Lambert-Eaton News Forums Forums Living With LEMS Speaking, Swallowing, and the “LEMS Voice”

  • Speaking, Swallowing, and the “LEMS Voice”

    Posted by price-wooldridge on April 7, 2022 at 9:24 am

    Just this morning I was reading about a LEMS patient asking if any of us have a difficult time talking like he does. There were many quick responses from other Lambert-Eaton patients, saying yes. Me too! Speech involvement for me often manifests as an odd feeling around my lips and difficulty forming words correctly. I also get what I call the “LEMS voice”, where words from my vocal cords sound weaker, more strident, and scratchy. Do you experience any of this?

    My very rudimentary understanding is that nerve-muscle communication is disrupted with the lips, tongue, and larynx, due to LEMS. This is also a possible cause of dysphagia (chewing and swallowing), which I also experience. How about you?

    Most of my difficulties with these issues are transient. They come and they go. I hadn’t considered it, but a quick internet search pulled up this article on Speech Therapy on the Lambert-Eaton News website. Personally, I’m not sure how much this could help me personally, because symptoms come and go for me. Give the article a read HERE, and if you think speech therapy could help you, comment below.

    price-wooldridge replied 1 year, 11 months ago 3 Members · 4 Replies
  • 4 Replies
  • marym

    Member
    April 21, 2022 at 9:36 pm

    I experience all you state. I couldnt swallow properly before diagnosis. My weight went down to 99lbs. Once i got on Firdapse the feeding tube came out and i can eat all day. I have gained 30lbs.
    My voice still comes and goes. The best time to talk is between doses. I use Biotene for dry mouth during the night. Dry mouth is aggrevating. I feel it is a miracle especially with weakness of my limbs. They tell me when my next dose is due. Thank you for all you do and education you share

    • price-wooldridge

      Member
      April 22, 2022 at 7:12 am

      @marym These are the kinds of stories and results both @ashleygregory757 and I look forward to hearing.
      We’re so glad Firdapse has made such an impact for you and that you’ve gained all that good weight! Way to go!
      I too have now used Biotene mouthwash for my dry mouth. It does help!
      Let’s just keep on keeping on!

  • bernie

    Member
    April 25, 2022 at 3:34 pm

    My journey with xerostomia (Dry Mouth).

     

    I first started noticing a sour taste in my mouth around a month before any other LEMS symptoms started making appearing. I was concerned enough that I asked my dentist about it during a routine cleaning, but they could not find any obvious causes. Soon after, I started getting the leaden feeling in my legs, upper arms and back. My saliva production continued to decrease to the point I could no longer eat various foods: chips, pretzels, breads, French fries, etc. Those things turned into a solid, dry lump in my mouth that I had significant trouble swallowing. About this same time, I noticed that my gag reflex was enhanced to the point that if I had certain foods that were too fibrous or I got too much in my mouth at one time, I would gag until I almost vomited.  Eating times increased, since I had to chew everything pretty thoroughly before swallowing.  I also noticed that my swallowing muscles would get tired and the longer I ate, the harder it because to swallow. These things combined to give me weight loss.  On New Years Day 2021, I weighed 195.6. By the middle of September, I was down to 167.1.

     

    Snacks during the day became an issue if I couldn’t eat essentially anything from a fast food place. My wife started concocting smoothies with fruit and protein powder.  She was concerned about my weight loss and pushed protein at me any chance she could. She changed our menu to have higher protein and minimize things that are harder for me to swallow. I discovered that I could eat wraps, if they had enough moist ingredients (tomato, relish, mayo).

     

    Note that I have seen several ENT specialists about my xerostomia.  None can provide a cause other than the autonomic effects of my autoimmune disease.

     

    In June of 2021 I was diagnosed with LEMS.  I immediately started on Mestinon(pyridostigmine).  At first, the improvements were subtle but when I had to go off the meds for a few days, they manifested clearly. I went back on and also was started on Ruzurgi.  I started to get a bit of voluntary saliva production within a couple of weeks.  It is nowhere near “normal” but helps.  If I am careful I can have a hamburger now and again, or a slice of pizza. I have since been transferred to Firdapse, which I am not sure does quite the same job that the Ruzurgi did.

