Who Should Be on Your Narcolepsy Healthcare Team?

Whether your symptoms are mild or severe, there’s no question that narcolepsy can interfere with your daily life. This neurological disorder can cause daytime sleepiness as well as hallucinations and cataplexy (sudden muscle weakness), making it more difficult to do everything from driving a car to doing your job.

“Narcolepsy can be very challenging because the symptoms never completely go away, even though we do have medications that can help,” says Michael Thorpy, MD, director of the Sleep-Wake Disorders Center at Montefiore Medical Center in New York City. “[But] there’s no ideal drug out there that effectively treats all patients.”

Given how complex narcolepsy is, you’re likely to have numerous specialists from different disciplines on your team. Some you’ll need to see regularly — others you’ll see only occasionally as issues arise.

Your Core Narcolepsy Care Team

When it comes to diagnosing, treating, and managing narcolepsy, consider putting these healthcare professionals on your care team.

Given how challenging narcolepsy can be to diagnose, a sleep medicine physician will likely be the first person you recruit to your care team — and if you’re happy with their care, you may want to continue seeing them.

Neurologist Because narcolepsy is a neurological condition, a neurologist — a doctor trained in diagnosing and treating disorders of the brain and the nervous system — can be an important member of your team. Some neurologists are specially trained in sleep medicine, says Dr. Dasgupta.

Primary Care Provider (PCP) While a sleep specialist or neurologist will likely be the lead physician managing your narcolepsy, they’ll need to have good communication with your PCP. “Your PCP needs to be aware of medications that are being prescribed [for you],” says Clete Kushida, MD, PhD, medical director of the Stanford Sleep Medicine Center in Redwood City, California. Your PCP should keep track of which sleep medications have been prescribed to make sure they won’t interact with any other meds you may be taking and to be able to track potential side effects. Your PCP should be updated whenever your medication regimen is changed.

Additional Healthcare Professionals Your Doctor May Recommend

Narcolepsy may be connected to a number of other health problems, including depression and high blood pressure, and your doctor may suggest that you incorporate other health professionals on your team to treat these related conditions. “The sleep specialist is, in most cases, the best individual to make the decision as to whether these conditions are directly or indirectly related to narcolepsy,” says Dr. Kushida.

Here are some of the health specialists your doctor may recommend:

“Many symptoms of narcolepsy overlap with those of mood disorders, including fatigue, social isolation, and difficulty interacting with peers and family members — all of which can contribute to depressive feelings,” says Dr. Thorpy. These symptoms, coupled with neurochemical changes and the disruption narcolepsy can have on your daily life, may also increase risk for depression or anxiety.

What’s more, medications that treat narcolepsy can interact with depression and anxiety medications; they can also worsen your mental health condition, says Kushida. For that reason, your sleep specialist and psychiatrist should also regularly communicate.

Cardiologist People with narcolepsy are predisposed to developing hypertension, says Thorpy. Some of the medications that treat narcolepsy are stimulants that work to help you stay awake during the day; these can raise blood pressure. When combined with other factors, such as weight gain, this can exacerbate potential heart problems.

If your doctor suspects you have sleep apnea, you’ll likely participate in a sleep study (polysomnography), which is a test that diagnoses sleep disorders. From there, your doctor can advise on the best course of treatment, which might be a continuous positive airway pressure (CPAP) machine, a referral to a dentist for an oral appliance to help keep your airway open, or a referral to a surgeon for upper airway surgery, says Kushida.

Other Sources of Support

You can also get invaluable support from people who can provide a friendly ear, a helping hand, advice, and other resources.

Your Loved Ones Your care team can include more than medical specialists, says Dasgupta. “Family or friends should be right there with you.” Bring a trusted loved one, such as a parent, partner, or best friend, to your doctor’s appointment. They can help advocate for you, ask questions that might slip your mind, and really understand this disease, its symptoms, and the side effects of medications.

Narcolepsy Support Groups You may not personally know anyone else who has narcolepsy, but you’re not alone. “Many of my patients have really benefited from narcolepsy support groups,” says Dasgupta. There you can compare notes about treatments, side effects, and lifestyle hacks that have really made a difference. Check out the Narcolepsy Network to find a support group near you.