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    • #22372
      Patricia
      Participant

      I AM EXPERIENCING MUCUS IN MY MOUTH 24 HOURS A DAY. IT APPEARS TO BE COMING FROM MY NOSE.  IT’S THIN, BUT IT NEVER STOPS. IT ACTUALLY COATS MY NASAL PASSAGES MAKING IT DIFFICULT TO BREATHE AT TIMES. I’VE BEEN TO AN ENT DOCTOR. OF COURSE, HE DIDN’T SEE ANYTHING. MY TEETH ARE ALSO CONSTANTLY COVERED, FORMING A GEL ON A PERMANENT RETAINER I HAVE.

      I HAVE A FEEDING TUBE SO DRINKING WATER AND OTHER FLUIDS TO HELP SLOW IT IS NOT AN OPTION. I AM TOTALLY MISERABLE AND CANNOT FIND A SOLUTION! HAS ANYONE ELSE EVER HAD THIS PROBLEM AND IF SO, HOW DID YOU HANDLE IT?

    • #22415
      Jerry Fabrizio
      Participant

      Hi,

       

      I had that issue it was rough.  I started taking Nuedexta 20mg twice a day.  It stopped it and I can talk better without the saliva in my throat.  I hope it can help you.

      • #22515
        Patricia
        Participant

        Thank you!

      • #22525
        Jeff
        Participant

        i am responding for my husband who recently passed away due to ALS.  he also had a very hard time with the mucus and saliva.  Our doctor prescribed Xeomin which is like botox shots in the salivary glands in the upper cheeks.  that was the most wonderful thing.  this lasted about 4 months.  then you go back in and get it done again.  no pain.  be cautious that the meds being prescribed for drying out the saliva also makes you constipated.

        • #22527
          Amanda
          Keymaster

          I’m so sorry for your loss.  Thank you contributing and keeping up with the forums.

          Amanda

      • #22534
        Judy Weger
        Participant

        Everyone try peppermint oil a few drops will help you clear out micus

    • #22419
      Bill
      Participant

      Hi Patricia

      I too am plagued with the mucus.I just recently got a feeding tube and now am taking Liquid guaifenesin (Mucinex ingredient) through the tube. Helps me to thin and clear thick stuff. I also take ipratropium bromide through a nasal inhaler which ENT prescribed to slow nasal secretions. Very important not to get dehydrated as that thickens it all up. I sip water still plus add extra water through tube, I know I still don’t get nearly enough. Good luck.

      • #22516
        Patricia
        Participant

        Thank you Bill! I will look into seeing if I can possibly get a prescription for ipratropium bromide.

      • #22535
        Gideon
        Participant

        Totally agree with you  my wife taking it 3 time a day

    • #22481
      Debbie Zolnierowicz
      Participant

      Do you see a pulmonologist at ALS clinic?  In addition to the medications mentioned, a cough assist device and suction machine can help.

      • #22517
        Patricia
        Participant

        Thanks, Debbie. I have and use a cough assist device and suction machine.

    • #22512
      Gail A
      Participant

      There are prescription meds that can help. My husband has been taking Glycopyrrolate since 2019 and that has been very helpful. His doctor recently added Guaifenesin to thin mucus that collects in his throat sometimes. He has a VOCSN machine with cough assist and suction as well as ventilation. Hopefully you are seeing a neurologist at an ALS clinic who could be very helpful for you.

      • #22518
        Patricia
        Participant

        Thank you, Gail for your input.  I take Glycopyrrolate and  have both machines. I have an appointment with my ALS team on September 1.  I will most definitely ask for anything that might give me some relief.

    • #22528
      Jim Cowgill
      Participant

      I sympathize with you. I think we all go through that phase. I tried Botox shots but they didn’t work for me. Scopolamine patches have been the most effective treatment for me. I also take Glucopyrrolate. At my last clinic visit, sage tea was recommended to reduce secretions. You will have to do trial and error to see what works for you. Rest assured, it gets a lot better.

