Parenthood & Pregnancy
Considerations for People Who Have Hypersomnias
Considerations for People Who Have Hypersomnias
Published May 18, 2021
Revised August 13, 2021
This content was developed by the Hypersomnia Foundation for use by person(s) who have hypersomnias (PWH), such as idiopathic hypersomnia (IH) or narcolepsy, in conjunction with their doctors. It is based on consultation with OB/GYN, pediatrics, sleep medicine and lactation experts and review of clinical findings in publications and at professional conferences.
We recommend that PWH and their doctors each familiarize themselves with the content in advance of an appointment to discuss specific concerns and questions. (For the clinician unfamiliar with IH, we also recommend review of our IH Summary and About IH web page.) It is always appropriate for the healthcare provider to be sensitive to their patient and their comfort regarding how they want to talk about their body. A simple way to begin that conversation is in introductions: “Hi, I’m Dr. X. I use ”she” and “her” pronouns. How would you like to be addressed?”
PWH confront many questions and challenges when making decisions about their reproductive health. The purpose of this content is to provide them and their doctors with information to help make informed choices. Hypersomnia genetics/inheritance patterns and symptoms and the medications commonly used in the management of hypersomnias may affect decisions regarding parenthood, pregnancy, and human milk feeding. It is important for PWH, with the help of their doctors, to seriously consider whether or not their personal symptoms and their severity and response to treatment are compatible with parenthood and/or pregnancy (also considering outside resources like financial and family support). Plenty of PWH are parents (whether via pregnancy, adoption, etc.), but for others, the severity of symptoms may make parenthood inaccessible. Reviewing Personal Journey Stories of other PWH may be helpful.
See also our related page, “Birth Control, Menstruation & Menopause: Considerations for People Who Have Hypersomnias,” which covers the following topics:
Limited studies suggest that about one third of people with IH have a family member with similar symptoms, suggesting a genetic component. Familial frequency and inheritance patterns, if any, are largely unknown. Patterns of prolonged sleep appear familial, but can be difficult to distinguish from IH. (Read more HERE.)
Several family studies including hundreds of individuals with narcolepsy have shown that it is rare for family members to have the same diagnosis. Experts believe the likelihood of offspring also being affected is 1-2%. (See related slides from Dr. Arnulf’s 2018 conference presentation HERE.) However, since sleepiness and prolonged sleep seem to be at least partially familial, people with narcolepsy may also be more likely to have children with other sleep disorders. The details are not yet known. (See Daly 1959 and Masri 2012.)
Some people who have IH or narcolepsy feel more wakeful during pregnancy, probably because of changes in hormone levels. Others feel more tired and/or sleepy than usual, and of course discontinuing their medications may further worsen this. Work or school accommodations or medical leave may be necessary if symptoms prove too debilitating (whether that is while trying to conceive, during pregnancy, and/or after pregnancy). Prior to conceiving, a PWH should be familiar with their short- and long-term disability options, in case disability income proves necessary.
Ideally, PWH should review their treatment regimen with their provider prior to becoming pregnant, because many teratogenic effects (causing birth defects) occur early in pregnancy, as the organs begin to form (organogenesis). Because both pregnancy and parenthood while living with a chronic disease can be more difficult, it may also be helpful to consider counseling with a goal to maximize coping skills. Additionally, hypersomnia support groups may help PWH feel supported and less alone as they go through this complex decision-making process and significant life change.
It is also important to watch for additional sleep disorders that can arise during pregnancy, such as sleep apnea and restless legs syndrome. Both typically resolve quickly postpartum. (Read more HERE and HERE.) And any pregnancy-induced changes that can lead to worsened fatigue/sleepiness should also be extra-carefully monitored in PWH. These include iron, b12, and folate levels. (Read more HERE.)
Recommendations for using or stopping medications during conception and pregnancy are developed by comparing rates of birth defects. Even without medications, the rate of birth defects is about 2% in the general population. Registries track pregnancies to determine if the likelihood of birth defects is higher when the pregnant person is taking specific medications. If a medication is continued during pregnancy, it is very helpful to report this in pregnancy registries, as doing so provides valuable information to help future pregnancies. The U.S. FDA maintains a list of these pregnancy registries.
