One of the lovely “perks” of living with narcolepsy is realizing that there is not yet much extensive research on the potential side effects of some of the medications we are prescribed. This is especially true for women with narcolepsy who are pregnant. Because of this, I made the decision to quit all my meds, daytime and nighttime, for the extent of my pregnancy and whilst breastfeeding. *Side note: if you can plan out your family a bit and wean from your medications, I would HIGHLY recommend that over quitting them cold turkey…*
When living with narcolepsy is an uphill battle even with medications to manage it, how do you begin to manage it without these medications? Here’s some things that helped me manage during my pregnancies:
- First and foremost, give yourself grace: you likely will NOT have the energy to do all the things you want to do every single day and that is ok!!! Not saying you should accept your fate of being tied to the napping couch 24/7, but do allow yourself some patience and understanding if you simply don’t have the energy to get to that to-do item today.
- Plan out your days as much as possible to allow for your max productivity. This was especially important for me with my first pregnancy when I was still working a rather demanding 8-4 job. I needed to get a nap in somewhere (typically over my lunch break) if I was going to have any hope of accomplishing anything in the afternoon. I also made sure to pack my mid-mornings with my highest priority tasks, because this is when I, personally, was most alert and focused. If you are concerned that you may need more “down time” to recharge than your natural breaks allow, chat with your admin and/or HR team at work. At the end of the day, narcolepsy IS a debilitating condition that requires some accommodations now and then. There’s no shame in asking for that extra assistance!
- Caffeinate with purpose. Thank the good Lord for coffee and caffeine, am I right?! However, before you go chugging a bunch of coffee or sugary drinks, keep in mind that you really are only recommended to have about 200 mg of caffeine per day (about 1, 12-oz cup of coffee), according to The American College of Obstetricians and Gynecologists (ACOG). Now, my high-risk OB said I could up that, given my condition, but please consult with your doctor before making that call! Make the best use of your caffeine and use multiple sources of energy. I would start my day with some energy-inducing supplements and an 8-oz cup of coffee- I started with the “strongest” form of caffeine because I tend to get a sleepy spell about an 1 or so after waking up that makes getting out the door and starting my day really challenging. Some of the supplements my wholistic doc recommended were:
- B12 vitamins
- CoQ10
- Some other alternatives for an afternoon pick-me-up include green and black teas, diet sodas (jury is still out on aspartame usage- do your own research if you’d like!), B12 or other naturally based energy drinks, etc. You can also get another small cup of coffee if that is the level you need! I have found that teas were only strong enough on my “good days” or when I got a good nap in. Avoid those sugary sodas and energy drinks though! They may kickstart you for a short time, but the crash will hit you HARD later. Also, don’t rule out the more natural energy boosters such as eating low carb/sugar meals throughout the day and regular exercise. I swear that I can’t have a “sleep attack” while my body is moving, so I often took a lap or 2 around the office or did some stretches to get myself out of the brain fog funk. Did my coworkers look at me a bit funny sometimes? Maybe, but frequent movement is good for everyone and if it meant the difference between me completing a task or not, I couldn’t have cared less what they thought of me! Additionally, a good fidget can do wonders for keeping your brain and body alert! There are tons on the market now and you can even buy variety packs online to explore what you like. My personal favorite is the “NeeDoh Nice Cube” by Schylling.
- Get a “good” night’s sleep. Why the quotes? Because, let’s be real, when you’re a narcoleptic who’s off their nighttime meds, the sleep quality won’t be stellar. And, if you’re like me, those awful, vivid dreams are going to be inevitable :/ However, I found a few things that really improved the sleep that I was getting:
- Taking supplements such as myoinositol and magnesium. I was also prescribed progesterone with my second pregnancy due to a deficiency, but this had a lovely side effect of helping you fall and stay asleep! Again, chat with your doctor before starting any of these!
- Having a consistent bedtime/wake-up time. I know this can be hard, especially if you already have other little ones that push a lot of household tasks to the end of the day, but as much as you can, create a consistent bedtime routine! Also, do things to tip your body off that it’s approaching bedtime such as diming the lighting in the home, reducing screen time prior to bed, drinking a bedtime tea, doing some gentle stretches, etc. There’s lots of podcasts and blogs that talk about the effect of different types of light on your brain signals for sleep/wake cycles if you’re interested in learning more about that. I recommend:
- When it comes to breastfeeding, have an open conversation with your doctor about what they feel is safe/not safe to take and what you are comfortable with. At the end of the day, there isn’t much research out there to give you definitive answers and you do need to function to be there for your loved ones. I’ll be honest and admit that I only made it about 8 months breastfeeding my son before I knew that I needed to get back on my medications for my own mental wellbeing. There is so much pressure out there for mamas no matter what route you pick- please, please focus on YOU and YOUR individual needs! Narcolepsy and postpartum looks different for everyone. Prioritize your health and well being! After all, you won’t be able to be there for your little one the way you want to if you yourself aren’t cared for and getting some recharge time!
I hope this helps spark some ideas and ease your mind some if your a new, narcoleptic mama! Stay strong and know you are not alone!
Are you a narcoleptic mom? What were some tips and tricks that helped you manage during pregnancy and postpartum? Comment below!