You may think that sleep problems are largely a modern-day issue, a result of stress, screen time, or something “toxic” in the environment. But the truth is that sleep disorders have been around for ages. Narcolepsy, a condition that causes excessive daytime sleepiness and other symptoms, was first described in the 1870s.
Today, as many as 200,000 people in the United States have narcolepsy. That makes it a rare disorder. But narcolepsy doctors are not rare. Doctors from a variety of specialties may choose to work in sleep medicine. Evaluation should start with your primary care doctor and often involves referral to a neurologist or pulmonologist who specializes in sleep. Narcolepsy is a neurologic disorder and will require care by a neurologist if you are diagnosed with it.
If you think you may have a sleep disorder like narcolepsy, your job is to build a care team that knows its stuff. Narcolepsy is often misdiagnosed, and it can take a toll on your body and mind even when you get the right diagnosis.
Your First Narcolepsy Care Team
Medical experts agree that if you believe you have a sleeping problem, you should start with a visit to your primary care doctor. Then you may be referred to a sleep specialist.
Primary care doctor. It’s a good idea to start with your regular doctor because so many health conditions cause narcolepsy-like symptoms. For example, sleep apnea is known to cause daytime sleepiness. Seizures can cause cataplexy, which is a loss of control of different muscles (and another common symptom in narcolepsy).
A primary care doctor is in the best position to rule these out while getting a good idea of how your symptoms affect you. It doesn’t matter whether you see a general practitioner, internist, or family medicine doctor. All are qualified to initially size up your sleep and lifestyle habits. You may be asked:
- Are you sleepy during the day?
- Has your partner told you that you gasp when you’re asleep?
- Do you often feel sleep deprived?
Chances are you’ll be referred to a sleep specialist if there are any concerns about a sleep disorder.
Sleep doctor. A sleep doctor is a medical doctor with specialized training in sleep disorders. When you see a sleep doctor for a possible narcolepsy diagnosis, you can expect to receive medical tests during an overnight stay in a sleep lab. This is called a sleep study.
Expanding Your Health Care Circle
The symptoms you have with narcolepsy will determine the types of health professionals you add to your health care team.
Sleep psychologist. Sleep psychologists are sleep doctors trained in various techniques -- like cognitive behavioral therapy -- that can address and improve sleep habits. Your sleep psychologist should have expertise in:
- Normal and disordered sleep
- Sleep physiology
- Sleep cycles
- Sleep changes related to age
- Sleep deprivation
- Sleep regulation
- Cognitive, behavioral, and non‐medication treatments for sleep disorders
Neurologist. You don’t need to see a neurologist for the diagnosis or treatment of narcolepsy. But many leading neurologists do specialize in sleep disorders and work at sleep medicine practices.
ENT (ear, nose, and throat) doctor. ENT doctors can address nasal and airway obstructions. These may cause snoring and sleep apnea. That can lead to excessive daytime sleepiness.
Pulmonologist who focuses on sleep medicine. This is the specialty that performs sleep studies to rule out OSA, restless leg syndrome, etc.
Don’t Dismiss Your Mental Health
When you don’t get enough sleep, it’s hard to be your best self. If you already have mental health conditions, a poor night’s sleep -- over and over again -- may make some people depressed, agitated, or anxious.
Research shows that sleep difficulties are associated with both physical and emotional problems. So you should consider therapy for the benefit of your mental health. Look for a therapist who has familiarity with narcolepsy. And don’t hesitate to ask about their approach to help you decide if they’re a good match for you.