health and wellness

One Woman’s Path to Finding Treatment for Narcolepsy

Wendy’s childhood cataplexy led to a narcolepsy diagnosis after years of excessive sleepiness. She now effectively manages her symptoms with the LUMRYZ medication.

Published

2 years ago

September 23, 2024

Daily News Staff

Last Updated on September 24, 2024 by Daily News Staff

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Wendy was compensated by Avadel Pharmaceuticals for her time. Individual results may vary.

(Family Features) For Wendy, playfully jumping on the bed as a child led to panic when, suddenly, her limbs ceased to function and she dropped to the floor. Although she needed help, she couldn’t use her voice. This was Wendy’s first experience with cataplexy, a sudden period of muscle weakness that can be triggered by strong emotions, like laughter, excitement, or anger – a hallmark symptom of narcolepsy type 1.

Narcolepsy is a complex, lifelong sleep disorder that includes symptoms like cataplexy and excessive daytime sleepiness and is estimated to affect 1 in 2,000 Americans.

Wendy’s childhood experience with cataplexy was followed by years of struggling with excessive daytime sleepiness (EDS) and trouble sleeping through the night. Her sleepiness, however, was dismissed for much of her life – often being told she was tired simply due to being busy.

“No one believed me when I said that something felt wrong,” Wendy said.

For people with narcolepsy, the lines between being asleep and awake are blurred. Instead of a natural sleep pattern, they often experience short periods of poor-quality sleep throughout the day and night, rather than restorative, consolidated sleep.

25 years after her first cataplexy attack, Wendy experienced a second episode while driving and was rushed to the emergency room.

“I stayed in the hospital for a week,” said Wendy. “Doctors first thought I likely had an attack similar to a stroke or a severe migraine. It wasn’t until I met with a neurologist and shared that I slept too much that I was referred for a sleep study and finally diagnosed with narcolepsy.”

After receiving the right diagnosis, the next challenge for Wendy was finding the right treatment.

Her doctors first prescribed several stimulants, which didn’t alleviate her daytime sleepiness. She was then prescribed a sodium oxybate, a treatment used for EDS and cataplexy, however this particular medication required waking up in the middle of the night to take a second dose, which Wendy found herself struggling to do.

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Wendy turned to the narcolepsy community, where she learned about a once-nightly medication, LUMRYZ® (sodium oxybate) for extended-release oral suspension, CIII.

LUMRYZ is the first and only U.S. Food and Drug Administration approved once-at-bedtime sodium oxybate treatment for cataplexy or EDS in adults with narcolepsy, and a medication that Wendy says she is grateful for.

LUMRYZ has a boxed warning as a central nervous system depressant and for its potential for abuse and misuse. LUMRYZ is available only through a restricted program under a Risk Evaluation and Mitigation Strategy called the LUMRYZ REMS. Most common adverse reactions (incidence ≥ 5% and greater than placebo) reported for all doses of LUMRYZ combined were nausea, dizziness, bedwetting, headache and vomiting. Please see additional Important Safety Information, including Boxed Warning below.

“When I first heard about LUMRYZ being once-at-bedtime, I was ecstatic there was an option that might help with my cataplexy and EDS without having to wake in the middle of the night for a second dose,” said Wendy.

Today, Wendy has discovered a treatment that is right for her and helps improve her EDS and cataplexy symptoms, individual results may vary.

“My advice to others with narcolepsy is to be outspoken about your experience and learn as much as you can to be well-informed. I want to see people be diagnosed earlier, advocate for themselves, and find a treatment that’s right for them.”

If you are struggling with excessive daytime sleepiness, ask your healthcare provider about narcolepsy, and if you have been diagnosed, ask your physician if LUMRYZ is right for you. Learn more at www.lumryz.com.

Photo caption: Wendy, a person with narcolepsy

INDICATIONS
LUMRYZ (sodium oxybate) for extended-release oral suspension is a prescription medicine used to treat the following symptoms in adults with narcolepsy:

sudden onset of weak or paralyzed muscles (cataplexy)
excessive daytime sleepiness (EDS)

IMPORTANT SAFETY INFORMATION

WARNING: Taking LUMRYZ™ (sodium oxybate) with other central nervous system (CNS) depressants such as medicines used to make you fall asleep, including opioid analgesics, benzodiazepines, sedating antidepressants, antipsychotics, sedating anti-epileptic medicines, general anesthetics, muscle relaxants, alcohol, or street drugs, may cause serious medical problems, including trouble breathing (respiratory depression), low blood pressure (hypotension), changes in alertness (drowsiness), fainting (syncope), and death. The active ingredient of LUMRYZ (sodium oxybate) is a form of gamma hydroxybutyrate (GHB), a controlled substance. Abuse or misuse of illegal GHB alone or with other CNS depressants (drugs that cause changes in alertness or consciousness) have caused serious side effects. These effects include seizures, trouble breathing (respiratory depression), changes in alertness (drowsiness), coma, and death. Call your doctor right away if you have any of these serious side effects. Because of these risks, LUMRYZ is available only by prescription and filled through certified pharmacies in the LUMRYZ REMS program. You must be enrolled in the LUMRYZ REMS to receive LUMRYZ. Further information is available at www.LUMRYZREMS.com or by calling 1-877-453-1029.

