"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 have to be housebound for nine months, then so be it. I don't want to have cataplexy while I'm out running errands," she adds. "I'm not taking any chances, for the baby or myself."
Joyce Walsleben, PhD, director of the Sleep Disorders Center at the NYU School of Medicine and author of A Woman’s Guide to Sleep, notes: "Before conception, women with narcolepsy need to first talk with their physician and evaluate their individual situation. A woman with narcolepsy needs to consider the health of the baby as well as her own health and safety."
There are risks associated with going off narcolepsy medication, though the degree of risk may vary by drug. The most serious effects are felt when the cataplexy treating anti-depressants are not taken. "To abruptly stop taking anti-depressants can lead to a very bad cataplexy rebound," says Dr. Mignot. "Going off short acting stimulants like Dexedrine® also causes rebound sleepiness. However, when Xyrem® and Provigil® are stopped, the change is less dramatic. The best thing to do is gradually come off medication," he advises.
Dugan's narcolepsy is treated with Dexedrine® for alertness and imipramine for cataplexy. Due to the seriousness of her condition, she was unable to completely stop taking the Dexedrine®, although the dosage was dramatically reduced. She did stop taking the imipramine. "As a result, I couldn't do my job as a systems engineer," she said. "I couldn't even drive or go to the grocery store by myself. When you are pregnant and have narcolepsy you will have to make sacrifices, like surrendering some independence."
There are resources available for narcolepsy and pregnancy. Bob Cloud, executive director of the Narcolepsy Network, notes that their Web site, www.narcolepsynetwork.org, has a "Medications and Pregnancy" question and answer board. He also recommends the section titled "Investigating your local support groups."
Dugan offers the following advice, "It's important that you also work closely with your doctors, your OB/GYN and sleep specialist. Do your research and consider your best course of action." "I urge anyone with narcolepsy who is considering motherhood to make sure that you have a support network in place," says Dugan. "Work with your family, friends, and neighbors. Educate them! Teach them what narcolepsy is and give them the signs to recognize when you need help." As Dr. Walsleben says in her book: "Don't ask for help, demand it!" "To be a mother, especially a narcoleptic mother, is a calling— a profession—for the brave of heart," adds Dugan. "The journey of living and sacrificing for your child is a gift from God to parents, which teaches us what life is really all about, and what makes life so full and meaningful. My children warm my heart. Narcolepsy teaches us to look at the things we can do, rather than what we cannot."