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re: Thank you
by Pam (no login)
Sam...Unfortunately I have heard your story from many other newly diagnosed narcoleptics. Most of us have gone through years of misdiagnosis or no diagnosis. It was some thirty years before I was diagnosed. That is totally unacceptable. Our physicians spend less than a half hour in medical school studying sleep disorders. While our disorder is not really rare (1 in 2000) it is treated as such, simply because (my personal opinion) it is not a life threatening disease. Psychiatrists are probably the most qualified, as narcolepsy is truly in the BRAIN. I began my symptoms in my senior year of high school. I was an honor student and set to graduate early, but things began to change for me during the summer before my senior year. I couldn't stay awake to read a page in my txst books. I ended up dropping some classes, as I was so overwhelmed and couldn't retain the information that used to come so easily for me. One tip, I can give you, I would buy some 3x5 index cards, and as I read I would write down important points of each paragraph that I knew would probably be on a test, and reviewed them often. Maybe not knowing what was wrong with me I just made adjustments to studying and did whatever it took to get through high school. You have the advantage of educating the people you know about this disorder and get the help you need. If you have that "A" personality type, like I do, you will not go down without a good fight. I explain to friends that I am the same person that you've always known, but I have this disorder, that disrupts my life, and I do what I have to, to live it the best I can day by day. Your mom needs to be totally in your corner and fight the fight right along with you when it comes to school, teachers and doctors. Don't stick with a doctor if you don't feel comfortable with him/her, they need to be totally on your side. I know how it is to have falling to the ground cataplexy and how embarrassing it can be and how it makes you feel as though you want to just stay away from people and activities and become a recluse. Probably the hardest thing for me (remember I am 63 and retired) is that I have to do things more spontaneously, I am unable to make plans further out than a day, because I don't know how I will feel that particular day. Some days I have such fragmented sleep at night, that all the next day I fight staying awake and have no energy to go out of the house. Some periodic depression is normal for those of us with narcolepsy. I try to stay busy and positive, not dwell to much on the "why am I the lucky one to get this disorder", you know the pity party syndrome. All we can do is be and do the best we can, each and every day. If some people don't get it, then we don't need them as friends. Move on. It's ok to put yourself in the center of this disorder, it is about you, but don't let it rule your life, is the best advice I can give.