Unfortunately, little is currently known of the teratogenic effects of many medications commonly used to treat hypersomnias. Until more is known, the only reliable option to avoid risk from medications is to not take any such medications, especially during organogenesis. For some people, completely stopping one or more medications may not be acceptable, especially in cases of sleep disorders. Poor quality of life, depression, inability to drive, unemployment, and other challenges may arise as a result. Only the PWH can decide if the risks of these medications during pregnancy are justified compared to the risks of stopping the medications.
If a PWH and their doctors decide that taking medications during pregnancy is warranted, here are a few strategies for reducing risk:
In general, medications should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus. Below are short summaries of the pregnancy risk profiles of medications commonly used to treat IH and narcolepsy. Because the decision-making process for each medication may be quite complex, a PWH and their OB/GYN may decide that referral to a Maternal-Fetal Medicine (MFM) specialist for further discussion of the potential pregnancy and human milk feeding risks of these medications is preferred. (See also the MFM and Human Milk Feeding sections below.)
Newborn Withdrawal From Antidepressants
Although newborns may experience withdrawal symptoms from antidepressants (including both clomipramine and SSRIs/SNRIs), there is no evidence that tapering off these medications in the third trimester improves infant outcomes. Also, stopping antidepressants risks precipitating a depression relapse or postpartum depression, particularly in high-risk individuals. And if these medications are being used to treat cataplexy, that symptom will likely worsen when stopping them. If antidepressants are used continuously through delivery, the newborn should be monitored closely and may need to spend a few extra days in a neonatal unit or a “kangaroo unit”. (Read more HERE.)
On average, it takes six months to become pregnant. It can be difficult to give up medications completely during the months, or perhaps years, that may pass before pregnancy begins. Instead of stopping all medications completely, it is possible to take medications during some days of the month when there is very low risk to a potential pregnancy. During the early part of the cycle before the egg has formed, been fertilized and implanted in the uterus, there are a number of days where medications may be taken safely.
Medications in the blood of the pregnant person do not pass to the embryo until the embryo is implanted on the wall of the uterus. Ideally, a PWH should be aware of their menstrual cycle, specifically frequency, timing, and duration of menses. In so doing, the timing of ovulation can also be determined. This would also allow identification of a “safety zone” when taking medications with unknown risk is safe, as there should be no exposure to a developing embryo if conception does indeed occur.
|Medication||Half-Life||Days to Eliminate||Safety Zone Days|
|Adderall||up to 14 hours||3||1 – 18|
|Clarithromycin||up to 9 hours||2||1 – 19|
|Methylphenidate||about 3.5 hours||less than 1||1 – 20|
|Modafinil/Armodafinil||about 15 hours||3||1 – 18|
|Pitolisant||7.5 to 24.2 hours||up to 5||1 – 16|
|Ritalin LA||1.3 – 7.7 hours||up to 2||1 – 19|
|Sodium Oxybate||0-1 hour||less than 1||1 – 20|
|Soliramfetol||about 7.1 hours||2||1 – 19|
For example, a PWH (with a regular 28-day cycle with ovulation on Day 14) taking modafinil may take it for 18 days starting on the first day of menstruation. By stopping it after Day 18, there is enough time (3 days) for it to clear their system by the end of Day 21, before the most likely date of implantation on Day 22. If pregnancy occurs, the embryo should never have been exposed to modafinil. If conception does not occur, menstruation will start and modafinil may be taken for another 18 days. In the case of early bleeding, one should wait until Day 1 of one’s next predicted menstrual cycle and then take a highly sensitive urine pregnancy test before deciding to restart one’s meds.
If the menstrual cycle is irregular, then ovulation and therefore fertilization and implantation cannot be predicted reliably. Therefore, it is safest to assume a very short cycle of 21 days, in which ovulation occurs around Day 7 and implantation 8 days later at Day 15 (as opposed to Day 22 for the table above). In this case, medications need to be eliminated by the end of Day 14.
