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Excessive saliva causing choking (Botox?)

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    Excessive saliva causing choking (Botox?)

    Hi, My MND (Bulbar) seems to be progressing, mostly lose of speech and swallowing, I've managed quite well up until now for two years but the saliva is becoming a real issue, I tried all the medications available which either didn't work or had bad side affects so I'm now asking my MND specialists if Botox might be an option? They're not sure at the moment and are looking into it. Question really is has anyone on the forum had experience of Botox injections to prevent saliva? I'd appreciate your views or experiences. I now take almost everything via the RIG, I used to have the odd cup of tea thickened but even had a few days without them! I seem now to be experiencing the same problem every day at around 2.00 pm, throat starts to get croaky like phlegm is stuck in the vocal cord area, I try to stay calm but always end up having to attempt to cough it up then my airways get blocked and I can hardly draw breath, panic sets in and a few times I think I almost pass out! but fortunately always slowly recover. Personally I think it must be the saliva build up which sometimes is almost like elastic and very sticky. Once the situation passes I'm normally ok for the rest of the day and over night. I do currently take three doses of Carbocisteine a day which is supposed to thin the phlegm.

    #2
    There's another thread on saliva David which I started

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      #3
      David, a nebuliser and cough assist might really help bring up those sticky throat secretions.

      If you've had no joy with meds, Botox injections into the salivary glands is often the next step. It lasts about 2-3 months and then there is usually a period between the Botox losing its effectiveness and the next injections.

      I never had it for saliva (glyco works well for me) but I've known a few who had regular Botox, including a lady I met weekly, and all got on well with it. My friend did need tablets during her waiting period but once the Botox kicked in, she was back to no meds.

      There are members here who get Botox for saliva but I don't know how often they look in.

      Love Ellie.
      ​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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        #4
        Hi jd58,

        Yes I had already followed your Saliva thread, I suppose I'm really hoping to hear from someone who's had Botox

        Thanks David

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          #5
          Hi Ellie,

          Thank you for your reply, when you mention the nebuliser there are different types I think, which are you suggesting? I still have quite a good lung function and can project a cough quite well also the hospice gave me a nippy bag quite a while ago but that doesn't seem to help at all.
          I've got an appointment next week with the MND consultant and just trying to get as much info as I can before the meeting.
          I just think the Botox is the next possible option?

          Regards

          David

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            #6
            It's the compressor nebuliser I have David, used with saline.

            In my clinic at least, if a person has tried meds to reduce saliva with no real success, then Botox is offered. It's an established treatment for saliva reduction in ALS/MND and not experimental, but it must be administered by a professional who knows what they are doing (and not by Lucy's mate at her Botox party in her front room 😆)
            ​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
              Try looking at saliva 😁x

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                #8
                Thank you Ellie,

                Now I think about the Nebuliser I remember the physio suggested I tried one last year but she said they couldn't supply it and I'd have to buy one myself so at the time I didn't bother because of the cost and unknown affects but perhaps its time to get one now? I take it's just a help with the difficult moments?

                No, I won't go to one of Lucy's party's, only because of covid

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                  #9
                  Thank you Matthew, I do look at the saliva quite often on my cloths and the floor and I have followed the saliva on the forum.

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                    #10
                    Hogwash about you having to buy your own nebuliser! Have you a community nurse to ask? I don't think an OT would supply one, maybe your clinic (unless that's where that physio was?)

                    It can be use proactively or reactively, the former to lessen the needs for the latter...

                    Good luck.
                    ​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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                      #11
                      Hi Ellie, yes I agree about the nebuliser, now we’ve been to bed for a sleep and refreshed our memories we think because it was about March/April last year when lockdown was in place we think she did say they couldn’t access them because of a major shortage and the only chance we had was to try and buy one on line, but again from memory the prices had gone up dramatically.

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