Narcolepsy Medication and Missing Meals

The first stimulant I was introduced to was Modafinil, and as much as I used to view it as one of the best and most memorable moments, I now realize how clueless I actually was.

Little information about medications

You see, in my opinion, one of the biggest problems we have as newly-diagnosed patients is the lack of information and guidance that we receive relative to living with the condition itself and about what to expect with the medication we’re given.

You’re given a small box with a set row of pills, and a tiny folded-up leaflet inside. I can’t speak for everyone, but that was about as much as I got following my diagnosis.

When it comes to narcolepsy type 1, we may be provided with a stimulant to promote wakefulness and maybe an antidepressant to treat the cataplexy attacks.

Potential side effect: a lack of appetite

If you look at all the side effects of these types of medications, you may feel somewhat shocked. Not only because there are so many, but because some can be quite extreme, too.

I never thought that out of all of them, the one that would continue to impact my physical health was the lack of appetite. As the days went by, slowly slowly, meals became mere afterthoughts, eating merely a task to be checked off the list.

Narcolepsy medication for me has this uncanny ability to veil hunger, to the extent where the act of eating feels like a chore, a robotic necessity rather than a pleasurable experience.

Changing medications

After 3 months, I had to change my medication from Modafinil to Ritalin because the Modafinil simply wasn’t working anymore. I found myself falling asleep during work hours again and started suffering anxiety attacks whenever I had an important work meeting.

And I definitely noticed that with the return of my symptoms, so came the return of my appetite. However, Ritalin reversed everything in an instant.

Just like Modafinil, at first I was extremely relieved that my symptoms were under control again…so much so that the lack of appetite didn’t even cross my mind anymore. I was simply happy to feel “normal” again, and to top things off, I realized that if I didn’t eat then my head felt much clearer during the day!

The risks of not eating enough

But here's the catch—not eating enough isn't just a matter of missed meals. It's a silent assailant that impacts us physically and mentally. Physically, it can deprive our bodies of essential nutrients, potentially leading to fatigue, weakened immunity, and even hair loss. Mentally, it can change our mood, affecting concentration and amplifying the already intricate dance between narcolepsy's symptoms and daily functionality.¹

Before I knew it, I wouldn’t realize that I hadn’t eaten until I was going to bed and finally stopped to feel the emptiness inside my stomach. Suddenly, even my friends were starting to comment about how much weight I had lost. I don’t think I even noticed at the time.

For those reasons, and many many others, it wasn't long after that that I had no choice but to stop taking stimulants altogether for a long while.

What I've learned

Looking back now, I can’t believe how quickly and subtly taking medications altered my lifestyle, which could have had serious long-term implications on my health.

I’m now back on stimulants and still struggle somewhat with my appetite. But now that I know the importance of maintaining a healthy diet, I do my best to consciously make an effort to eat even when it’s the last thing I feel like doing.

It’s important to eat something…even if it’s just a piece of fruit.

Living with narcolepsy is more than just trying to stay awake or having sleep paralysis. It’s about trying to constantly juggle 10 balls up in the air all at once every single day of our lives, and praying that they won't all fall down on us at once.