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Sleepy_Squirrel

883d

What was life like for you before you were diagnosed with narcolepsy? How has life changed for you since being diagnosed?

Top reply
    • sprkl99

      878d

      @ SleepyMamaMimi 's comment: I am late all the time too! I think it might be a combination of anxiety, lack of having a grasp on the concept of time, and who knows what else? Being late has caused A LOT of problems for me over the years and still. I just can't seem to figure out how to stop.

    • sprkl99

      878d

      @ SleepyMamaMimi 's comment: I am late all the time too! I think it might be a combination of anxiety, lack of having a grasp on the concept of time, and who knows what else? Being late has caused A LOT of problems for me over the years and still. I just can't seem to figure out how to stop.

    • sprkl99

      878d

      That's a really loaded question so I will just say that it helps to finally have a name to explain the tiredness. Also it's nice to know I'm not alone and I'm starting to learn more about Narcolepsy. At the same time my symptoms have progressively worsened as I've gotten older so life in general is much more difficult for me than it used to be.

    • mynickamesaretaken

      881d

      I’m constantly fighting to keep my energy, I haven’t been on meds in more than ten years. I used to take concerts which made me feel like a zombie, then I started taking xyrem which was really hard to get at the time because only three pharmacies in America carried it so it had to be sent to my home. Now that I am older I believe I should get back on meds but I’m just not quite ready yet. Any meds that you can suggest to bring up to a sleep doctor that I can try?

    • SleepyMamaMimi

      882d

      Life was progressively harder for me than other people. I was addicted to addrenile rushes always late for everything and always had to be phyically active in order to function. Always found jobs that kept me moving. But the symptoms affected me more as i aged and i really started to lose my mind. I was so sleep deprived and had tons of microsleeping. I finally went arround my pcp doc to a sleep specialist that is awesome and was diagnosed. Narcolepsy wasnt even on my radar as i dont present as a typical movie screen case. I struggle with insomnia and stay conscious durring my nap attacks. After being treated life got better for a while. Slowely the sleep deprivation went away, but the new meds also had side effects. I have now transitioned to xyway and it has literally saved my life. I feel like its fixing the faulty part of my brain. I wake up feeling refreshed, which is totally awesome but bizarre. I have never felt this good. So far no sods effects off this medicine. It was a difficult journey and most people struggle with health insurance and doctors not helping them. I am lucky to not have to deal with those problems. My insurance has always approved whatever my doctors want and my doctor want whats best for me. I literally feel like im just starting to live again.

☝ 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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