Management of narcolepsy during pregnancy

Background: The management of pregnancy in patients with narcolepsy poses many questions regarding therapy, including the risk to the mother and fetus related to the disease, potential risks at the time of conception, the risk to both the mother and the fetus of the medications used to treat narcolepsy, and the risk to the infant from medications that might be secreted in breast milk. There are no detailed practice parameters on the treatment of narcolepsy patients during pregnancy. We surveyed narcolepsy specialists from around the world to determine their clinical approach to the management of patients with narcolepsy at the time of conception, during pregnancy and while breastfeeding.

Methods: Survey invitations were sent via e-mail to 75 clinicians worldwide between 2/2011 and 3/2011 with 34 responses (USA, n=10; Brazil, n=3; Czech Republic, n=2; France, n=2; Italy; n=2; Netherlands, n=2; Canada, n=1; Denmark, n=1; Finland, n=1; Germany, n=1; Japan, n=1; Spain, n=1; unknown n=7). Responders who completed the survey had 20 years (median range, 5-35) of experience in sleep medicine practice with a median number of five narcolepsy patients seen per week. The number of pregnant narcoleptic patients followed per physician was five (median range 1-40).

Results: The survey results indicated that the management of patients with narcolepsy varies greatly from clinician to clinician and from country to country. The majority of the clinicians stopped the narcolepsy medications at the time of conception, during pregnancy, and during breastfeeding some reduced the dose and others did not change the dosage, depending on the particular medication.

Conclusions: The findings from our survey and literature review suggest that the perceived risks of narcolepsy medication during pregnancy to the mother and the fetus usually are overestimated, as the risk for teratogenic effects from narcolepsy medications in therapeutic doses is essentially nonexistent. However, the potential for rare complications during pregnancy and congenital abnormalities cannot be excluded. Most narcolepsy patients have vaginal delivery without complications. In rare cases patients had cataplexy that interfered with delivery, but if caesarian is required there appears to be no increased anaesthetic or surgical risks. Further prospective information for the appropriate treatment of narcolepsy patients during pregnancy is needed.