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    Botox

    Has anyone any experience of using Botox to help with biting cheeks and lips? I presume it wouldn't be available on the NHS but if it would help then I would be prepared to pay.

    #2
    I presume you are fed up with jaw clenching Hakuna ?? Is it throughout the day?

    I can't recall any member having had such Botox injections but of course that's not saying nobody did, in which case I hope you get a reply.

    I'd be concerned if your chewing wasn't near perfect or if your mouth doesn't quite fully close, in case the Botox exacerbated any weakness. 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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      #3
      Originally posted by Hakuna View Post
      Has anyone any experience of using Botox to help with biting cheeks and lips? I presume it wouldn't be available on the NHS but if it would help then I would be prepared to pay.
      I haven’t but considered Botox for saliva management after having radiotherapy on saliva glands which has been successful to a degree. After talking with medics decided not to go ahead. It would’ve been on NHS.

      Have you considered a mouthguard? I paid dentist £300 for it which is the going rate around here. Don’t know if that’s the same everywhere.

      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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        #4
        I now have ridges in my cheeks on both sides in my mouth from biting them inadvertently. Once bitten, bitten again within minutes. I had Botox injected into my salivary glands last week to reduce saliva drooling. No noticeable improvement yet, but I was told it can take two weeks to work. No suggestion of Botox for cheeks.
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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          #5
          Try radiotherapy
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Originally posted by PeterPan View Post
            I had Botox injected into my salivary glands last week to reduce saliva drooling. No noticeable improvement yet, but I was told it can take two weeks to work. No suggestion of Botox for cheeks.
            🤞🤞 the Botox will soon kick in for you Peter.

            The OP's query re Botox is in relation to muscle relaxation, not to reduce saliva. 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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              #7
              Originally posted by Ellie View Post
              The OP's query re Botox is in relation to muscle relaxation, not to reduce saliva. xx

              Apologies for the deviation into Botox for saliva
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                #8
                Originally posted by PeterPan View Post
                Apologies for the deviation into Botox for saliva
                Oh PeterPan I wasn't telling you off! Just explaining why you weren't offered Botox in your jaw and you had a case of FOMO 😉😁😘
                ​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
                  Ellie No problem! (Just bitten my right cheek AGAIN )
                  Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                    #10
                    Get a gum shield my friend. 👀👌😜😁xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      Thanks for the suggestions. It happens mostly when I'm eating or trying to. So don't think a gum shield would help. I asked my dentist for his suggestions but he had nothing to suggest. I think I'll ask the neurologist. I'm investigating having a PEG fitted but things seem to happen slowly in my neck of the woods.

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                        #12
                        In the meantime Hakuna make sure you always have Bonjela in the house 😏

                        Good luck 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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                          #13
                          I do this too. Up until now I just tolerate it. When I am eating it is like a jolt every now and then that causes you to bite down quickly. Ends up biting my tongue or cheek and OWWW it hurts. Days to heal...then SNAP...there's another one.

                          I think it is UMN that causes it much like hyperreflexia. Seems like a good explanation and my neuro seemed to agree, but all he did was give me baclofen for spasticity. I want to monitor this to see if anyone has found an effective treatment for this.

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