Narcolepsy and Pregnancy: My Story

This post has been a long time coming! After presenting this week at #SLEEP2022 as part of the panel “Narcolepsy and Pregnancy: Elevating Patient and Clinician Voices to Explore Best Practices and Shared Decision-Making”, I think I finally have things organized in my head in a way that is relatively easily digestible – so what better time to share the full shebang?!

Note: You can find my first post on prepping for pregnancy with narcolepsy here and you can find Project Sleep’s Narcolepsy Nerd Alert featuring links to the Facebook live panel discussion and the narcolepsy and pregnancy toolkit here.

Preconception

My journey to Hadley started with finding a neurologist who was comfortable treating narcolepsy patients throughout pregnancy and postpartum. I live in the NYC area and am lucky to have access to one of the leading neurologists in this area who accepted me as a new patient back in 2018 when we were in the information-gathering phase.

We also knew around this time that we wanted to get a dog, and were exploring our options for a service dog for narcolepsy/cataplexy. We chose our pup Olive, an Australian shepherd / poodle mix, because we wanted a smart, sensitive, biddable dog who was easily trainable while also having the endurance for hiking and backpacking. At the time we were looking into breeders, I was running Lysande, an accessories brand, and having a dog who would likely be non shedding was important. We found our breeder, got on the waiting list, and…waited. We were matched with a dog in May 2019 (about 6 months after getting on the list) and totally fell in love with Olive. She did a board and train program in January of 2020 that was focused on public access training and we’ve worked with our trainer ever since.

Once we were ready to get started at the beginning of 2020 (hah!), I stopped birth control and armodafinil and started tracking my ovulation. I had aspirations to stop taking Xyrem when I started ovulating so once I saw the smiley face on my ovulation stick, I cut it out. Unfortunately, I had a disastrous 3 days where I struggled to sleep at night, slept through most of the day, had terrifying hallucinations, and had cataplexy that was totally unchecked. This landed me in an appointment with my neurologist having a frank conversation about what was going to be realistic for me. 

Darrell came to this virtual appointment and I think it was helpful for my neurologist to see me not just as a patient but as part of a family unit. It was important to me and Darrell that decisions about meds be made as a team so that neither one of us was holding all of the responsibility. We both wanted to be comfortable with the medication I was taking and this gave Darrell the opportunity to ask questions without putting the onus on me to relay messages back and forth. It was a balancing act – making sure that my narcolepsy was managed and that our future child was safe – and we came up with a plan that we all felt comfortable with.  At the end of the appointment, I decided to go back on Xyrem at a lower dose. While I originally took 9 grams nightly, I went down to 6.5 grams nightly.

It took us about a year to get pregnant, during which time we had a chemical pregnancy, so I’m glad that I had medication during that time. I was concerned about my ability to work on reduced meds and as we were family planning we had taken into account that I might be a sleepy potato. 

Ultimately, I found that I was more functional than I anticipated, but still needed lots of flexibility. I ended up tutoring math and economics throughout preconception and pregnancy and was able to put together a schedule that worked really well for me and my narcolepsy. What that looked like was I tutored first thing in the morning from 8 to 10, I came home and slept from about 11 to 2 and then I tutored again in the evenings. I was incredibly sleepy without stimulants and on reduced oxybate and having this flexible schedule helped me maintain my sense of self by contributing to my family and doing something I excel at, while also having the flexibility I needed to generally…exist. 

Pregnancy

Once confirmed, I took two doses of Xyrem every night throughout my entire pregnancy, as well as medication for OCD. I received pushback from my obstetrician who wanted me to be off of my meds but I explained my decisions to her and was able to get her on board. My neurologist was prepared to advocate for me with her but it didn’t come to that. 

Labor and Delivery

As we came to the end of my pregnancy I wanted a solid plan in place for my labor and delivery. I’m an athlete and I viewed  labor as kind of a marathon – like a very physical endurance activity that I need to be emotionally and physically prepared for. I needed fuel, hydration, and sleep. My neurologist and I decided that I could take Xyrem up until I was in active labor which was helpful because it was exactly 48 hours between when I was induced and when Hadley was born.  

The hospital pharmacist wanted control of my meds but, as you can imagine, had never heard of Xyrem so it was on me to explain the dosing and advocate for my access to it. This confusion on his part wasn’t a shock to me but it’s something I like to tell my friends so that they’re mentally prepared for those conversations. 

My birth plan was to leave the hospital healthy with Hadley. I knew I wanted a vaginal birth but I also knew that if something were to happen and I needed a c section, that was going to be how it went. I planned for an epidural so that I could sleep while in labor and I need to shout out to the women in the “Pregnancy and Parenting with Narcolepsy” support group who have had vaginal births both with and without epidurals for sharing their experience so that I could figure out what was going to be best for me. 

With respect to cataplexy, I know that my triggers are laughter and surprise so I wasn’t concerned about how that would impact me at all during labor. I wasn’t worried about not having the strength to do things, it really was a non-issue. I had to explain this to my OB and convince her to trust me and my experience of my symptoms. My main focus was on doing what I could to mitigate the symptom of excessive daytime sleepiness.

I had a vaginal delivery and a healthy recovery, thanks in large part I think to both Xyrem and my epidural for allowing me to rest. I am also really grateful to my medical team for having the hard conversations around meds and narcolepsy and collaborating with me in this shared decision making process.