Maternal-fetal medicine (MFM) is a subspecialty of obstetrics, devoted to the monitoring and management of “high-risk” pregnancies. “High-risk” may be defined in a number of ways, but typically implies any maternal and/or fetal condition or complication requiring monitoring and care above and beyond the routine, or the comfort level of a generalist obstetrician/gynecologist. This may include:
Although PWH can experience uneventful (“low-risk”) pregnancies, the sonographic and fetal monitoring expertise provided by MFM can further increase the likelihood of good outcomes.
An MFM physician would also be able to provide counseling as soon as pregnancy is diagnosed or planned. They can help evaluate the potential risks of medications and medical conditions on pregnancy and human milk feeding, which may provide reassurance and/or guidance to the PWH and their prescribing doctor(s). MFM specialists can also perform an early ultrasound to establish a reliable due date, which allows for determining exact gestational age at any given point in time.
Given the unclear association between the typical medications used to treat hypersomnias and birth defects, evaluating the fetal anatomy in a detailed fashion is important. This is also true for any pregnancy, as malformations can also occur in the absence of any medications. In other words, the routine evaluation for birth defects is just as relevant to the PWH as it is to any other. Being fully prepared for the birth of a newborn with a serious abnormality, such as a heart defect, provides a significant advantage to the family and pediatricians.
Similarly, and as mentioned earlier, fetal growth should also be monitored by ultrasound, typically every 4-6 weeks. Observing fetal behavior during these ultrasounds or by a fetal monitor is a means of evaluating blood flow and oxygen delivery to the fetus. As opposed to conditions such as obstructive sleep apnea, which can involve poor breathing efforts and jeopardized oxygenation to both pregnant person and fetus, this is not an issue for the fetal behavior of a PWH. Nonetheless, taking advantage of any scheduled ultrasound to ensure fetal well-being is prudent. However, observing fetal behavior does not allow for the diagnosis or prediction of withdrawal or abstinence syndrome from medications taken (or discontinued) during pregnancy.
In some cases, a generalist obstetrician/gynecologist may feel that a consultation with MFM is unnecessary, especially if they have experience with PWH or if the patient is otherwise healthy. Some generalists also perform ultrasounds, as well as fetal monitoring, in their offices, in which case referral would be furthermore unnecessary.
Studies of obstetric outcomes have been conducted in people with narcolepsy in both the U.S. and Europe. In the U.S. study, there were no differences in route of delivery (spontaneous vs. induced vs. Cesarean), gestational age at delivery, or birth weight compared to a control population. In the European study, similar outcomes were noted, with the exception of route of delivery: people with narcolepsy with cataplexy were more likely to undergo Cesarean delivery.
Cataplexy during delivery is rare. Immediately following delivery, cataplexy may occur due to the heightened emotions typical of childbirth. Therefore, it may be prudent to take extra care when giving the baby to the PWH for the first time.
Because both hospitalization and anesthesia may affect hypersomnia symptoms and management strategies (including both medications and sleep schedules), it is also prudent to review the Hypersomnia Foundation’s Anesthesia, Hospitalization and IH Guide and to develop a personal Anesthesia/Hospital Care Plan well in advance of delivery or other hospitalization.
There are many factors that can reduce milk production; these include:
Regardless, many parents are highly motivated to give their milk and are encouraged and delighted to provide whatever milk they can produce. PWH may particularly benefit from talking with a lactation consultant for additional support, as there are numerous other helpful strategies and tools to aid and ease milk production.
Formula and Donor Milk
For many reasons, including the potentially extra difficulties for PWH in milk production and the possible risks of infant exposure from medication use (see below), PWH may choose to feed with formula, either completely or as a supplement. If one can access pasteurized donor milk, this option may also be considered (see hmbana.org). PWH may also consider milk sharing, which has its own additional risks (read more HERE.) It is important for each individual to weigh the benefits of human milk feeding against the risks and difficulties.
Medications and Human Milk
Many medications pass through to human milk, whether one is nursing or pumping. As is the case during pregnancy, data on medication safety and compatibility with human milk feeding is emerging. For all medications, it is important to weigh the potential risks of infant exposure via human milk against the known benefits to the infant of human milk feeding and the benefits of the medication for the parent’s symptom control. Each parent should make their own informed decision after discussion with their healthcare providers. The following medications are believed to be compatible based on very small studies:
A single case of a nursing parent taking modafinil showed that the infant received a weight-adjusted infant dosage of 5.3% of the parental dosage, which is considered acceptably safe.
