Living with narcolepsy: One woman’s journey with this rare disorder
(BPT) - Imagine feeling so tired during the day that you struggle to stay awake and alert, constantly feeling the need for sleep — often to the point that it interrupts your day-to-day life physically, emotionally and socially. This persistent feeling of tiredness during the day is excessive daytime sleepiness and it’s the main symptom of narcolepsy, a rare neurological disorder.
North Carolina-native, Lindsey was diagnosed with narcolepsy in 2019 after experiencing excessive daytime sleepiness, among other symptoms, for many years prior to her official diagnosis.
“Before treatment I would have described my excessive daytime sleepiness as just unbearable,” said Lindsey. “Regardless of how much I fought through, there were points in the day that I was not able to push through, and I had to take that time to rest.”
Lindsey’s excessive daytime sleepiness was making it difficult for her to do the everyday things she wanted and needed to do, like working, maintaining social engagements with friends, and even baking, one of her favorite hobbies.
An underdiagnosed disorder
According to the National Institutes of Health (NIH), narcolepsy affects approximately 165,000 people in the United States. Many people who may be living with narcolepsy, however, have not been diagnosed. For those who have, the diagnosis is often complicated and delayed, sometimes taking more than 10 years and coupled with misdiagnoses along the way.
“More than 50% of people living with narcolepsy are initially misdiagnosed, with symptoms often misattributed to other conditions like depression, insomnia or ADHD,” said Dr. Chris Winter, board-certified neurologist and sleep specialist in Charlottesville, VA. “Beyond that, many who are living with narcolepsy may assume everyone else feels as exhausted as they do, or they may hear misconceptions about narcolepsy, leading them to avoid seeking help from a healthcare professional.”
Narcolepsy can have a debilitating impact beyond excessive daytime sleepiness, with many facing the stigma of being lazy or antisocial due to low energy levels, according to Dr. Winter. “It can also be really isolating because you have to budget your energy and often miss out on social events, which is why narcolepsy can be linked to depression.”
In addition to excessive daytime sleepiness, people living with narcolepsy may also experience cataplexy, described by the NIH as a 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 may only affect parts of the body such as the hands or eyelids.
Support for people living with narcolepsy
After being diagnosed with narcolepsy, Lindsey looked for approaches to help manage her symptoms. This included joining support groups for people living with narcolepsy and participating in advocacy events and programs to learn more about her condition, and to connect with others who had similar experiences.
“I attend a weekly support group, and I get a lot of support from that,” said Lindsey. “It’s nice being with people who actually get it.”
Lindsey’s support group also helped lead her to WAKIX® (pitolisant) tablets, a medication that has become an integral part of her treatment plan. After hearing people in her support group share their experiences, Lindsey asked her doctor about WAKIX.
WAKIX is a first-of-its-kind once-daily tablet taken first thing in the morning, that is FDA approved to treat excessive daytime sleepiness or cataplexy in adults with narcolepsy.
“There were a few things about WAKIX that caught my attention that I learned through doing my research, such as it increases histamine in the brain and also WAKIX is not a stimulant,” explained Lindsey.
According to Dr. Winter, although the way that WAKIX works is not fully understood, it is thought to work through histamine, a natural chemical in the brain. WAKIX increases histamine levels in the brain, which promotes wakefulness.
Lindsey and her doctor talked about what to expect when starting WAKIX. “My doctor explained that for some people it may take up to eight weeks to achieve a response, so it would take time for me to notice if WAKIX was working, and to find the right dose. He told me that every person living with narcolepsy was different and individual results may vary, and we discussed the possible side effects of WAKIX, and that the most common ones include nausea, insomnia and anxiety.”
“We know from the clinical trials of adults with narcolepsy that these are the common side effects for WAKIX. These are not all the possible side effects, so patients should speak with their healthcare provider to determine if WAKIX is the right choice for them,” said Dr. Winter.
After being on WAKIX for about eight or nine weeks, Lindsey’s husband pointed out that she was not taking as many naps. Lindsey also noticed that she needed fewer naps than she used to and was feeling more awake during the day.
Beyond her treatment plan, Lindsey’s techniques for helping to manage her symptoms involve several lifestyle changes she has found helpful, including:
- Healthy eating and avoiding processed foods
- Journaling and other stress reduction activities
- Getting adequate sunlight during the day
“Narcolepsy doesn’t have to completely disrupt your life,” said Lindsey. “It’s not an easy disorder to live with but you don’t have to feel alone. There are still ways to help manage and thrive with it and WAKIX gave me the wakefulness that I was looking for.”
Read more about WAKIX below and speak with a healthcare provider to see if WAKIX could be an option for you, just as Lindsey did. And to hear more about Lindsey's experience, 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.
Important Safety Information
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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