Worries While Having Narcolepsy 

Narcolepsy is a rare condition affecting 1 in 2,000 people in the general population. Due to its rarity, I am not flabbergasted when an individual doesn't know much about narcolepsy.¹

This article lists a few questions that someone with narcolepsy may worry about that the average adult doesn't. I hope this article gives someone without narcolepsy a little glimpse of the mind of someone with narcolepsy.

Will this activity cause an increase in my excessive daytime sleepiness?

Someone with narcolepsy has to think about if certain activities will cause them to become excessively tired.

On average, I experience excessive daytime sleepiness once a day and around the same time. Activities such as working out, eating heavy meals, and stressful events cause me to become tired more than once throughout the day.

Even activities that generally don't affect my wakefulness can easily be compromised by a factor such as the weather. For example, walking my dog typically doesn't make me sleepy; however, walking my dog during a hot summer day certainly causes fatigue.

Is this medication non-drowsy?

Before I was diagnosed with narcolepsy, I had made the mistake of taking regular allergy medicine instead of non-drowsy. I was down for days, it seemed. It completely knocked me out for hours, and it took about 2 days to get rid of the drowsy feeling entirely.

Since that point, I have stressed the importance of only receiving non-drowsy medicine. At doctor appointments, I ask additional questions: "Is this medication non-drowsy? Does this medication clash with my narcolepsy medication in any way?"

When will I be able to get my nap in today?

Whether a person with narcolepsy is medicated or not, most doctors recommend taking a nap or naps throughout the day. Some people follow this guideline and some do not. I do if the time permits. Naps are helpful and allow me to feel recharged. I work full-time as a flight attendant, and there is not always enough time between flights to take a quick 30-minute nap.

Another similar thought would be, "Will my medication allow me to take a nap?" Sometimes my medication does its job too well and does not allow me to take a nap even though I feel I need one.

Will I pass my narcolepsy on to my kids?

Having narcolepsy is tough. Some days, when I am being dramatic, I feel like narcolepsy is the worst disorder in this entire world. Although I think my narcolepsy compared to others on a scale is a 2 out of 5, I think about the possibility of passing narcolepsy on to my children. I wouldn't wish narcolepsy on my worst enemy, let alone my flesh and blood.

It is not confirmed, but my late uncle may have had narcolepsy. I was told he experienced sleep paralysis and slept a lot. My journey consisted of years of misdiagnosis, so if I were to pass this on to my children, at least I would recognize the symptoms and would be able to get them help.

Will I be able to drive that far without getting sleepy?

Before my diagnosis, I did not feel comfortable driving for longer than 45 minutes. With medication, I have a better gauge of how long I have to drive, but there is still the possibility of miscalculations. Fortunately, I have not had any car accidents due to falling asleep at the wheel, but I have had close encounters. If I am alone and become tired, I pull over and wait until my sleep spell is over.

Other everyday worries I have while living with narcolepsy

"I know I am skilled for my job, but will narcolepsy get in the way?"

"When will my next cataplexy episode happen?"

"Will my insurance cover my new unique medication?"

A lot goes on in a person with narcolepsy's head. I hope this article gives a bit more understanding of the daily struggles of narcolepsy.