    • #22531
      David Lichtenstein
      Participant

      Good afternoon. I’m just starting to have the same issues. I too have been on a feeding tube for quite some time and I have excess saliva AND dry mouth, figure that one out. My hospice nurse just put me on HYOSCYAMINE for the saliva control. Although I just got it today, it’s seems to be working. Just dissolve under your tongue.
      I hope I have been of some assistance. Hang in there 🙏

    • #22533
      Sandra mcleod
      Participant

      Hi…in Canada I take cbd soft gels…it helps dry up mucus in my mouth I find…

    • #22529
      Dan Pence
      Participant

      Does you liquid diet include dairy?

      Is Milk and Mucus a Myth? | NutritionFacts.org

    • #22539
      Angela
      Participant

      I have had a g tube for over a year now . I realized that if I get 5 or 6 eight oz glasses of warm water bolused in addition to my meals, that I feel better, have less mucus and more regular bowel movements. Once in a while I really get a bad taste in my mouth or have excess drainage and I use a sinus rinse . I can’t swallow but this just runs out into the sink and provides relief. I also take NUEDEXTA for my PBA. Happy to hear others tips.

       

    • #22540
      Bill
      Participant

      Angela,  my ENT recommended same thing with the  sinus rinse. I haven’t tried as I was a bit fearful of that in sinuses. Guess I should try.

    • #22543
      Maggie Broeren
      Participant

      I emphasize. I use glypopyrollate, nasal antihistamine and daily suction w nose Frieda ( $16 at drugstore.)  Good luck.

    • #22541
      Jan: CA, pals
      Participant

      It is forum topics like this, in my opinion, are most helpful to PALS!!!

      I have the same/simular siliva-mucus-drooling problem 🙁 My Nurologist perscribed Atropine drops and I am unable to move my tounge, have to manually lift my tounge (with my fingers) and try to squeeze out a couple drops. The process worked for a while.

      Now, that doesn’t really do-it for me anymore…
      I don’t have the strength to squeeze that tiny plastc tube; 1 1/2″ x 1/4″. Sad 🙁

      Creativity to the rescue—> I have a tiny, tiny, tiny demi-tasse sugar spoon, so I put 3 sometimes 4 drops in the spoon, lift my tounge (with my fingers), insert spoon, tip spoon over…problem solved!

      Lately, I don’t have enough strength in my right hand/arm to even squeeze out a few drops, so the only way I now squeeze that small plastc bottle is to use a pair of regular pliers. I squeeze the drops into my tiny spoon, lift my tounge and I can taste that the drops are in about the right place.

      You might ask does Atropine work? Well, I really don’t use it that much… in a day, maybe once or twice… so Iam not sure… it helps a little. I doubt it is expensive, insurance pays for it 100%.

      When I look at my 25+ year old black and kind of rusty looking pliers, I sort of yearn for a pair of those painted white and pink and flowerered “girlie looking” pliers that I used to see at places like Michaels or craft stores. I always thought I would feel embarassed if anyone saw me doing a project with that type of tool. Now, I think it would be pretty cool to have a pair of those “pretty pliers” sitting on my kitchen counter top 🙂

      At my last three clinic appointments, my doctor suggested botox… next time I will say OK, I am ready… ‘hope it works for me. As Jim mentioned above: it’s all
      “trial and error”.
      A baby takes a step and falls, maybe cries a little, sometimes laughs, but gets up and tries again. And again. “Rest assured it gets a lot better.” Words of wisdom… T.Y. Jim.

    • #22547
      Mary Kate Smith
      Participant

      I also b had this issue. My doctor prescribed Glycopyrrolate and it helped. I also have ac suction machine that vIb used alot. For some reason I’m getting dryer and no longer need the Glycopyrrolate and only suck out twice a day now. I hope yours gets better.

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