I'm 19 & I was diagnosed with narcolepsy just about 8 months ago. In that time I have been on three different medications for this illness. Before My diagnoses everything was miserable. I had never felt normal, never good, never like anyone else my whole life due to prior health issues. I have many allergies, was diagnosed with focal seizures , lupus, fibromyalgia , And survived thyroid cancer all by the time I was 17 . I had just went from taking almost twenty pills to taking three a day. I was feeling like a human and myself . Still not as good as everyone else and then all of a sudden the exhaustion got worse and I was randomly falling asleep . I felt worse than I ever had before. I couldn't even make it to my classes . My first freshman semester I had to withdrawal from school to goto a doctor, who after running the same tests on me three times confirmed I had narcolepsy. He put me on nuvigil and it worked for a month, then stopped. I went back to being a million times worse, and everyone thought I was over dramatic . It always seems like if you don't actually have narcolepsy you just don't get it. Every second of my day is like how most people would feel after not sleeping for two days and running a marathon then having to function as if nothing is wrong . My doctor decided that I needed to switch to adderall and add something called xyrem. I listened . I was on 10 mg to start . Not only did that ware off quickly but the xyrem made me go into panic attacks at night that I didn't remember. So I stopped the xyrem and upped my adderall to 20mg. . Now at that point I was six months into my diagnoses . Now I'm at 8 months and back on a lower dose of xyrem and taking two 30 mg's a day . I feel great it really works for me . But my concern is there is not a lot of information on xyrem, and the health issues that adderall will cause. I can't stop it when I'm older because it helps me have a liveable life. It's not an addiction it's not a cure by far it's simply a temporary fix that without would leave myself and others with this illness unable to get out of bed, drive, move, and have any sort of life. But adderall has a long term side effect of causing cardiovascular issues. So what, to feel healthy now and for maybe ten to twenty years I have to be tearing my cardiovascular system apart? Seems counter productive . It seems there is no research in it what so ever compared to many other illnesses . I have never met another person who has had narcolepsy or cataplexy . I have a supportive family, friends and boyfriend but if you don't have the illness you don't understand. I'd love to just hear some insights from other people who suffer from narcolepsy and cataplexy. Thanks!