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% Who Should Be on Your Narcolepsy Healthcare Team Everyday Health MenuNewslettersSearch Understanding and Managing NarcolepsyNarcolepsy
Who Should Be on Your Narcolepsy Healthcare Team While there is no cure for narcolepsy, these healthcare professionals can help you treat and manage this sleep disorder. By Jessica MigalaMedically Reviewed by Sanjai Sinha, MDReviewed: August 25, 2022Medically ReviewedIn addition to a sleep medicine specialist, your narcolepsy care team can include your primary care physician, a neurologist, and other healthcare providers.Thomas Barwick/Getty ImagesWhether your symptoms are mild or severe, there’s no question that narcolepsy can interfere with your daily life.
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This neurological disorder can cause not only daytime sleepiness but also 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.
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“[But] there’s no ideal drug out there that effectively treats all patients.”
Given this, it’s important to have the best possible treatment team you can. Here’s who you should consider enlisting.
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Your Core Narcolepsy Care Team
When it comes to diagnosing, treating, and managing narcolepsy, consider putting these healthcare professionals on your care team. Sleep medicine physician Narcolepsy, which is estimated to affect 1 in 2,000 people, may not be as common as other sleep disorders, though according to the National Organization for Rare Disorders, those statistics may be too low. “I’ll be the first to say narcolepsy is often under- or misdiagnosed,” says sleep medicine specialist Raj Dasgupta, MD, an associate professor of clinical medicine at Keck School of Medicine at USC in Los Angeles.
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In fact, one review found that narcolepsy tends to go undiagnosed for about 10 to 15 years after a person’s symptoms initially appear. Making things even more complicated, adults and children who have narcolepsy can experience different symptoms, according to Dr. Dasgupta.
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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 Since narcolepsy is a neurological condition, a neurologist — i.e., a doctor trained in diagnosing and treating disorders of the brain and the nervous system — can be an important member of your team.
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Some neurologists are specially trained in sleep medicine, says Dasgupta. Primary care provider (PCP) While a sleep specialist and/or neurologist will likely be the lead physician managing your narcolepsy, they’ll need to have good communication with your PCP.
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“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 medications may need to be changed or adjusted a few times depending on how well they’re working to treat your symptoms or whether they’re causing side effects, and your PCP will need to be updated about any change in treatment. Additional Healthcare Professionals Your Doctor May Recommend
Narcolepsy seems to 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.
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“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.
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Here are some of the health specialists your doctor may recommend. Mental health professional There seems to be a link between narcolepsy and psychiatric disorders such as depression and anxiety, though the relationship isn’t clearly understood yet. “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.
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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.
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And mental health issues such as depression may worsen your narcolepsy symptoms: Depression is frequent in people with narcolepsy, especially those who aren’t being treated for it, and depressive symptoms were associated with narcolepsy severity, according to a November 2020 study published in Neurology. 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.
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Registered dietitian or exercise specialist When people develop narcolepsy, they often experience rapid weight gain, says Thorpy. Children can gain 10 to 40 pounds in a matter of months, and adults can become overweight or obese. This could be because narcolepsy may alter the metabolism, according to the Division of Sleep Medicine at Harvard Medical School in Boston.
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You may be referred to a registered dietitian, who can help you plan healthy, energizing meals, or to a certified personal trainer, who can help you add more physical activity into your day, which can help boost your energy levels and ward off weight gain. Cardiologist People with narcolepsy are predisposed to developing hypertension, says Thorpy.
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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.
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One study, published in Sleep Medicine Reviews in August 2021, found that individuals with type 1 narcolepsy (which features cataplexy, or sudden loss of muscle tone) experienced a lack of blood pressure dipping that normally occurs at night. In addition, disrupted nighttime sleep and excessive daytime sleepiness may increase cardiovascular risk.
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Ear, nose, and throat (ENT) doctor People with narcolepsy can be prone to other sleep problems, including sleep apnea, which can be treated by an ENT. Sleep apnea is marked by brief pauses in breathing throughout the night that disrupt your sleep and can leave you feeling tired during the day, according to the National Sleep Foundation, so treating it effectively may make you more alert.
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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 others who can provide a friendly ear, a helping hand, advice, and other resources.
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Here are a couple of nonmedical people you may want to include. Your loved ones “Your healthcare team doesn’t always have to be made of doctors,” 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.
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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.
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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.
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More in Narcolepsy
9 Lifestyle Tips That Can Help You Manage Narcolepsy Symptoms
The Symptoms and Early Signs of Narcolepsy — and How to Spot Them
9 Common Myths and Misunderstandings About Narcolepsy
4 Narcolepsy Symptoms That Can Impact Your Life — and How to Manage ThemNEWSLETTERS
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