Narcolepsy is a rare sleep disorder that makes it hard for you to stay awake during the day. This excessive daytime sleepiness is often the first symptom of narcolepsy.
About 200,000 people in the U.S. have narcolepsy, but only 20% of them have type 1. Type 1 narcolepsy often comes with cataplexy – short episodes of muscle weakness. Strong emotions like anger, laughter, or surprise can trigger these attacks.
Because narcolepsy can mimic other medical conditions, it's often misdiagnosed. And your diagnosis can be delayed.
And without treatment, your condition can have a major socioeconomic impact. Find out the things that can play a role in delayed diagnosis and treatment of narcolepsy type 1.
Know the Signs of Narcolepsy Type 1
With narcolepsy type 1, your brain doesn't make enough orexin. It's a chemical in your brain that controls your sleep and wake cycles. And lower orexin levels can make staying awake during the day harder.
And children may have trouble focusing, sudden weight gain, or they may start puberty early. Knowing the symptoms can help you identify narcolepsy type 1 earlier.
Diagnosis of Narcolepsy Type 1
Being able to access health care is key for a timely diagnosis.
Your doctor may order a:
Sleep study (polysomnogram): This nightlong test records your brain waves, oxygen levels, heart rate, breathing, and body movements while you sleep.
Multiple sleep latency test: This is a full-day study after your sleep study to measure how quickly you fall asleep during the day, in a quiet place.
Maintenance of wakefulness test: This is another full-day test. It measures how alert you are throughout the day.
A portable sleep monitoring test can also be an option. You and your doctor will talk about the best test for your health.
One study reported that knowing the signs of cataplexy can help you get diagnosed faster.
In children, cataplexy attacks can look like acting out, seeking attention, or aggressive behavior. Sometimes, these symptoms can be misdiagnosed as other medical conditions.
Socioeconomic Factors and Narcolepsy
Narcolepsy is often misdiagnosed. And the condition usually isn't diagnosed until adulthood, delaying treatment. This can have a major socioeconomic impact on your life.
Narcolepsy is a lifelong condition that impacts your brain. You're likely extremely tired all the time. And you're probably not getting a full night's rest.
Without sleep, you may have a lower sex drive or harder time focusing during the day. These things can impact your personal and social life.
Narcolepsy is often misdiagnosed
Narcolepsy often shows up during childhood. It can have different symptoms, and your symptoms can look like other medical problems. In fact, most people with narcolepsy report being misdiagnosed at least once.
Doctors may also consider more common medical conditions before narcolepsy. That's because narcolepsy type 1 is very rare – only 0.03% of the population has it.
Your narcolepsy symptoms are usually misdiagnosed as:
- Attention deficit hyperactivity disorder (ADHD)
- Depression
- Anxiety
- Hypothyroidism
- Fibromyalgia
- Sleep apnea
A misdiagnosis can also impact your psychological and emotional well-being. You can take medications or have treatments that you don't need.
And it can affect how well you perform in school.
Delayed diagnosis
Symptoms of narcolepsy can start when you're about 16 years old. But it's often not diagnosed until you're an adult. Because sleep is not something your doctor always asks about at your regular checkups, it can get missed.
It can take more than 10 years before you're diagnosed. About a third of people with narcolepsy report seeing five or more specialists before getting the right diagnosis.
People with narcolepsy report that daily activities can be harder to do because of their condition.
Work and school
Delayed treatment for narcolepsy can lower your quality of life. Children and teens may have more trouble in school. Your grades may fall behind, and it can be harder to stay awake or concentrate.
You may not be able to finish your degree or hold a job. And narcolepsy can take an emotional and financial toll.
Some people with narcolepsy type 1 report that the condition:
- Made work harder
- Interfered with travel and social life
- Limited career choices
- Caused feelings of isolation, depression, and anxiety
Risk of injury and medical costs
Narcolepsy can make it harder to focus during the day. The condition can also lead to a higher risk of accidents and more medical costs.
This can raise your risk of injury, and you may:
- Cut yourself while preparing a meal
- Take the wrong medication
- Miss a step on the stairs
- Have an accident while driving your car because you're so tired
Over time, your condition can get worse if it's not treated. And new problems can impact your quality of life. With narcolepsy, you can have a higher risk for developing certain medical conditions and problems.
Is Narcolepsy Type 1 Different for African Americans?
Narcolepsy symptoms can be different for everyone. And one study pointed out key differences for African Americans who have narcolepsy type 1.
Tell your doctor how your fatigue impacts your life. If your doctor still isn't listening, don't give up. Find a doctor who will answer your questions and take you seriously.
Removing the Roadblocks
Learning about narcolepsy type 1 is a great first step. The more you know about your condition, the better you can advocate for yourself or your child.
Talk to your doctor about treatment for your narcolepsy. Although there isn't a cure, with treatment, you can regain most of your daily function.
Show Sources
Photo Credit: Juanmonino/Getty Images
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