Hi Natalie—
I think you’re learning at an early age that, when it comes to medical problems, you often have to fend for yourself in this world. The tiredness you describe at your age is definitely abnormal, and all your symptoms are indeed consistent with narcolepsy, a debilitating illness that usually makes its first appearance in our teen years, and which causes us to be chronically weak and tired, and to have “waking hallucinations.” In your report you’ve described all three symptoms, and you are exactly the age when narcolepsy most often strikes. If you don’t snore at night (a sign of sleep apnea), then narcolepsy is the next most likely candidate!
A new report issued by the National Science Foundation found that 96% of all primary care physicians do not initiate conversations with their patients about the quality of their sleep during office visits. 80% of these same physicians admitted that they are not as knowledgeable about sleep problems as they should be.
It is impossible for your primary doctor to know everything about subspecialties of medicine, like sleep disorders. But your symptoms are so clearly abnormal, and fit the pattern of narcolepsy so consistently, that you need to referred to a sleep specialist. The diagnosis of narcolepsy requires an overnight stay in a sleep disorders center for a painless test. If your sleep doctor determines that you do have narcolepsy, or a related disorder called Central Nervous System hypersomnolence, then getting treatment is easy—and will dramatically change your life. Untreated, narcolepsy effects our ability to perform well in school, at work, and with our friends—as you already are learning.
While you are waiting to get a new appointment with your primary care physician (who has to refer you to a specialist so that your visit is covered by your insurance), why don’t you contact a sleep disorder center in your area. Ask for information about narcolepsy that they can send you, including a questionnaire that will help the sleep center determine whether you have narcolepsy or not. Fill it in, send it back to the sleep center, and ask the doctor at the sleep center to contact your primary care physician about scheduling an appointment. You need to be seen by an expert, who is able to disgnose you and prescribe treatment. The sooner the better!
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