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    Really dry mouth

    I’ve got a really dry mouth all of the time. I’ve been having mouthfuls of water lots, swilling it around my mouth then swallow it. That only had seconds of benefit. The biggest benefit is when I did my teeth this morning. But an hour and a half later that’s wearing off. My Speech and Language Therapist is asking my GP to give me synthetic saliva spray. I hope that this comes soon.

    I was late for my shower today because of the catheter being changed by district nurses and one of them couldn’t half talk. They said that the new one might not sort out the problem of leakage but she’ll ring next Tuesday to see how it’s going.

    Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Lynne K can't make suggestions about the dry mouth issue - is it connected to any of your medicines? I'm sure others here will know more..

    Sorry to hear there are still issues regarding your catheter...must be so very frustrating.

    Take care especially as you're dealing with a lot 🤗😘

    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

    Comment


      #3
      I’ve ordered pastilles from Amazon which will come tomorrow and synthetic saliva which will arrive on 1st February xx
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        That's what I admire about you Lynne K for every problem you fight for a solution👍🏻✊🏻💋
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

        Comment


          #5
          Originally posted by LindaB View Post
          That's what I admire about you Lynne K for every problem you fight for a solution👍🏻✊🏻💋
          Thanks Linda. I don’t think that it’s related to any medication but since doing my teeth about 11.30 it’s eased a bit. So if the toothpaste is anything to do with this improvement I ordered peppermint synthetic saliva spray. We can but try. Xx
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

          Comment


            #6
            Xyilmelts nuff said
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              #7
              Xerostom with Saliactive for dry mouth I ordered. But if no good I’ll look fo Xyilmelts. Thanks Mathew xx
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Hi Lynne K
                I have had a dry mouth since diagnosis 18 months ago.

                medication reductions or changes made no improvement,

                Also with this comes episodes of phlegm after waking up.I brush teeth and now notice gums bleed.
                I drink water via straw.Aso tonic water and ginger ale.Some water va RIG.Tea via straw.

                When I tried the NIV.dry mouth was worse so I don’t use it now.( fitted with humidifier)

                I have used sprays, artificial saliva gel.I have tried pure pineapple juice and papaya.All gave little affect.Also sugar free chewing gum.pastilles

                Then use lip balms

                I didn’t try matthews suggestion as didnt fancy a pastille stuck inside mouth but they work for him

                I also use nebuliser with saline twice daily

                Every tablet comes with side effects…at present I take oralmorph ,amtryptine and lorazepam and laxido.

                Grateful i do sleep but do need a few sips of water overnight.

                Hope you find something that works for you.

                love Mary xx






                Comment


                  #9
                  I’m worried about pastilles having sugar in and ruining my teeth so they’re just for emergencies and before teeth brushed xx
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    Xyilmelts nuff said
                    I just ordered those from Amazon because sugar free. They’re being delivered tomorrow. I’ll try to cancel the others xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Originally posted by Lynne K View Post
                      I’m worried about pastilles having sugar in and ruining my teeth
                      Those type of products are normally sugar free Lynne, just check your order and I'm sure you'll find you'll have one less thing to worry about 🤞🤞😘
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Lynne K Have a look at oralieve products - https://oralieve-direct.myshopify.co...sing-mouth-gel. I have only used a non-foaming toothpaste sample so far on dentist’s recommendation. Fairly expensive but thinking about some of the other products. Am using Biotene on prescription and have used Xyilmelts from Amazon. Both fairly effective.
                        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                        Comment


                          #13
                          Thanks John, ordered some xx
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            Xyilmelts nuff said
                            I got a pack of 40 Xyilmelts from Amazon. Where do you get yours? I think I’ll need more than 40 every week so expensive, Lynne xx
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Amazon too.. Anything between 11 and 20 pounds. Not cheap but worth it.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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