It is not known if LUMRYZ is safe and effective in people less than 18 years of age.

Do not take LUMRYZ if you take 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 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 (e.g., 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 have or had depression or have tried to harm yourself. Call your doctor right away if you have symptoms of mental health problems or a change in weight or appetite.
Sleepwalking. Sleepwalking can cause injuries. Call your doctor if you start sleepwalking.

Tell your doctor if you are on a salt-restricted diet or if you 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. 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-AVGEN-0169-v2 07/2024

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SOURCE:
Avadel

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Health

Research Reveals Persistent Racial Disparities in Stroke Treatment and Outcomes

Published

14 hours ago

August 3, 2026

Daily News Staff

woman comforting another woman. Stroke treatment. — Photo by RDNE Stock project on Pexels.com

Three new studies shared this week at the Society of NeuroInterventional Surgery (SNIS) 23rd Annual Meeting deliver a clear message: stroke care in the U.S. is improving, but those gains are not reaching everyone equally. Researchers found persistent disparities tied to race, geography, and socioeconomic status—factors that can shape whether a patient receives advanced treatment, how quickly they reach specialized care, and ultimately, whether they survive.

Stroke remains one of the nation’s leading causes of death and long-term disability. In recent years, breakthroughs in emergency response systems and minimally invasive procedures have expanded what’s possible in the critical first hours after a stroke. But the latest findings suggest that access to those life-saving advances still depends too heavily on who you are and where you live.

Study 1: Treatment gaps widen as strokes get more severe

The first study, “Racial Disparities in Endovascular Thrombectomy Widen with Stroke Severity: A National Inpatient Sample Analysis,” examined more than 325,000 acute ischemic stroke patients treated at U.S. teaching hospitals between 2018 and 2022.

The focus was endovascular thrombectomy (EVT), a minimally invasive procedure in which specialists remove a clot from a blocked artery in the brain. EVT can be a game-changer for eligible patients—but researchers found Black patients were less likely than white patients to receive it across all levels of stroke severity.

What stood out most: the disparity grew as stroke severity increased. At a National Institutes of Health Stroke Scale (NIHSS) score of 20, the predicted probability of receiving EVT was:

33% for white men
32% for white women
28% for Black men
26% for Black women

Co-first author Muhammed Amir Essibayi, MD, MSc, FRCP, noted that timely access becomes even more critical as severity rises—yet the treatment gap becomes more pronounced. The study also highlighted an intersectional pattern, with Black women consistently least likely to receive EVT.

Study 2: Hemorrhagic stroke deaths are falling—but disparities persist

The second study, “Reducing Inequalities in Stroke Events-Hemorrhagic Disparities (RISE-HD): A 10-year Statewide Analysis of Social Determinants of Mortality in Hemorrhagic Stroke,” analyzed more than 120,000 patients hospitalized with hemorrhagic stroke in Florida between 2013 and 2024.

There was good news: mortality rates declined significantly over the decade, suggesting real progress in stroke systems and hospital care.

But after adjusting for age, sex, and comorbidities, disparities remained. Black patients had higher odds of in-hospital mortality than white patients. Higher mortality was also associated with:

Living in rural areas
Having Medicaid or other non-commercial insurance

Researchers also found regional differences across Florida, pointing to uneven access to specialized stroke care.

Primary author Natália Vasconcellos, MD, MSc, emphasized that improving outcomes for everyone will require addressing barriers to specialized stroke systems—especially in underserved communities.

Study 3: The “Stroke Belt” has two different access problems

The third study, “Dual Pathways to Hemorrhagic Stroke Mortality Across the U.S. Stroke Belt: Rural Neurointerventional Isolation and Urban Structural Vulnerability,” looked at hemorrhagic stroke mortality across 433 counties in the “Stroke Belt,” a region long associated with higher stroke rates and worse outcomes.

Researchers compared factors linked to mortality in rural versus urban counties, including:

Distance to the nearest Comprehensive Stroke Center
Community-level socioeconomic disadvantage
Racial and economic segregation
HIV burden

They found the drivers of mortality differed sharply by setting:

In rural counties, longer travel times to Comprehensive Stroke Centers were more strongly associated with higher mortality.
In urban counties, racialized economic segregation and HIV burden were more strongly associated with poorer outcomes—even when specialized care was geographically closer.

Dylan Yates, a medical student at Tulane University School of Medicine, summarized the takeaway: the neurointerventional access gap in the Stroke Belt is “not one problem, it is two.” Solutions need to match the reality on the ground—strengthening transfer networks and specialty connections in rural areas, while addressing structural disadvantage and underinvestment in urban communities.