Given this medication’s short half-life and limited time in human milk, the following precautions make sodium oxybate compatible with human milk feeding:
Most parents with a new baby are exhausted; a parent with a hypersomnia is usually even more so. In a European study of 249 mothers with narcolepsy, 60% reported that care of their baby was adversely affected by their symptoms. PWH should take advantage of any periods of infant sleep to sleep themselves.
Others in the household may be required to respond to the infant when the PWH is sleeping, as the PWH may not awaken despite crying, especially if the PWH’s sleep is very deep or if they take sodium oxybate. The same can also be said during episodes of sleep drunkenness (i.e, severe sleep inertia), a common symptom of IH in which there is an extreme and prolonged difficulty fully awakening, associated with an uncontrollable desire to go back to sleep, which can be accompanied by automatic behavior (performing tasks without conscious self-control and with partial or total loss of memory), disorientation, confusion, irritability, and poor coordination.
Depending on symptoms and whether one has decided to stop one’s medications or reduce their doses, a PWH may need significant help with the infant. Ultimately, a parent with IH or narcolepsy is best served by uninterrupted, restful sleep whenever possible, optimization of their treatment regimen, and familial and other help.
Familial support may be needed to help prevent injury, such as while ascending or descending stairs or while bathing, especially in people with cataplexy, sudden-onset sleep, or severe sleepiness that is not well-controlled. Guidelines for parents with epilepsy may be helpful to review, since many of the risks are similar.
Some PWH fear that they may fall asleep or experience cataplexy while nursing or bottle feeding. PWH and their doctors will need to consider the level of this risk, depending on how well symptoms are controlled. Some PWH may experience sudden unexpected lapses into sleep, but some are able to prepare for a sleep session when their sleepiness escalates.
Potential ways to reduce these risks include:
Some parents may choose to feed their child while wearing a sling or similar baby carrier. There is some risk, particularly if the wearer is not able to be awake/alert to movements their baby is making. (Read more HERE.)
According to safe co-sleeping guidelines, people “taking sedatives, medications or drugs, or intoxicated from alcohol or other substances, or otherwise excessively unable to arouse easily from sleep should not cosleep on the same surface with the infant.” SIDS research has documented the risk of infant entrapment on upholstered chairs, couches and on beds with extra pillows and bedding when adults fall asleep.
When the parent is sleeping normally the risk is less (parent is able to rouse), but when sleep is altered by any means, it is a greater risk. Although not specifically addressed in the co-sleeping guidelines, hypersomnias may increase the risk of co-sleeping because parents may be less able to rouse. After six months the risk of SIDS is greatly decreased, although the SIDS category still covers infant deaths in the first year of life. (Read more HERE.)
According to the American Academy of Pediatrics 2016 recommendations:
“The safest place for an infant to sleep is on a separate sleep surface designed for infants close to the parents’ bed. However, the AAP acknowledges that parents frequently fall asleep while feeding the infant. Evidence suggests that it is less hazardous to fall asleep with the infant in the adult bed than on a sofa or armchair, should the parent fall asleep. It is important to note that a large percentage of infants who die of SIDS are found with their head covered by bedding. Therefore, no pillows, sheets, blankets, or any other items that could obstruct infant breathing or cause overheating should be in the bed. Parents should also follow safe sleep recommendations outlined elsewhere in this statement. Because there is evidence that the risk of bed-sharing is higher with longer duration, if the parent falls asleep while feeding the infant in bed, the infant should be placed back on a separate sleep surface as soon as the parent awakens. …
There are specific circumstances that, in case-control studies and case series, have been shown to substantially increase the risk of SIDS or unintentional injury or death while bed-sharing, and these should be avoided at all times: …
 if parents choose to feed their infants younger than 4 months in bed, they should be especially vigilant to not fall asleep …
 Bed-sharing with someone who is impaired in his or her alertness or ability to arouse because of fatigue or use of sedating medications (eg, certain antidepressants, pain medications) or substances (eg, alcohol, illicit drugs). …”
Reviewed and approved by Hypersomnia Foundation’s Board of Directors and Medical Advisory Board.