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Diagnosed with Narcolepsy - Looking for Success Stories

PlantParenthood

667d

Just diagnosed officially today with Narcolepsy w/o cataplexy. Already taking stimulants for ADHD, but have to be careful bc of my epilepsy. At a loss as to how to proceed and feeling very overwhelmed. Any success stories out there?

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Cataplexy & Narcolepsy

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    • jmr2191

      666d

      @PlantParenthood true, but make no mistake: my seizures aren't gone and I do still need a nap to get through each day. Some are harder than others. It's not a cure, you're right that there is hope. The way I like to look at it: there's no better time in history to be sick than today. Modern medicine offers more opportunity to mitigate symptoms than has ever been on offer before and it gets better every day.

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    • jmr2191

      666d

      With my current combination of treatments (including the RNS System, various anticonvulsants and Xyrem), I've been able to work full time, live on my own and I recently launched my own business. Not sure I'm what one may consider a success just yet, but I'm working on it. I always had a difficult time leaving well enough alone. There had to be some way to compensate, right?

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      • PlantParenthood

        666d

        @jmr2191 you are! By success I just mean able to live your life based on abilities, desires, and limitations that aren't about narcolepsy or other chronic neuro stuff. Xyrem is def on the list of options. He's moderately upping my Adderall for a few weeks and working on prior auth for xyrem. I will likely start that in about a month or so. This makes me more optimistic. Thank you!

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        • jmr2191

          666d

          @PlantParenthood true, but make no mistake: my seizures aren't gone and I do still need a nap to get through each day. Some are harder than others. It's not a cure, you're right that there is hope. The way I like to look at it: there's no better time in history to be sick than today. Modern medicine offers more opportunity to mitigate symptoms than has ever been on offer before and it gets better every day.

          1

          Reply
    • jmr2191

      666d

      I have narcolepsy AND epileptic seizures, as well (due to another condition). For Narcolepsy, I only need one medication: Xyrem.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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