Narcolepsy is a complex, chronic sleep disorder that can shake up your daily groove and make you second-guess your day-to-day activities. You wake up feeling like you have slept enough, only to doze off at your desk or behind the wheel. The struggle with the overwhelming urge to sleep day in and day out is no laughing matter. The sleep attacks, along with other disruptive symptoms, not only gnaw away at your productivity, confidence, and well-being; they also put you at risk for serious injuries and life-threatening accidents.
If you suspect that you have narcolepsy, deciding to see a specialist for it is a big step in the right direction. This blog provides you with a basic idea of what can transpire during your visit with a narcolepsy doctor: what questions to expect, what tests to undergo, and what treatments are available to help you regain control of your sleep-wake cycles.
Understanding the Role of a Narcolepsy Specialist
A narcolepsy doctor is a physician trained in sleep medicine, typically a neurologist, pulmonologist, or internist. This healthcare professional possesses in-depth knowledge of sleep physiology and is skilled in differentiating narcolepsy from other health conditions and sleep disorders that have overlapping symptoms, such as obstructive sleep apnea, chronic fatigue syndrome, and hypersomnia.
The role of a narcolepsy doctor is essentially to establish an accurate diagnosis through comprehensive testing and develop an appropriate care plan to help patients achieve stable wakefulness and restorative sleep.
The Initial Consultation
During your first visit, your narcolepsy doctor will conduct a detailed assessment of your sleep and medical history. Be prepared for questions about your symptoms: what they are, when you first noticed them, their duration, and their frequency. Other questions to expect include those regarding your sleep patterns, including how often you nap, when those naps occur, and how many times you wake up each night. Your narcolepsy doctor will also talk to you about your lifestyle and medication history, and whether you have coexisting conditions to get a clear picture of your overall health and identify any factors that can influence your symptoms or diagnosis.
Your narcolepsy doctor may also ask about whether anyone in your family has the condition. Having a relative who has narcolepsy does not necessarily mean you will automatically acquire the condition, but it implies that you are at greater risk. Your doctor will use this information to determine your genetic predisposition to the condition.
Confirming the Diagnosis
To confirm the diagnosis, your doctor may schedule an overnight polysomnography (PSG) followed by a multiple sleep latency test (MSLT) after your initial visit.
- Polysomnography (PSG): This evaluates the quality and quantity of your sleep at night and helps rule out other sleep disorders that have similar symptoms, like hypersomnia.
- Multiple Sleep Latency Test (MSLT): Conducted the day after PSG, the MSLT gauges both the speed at which you drift into slumber in a quiet environment during the day and the speed at which you enter rapid eye movement (REM) sleep. Having an MSL of 8 minutes or less and two or more episodes of sleep-onset REM (SOREMPs) is indicative of narcolepsy.
Your narcolepsy doctor may also perform genetic tests, such as HLA typing and CSF hypocretin testing, if necessary. However, these tests are more invasive and less commonly used in routine clinical practice.
Discussing the Diagnosis and Treatment Options
Once the diagnosis is confirmed, the doctor will explain the type of narcolepsy you have—type 1 (with cataplexy) or type 2 (without cataplexy)—and what it means for treatment. Your doctor will work with you to develop a management plan that consists of the following:
Pharmacological Interventions
Medications are tailored to target your specific symptoms:
- Excessive Daytime Sleepiness (EDS): Medications like modafinil, armodafinil, solriamfetol, or pitolisant help promote wakefulness throughout the day.
- Cataplexy and REM-related symptoms: Sodium oxybate is the gold standard for managing cataplexy and improving nocturnal sleep. Your narcolepsy doctor may also prescribe antidepressants to reduce cataplexy frequency.
The doctor will discuss possible side effects, interactions, and the need for follow-up visits to titrate dosages effectively.
Behavioral and Lifestyle Modifications
Medications alone are rarely sufficient for achieving long-term symptom control and improving the overall quality of life of patients with narcolepsy. The doctor will recommend behavioral strategies and lifestyle modifications to complement your medications and enhance your daily functioning. These may include:
- Scheduling daytime naps at regular intervals
- Following a consistent bedtime and wake time
- Improving your sleep hygiene
- Exercising regularly
- Going outdoors for sun exposure (ideally 30 minutes)
In addition, your narcolepsy doctor may teach you coping strategies for school, work, and driving, such as:
- Using alertness-promoting tools like timers or standing desks
- Moving your station or desk to where you can get natural light
- Asking permission to walk around or stand during discussions or meetings
- Avoiding long periods of sedentary activity
Follow-Up and Ongoing Management
Due to its chronic and complex nature, narcolepsy requires regular monitoring. The doctor will likely recommend that you see them every few months initially, then less frequently as symptoms stabilize. During these visits, the doctor will evaluate treatment efficacy, monitor for side effects, and adjust the plan as needed.
It is not unusual for people living with narcolepsy to have coexisting mental health conditions like depression and anxiety. In such a case, your narcolepsy doctor may coordinate your care with a mental health specialist. They may recommend joining support groups or online communities for empowerment and support.
Narcolepsy Doctor in Austin, TX
Narcolepsy may be a disruptive condition, but with the right care and support, there is hope for remission and a normal and fulfilling life.
If you are searching for a reliable narcolepsy doctor in Austin, TX, come see one of our board-certified pulmonologists here at Austin Pulmonary. With extensive training and experience in sleep medicine, our physicians are highly equipped to provide evidence-based solutions to help you not only keep your symptoms in check but also safeguard your overall health and well-being.
To schedule an appointment with one of our narcolepsy doctors, contact our office near you at (512) 977-0123 (North Austin/Cedar Park) or (512) 441-9799 (South Austin). You may also fill out this secure request form online.
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