Postpartum

Darrell and I spent our pregnancy preparing for Hadley’s arrival – for how it was going to change us as individuals, as a couple, and as a family. Below our same of the ways we did that…

Meds: In conversations with my neurologist, he prepared me to expect the unexpected with my narcolepsy symptoms both during pregnancy and postpartum. He suggested that hormonal fluctuations could impact my narcolepsy symptoms for better or worse and what I found was that I was able to be off of all of my narcolepsy medications postpartum for a few weeks, and still be a fully functional human. Something that was unfathomable to me when I had tried to stop during preconception. 

After a few weeks we talked about how I could take oxybate in conjunction with breastfeeding. While my OB suggested it would be nearly impossible to stay on meds and breastfeed, I knew I could time Hadley’s feedings to reduce her exposure to oxybate in breastmilk and I started taking Xyrem once a night. We worked with our pragmatic lactation consultant, recommended by our pediatrician, to figure out our routine.

A few months later, Darrell (who had an incredible 9 weeks of leave as well as the ability to work from home once his leave was over) saw how sleepy I was and encouraged me to add in a second dose of Xyrem once Hadley was sleeping through the night. We sleep trained Hadley at 5 months so that I could go back on two doses of oxybate nightly.

In addition to oxybate I took medication for OCD throughout my entire pregnancy which I’ve continued postpartum. Having access to narcolepsy and mental health meds helped me be at sort of a baseline level of functionality. It has really been an ongoing process working with my neurologist to figure out which medications and dosages will be the most beneficial at various stages over the last 2.5 years. Even now as Hadley is weaning from breastfeeding, I find myself adjusting my Xyrem dose every few weeks to help with my wakefulness.

There are a number of non-pharmacological things that we did that helped us transition into postpartum with relative ease.

1. Lactation consultant: In addition to advocating for me with my OB, having our IBCLC’s literal hands on support from Day 1 meant Hadley learned how to go seamlessly between bottle and boob. Our IBCLC was quick to dispel the myth of nipple confusion and taught Darrell how to bottle feed in a way that would support her breastfeeding. Having this flexibility meant that I got to bond with Hadley through breastfeeding and Darrell got to bond with her through bottle feeding…while I took breaks to nap. 🥳 This isn’t to say it was all roses. We met with our lactation consultant 4-5 times in Hadley’s first 2 months and things were particularly rough in the beginning when I experienced incredibly painful engorgement while my milk came in. I credit our IBCLC with tailoring a pumping routine to meet our needs and get me through the worst of it.

2. Couples counseling: We started couples counseling during pregnancy to help us turn this transitional time into a period of growth and connection. And on a practical level, our couples counselor played a pivotal role in our success. Two weeks after Hadley was born, we had both been waking up for every single night feeding. But around this time we also started feeling comfortable having Hadley by ourselves so our counselor helped us take inventory of our wakeful periods – D’s most wakeful periods, my most wakeful periods – and we came up with a schedule that allowed both of us to sleep. 
   
3. Minimalism: okay maybe not textbook minimalism, but we got rid of an incredible amount of stuff, got very thoughtful about how we wanted to spend time as a family, and simplified our physical lives so that we could prioritize our adventure. As you know, narcolepsy is a disorder that robs us of time. All of this streamlining before Hadley was born allowed us to focus on what felt most important to us, instead of being bogged down by clutter.
   
4. List of people I could call for support: This was literally just a list of people hanging on the fridge. It included everybody in my network who lives nearby – from people I love and feel comfortable calling at a moment’s notice to those I really didn’t want to call but who I knew I could begrudgingly rely on in an emergency. Having a visible reminder of my community gave me a sense of safety and security because I knew that if I was on the verge of a sleep attack or something emergent were to happen, I knew where to go.
   
5. Freezer meals: Throughout my pregnancy I would double recipes when I was cooking foods I loved and stash the extra in the freezer. We don’t live near any family and having my favorite nourishing meals easily available in the early days was a small thing that went a long way in making me feel like myself.
   
6. Pregnancy and Parenting with Narcolepsy support group: Probably the single biggest thing for my happiness aside from meds was being able to talk with other women who had lived experience in this thing that I was going through. Women who had taken/not taken meds, who had vaginal births and c-sections, who breastfed while managing medication or formula fed, etc. While it wasn’t a cakewalk for them by any means I was able to see that going into this journey with a mindset of flexibility led to incredible success. 

Narcolepsy takes away so much certainty in life. I don’t always know what my sleep needs are going to be on a daily basis and because of that I try to find certainty in other areas. You know, like trying to plan out my pregnancy and postpartum to the day. Can you tell I had a lot of anxiety not knowing exactly what the future was going to hold? I wish I could go back in time, give myself a hug, and say “you’re capable of handling really difficult situations and you’ve been doing this for a really long time. While uncertainty is tough, you’re tougher.”

So I guess what I would say to you, wherever you are on your journey is

You’re capable of handling really difficult situations and you’ve been doing this for a really long time. While uncertainty is tough, you’re tougher.

If you made it this far, thank you so much for reading! I’d love to hear any questions, comments, thoughts, etc.

Photo cred: Ash and Pine Photo Co