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June 16, 2003 - Melissa My name is Melissa and I am 15 years old. I have been diagnosed with narcolepsy with cataplexy; it is probably the worst thing that has ever happened to me in my life. I used to be known for my laugh. Until one day, I was having a regular conversation and went to laugh and about fell on the floor. I was weak all of the time. Along with that, I noticed how tired I was. My mom thought I was depressed and there was even a time where she thought I could be on some sort of drugs. My grades went down and I found myself not caring about anything. The weakness grew worse, and it scared my family and me. I thought I had a brain tumor or something, I honestly thought I was going to die. Well as time went on, I was finally sent in for a sleep study. I was diagnosed with narcolepsy with cataplexy. Basically at that point my life took a total turn in the opposite direction. Everything was now different, I couldn’t laugh with my friends, I was too tired to hang out, and my grades were just awful. About a month later, I received medication. By this time I had lost friends and dug myself into a deep depression. After a month or so, I finally accepted the fact that I needed to take control of my life. I got good with my medicines, I wasn’t tired anymore, and the medicines somewhat helped my cataplexy. I still deal with my cataplexy each and everyday, my laugh has changed so much. Now it's not even fun for me to laugh anymore. I have increased the doses of medication to try and help with my cataplexy, but more medication gave me horrible stomach aches and didn't help at all. Sometimes I catch myself watching other people laughing, and wishing just for one day that I could do that. I know I’m a different person now, but I still don't understand why I was given this awful problem. If I could have just one thing I would ask to be myself again. To be able to laugh and be with my friends, not have to work extra hard in school to maintain my GPA, and to have regular sleeping habits. My cataplexy is a lot stronger then my narcolepsy. I don’t fall asleep at random and I’m even taking drivers Ed at the moment. I take my nap everyday around 3 and make sure I always have my medication, but to make matters worse I have just started to have hallucinations when I sleep at night. Seeing people over the top of me, and thinking I have fallen onto the floor when I really haven’t. It's such a strange experience I can’t even explain it. I don’t know why I have these problems and I really wish I didn't. My life has changed dramatically and I can't even imagine having this the rest of my life. I would never wish this on anyone else. I'm writing this comment because I have searched everywhere to find someone else my age that has this problem. Just to talk to someone else who knows what I’m going through would be so awesome. I just want to know that I’m not the only one with this. And there are other kids just like me out there. If you read this, and have something to say PLEASE do. Melissa
December 28, 1998 - Louise I have been a University professor for many years (I am now disabled). I have long been diagnosed only for major and resistant Depression. Only recently have I been diagnosed with Narcolepsy with Cataplexy. (At least 40% of persons with Narcolepsy also suffer from Depression.) I have developed many other neurological problems that are not typically associated with Depression or Narcolepsy. These have not been associated with any other major brain disorder. My doctors (Neurologist and Psychiatrist) do not know whether my condition is due to past over-medication or to the normal evolution of whatever goes wrong in my brain. We try to avoid too much medication that might help to control these problems, because they still seem minor, although they do increase with time. I have read your abstract about the use of EMF in the treatment of partial Cataplexy for patients with multiple sclerosis (MS) which shows improvements that seemed to help far more than Cataplexy. Has there been any research on potential benefits of EMF in the treatment of Narcolepsy and/or Major Depression?