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    • #15640
      Dagmar
      Keymaster

      Recently, I read an article with research showing that newly diagnosed ALS patients have poor quality sleep, which the research associated with having depression plus difficulty turning in bed. To me, this news seemed so logical I wondered why they had to even “study” it at all!

      First, being told you have ALS does lead to many nights of lying awake and worrying. To make matters worse, ALS symptoms affecting our arms and legs require us to learn new ways to roll over (or reevaluate our sheets and blankets).

      Getting a good night’s sleep is super-important for our brain and body’s health. I found this short TED Talk helpful. Sleep is Your Superpower

      How well are you sleeping? Good, or not so good? What are your tips to get a good night’s sleep?

    • #15678
      Marianne Opilla
      Participant

      My sleep is very poor, mainly because of thoughts and fears running through my mind.  Also my mouth opens when I sleep and the dryness wakes me up.  Obviously, this has a negative affect on how I feel during the day and zaps my energy.  I get up and read, watch re runs of Criminal Minds and Law and Order.  I tried melatonin but no luck.

      My doctor put me on low dose Amitryptiline which helps me sleep, but I feel somewhat zombie-ish and feel my speech is more slurred since taking for one month.  It is a trade off: sleep vs. side effects.  I am weaning off and see how I feel, but fear the return of endless nights awake worrying.

      Anyone have any suggestions?  Thank you.

      Marianne

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