"When you are pregnant and have narcolepsy you will have to make sacrifices, surrendering some independence."
Pregnancy is a time of immense joy and a time of numerous life-altering challenges. Imagine how these challenges are intensified when narcolepsy is added to the picture.
Collene Dugan, mother of two (ages 15 and two) and narcolepsy sufferer, understands the demands of having a sleep disorder and being pregnant all too well. "While I was pregnant, I was sleeping 10 or 11 hours a night and took a couple of two-hour naps in the afternoon," she says. "It was exhausting."
Narcolepsy is a chronic neurological sleep disorder. It is characterized by excessive daytime sleepiness, often accompanied by cataplexy, a sudden loss of muscle control in response to strong emotional reactions that often cause the body to collapse suddenly during waking hours. Other symptoms of narcolepsy include sleep paralysis (difficulties that occur when falling asleep such as being unable to speak or move for a brief period), and hypnagogic hallucinations (vivid and often scary dreams).
Narcolepsy must be treated with medication; however it is the symptoms of narcolepsy that are treated, not the disease itself. "People with narcolepsy are commonly prescribed stimulants such as Provigil®, Ritalin®, or Dexedrine® to treat daytime sleepiness," says Emmanuel Mignot, MD, PhD, director of the Stanford Center for Narcolepsy. "Anti-depressants such as Effexor XR® and Zoloft® are often prescribed to treat cataplexy. The newly approved Xyrem® treats both cataplexy and can help relieve daytime sleepiness."
Since the long-term effects of these drugs on a developing fetus are unknown, Mignot says that he always advises his patients that it is better to stop taking their medication. For many women with narcolepsy an extended time without medication, which can begin with the decision to become pregnant and last until birth, can be quite miserable. This can lead to very difficult choices. "The decision to go off medication is obviously a very personal one," explains Michelle Hemingway, who has narcolepsy and is in her first trimester of pregnancy. After weighing the risks,
Hemingway is off her medication. "I've decided that if I