Q: What is the difference between narcolepsy and CFS?
A: Narcolepsy is a neurological condition where people have severe daytime sleepiness despite having had a reasonable amount of sleep. People with narcolepsy typically are asleep within less than eight minutes after lying down. Or they can fall asleep suddenly without intending to.
People with narcolepsy do not typically suffer from the kind of poor stamina we see with the fatigue that is typically for CFS/ME. Nor do narcoleptics typically become much worse for many hours or days following modest degrees of physical activity.
Persons with CFS/ME are almost always tired, but are not necessarily sleepy. They can be sleepy of course, but severe, profound daytime sleepiness despite a reasonable amount of sleep is not typical for most people who have CFS/ME.
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When people with CFS/ME are sleepy during the day despite having slept it’s important that the physician consider several potential causes including sleep apnea, periodic leg movement disorder, the sleep distorting effects of chronic pain and psychological distress. Narcolepsy can co-occur with CFS/ME but that coincidence is not common.
One of the judgments physicians have to make with CFS/ME patients is whether to refer to a sleep specialist for an overnight sleep study or other evaluations.
Most people with narcolepsy suffer from a deficiency of a brain neurotransmitter called hypocretin. Hypocretin promotes wakefulness. The medicines Provigil (modafanil) and Nuvigil act to increase hypocretin. These help people with narcolepsy stay awake.
I and other CFS/ME specialists have found that a significant minority of people with CFS/ME feel more awake and mentally alert with Provigil or Nuvigil even though they do not have narcolepsy. Because these medicines work within hours, I often recommend a one or two day trial. However, Provigil and Nuvigil usually do not help physical stamina. Both are controlled substances.
Richard Podell, M.D., MPH
Clinical Professor Rutgers -Robert Wood Johnson Medical School
Summit, NJ 07901