Do you find yourself constantly drifting off to sleep during your daily routine activities? Have you ever experienced episodes of muscle weakness triggered by strong emotions, like surprise or excitement? You may have a very serious condition called narcolepsy. Narcolepsy is a disorder that involves the brain's inability to regulate sleep-wake cycles normally. It has affected an estimated 1 in 2,000 people in the U.S., yet it is estimated that more than half of them don't know they have it.
One of these people affected by this disorder is LPGA Golfer Nicole Jeray. This condition has undoubtedly challenged her ability to stay focused while on the golf course. However, she is still managing her symptoms and living her life. She talked to Brandi Walker about how she is going about doing that, how a successful diagnosis has helped maintain her livelihood and why it took five years for her to get an accurate diagnosis.
1. What are the causes of narcolepsy?
Narcolepsy is a sleep disorder that involves the brain's inability to regulate sleep-wake cycles normally. It’s a disease that affects me day and night. I don’t know what caused my disease, but for years I was battling the urge to fall asleep at inappropriate times, like during class, while watching a movie or behind the wheel of a car. In addition to falling asleep often, I started experiencing muscle weakness triggered by strong emotions like surprise, excitement or laughter. This is called cataplexy. Often I would have to divert my attention during these times or sit down until the cataplexy episode passed, but at times the episode was so severe that I would become paralyzed and fall down. My symptoms progressively got worse, and I knew something was wrong with me, but I didn’t know what.
2. Why is it a commonly misunderstood and misdiagnosed condition?
Narcolepsy affects an estimated 1 in 2,000 people in the United States, but it’s estimated that more than half of patients with narcolepsy haven’t been diagnosed. It took me five years and many visits to multiple doctors before I was diagnosed.
3. How have you been managing your symptoms?
I was finally diagnosed with narcolepsy by a specialist after taking a sleep test. Hearing his diagnosis was so comforting after looking for answers for so long. I’ve tried many treatment options over the years and worked with my doctor to find one that is right for me. Every person is different, so it’s important to work closely with your doctor to find what works best for you. The first step is getting the correct diagnosis, so if my symptoms sound familiar, find a sleep specialist near you and ask for a sleep test.
4. Why did it take five years for you to get an accurate diagnosis?
My journey to diagnosis was long and difficult. I endured years struggling with worsening symptoms and many visits to multiple doctors before I was diagnosed. Unfortunately, my story is not unique. Studies have shown it may take 10 years or more for people with narcolepsy to receive a correct diagnosis. It’s estimated that patients see an average of six physicians before receiving a diagnosis of narcolepsy.
5. How has a successful diagnosis helped maintain your livelihood?
I will always have narcolepsy, but since my diagnosis I’ve found ways to manage my symptoms. With lifestyle changes and proper treatment, I can live a happy life and make a living doing what I love – playing golf. Narcolepsy is a part of who I am, but it no longer defines me.
6. What resources are out there for those that think they may have narcolepsy?
If my story sounds similar to you or someone you know, you may need to see a sleep specialist. Visit waymorethantired.com to learn more about narcolepsy. Track your symptoms, find the right sleep specialist and ask for a sleep test. Don’t suffer longer than you have to.