Advocating for Myself: My Life with Narcolepsy
Sarah was compensated by Avadel to tell her story. Individual results may vary.
When I was a teenager, I was deeply involved in school, took art classes, figure-skated, sang in choir, won writing competitions, and served as vice president of a volunteer club supporting kids with developmental and intellectual disabilities. I was busy – and I loved it.
But around age 15, everything started to shift. I began having vivid dreams and nightmares, waking up multiple times each night, and becoming increasingly tired during the day. I didn’t understand what was happening. At first, I tried to brush it off – Don’t all teenagers get tired? I told myself. But it soon became clear that my tiredness wasn’t like everyone else’s. I was constantly sleepy. Staying awake in class felt nearly impossible. I often had to leave school early or head to the nurse’s office just to nap. It was frustrating and often isolating.
When I first sought answers about my sleepiness, I was diagnosed with depression and anxiety, and my sleep issues were attributed to that. I later underwent sleep studies, but none of the tests provided the answers doctors needed for a clear diagnosis. Still, I couldn’t shake the feeling that something deeper was being overlooked.
As my sleepiness persisted through high school and through college, I kept searching for answers on my own, determined to find out what was really going on. Finally, at 21, I found a sleep specialist who recognized that my challenges might be more than just mental health. Years after my sleep issues began, I finally received a narcolepsy diagnosis.
Treatment Challenges Following the Long-Awaited Diagnosis
This sleep specialist did something wonderful – he listened. I described all my symptoms, and he immediately ordered a sleep study and took me off all my current treatments so we could properly evaluate what was really going on. Finally, I was able to take a multiple sleep latency test (MSLT), and this time, the results confirmed what I had suspected all along: I had narcolepsy. While I didn’t want this diagnosis, it was an answer, and it opened the door to finding a treatment that could help me.
With the diagnosis in hand, my doctor prescribed medication to help manage my symptoms, but new challenges soon arose with the treatment plan.
While the medication helped with my daytime sleepiness when taken as prescribed, sticking to the schedule wasn’t always easy. The medication was twice-nightly—one dose at bedtime, and a second dose 2.5 to 4 hours later in the night. Taking the second dose was a challenge for me.
Setting two alarms, one in the middle of the night for my second dose, was inconvenient, and I worried it would disturb my partner. Sometimes, I’d sleep through the alarm and miss the dose altogether, making my daytime sleepiness even worse the next day.
Discovering a New Option
As someone living with a rare disease, I’m active in various online communities where patients share their experiences, discuss diagnoses, and offer support. One day, I came across a post about a once-at-bedtime medication for narcolepsy called LUMRYZ™ (sodium oxybate). LUMRYZ for extended-release oral suspension (CIII), is a prescription medicine for the treatment of cataplexy or excessive daytime sleepiness (EDS) in patients 7 years of age and older with narcolepsy.
After reading about it, I felt hopeful that this could be a good fit for managing my symptoms. I decided to talk to my sleep specialist about the possibility of switching treatments. He was already familiar with LUMRYZ and had prescribed it to other patients.
After discussing important information about safety and that the most common side effects include nausea, dizziness, bedwetting, headache, and vomiting, we decided to give it a try. I was relieved to finally have medication that didn’t require waking up in the middle of the night.
A New Lease on Life
With once-at-bedtime LUMRYZ, my narcolepsy symptoms have improved. Before starting it, my excessive daytime sleepiness made it hard to get through the day and I struggled to stay awake, especially in the mornings. Because I am less tired, I can even go to the gym before school.
With improvements in my excessive daytime sleepiness, I can enjoy coffee or tea for pleasure rather than needing the caffeine just to get by and can meet with family and friends for lunch instead of searching for a place to sleep midday.
Best of all, my day no longer revolves around when I can take my next nap. Because I’m less sleepy during the day, my focus is on what truly matters—my social work studies and spending quality time with my loved ones.
Becoming My Own Advocate
Looking back, I wish more people understood the connection between excessive daytime sleepiness and narcolepsy. Many people mistakenly attribute poor sleeping to stress or just being a teenager, but narcolepsy is a chronic condition that impacts one’s life both day and night.
As narcolepsy is often misdiagnosed, for some, it can take years – or even more than a decade – to receive an accurate diagnosis. If there was greater awareness of the symptoms of narcolepsy, I believe more people would get the correct diagnosis, and proper treatment, sooner.
If you’re struggling with your sleep health, don’t hesitate to advocate for yourself. Keep searching for a doctor who listens, be open about your symptoms, and ask about sleep testing and treatment options.
Narcolepsy is part of my life, but it doesn’t define me. With the right treatment and support, things have improved – and there’s hope they can for you too.
INDICATIONS
LUMRYZ (sodium oxybate) for extended-release oral suspension is a prescription medicine used to treat the following symptoms in patients 7 years of age and older with narcolepsy:
- sudden onset of weak or paralyzed muscles (cataplexy)
- a 1-excessive daytime sleepiness (EDS)
IMPORTANT SAFETY INFORMATION
Do not take LUMRYZ if you take or your child takes other sleep medicines or sedatives (medicines that cause sleepiness), drink alcohol, or have a rare problem called succinic semialdehyde dehydrogenase deficiency.
Keep LUMRYZ in a safe place to prevent abuse and misuse. Selling or giving away LUMRYZ may harm others and is against the law. Tell your doctor if you or your child have ever abused or been dependent on alcohol, prescription medicines, or street drugs.
Anyone who takes LUMRYZ should not do anything that requires them to be fully awake or is dangerous, including driving a car, using heavy machinery, or flying an airplane, for at least six (6) hours after taking LUMRYZ. Those activities should not be done until you know how LUMRYZ affects you.
Falling asleep quickly, including while standing or while getting up from the bed, has led to falls with injuries that have required some people to be hospitalized.
LUMRYZ can cause serious side effects, including the following:
- Breathing problems, including slower breathing, trouble breathing, and/or short periods of not breathing while sleeping (eg, sleep apnea). People who already have breathing or lung problems have a higher chance of having breathing problems when they take LUMRYZ.
- Mental health problems, including confusion, seeing or hearing things that are not real (hallucinations), unusual or disturbing thoughts (abnormal thinking), feeling anxious or upset, depression, thoughts of killing yourself or trying to kill yourself, increased tiredness, feelings of guilt or worthlessness, and difficulty concentrating. Tell your doctor if you or your child have or had depression or have tried to harm yourself. Call your doctor right away if you or your child have symptoms of mental health problems or a change in weight or appetite.
- Sleepwalking. Sleepwalking can cause injuries. Call your doctor if you or your child start sleepwalking.
Tell your doctor if you or your child are on a salt-restricted diet or have high blood pressure, heart failure, or kidney problems. LUMRYZ contains a lot of sodium (salt) and may not be right for you.
The most common side effects of LUMRYZ in adults include nausea, dizziness, bedwetting, headache, and vomiting. Your side effects may increase when you take higher doses of LUMRYZ. The most common side effects in children include nausea, bedwetting, vomiting, headache, decreased weight, decreased appetite, dizziness, and sleepwalking.
LUMRYZ can cause physical dependence and craving for the medicine when it is not taken as directed. These are not all the possible side effects of LUMRYZ.
For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects.
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.
Please see full Prescribing Information, including BOXED Warning, and Medication Guide.
PM-US-LUM-0640 08/2025
Sarah is living with narcolepsy, which is a chronic neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. She is also an aspiring social worker, inspired by her knowledge, experience, and personal journey with narcolepsy to support others facing health challenges.
sarah_b