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    • #20915
      Dagmar Munn
      Keymaster

      According to the website Your ALS Guide:

      “People living with ALS often struggle with sleep. Challenges can include feeling anxious, getting comfortable, difficulty breathing, and needing to go to the bathroom throughout the night. Making adjustments to your normal sleep habits can help you get a good night’s sleep, which can improve your mood, energy level, and overall outlook on life.” (Sleep and ALS)

      Has having ALS caused any changes in your sleep patterns? Were the changes gradual or all at once? What are you doing to help improve your sleep? What challenges do you continue to experience?

    • #20940
      Tom Hehir
      Participant

      Hi Dagmar

      When I was first diagnosed I had a terrible time sleeping, I used three pillows and still would wake up every hour. I was seriously sleep deprived. My FVC hit 50 so my NP ordered me a bipap. This really worked for me. I now wake up twice or three times during my 10 hour sleep to go to the bathroom. I am a male over 70. My breathing has also improved a lot. My last FVC was 100%. I am in the Healy Platform, Pidopidine, so that me be impacting as well. Who knows? I think bipaps should become the standard of care for anyone suffering sleep problems.

      Tom

    • #20974
      Bill
      Participant

      I’ve had sleep issues for years. After I got my ALS diagnosis my sleep just continued to get worse. I tried staying up later which helped for a while. Eventually I got prescribed a sleeping pill which I take maybe once or twice a week, I do take generic Benadryl one tab nightly which helps dry me up a little and helps sleep. If I really am concerned with needing to catch up on sleep I will take two Benadryl or the sleeping pill. I try to mix it up.

    • #20976
      Mark S
      Participant

      When I started having cramps, fasciculations and weakness, that is not what I was complaining about to doctors.  It was the exhaustion, I would fatigue within minutes of any effort, I couldn’t think, over the last months I was sleeping 2–3 hours during the day and all night.  I was not awake for the last 2 years.

      I finally got a new PCP that listens  and I talked her into starting me on Provigil.  It was life altering in 3 hours. I am finally alive again and sleep cycle is normalized.  My mind is as sharp as ever.

      My muscle cramping is worse, but I am doing more.  I, and no one knows what happened to my brain or why it worked so well, but I will take it. I don’t think this applies to everyone, but I know many are fatigued and not sleeping well.  Sometimes it is not needing sleep aids but more wakefulness so that you can get better sleep.

      There are some small studies on this and maybe worth talking to doctors about if you are sleeping all day.

    • #20999
      Richard Maloon
      Participant

      Since I am older than some ( 81) and two years ( in hindsight)living with ALS with an unambiguous diagnosis in January 2021, I have seen no effects on sleep.  I am on the drug riluzole and vitamins l-syrene and melatonin.  The L-styrene trials are ongoing but nothing encouraging after years of study.

      Symptoms began in the left arm, with some indications moving to the right. so far eating, walking briskly, and breathing okay that I attribute the breathing being okay to the recommended lung exercises. i have lots of gadgets!!!

       

      11/11/2011

       

      recommend an ALS clinic: In NH lebanon.

       

      r

       

    • #21007
      Trevor Bower
      Participant

      Since being diagnosed I have started to keep track of changes. As I progressed my sleep seems to be in two hour bursts. Leg cramps and need to empty my bladder. Needless to say, I am exhausted all the time. I can’t “catch up on sleep” no matter what I’ve tried. One item that seems to help the bladder issue is eating a bowl of popcorn before bed. No coffee after breakfast is another new rule.

    • #21034
      Stephen O’Neill
      Participant

      Hi Everyone, Stephen here from Melbourne Australia.

      Firstly, thank you all for your posts and contributions, it has led me to try many different supplements and hopefully they are doing some good, might be a bit to early to say for me for now. I was diagnosed Jan this year but started getting symptoms mid last year.

      I had been having a lot of difficulty sleeping recently due to the drooling and mouth breathing and then dry through and mouth as a result. Tried Xilymelts, Mouthwash to lubricate the mouth, Gels, toothpastes and every possible combination, to no avail, and was going nuts for lack of sleep.

      Finally, by accident, i discovered that some gentle pressure under my chin kept my mouth shut and allowed me to sleep, but how to do this all night whilst asleep?

      Then i found a Chin Strap on the net which was designed for snoring, and let me tell you, its been a life changer for me, i can’t recommend it enough. I also take a Temaz sleeping pill to help get to sleep and it doesn’t leave me drowsy in the morning. Last ingredient is a lot of Lip Balm on the lips, the stickier the better, as it helps keep my lips shut, stops the drooling and mouth breathing, assisted by the chin strap, and Voila, a great nights sleep, which we all know is very important for everyone, not just us ALS people.

      So, for me at least, 1 X Temaz, Neoprine Chin Strap, and lots of Lip Balm = great nigths sleep. Hope this helps someone out there as it was driving me cuckoo. xo

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