• Dry mouth

    Posted by luna on May 23, 2024 at 5:02 pm

    My husband was diagnosed with Bulbar ALS seven months ago. He struggles with dry mouth and tongue at night when trying to sleep (but has excess saliva in the daytime). He has tried various sprays and gels at night but has very little relief. Do other folks with ALS have this dry mouth/tongue issue at night? Thanks.

    gigi44 replied 3 weeks, 5 days ago 12 Members · 17 Replies
  • 17 Replies
  • Johnny5

    Member
    May 26, 2024 at 9:00 pm

    I get a dry mouth on and off; then a leaky mouth at other times. I wish there were a solution.

    • luna

      Member
      May 28, 2024 at 5:32 pm

      Thanks!

  • Dagmar

    Member
    May 27, 2024 at 4:03 pm

    I’ve learned to identify what triggers my dry mouth – – talking, and making sure I have a drink nearby. My sometimes excessive saliva is triggered by food (even thinking about food!) and laughing. So, I keep a hanky nearby…. and have taught myself to swallow more.

    • luna

      Member
      May 28, 2024 at 5:33 pm

      Thank you!

      • theg

        Member
        June 18, 2024 at 7:49 pm

        On November 1 if ‘23, at my 3rd visit to Scottsdale Mayo Clinic, I had a Botox injection. A full dose rated at 5000. It takes about a week for it to kick in, and as luck would have it, it happened during the afternoon of November 6, a full day and half before I had the feed tube surgery at 8:00 am on November 8.
        On November 7, I could not eat or drink anything. My mouth was locked up with drymouth. I lost 10 lbs and was so dehydrated when I entered the surgery room for the tube surgery. They right away put me on IV for hydration.
        Ok, fast forward to the recovery room. One of the pluses was the afternoon nurse (or aid) that showed me a few trick for dry mouth. She brought me a glass of crushed ice, and I had to use very small pieces because I couldn’t swallow water. She also brought me several Sage Toothette oral swabs to dip in water and put in mouth.
        The next morning the floor Doctor recommended my wife go down to the gift shop and purchase an item called Xylimelts for dry mouth. It’s a round disk that you place between your cheek and gum, and it sticks to cheek and slowly dissolves. Place it with the indent towards cheek. I’ve purchased it at Walgreens

  • len-jax

    Member
    May 27, 2024 at 4:42 pm

    Hi Luna,

    I also struggle with dry mouth when I sleep. Does your husband use a CPAP or BiPAP machine for sleep apnea or to assist with breathing at night? I have had sleep apnea and have used a CPAP for years. I used a chin strap for years to keep my mouth closed, and it worked well. As I lost my ability to speak due to ALS progression, my mouth, lip, and cheek muscles became weaker, and my lips parted as I slept. I would wake up in the morning with my mouth completely dry and teeth glued to my cheeks. It was painful to peel them away. I would also grind my teeth while sleeping and wake up with a fine grit film when I brought my teeth together.

    I had also tried the sprays and gels, but they didn’t work either. I even tried the tape strips across my lips, but that didn’t work. (I considered using DUCT tape but decided it would be painful with a beard)

    What has worked is that my dentist made a pair of Invisalign covers for my teeth to prevent grinding. I tuck an ACT dry mouth lozenge between my cheek and teeth. The dentist said not to put them in the same place every night. Finally, I got a new chin strap with more tension.

    The ACT lozenge slowly dissolves overnight, creating a sticky film on your cheeks, teeth, and lips. My lips are coated with a sticky coating that I think helps keep them closed. You don’t need the Invisalign covers for it to work; they are only needed if you grind your teeth.

    Hopefully, this will help you—waking up daily with a dry mouth is painful! I also have found an effective remedy for cheek-biting, but I will write about that later.

    • luna

      Member
      May 28, 2024 at 5:33 pm

      Thanks for you help!

  • Timmy

    Member
    May 28, 2024 at 2:38 pm

    Good afternoon. I sometimes get a dry mouth while sleeping. I too sleep use a Bi-Pap. Typical humidity level for me is 3. I just turn up the water level to 4, only rarely to 5.

    During the day I often drool especially when bent over at the waist.

