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    • #19811
      Price Wooldridge
      Moderator

      Raise your hand if you’re a technology Geek. (My hand is raised). Because I like to keep close watch on my health, I like to take advantage of the health sensors and health apps available to us in this golden age of technology. (I go back to the days of the first IBM Personal Computer introduced in 1981). But enough about gadgets, let’s get to the nub of today’s topic, sleep and Firdapse.

      Recently I’ve seen comments concerning disturbed sleep, quality of sleep, and late evening doses of Firdapse. NOTE: What I’m about to detail is NOT a recommendation or guidance on how YOU should dose your Firdapse. Often I take my last dose of Firdapse, anywhere from 8 to 10 PM, depending on when I got started for the day, and how close I came to my dosing schedule. Sleep is an issue for me. It’s a big one. Having heard comments from a few others that they feel late doses of Firdapse could be affecting their sleep quality, I’ve decided to see if trying to finish my last dose earlier in the evening might not help my sleep. Anything I do however, would be strictly anecdotal because of the other variables involved. These include using Melatonin or not, and CBD or not. Still I think it’s worth a go.

      The app I use to monitor and assess sleep is, AUTOSLEEP. I use it with my iPhone 13 Plus and my latest series Apple Watch. I especially like this new Apple Watch because it meassures SPO2 overnight while I sleep. In particular I pay attention to SLEEP QUALITY time and DEEP SLEEP time. Last night I took my last Firdapse around 7 PM and went to bed at 11:40 PM. My QUALITY time was 4:32 and my DEEP was 1:32. I’ll be keeping a watch on these trends.

      Do you have any comments on your sleep quality while taking Firdapse? Let me know!

    • #19821
      Dorothy Dempsey
      Participant

      My prescription order is for 8 tabs, one q 3 hrs/day.  That is too disruptive of sleep which is critical for us LEMS patients.  I found that taking one q 2 hrs. Through waking hrs. Works well for me and just had visit with my Neurologist and he’s perfectly okay with that as I am able to play catchup come morning and doesn’t make getting up at night an issue as far as mobility is concerned.

       

       

      • #19823
        Price Wooldridge
        Moderator

        @dordem Dorothy, I’m glad that change in dosing is helping you! And that you ran it by your neurologist.
        I’m trying to get my last dose in by around 7 pm but have not always been successful. It’s too early for any definitive improvement in my sleep, as measured by my sleep app, so my experiment is ongoing.

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