha View Post
          I think actually Mum might not be getting enough water throughout the day so will try extra fluids. She did try Mucodyne a while ago which gave her severe tummy ache but i think we will try this again seeing as it's the go-to medicine.
          Ideally 1800ml+ per day, preferably 'plus', and increasing water intake is the easiest thing to try - I know your mum has a PEG. I understand getting to the bathroom can be quite the palaver, but good hydration makes such a difference to us. (I'm hoisted in and out of chairs and I know how tempting it is to restrict liquids but honestly, it's well worth it ๐Ÿ‘๐Ÿ‘)

          I wonder if taking Lansoprazole would stop tummy ache with the Carbocisteine if she were to try it again? Lansoprazole lines the stomach but isn't suitable for everyone, but her GP will know. xx
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

          Comment


            #6
            Thanks Ellie. Yes Mum is already taking Lansoprazole every day, I think she just has a very sensitive tummy. We've established also during these last couple of days that her neck collar seems to exacerbate things. She is due for an appointment soon to try new collars which don't sit directly onto her throat. Thanks for the tip on water quantities...she's def. not getting enough fluids but we've increased over these last couple of days so hopefully she will see an improvement soon. Take care Ellie, thanks for your v helpful advice xx

            Comment


              #7
              I gave up on collars and just let my head decide what's comfortable. ๐Ÿ˜‰๐Ÿค—๐Ÿ˜Ž๐Ÿ˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

              Comment


                #8
                Originally posted by Martha View Post
                We've established also during these last couple of days that her neck collar seems to exacerbate things.
                I am the same - anything even merely touching my throat affects my not-so-great swallowing ability affecting how much saliva I can swallow.

                My neck muscles are very weak, so I need a rigid cervical collar. I have one with a chin rest, meaning the actual collar part does not touch my throat because my chin rest takes the weight of my head. I've no idea if your mum would get on with it but, there are various collar types out there, hopefully she can find a suitable one ๐Ÿคž๐Ÿคž xx
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

                Comment


                  #9
                  My neck muscles started to weaken a month or 2 ago which I initially thought was due to my pillow. I have tried physio massage which helped a bit and I do exercises to improve range of neck movement. Hospice physio has given me 2 collars. Heads First is a soft collar that wraps around the neck and keeps my head up when walking but it does press on the throat. The other is a Vulcan Medicollar which I use when sitting watching TV. Itโ€™s rigid and doesnโ€™t press on the throat and sounds like the one you use Ellie.

                  Hope Iโ€™m not confusing this thread but I have just obtained a mouthguard from my dentist to prevent grinding my teeth and biting my tongue and cheeks at night.I thought it would be less obtrusive than it is and hope itโ€™s just a case of getting used to it. What is the experience of other mouthguard users?
                  Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                  Comment


                    #10
                    I wear a bottom mouth guard 24/7 I feel odd without it now ๐Ÿ˜๐Ÿค—๐Ÿ˜Ž๐Ÿ˜‹xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                    Comment


                      #11
                      Originally posted by John D View Post
                      Vulcan Medicollar which I use when sitting watching TV. Itโ€™s rigid and doesnโ€™t press on the throat and sounds like the one you use Ellie.
                      Mine is made of rigid plastic John, with padding - it's a Thuasne Ortel C3.


                      Originally posted by John D View Post
                      What is the experience of other mouthguard users?
                      Mine is fairly small, slim and unobtrusive, so it's comfortable. Does yours go high up on the teeth or in what way do you think it's intrusive? xx
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

                      Comment


                        #12
                        Secretion Management and Head Position:

                        Incidentally, if my head is left drooping, my secretions can't drain properly and quite quickly I get snuffly and have excess saliva. When my head is in a 'normal' position, i.e. wearing my collar or when I'm in bed, the secretions drain as nature intended. ๐Ÿ‘๐Ÿ‘ xx
                        Last edited by Ellie; 3 November 2021, 16:28.
                        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        โ€‹

                        Comment


                          #13
                          Originally posted by Ellie View Post
                          Mine is fairly small, slim and unobtrusive, so it's comfortable. Does yours go high up on the teeth or in what way do you think it's intrusive? xx
                          Mine covers all my teeth in my upper jaw and I am conscious of it when I close my mouth and it makes contact with lower jaw. Hoping I get used to it over time.

                          Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                          Comment


                            #14

                            Originally posted by John D View Post
                            Mine covers all my teeth in my upper jaw and I am conscious of it when I close my mouth and it makes contact with lower jaw.
                            Blimey, does she/he think you're Hannibal Lecter?? ๐Ÿ˜‰๐Ÿ˜๐Ÿ˜˜

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

                            โ€‹

                            Comment

                            Working...
                            X