    Tim

  • Heatherb

    Member
    May 28, 2024 at 2:51 pm

    My husband uses a cpap at night and was complaining of horrible dry mouth in the morning. We had previously tried a chin strap, but it would never stay on. He came across a nose breathe trainer on Amazon that works great. Problem solved. Link below:

    https://a.co/d/2R4uY7H

    • Martha Whitaker

      Member
      June 11, 2024 at 8:53 am

      Thank you, thank you!! I have been looking and trying things for over 6 months for dry mouth and lip biting. I ordered the nose breathing trainer and immediately problem solved. It keeps my tongue out of my teeth. It works with a trilogy mask.

  • Leonard M Bozza

    Member
    May 28, 2024 at 3:34 pm

    My wife used a non invasive respirator with a humidifier at night. This did help the dry mouth but you need to keep the setting on low or it contributes to saliva production problem. We would do oral care at night before going to sleep so she started with a clean and moist mouth.

    I might also note that her saliva problems were reduced with the use of Botox injections.

    As my wife’s condition continued to progress we learned that we had to anticipate the changes and try to stay one step ahead of her needs. Hoyer lift, power wheel chair, Tobbi eye gaze device , shower chairs etc.

    If you have long term healthcare insurance active it asap.

    I hope this helps and wish your husband the best..

  • Martha Whitaker

    Member
    May 28, 2024 at 7:03 pm

    I also have similar issues. In addition I have very weak muscle tone in my lips. If my jaw relaxes even slightly my bottom lip covers over my teeth and I end up biting my lower lip. The trilogy mask makes it worse. It was suggested by my dentist to use a night guard, but that didn’t work. It came loose and was pushed towards my throat by air pressure. I need something that will hold my bottom lip out. Does anyone have something that could work?

    • Leonard M Bozza

      Member
      May 29, 2024 at 10:35 am

      My wife used dental rolls between her teeth and lip to prevent her from biting her lip or side of her mouth.

  • Teresa

    Member
    May 29, 2024 at 6:19 am

    Yes my mouth and tongue get so dry! Mine started before I even got the bipap. It’s actually made my tongue sore. My taste buds are not working well either. Food doesn’t taste right. My lips are numb feeling. I’m having a terrible time swallowing now. Thankfully I can still drink using a straw.

    Thanks for everyone’s replies, I learn a lot from them!

    • Leonard M Bozza

      Member
      May 29, 2024 at 10:39 am

      it may be time to prepare for a feeding tube. It will provide a method to get nutrition and medications into your body without the possibility of aspirating foods and meds into your lungs which is a serious danger.

  • Janet Neckyfarow

    Member
    May 30, 2024 at 3:18 pm

    Right around when was diagnosed I started having dry mouth at night. Tried a few things but discovered xylemelts and have been using them for over a year. They say to use two, but I keep only one on my bedside table. When I wake up because my mouth is dry, I put it between my cheek and gums and go back to sleep. Problem solved. It always works.

    I have bulbar onset. I had dry mouth months before I had excess saliva during the day. Had two of four radiation treatments to dry up the saliva which was like a slow running faucet all day long, but it worked too well on me, leaving me with a sticky saliva which makes it hard to swallow. I am constantly suctioning, especially when I try to eat or drink anything the old-fashioned way. Good thing I have a feeding tube!

    As for teeth grinding and cheek biting.. definite problems, I started with a do-it-yourself mouth guard, used dental rolls when that started bothering me, and now find that a folded paper towel gently placed between my teeth, keeping me from gnashing them without actually putting anything in my mouth, works great. My mouth opens slightly when I fall asleep and it just rests there.

    As for a sore mouth from occasionally biting a cheek or lip.. Oral B Mouth Sore.. (or Sore Mouth?) works great. I can’t rinse any more so I just apply it with a Qtip.

  • gigi44

    Member
    June 20, 2024 at 4:09 pm

    Hi Luna, My husband, too, was diagnosed with bulbar onset ALS in April of this year. I am new to this forum and haven’t read through everything, but Heatherb (I believe) posted this link https://a.co/d/2R4uY7H for the Nose Breathe device and we just received ours last week and it works wonders starting with the very first night my husband tried it and he as been wearing it every night since. His dry mouth is alleviated and he is able to gain uninterrupted sleep which also helps with his energy level. I cannot thank Heatherb enough for recommending this device and I hope it will help your husband, too! I even shared it with my husband’s speech therapist who was unaware of it and she took a copy of the information we received with the device and what we downloaded from the Dr.’s website. Hopefully she will share with others who may benefit from this device as well. Let us know if it helps your husband! I will keep you and your husband in my prayers. ~Gigi

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