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Research and Reality in My Life With Narcolepsy

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My body attacked itself. New research suggests this may be how I developed the chronic neurological condition I have had for as long as I can remember. While it is hard to hear, it is also comforting to have more clues toward answering the ever-present question… why?

Growing up, I was a straight-A student who couldn’t stay awake through art class, and painting was my favorite hobby. At just 13 years old, after about seven years of doctors’ visits and lab tests, I stayed overnight in a sleep facility for a polysomnogram and a daytime nap test called a multiple sleep latency test. Soon after, I learned the name of my condition: narcolepsy.

Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. Due to low awareness of narcolepsy, there is an average of eight to 15 years delay between narcolepsy symptom onset and diagnosis. Yet, Dr. Emmanuel Mignot, M.D., Ph.D., Director of the Center for Sleep Sciences and Medicine at Stanford University, offers a seed of hope for the future of narcolepsy diagnosis. Based on his and other prominent researchers’ recent findings, he states, “Although many small pieces of the puzzle remain to be put in place, the work raises the possibility that blood tests for the diagnosis of narcolepsy will be developed.”

This is exciting news. I wonder how different my life would have been if a blood test for narcolepsy was available when I was looking for a diagnosis. Maybe I would remember more of the childhood I spent sleeping.

Once I started trying treatments, I was awake more. I could read a book without falling asleep and I absorbed stories of exotic places and fascinating people. I enjoyed playing basketball on Saturdays and took up photography. I loved to write colorful stories and poems, and many of them were inspired by my vivid dreams, another symptom of narcolepsy. But often the medication dulled my reality. I felt like was living with a pillow over my head, preventing me from seeing or even thinking clearly. Having a proper diagnosis was not the end of the battle.

Living with narcolepsy became increasingly complex in high school. One day while drawing, my pen started to tremble. I felt my fingers loosening on the pen and watched in disbelief as the pen slowly slid across the page. I realized I couldn’t control that hand, but my arm and shoulder were working fine. As time went on, I experienced this momentary loss of control more, sometimes in my face or my knees, but mostly in my hands.

In addition to excessive sleepiness and vivid dreams, it turns out that I was experiencing a lesser-known but major symptom of narcolepsy called cataplexy. Cataplexy is sudden muscle weakness, often triggered by emotions such as laughter, surprise, or anger. The severity and duration vary from person to person. Luckily for me, my cataplexy is mild, but it is still always with me. Sometimes I go weeks without experiencing it, and other times it’s a daily occurrence.

Current treatments assist with management of narcolepsy symptoms, but are not a cure. The symptoms people with narcolepsy experience vary, and the treatment varies from person to person as well.

It can take many years to find a good combination of treatments and coping strategies. I have tried traditional medicine and also experimented with all kinds of alternative treatments, from diet changes to meditation and exercise. This constant struggle between experiencing symptoms and temporary relief leads me to keep up with the latest research.

Almost 20 years ago, researchers made a huge discovery that the form of narcolepsy I have, called type 1 narcolepsy with cataplexy, is caused by a loss of “hypocretin,” a key neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle. However, what caused the loss of hypocretin in people with narcolepsy remained a mystery. As far back as 2013, there has been research suggesting a connection between the immune system and narcolepsy onset. However, the results were not as definitive as recent findings.

The new research suggests that immune cells called CD4 T-cells confuse specific pieces of the flu virus with hypocretin. While these CD4 T-cells are busy knocking out the flu, they inadvertently knock out about 20,000 hypocretin cells in the brain. So my body might’ve mistakenly attacked itself, leading to the development of my case of narcolepsy.

Unfortunately, once these cells are gone, we currently don’t have any way to replace them. However, as Dr. Mignot stated, “…the fact that researchers are now on their way to developing hypocretin/orexin agonists that will replace the missing molecules in affected patients, promises big change is ahead for all narcolepsy patients.”

Keeping a positive attitude for the future helps me continue living my life with narcolepsy. Until a cure is found, it’s important for people with narcolepsy to find a community of support, raise our voices to help raise awareness, and continue to strive for the life we want to lead.

Research is important. Each piece of research reminds us that we are not alone, that there are professionals working hard to answer the ever-present question why? Their work to better understand the underlying causes of narcolepsy is bringing us closer to improved treatment options and early detection strategies. Proper diagnosis is an important step, but it’s not the last step. In a way it is just the beginning, as each person with narcolepsy then begins on a journey of self-acceptance and finding what works best for them.

Getty image by Antonio Guillem.

Originally published: January 8, 2019
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