Starting a family requires a lot of planning. If you have narcolepsy, planning is even more important. There will be important questions to address and things to consider, especially when it comes to the medicines you take before, during, and after pregnancy. But rest assured, most women with narcolepsy have normal pregnancies and births without any complications.
Pregnancy and Your Narcolepsy Medicine
If you have narcolepsy, you likely take a stimulant to help you stay awake during the day. Many people with narcolepsy also have periods when they suddenly lose muscle control, a condition called cataplexy. Doctors often treat cataplexy with antidepressant drugs. Other medicines such as pitolisant (Wakix) or sodium oxybate (Xyrem) can help you sleep better at night so you aren’t as sleepy during the day.
Doctors don’t know a lot about the effects of narcolepsy medications on women who are pregnant or breastfeeding. Most narcolepsy medicines are in the FDA’s category C. This means that studies in animals find there may be risks to a developing fetus, but there aren’t enough studies in people.
The exception to this is sodium oxybate. This drug is in category B, which means studies in animals haven’t shown any problems in pregnancy, but studies in people are lacking. This is why there aren’t firm guidelines for women with narcolepsy who are pregnant or breastfeeding. If you are pregnant or want to get pregnant, your doctor may suggest that you stop taking your narcolepsy medicines or take a lower dose.
You’ll need to talk to your doctor about the risks and benefits of your medicines. If it’s possible for you to manage the narcolepsy by taking naps, that might be better than taking medicines with unknown risks. But if you aren’t able to function without your medicines, your doctor might recommend you continue. Many women decide to stop taking medicine themselves because they are worried it might harm their fetus.
If you decide with your doctor it’s best to keep taking your medicines, it’s important to know that many women with narcolepsy have done this without any apparent problems. Some evidence suggests that worries about narcolepsy medicines in pregnancy are probably exaggerated. For the most part, reported pregnancy outcomes for women with narcolepsy are about the same, whether they stopped their medicine or not.
What to Expect During Pregnancy
If you have narcolepsy and are pregnant, most likely you’ll have a normal pregnancy whether you take medicines or manage your narcolepsy without them. But there’s some evidence that women with narcolepsy with cataplexy have a higher risk for certain health problems, including gestational diabetes.
Gestational diabetes is the type of diabetes that happens for the first time when you are pregnant. Women with cataplexy might have a higher risk because, according to one study, they tend to gain more weight during pregnancy than those who don’t have that type of narcolepsy.
Gestational diabetes doesn’t usually have any symptoms, but your OB/GYN will be on the lookout for it. If you develop it, your doctor will recommend changes to your diet and exercise. If those aren’t enough, you may need to take a new medicine.
Women who have narcolepsy with cataplexy also get anemia more often during pregnancy. Ask your doctor if there’s anything you should look out for while you’re pregnant or steps you can take to stay healthy.
What to Expect During Childbirth
Your narcolepsy shouldn’t raise your risk for preterm labor or lead to any complications while or after giving birth. Most women with narcolepsy give birth vaginally without any problems.
In rare cases, cataplexy may happen during childbirth. If you have narcolepsy with cataplexy, you’re more likely to deliver by C-section even though cataplexy probably won't happen during childbirth.
Caring for Your Newborn When You Have Narcolepsy
Caring for a newborn is always exhausting. It can be especially hard when you have narcolepsy. Most mothers with narcolepsy say that their symptoms made it harder to take care of their new baby.
This is another time when you’ll need to talk with your doctor about whether to take your narcolepsy medicines or not. If you do, it may not be safe for you to breastfeed. However, at least some reports of women who took stimulants while breastfeeding show that it didn’t cause any problems for the baby. Many doctors advise against it just because they don’t have a lot of information about the risks.
There may be ways to reduce the amount of medication in your breastmilk with thoughtful planning. One study showed that several hours after you take sodium oxybate, the medicine is no longer present in your breastmilk. So, women could reduce the amount their babies get by carefully scheduling their meds and breastfeeding.
Breastfeeding won’t be the only factor in your decision to take medications after your baby arrives. The most important thing is that you and your baby are safe, whether you can breastfeed or not. Medicines that control your symptoms may help keep you both safe.
It’s also a good idea to make sure you have all the help you need from others so that you get the rest you need. If you’re taking sodium oxybate to sleep better, for example, you’ll need to make sure that there’s someone else who can wake up with the baby as needed at night. It won’t be easy, but you’ll find a way to make it work.
Keep in mind that because of the limited data and uncertainty about narcolepsy and pregnancy, doctors will likely have different advice and opinions about this. It’s possible that your primary care doctor or OB/GYN will have different opinions than your sleep doctor. If you aren’t satisfied with your doctor’s advice or your doctor doesn’t have much experience with these questions, consider getting a second opinion.
