My Journey With Narcolepsy
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.
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.
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.
Where are you in your narcolepsy diagnosis journey?