Living with narcolepsy: How Kristen found a name for her condition — and her path forward
(BPT) - Kristen had experienced extreme daytime sleepiness for as long as she could remember. She noticed it the most in the afternoons, especially when sitting in long meetings at work. Her extreme sleepiness made many aspects of her life more challenging.
Kristen had unknowingly been living with narcolepsy for years. Narcolepsy is a rare neurological disorder that can affect a person's daily life and overall well-being. According to the National Institute of Neurological Disorders and Stroke (NINDS), an estimated 165,000 people in the U.S. live with narcolepsy. However, the number is likely much higher because it is often undiagnosed or misdiagnosed as other conditions.
Kristen’s concerns and frustration over the overwhelming sleepiness she felt throughout the day were overlooked until she was finally diagnosed in the summer of 2018. What ultimately led Kristen to her diagnosis was reaching out to a new doctor who had her take the Epworth Sleepiness Scale (ESS). Based on the results from the ESS, the doctor recommended she see a sleep specialist who formally diagnosed Kristen with narcolepsy following a sleep study.
"It's been a blessing to receive a diagnosis. It has allowed me to be gentler to myself, and granted me a new level of understanding, after feeling for so long that I knew that something was going on with me.”
Searching for a treatment
The two most common symptoms of narcolepsy are:
- Excessive daytime sleepiness (EDS): Persistent sleepiness, regardless of how much sleep an individual gets at night.
- Cataplexy: The sudden, brief loss of muscle strength or tone while a person is awake. It is often triggered by strong emotions such as laughter or surprise and can cause the person to collapse completely, but more often affects specific areas of the body such as the hands or eyelids.
"Learning to live with narcolepsy can be difficult, but it doesn’t have to be," said Maggie G. Lavender, MSN, FNP-C, a nurse practitioner specializing in sleep medicine. "It can impact all aspects of your life, from having to plan your day around a nap to other adjustments that may affect relationships, family and career. People living with narcolepsy can work with a healthcare provider on a treatment plan that may include medication to help manage symptoms of narcolepsy and lifestyle modifications to help better manage their day-to-day life.
One treatment Lavender discusses with her patients is WAKIX® (pitolisant) tablets, a first-of-its-kind, once-daily prescription medication that is approved by the U.S. Food and Drug Administration to treat excessive daytime sleepiness or cataplexy in adults with narcolepsy.
Kristen started taking WAKIX in April 2020. She initially became interested in learning more about WAKIX after hearing about it from other people in the narcolepsy community and discovering that it's not a controlled substance. This led her to want to learn more about how it works.
While the way WAKIX works is not fully understood, it is thought that WAKIX reduces EDS or cataplexy by increasing histamine levels in the brain. Histamine is a natural chemical in the brain that works to help you stay awake by increasing brain activity in areas that help you wake up, as well as decreasing brain activity in areas that help you sleep, including areas that paralyze your muscles while you are asleep.
When Kristen met with her healthcare provider, he explained the titration process and how it could take a little bit of time to achieve a response to the medication, and that they would focus on getting the right dosage over time.
“When healthcare professionals prescribe WAKIX, we take our patients through a titration process. We start patients at a low dose and then may increase their dose each week until the right dose for each patient is reached, up to the maximum recommended dose. We also remind patients that WAKIX is not a stimulant and make sure patients understand the common side effects could include insomnia, nausea, or anxiety,” said Lavender. “Although these are not all the possible side effects of WAKIX, it is important for patients to communicate with their healthcare provider about how they are feeling and managing their symptoms."
A few weeks after Kristen was titrated to the dose that was right for her, she noticed incremental shifts in her overall wakefulness, and a decrease in excessive daytime sleepiness in the afternoon. Lavender highlighted that with WAKIX, “individual results may vary and for some patients, it may take up to 8 weeks to achieve a response.”
During a follow-up doctor's appointment after she had been taking WAKIX for a little while, Kristen retook the ESS test and they saw that her score improved.
Living with narcolepsy
While there is no cure for narcolepsy, there are ways to help manage living with narcolepsy. Kristen does several things to help manage her diagnosis, including using time management to structure her day, yoga and exercise to help reduce stress levels, and maintaining a consistent sleep schedule and sleep routine. These lifestyle modifications have made it easier for Kristen to live with narcolepsy while still enjoying her daily life.
If you or someone you know is an adult experiencing EDS or cataplexy with narcolepsy, speak with a healthcare provider to see if WAKIX could be an option. Read more about WAKIX below. To hear more about Kristen's experience living with narcolepsy and how WAKIX became a critical part of her treatment plan, visit WAKIX Personal Stories.
Indications and Usage
WAKIX is a prescription medicine used to treat excessive daytime sleepiness (EDS) or sudden onset of weak or paralyzed muscles (cataplexy) in adults with narcolepsy.
Do not take WAKIX if you are allergic to pitolisant or any ingredient in WAKIX, or if you have severe liver disease.
Tell your healthcare provider about all your medical conditions, including if you have heart rhythm irregularities, were born with a heart condition, or the levels of electrolytes in your blood are too high or too low. WAKIX has an effect on the electrical activity of the heart known as QT/QTc prolongation. Medicines with this effect can lead to disturbances in heart rhythm, which are more likely in patients with risk factors such as certain heart conditions, or when taken in combination with other medicines that affect QT. Tell your healthcare provider about all the other medicines you take.
The risk of QT prolongation may be greater in patients with liver or kidney disease. WAKIX is not recommended in patients with end-stage kidney disease.
The most common side effects seen with WAKIX were insomnia, nausea, and anxiety. Other side effects included headache, upper respiratory infection, musculoskeletal pain, heart rate increased, and decreased appetite. These are not all the possible side effects of WAKIX. Tell your healthcare provider about any side effect that bothers you or that does not go away.
Tell your healthcare provider about all the medicines you take or plan to take, including prescription and over-the-counter medicines. Some medicines can increase the amount of WAKIX that gets into your blood and some medicines can decrease the amount of WAKIX that gets into your blood. The dosage of WAKIX may need to be adjusted if you are taking these medicines.
WAKIX can also decrease the effectiveness of some medicines, including hormonal birth control methods. You should use an alternative non-hormonal birth control method during treatment with WAKIX and for at least 21 days after discontinuation of treatment.
Tell your healthcare provider if you are pregnant or planning to become pregnant. There is a pregnancy exposure registry that monitors pregnancy outcomes in women who are exposed to WAKIX during pregnancy. You are encouraged to enroll in the WAKIX pregnancy registry if you become pregnant while taking WAKIX. To enroll or obtain information from the registry, call 1-800-833-7460.
The safety and effectiveness of WAKIX have not been established in patients less than 18 years of age.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You can also report negative side effects to Harmony Biosciences at 1-800-833-7460.
Please see Full Prescribing Information.
For more information about living with narcolepsy, visit WAKIX.com/Living-With-Narcolepsy.
WAKIX is a registered trademark of Bioprojet Europe, Ltd.
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