     

    Since these things decrease saliva, I essentially gave up any alcohol or caffeine. It’s annoying, but I am trying hard to control what I can to minimize variables that are affecting my health. The LEMS meds have started to produce some voluntary saliva, which has allowed me to cautiously experiment with pizza, hamburgers and an occasional sandwich. I have gained a few pounds since the first of 2022.

     

    I have an issue when I try to hydrate using water-it makes me worse. If I slug down a pint of water, within 15 minutes my mouth is parched.  If I drink something with artificial sugar or electrolytes, I can do much better.  I typically have a liter of Crystal Light Mango Iced Tea with me wherever I go so I can moisten. It probably isn’t for everyone but works pretty well for me.

     

    I started trying various things to keep my mouth hydrated. I was prescribed Salagen(pilocarpine) that enhances the output of my saliva glands. If I take one ~30 minutes before a meal, I can do better with eating.  I also take one before bed.

     

    Bed time is tough. I am a side sleeper, and my mouth falls open.  This leads to more mouth breathing and I ended up with a mouth fungus (thrush) that happens when your mouth dries out too much. I decided to try a strap designed for CPAP users to hold my jaw up. It works pretty well and is not particularly uncomfortable. Commonly available on Amazon, they are pretty inexpensive.  I have two so I can always have a clean one.

     

    There are various over-the-counter remedies for dry mouth.  Act and Biotene both make full lines of various treatments.  I like the Biotene toothpaste and mouth spray. I do not like their mouth wash, it has a slimy feel.  I prefer the ACT mouth rinse just before bed. I have not had any luck with either brand’s mouth lozenges. I tried Xylimelts, a tablet that is supposed to moisten your cheek but I never got much from them n I tried some products from Smart Mouth, and they were not palatable to me. Oddly, I discovered that using Cepacol throat lozenges helps with the dry mouth, so I typically will have a couple in my pocket anytime I leave the house.

     

    Later in 2021, I started having more trouble at night. My sinuses would close up, but it was non-productive.  In other words, I could blow my nose until the cows came home and nothing came out. Since the air gets dry in the PNW in the winter, I started with a humidifier.  It only seems to help slightly.  Then I started treating it with nasal saline, as I knew it would have very few if any side effects. I also started taking Salagen at bedtime to enhance head moisture. This worked for a couple of months. Then I had to use it more and more so I spoke with my Primary Physician and she prescribed me a nasal dialator Azelastrine. That has done the trick so far, although sometimes I still get clogged up and have to take additional Salagen to get back to sleep.

    Regarding voice, when my drugs are tapering off I have trouble enunciating.  It also gets a sort of husky tone.  My wife can tell within seconds if I am needing more pills.

    Thank you for this forum to share our information.  I hope that some of my data points can help others in their journey.

    • price-wooldridge

      Member
      April 27, 2022 at 1:49 pm

      @bernie Thanks for this update! Sorry to hear of your weight loss and xerostomia.

      I’ve tried the Biotene mouthwash and like it. It does have a slightly different ‘feel’ to it, but that wasn’t a bother for me. I thought it was helpful, but I don’t have dry mouth overnight every night, just sometimes.

      It’s good to know you thought of that chin strap to keep your mouth closed instead of gaping open. I’ve got one too, but haven’t used it lately because I’m on CPAP and not mouth breathing much right now. They are effective and inexpensive.

      The clogged sinus issue can be very annoying! I’ve used saline spray bottles in the past to keep passages more moist. That has to help. What I do now though is antihistamine daily, RX nasal spray, and NeilMed Sinus Rinse bottle. I make my own pH powder to use in distilled water for the rinse. It’s very effective when clogged sinuses become an issue.

      Thanks for all the information you’ve provided everyone!

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