Patient Comments: Narcolepsy - Excessive Daytime Sleepiness

If you've been diagnosed with narcolepsy, please discuss your experience with daytime sleepiness.

Comment from: 2sleep or not 2sleep, 45-54 Female (Patient) Published: September 02

I was diagnosed with narcolepsy at around age 40. I am now 47. I was on Ritalin and didn't like the side effects. I tried Provigil and had allergic reaction. Now on Provigil 150 mg 1 time per day. I feel like it is not helping as much and have appointment to talk to my doctor (a new doctor). I am hoping to have a better answer than try this or increase that. I am tired of being tired and tired of taking medicines. I know it is a lifelong disease, but there has to be something besides drugs to help with the daytime drowsiness. I have less of the vivid dreams, however I have full on conversations when I sleep. I catch myself doing this when I am on the van pool; embarrassing. I have declined a lot of things that would be fun because of my narcolepsy. I would not be happy about no more driving. Some days I am feeling great. Other days like today, it is just plain scary.

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Comment from: ruggby, Female (Patient) Published: June 02

I submitted to sleep study after decades of sleep disorder symptoms and difficulty staying awake on the road and in many environments. Then suddenly last spring, I started falling asleep without warning at stop lights and woke up driving past a semi one afternoon. Diagnosis was idiopathic insomnolence, and trying to find medication that works without pounding headaches and intense buzz. I am changing from modafinil to Nuvigil right now. Hoping to find the magic bullet. I don"t know why my condition suddenly became so extreme... stress of job was high; also nearly 60 years old now.

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Comment from: Joseph 63, 45-54 Male (Patient) Published: December 27

I am facing day time sleep, especially while reading in the bed. Second minute I will fall asleep. I am feeling great embarrassment and prefer to sleep separate, to avoid attention of other people. The moment I try to concentrate on some subject I start feeling sleepy and can go into deep sleep fast. It affected my studies a lot and with the help of will power I finished my studies.

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Comment from: JLP, 55-64 Female (Patient) Published: May 10

I was correctly diagnosed with narcolepsy when I was 21; I'm now 64 and have been on Ritalin SR (generic) since the sustained release form first came out. I'm an RN, and have probably had narcolepsy all of my life because relatives always said that I was the "good child" between two very active siblings (my mom died when I was young so I never had any input from a parent on this). When I am highly stressed, I fall asleep. I managed to pass my state board RN exams only because an elderly test monitor kept waking me up. I've also fallen asleep while driving, working, standing, and even while teaching patients if I either sit still too long or I'm tired. Most of my life I've managed OK as long as I'm on meds and have adequate sleep. I've tried not to get stressed out; having a laid back personality and supportive family and friends has also helped.

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