a woman stands on a wing of an airplane and reaches for a bottle of pills balanced on the other wing

Flights, Medication, and Narcolepsy

Traveling has never been something that I enjoy. Well, I enjoy the destination, but the journey getting there sucks. As a child, I often got car sick when sitting in the backseat, especially on the rolling hillsides of Kentucky. As I got older, the struggle I had was to stay awake to drive more than 30 minutes.

Prior to getting diagnosed with narcolepsy, the doctor asked some questions. “Do you have trouble staying awake while driving? What about being a passenger for more than an hour? Do you doze off at a red light?”

I hadn’t thought about that as an issue, as I never drove more than 40 minutes to get across town.

Driving in the dark

Being a teacher means waking up before the sun. After learning that movement in the morning helps me stay alert in the afternoon, I woke up even earlier to hit the gym before work. I would be lying if I said I never drifted off the road while driving one morning.

When it comes to taking a road trip, I make it clear to the group that I won’t be driving much, if at all. I am grateful to be with a man who loves driving, as that allows me to sleep the entire trip.

My first plane ride pre-diagnosis

The first time I traveled by plane was in the summer of 2018, right before my diagnosis. At that time, I didn’t take any medications and narcolepsy wasn’t even in my vocabulary.

The plane ride to Arizona from my home state of Kentucky was about 6 hours with one stop. On the longer leg of the flight, I took some Dramamine to help the motion sickness I was feeling. Thankfully, I didn’t feel a thing...because I was completely knocked out for the entire flight.

Flying post-diagnosis

Since getting diagnosed with narcolepsy, I have only taken 1 flight from Kentucky to Florida. This time, I had a bunch of controlled substances to take with me. I was thankful that my doctor and pharmacy were very clear of the procedures of taking medications on a flight. Both the flight there and back home, there were no issues from TSA with my medications.

An upcoming international trip

7 years ago, my older brother moved to Sweden. He studied composition for his bachelor's degree and started his master's degree in conducting. My brother has been able to visit once a year since he moved, but the year that my family went to visit him, they planned it for the same week I had a conference in Arizona.

This summer, I am finally able to visit him for the first time since he moved.

Preparing my medication supply

Leading up to this trip has been a long process. Obviously, the usual stuff of saving money to buy the tickets and making sure I have plug adapters and luggage hasn’t been too difficult. What has been more challenging is dealing with my doctor, insurance, and pharmacy about my medications.

My current “medicine cocktail” includes fluoxetine, Wakix, modafinil, and Xywav. The latter 2 being extremely monitored and controlled by the pharmacy.

Not as easy process

Knowing that I am going to be gone for almost a month, I need to have enough medication to last me through the trip. I first called the pharmacy to explain my vacation plans.

They explained that I need to call the insurance company about getting something called a “vacation override,” which is a request to have a prescription filled early or for more than a 30- or 90- day supply. The pharmacy also mentioned that in order to get modafinil refilled early, my doctor call must them with a new prescription.

Still waiting

This process has been a lot of bouncing around from doctor to pharmacy, pharmacy to insurance, and so on. As of writing this article, I haven’t heard back from my doctor about getting a new prescription for modafinil, and my flight leaves in 2 days.

It has been helpful to remind myself that even if I didn’t have enough medication to last the whole trip, that doesn’t mean I can’t enjoy my time there!

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