My Journey With Narcolepsy

My name is Gabrielle, I am a full-time music teacher living in Kentucky.

I have been diagnosed with narcolepsy since 2018 and I want to educate people about what it is like to live with a sleep disorder and inspire everyone to live amidst their own struggles.

Sleepiness in childhood

I had a very busy childhood - taking piano lessons, joining a year-round swim team, and Girl Scouts. I was generally a sleepy child and my dreams were extremely vivid and real. My bedroom was filled with dream catchers and nightlights. I was always looking forward to nap time during school and was usually the last one to wake up at a sleepover.

Thyroid problems run on both sides of my family, so it wasn’t a surprise when I was diagnosed with hypothyroidism during my freshman year of high school. I was given Synthroid to help regulate my thyroid levels, and in turn, was supposed to help me be more alert.

Every time I would visit the doctor, I tried to describe my constant lethargy. More often than not, I was brushed off and told, "That is typical of a girl your age."

My exhaustion was getting worse

It wasn’t until college that I really started to notice my exhaustion levels getting worse. I was struggling to make my classes on time, if at all. There were several days that I would sleep through my classes whether from napping too long or sleeping through my alarm. I felt like I was constantly fighting to keep focus on everyday tasks, like driving, taking notes, or even listening to someone speak.

I was always surrounded by a thick fog of exhaustion that made it difficult to live a normal life. Many times my favorite professor commented, “Gabrielle, you are the most tired person I’ve ever met!” I visited several doctors to fix my sleepiness, but no matter which medications I tried, nothing helped my overwhelming fatigue.

Starting a new life after college

My boyfriend and I moved in together a year after graduating. I started teaching music in a private school, preschool through 8th grade, and my boyfriend started the police academy. Everything was going so well in my life. I felt like I was finally coming out of the funk I experienced during my college years.

One frightening night

One night, several hours into sleep, I heard the sound of the front door clicking shut. My eyes shot open. I slowed my breathing but didn’t hear any movement. I looked over to my dog who laid in bed with us, she didn’t stir. Maybe I’m just hearing things? I closed my eyes and tried to relax.

Seconds passed when I opened my eyes to someone walking into our bedroom and into the closet. I screamed and shook my boyfriend violently. He shot up in bed and grabbed his gun on the side table, aiming it where I was pointing. My dog sprung out of bed and ran towards the closet. I could feel myself shaking and I thought my heart was going to burst.

Too scared to sleep

He sighed. “Babe, there’s nothing here.” I start tearing up. “B-but, I swear someone walked in here! S-someone is in our closet!” He got up and checked the bedroom, then the rest of the house. He came back and sat next to me, grabbing my hand as I started to sob.

For many weeks following this incident, I didn’t sleep much. These weird “visions” were happening more and more often. My vivid dreams were being fueled with scary images and gory scenes. I often woke up several times through the night, too scared to be sucked back into the terror. I would get up and sit in the dark living room, turn on some Chopin, and stare at the ceiling.

Hypnopompic hallucinations

Months passed until I sought out a local therapist who confirmed that I wasn’t crazy. She explained what I was experiencing was called “hypnopompic hallucinations” -  a vivid, dream-like sensation that someone hears, sees, feels, or smells upon waking up. She recommended I ask my general practitioner for an antidepressant to help the mental rollercoaster I was riding.

Once I visited my GP, I brought up my history of thyroid problems and excessive daytime sleepiness. I explained the toll it had started taking on my life. She recommended me to a sleep specialist, and within 2 months, I was diagnosed with narcolepsy.

Inspiring others and spreading awareness

Over the last few years, I have made many adjustments to aid in fighting my symptoms. I take a nap every day alongside taking stimulants and sleep medications. I have learned to listen to my body and self-advocate without feeling ashamed.

I’ve recently taken to social media to help inspire others to love their bodies in spite of their personal struggles. I plan to continue working each day to spread awareness about this condition and show others “if a person with narcolepsy can accomplish this, you can too.”

How do you educate others about narcolepsy? Join our community and share in the comments below.