What to watch for: where the system can improve

Across all three studies, the common thread is that medical innovation alone doesn’t guarantee equitable outcomes. Researchers pointed toward targeted interventions that could help close the gap, including:

More consistent, equitable treatment pathways for advanced stroke procedures like EVT
Stronger stroke transfer networks to reduce delays—especially in rural regions
Expanded access to specialty stroke care and Comprehensive Stroke Centers
Community-level investment and structural reforms in underserved urban neighborhoods

For patients and families, these findings also reinforce the importance of recognizing stroke symptoms quickly and calling 911 immediately. Time is brain—yet the system must ensure that “time” and “access” don’t vary based on race, ZIP code, or insurance status.Source: Society of NeuroInterventional Surgery (SNIS), July

If You’re Feeling Stressed by Pricey Meds, Pharmacists Can Help

Stressed by Pricey Meds? If your wallet is feeling the squeeze of prescription drug costs as other living expenses like grocery and energy prices rise, you’re not alone. That’s where a powerful ally can help you manage drug costs: a health-system pharmacist.

Published

3 days ago

July 31, 2026

Daily News Staff

If You’re Feeling Stressed by Pricey Meds, Pharmacists Can Help

(Feature Impact) If your wallet is feeling the squeeze of prescription drug costs as other living expenses like grocery and energy prices rise, you’re not alone.

More people are worrying about affording essential medications these days. In fact, more than 40% of adults said they skipped doses or didn’t fill prescriptions in the past year due to cost, according to a KFF Health survey.

People who take multiple drugs to manage chronic conditions often feel this pinch even more severely. They’re also more likely to make more frequent visits to their clinic or health system for care. That’s where a powerful ally can help them manage their drug costs: a health-system pharmacist.

These medication experts work side-by-side with the clinicians who prescribe drugs in health care practices – and sometimes prescribe medications themselves. Their deep knowledge can help people get the most out of the drugs they take.

“Pharmacists really know the full picture of medications, including pricing, insurance coverage, alternative therapies and potential side effects,” said Lindsey Amerine, PharmD, chief pharmacy officer for the Cleveland Clinic. “That’s why it’s helpful to not only count on your doctor to diagnose your condition and prescribe therapies, but also your pharmacist to optimize your medications.”

Get a Comprehensive Review of Your Medications

Asking the pharmacist on your health-system care team to go over your medications may reveal opportunities to save, Amerine said. Health-system pharmacists are uniquely qualified to provide this service because they keep close track of medication costs as well as approvals of new drugs and how those compare to older options.

A full review might reveal:

Drugs once needed may not be as useful anymore. People often continue taking medications unaware that something new could offer greater benefits or their condition no longer requires the same therapy.
Changes in your condition may mean you could safely take a lower dosage of a drug, thereby reducing costs.
There may be less costly alternatives that would work as well such as a generic or older medication.

Get Help Exploring Discount Options

You’ve probably heard about programs that can help lower prescription costs, including discount and patient assistance programs. Pharmacists can help you understand how to navigate these programs and access potential discount programs and opportunities, Amerine said. Here’s how:

Pharmacists can guide you through discount programs your health system offers.
They can check your eligibility for drug maker discounts and help you understand how those discounts work with your insurance, especially if you have a high-deductible plan.
Pharmacists can help you navigate the various prescription cost-savings programs and how they work.
They can also help you learn about patient assistance programs that provide free or discounted medications to people who cannot afford them.

Medications are a vital part of your health care. Before you try to stretch a costly medicine or give it up altogether, talk to the medication expert on your health care team: your health-system pharmacist. For more information, visit yourpharmacist.org.

Why It Pays to Talk Meds with a Pharmacist

“My doctor prescribed it, so I must need it.” Often this is true, but not always. People sometimes take drugs longer than they need to, at doses higher than necessary or that may interact with other medications.

Just as you’d see a heart specialist about an odd pulse rate, it can help to see a pharmacist – your medication specialist – to discuss your prescriptions.

Of all health care professionals, pharmacists have the deepest knowledge of drug interactions and safety issues. They’re experts on how the effectiveness of different medications – brand name and generic – compare. They also closely track changes in prices and know when a drug’s cost has dropped or if an effective, less costly alternative is available.

Health-system pharmacists’ expertise is especially helpful for those with multiple chronic conditions who typically take several medications with more benefits, costs and side effects to balance.

Talking with a pharmacist can ensure your prescriptions are best for you and that you have access to the most affordable options. collect?v=1&tid=UA 482330 7&cid=1955551e 1975 5e52 0cdb 8516071094cd&sc=start&t=pageview&dl=http%3A%2F%2Ftrack.familyfeatures track

SOURCE:

American Society of Health-System Pharmacists

Daily News Staff