I joined several groups on facebook looking for answers and more knowledge than I already had. More of a hands on experience from those who already had Narcalepsy I wanted to see what it was like and did to others in there life. One day I saw a post about a trial for this medicine called Xyrem one that my DR wanted me to try. So I contacted them to inquire realized I would than quallifie for such a study and quickly signed up.
How does it feel to be one with Narcalepsy and Cataplexy *NwC*. The easiest way to explain it is to stay awake for 3days and live your normal life at the same time. Someone with Narcalepsy experience that every day no matter how many hours they get at night or how many naps they take during the day. Imagine that even though you know you got plenty of sleep and should be wide awake that your body tells your that your so worn down that it is going to shut down on you. Some even experience hallucinations, nightmires, paralizists, as well as many others.
Its hard to tell you how Cataplexy feels becasue its diffrent for everyone. Image when you were a child and your parents would roll a ball with you on the floor. Image now that when you try to reach out to push the ball back.your arms are limp and you can't physically move to push it like your trying to. Which is caused because of your emotions and you having fun. So everytime you laugh, cry, feel, anger, stress the more it happenes.
There are times your depression will set in because you fell like you can't do anything. Some even feel they are unworthy of relationships.
So before the study and drugs I slept all the time if I wasn't at work or school I was in bed asleep. If I woke up anytime between 8-10am my body would shut down by 3-5pm. I no longer planned my day before 10am.
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