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    Botox for saliva

    I’m due to have Botox injections for excess saliva next week. I’ve heard that the injections are very painful. Has anyone had any experience of this, and is any form of anaesthetic used during the procedure? Thanks,
    Lizzie x

    #2
    Why isn't anyone getting radiotherapy? I just use less tissues. 🤗🤔😁😍xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      I must say Matthew that I’m getting through loads of tissues.
      I haven’t been offered radiotherapy. It hasn’t been mentioned. I’ve had the usual meds...Atropine, Hyoscine patches, Amitriptyline, but none have worked, so Botox is what I’ve been offered.🤔

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        #4
        Originally posted by Lizzie View Post
        I’ve heard that the injections are very painful.
        I guess different people have different pain thresholds but my friend, who had regular Botox into her salivary glands, never mentioned they were painful. It worked very well.

        I had Botox in my legs and the needle itself was tiny, so I felt nothing.

        If you're anxious, I'm sure they'd happily apply a topical numbing cream on your skin. They wouldn't give treatments if particularly painful without anaesthetic, would they, in case you'd hop around the place as they tried to inject you 🤔

        Radiation treatment is more involved and more expensive.

        Good luck Lizzie 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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          #5
          Radiotherapy didn't cost me anything. It's a simple procedure. You get fitted with a mask then you go and get the x-rays.
          ​​​​​
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Originally posted by Lizzie View Post
            I’m due to have Botox injections for excess saliva next week. I’ve heard that the injections are very painful. Has anyone had any experience of this, and is any form of anaesthetic used during the procedure? Thanks,
            Lizzie x
            Hi Lizzie, I had Botox injections three weeks ago. The good news is it’s not unduly painful at all. Yes, you can feel the four injections, but really not a problem. No injections in the mouth, all done from the outside. The bad news (for me) is that it hasn’t worked! I’m going into hospital for a respiratory assessment next week and hopefully they can fix that. I’d say, don’t worry about it and I hope it works for you first time!
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #7
              Originally posted by matthew55 View Post
              Radiotherapy didn't cost me anything. ​​​​​
              It might not have cost you anything but it cost the public purse more than Botox.

              ​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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                #8
                Originally posted by PeterPan View Post
                The bad news (for me) is that it hasn’t worked!
                Oh Peter, that's so disappointing for you 😟

                They gave you the full dose, did they, and not a conservative 'first-time' dose? 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
                  Thanks for the reassurance Ellie 😊 x

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                    #10
                    Sorry that last comment went on the wrong thread 🥴

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                      #11
                      Thanks for your comments Peter. I appreciate it . Lizzie x

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                        #12
                        Originally posted by Ellie View Post
                        Oh Peter, that's so disappointing for you 😟

                        They gave you the full dose, did they, and not a conservative 'first-time' dose? xx
                        I had 100 units in total. “30 units of Xeomin botulinum toxin was injected into each parotid gland and 20 units of Xeomin botulinum toxin was injected into each submandibular gland.” No idea if that’s a full dose!
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                          #13
                          I had radiotherapy which worked for a while but as muscles In my in lips have weakened saliva is escaping again. Considered botox but decided not to follow through after discussing with medics. Patches seem to work for me 2nd time around with Atropine occasionally.

                          Wish I had shares in a tissue making company. In fact I worked for one years ago if you remember IZAL.
                          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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                            #14
                            Originally posted by PeterPan View Post
                            I had 100 units in total. “30 units of Xeomin botulinum toxin was injected into each parotid gland and 20 units of Xeomin botulinum toxin was injected into each submandibular gland.” No idea if that’s a full dose!
                            Yep, that's the full dose, unfotunately...

                            • parotid glands: 30 units per side, 0.6 ml per injection • submandibular glands: 20 units per side, 0.4 ml per injection.

                            Really hope somebody comes up with a solution for you Peter. 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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                              #15
                              John D
                              Forum Member
                              John D I think my dad insisted on Izal toilet paper, good strong stuff! x
                              Diagnosed July 2020, ALS bulbar onset.

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