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.
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.
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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.
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FDA’s COVID-19 Vaccine Safety Claims Lack Solid Evidence—Why Overreaction Could Harm Public Health
COVID-19 vaccine safety: The FDA’s claims about COVID-19 vaccine deaths in children lack strong evidence and could restrict vaccine access. Learn why experts say VAERS reports aren’t proof, and how overreacting may harm public health and trust in vaccines.
The death of children due to an unsafe vaccine is a serious allegation. I am a pediatric cardiologist who has studied the link between COVID-19 vaccines and heart-related side effects such as myocarditis in children. To my knowledge, studies to date have shown such side effects are rare, and severe outcomes even more so. However, I am open to new evidence that could change my mind. But without sufficient justification and solid evidence, restricting access to an approved vaccine and changing well-established procedures for testing vaccines would carry serious consequences. These moves would limit access for patients, create roadblocks for companies and worsen distrust in vaccines and public health. In my view, it’s important for people reading about these FDA actions to understand how the evidence on a vaccine’s safety is generally assessed.
Determining cause of death
The FDA memo claims that the deaths of these children were directly related to receiving a COVID-19 immunization. From my perspective as a clinician, it is awful that any child should die from a routine vaccination. However, health professionals like me owe it to the public to uphold the highest possible standards in investigating why these deaths occurred. If the FDA has evidence demonstrating something that national health agencies worldwide have missed – widespread child deaths due to myocarditis caused by the COVID-19 vaccine – I don’t doubt that even the most pro-vaccine physician will listen. So far, however, no such evidence has been presented. While a death logged in VAERS is a starting point, on its own it is insufficient to conclude whether a vaccine caused the death or other medical causes were to blame. To demonstrate a causal link, FDA staff and physicians must align the VAERS report with physicians’ assessments of the patient, as well as data from other sources for monitoring vaccine safety. These include PRISM, which logs insurance claims data, and the Vaccine Safety Datalink, which tracks safety signals in electronic medical records. It’s known that most deaths logged only in VAERS of children who recently received vaccines have been incorrectly attributed to the vaccines – either by accident or in some cases on purpose by anti-vaccine activists.
Heart-related side effects of COVID-19 vaccines
In his Substack and Twitter accounts, Prasad has said that he believes the rate of severe cardiac side effects after COVID-19 vaccination is severely underestimated and that the vaccines should be restricted far more than they currently are. In a July 2025 presentation, Prasad quoted a risk of 27 cases per million of myocarditis in young men who received the COVID-19 vaccine. A 2024 review suggested that number was a bit lower – about 20 cases out of 1 million people. But that same study found that unvaccinated people had greater risk of heart problems after a COVID-19 infection than vaccinated people. In a different study, people who got myocarditis after a COVID-19 vaccination developed fewer complications than people who got myocarditis after a COVID-19 infection. Existing vaccine safety infrastructure in the U.S. successfully identifies dangers posed by vaccines – and did so during the COVID-19 pandemic. Today, most COVID-19 vaccines in the U.S. rely on mRNA technology. But as vaccines were first emerging during the COVID-19 pandemic, two pharmaceutical companies, Janssen and AstraZeneca, rolled out a vaccine that used a different technology, called a viral vector. This type of vaccine had a very rare but genuine safety problem that was detected.A report in VAERS is at most a first step to determining whether a vaccine caused harm. VAERS, the Vaccine Safety Datalink, clinical investigators in the U.S. and their European counterparts detected that these vaccines did turn out to cause blood clotting. In April 2021, the FDA formally recommended pausing their use, and they were later pulled from the market. Death due to myocarditis from COVID-19 vaccination is exceedingly rare. Demonstrating that it occurred requires proof that the person had myocarditis, evidence that no other reasonable cause of death was present, and the absence of any additional cause of myocarditis. These factors cannot be determined from VAERS data, however – and to date, the FDA has presented no other relevant data.
A problematic vision for future vaccine approvals
Currently, vaccines are tested both by seeing how well they prevent disease and by how well they generate antibodies, which are the molecules that help your body fight viruses and bacteria. Some vaccines, such as the COVID-19 vaccine and the influenza vaccine, need to be updated based on new strains. The FDA generally approves these updates based on how well the new versions generate antibodies. Since the previous generation of vaccines was already shown to prevent infection, if the new version can generate antibodies like the previous one, researchers assume its ability to prevent infection is comparable too. Later studies can then test how well the vaccines prevent severe disease and hospitalization. The FDA memo says this approach is insufficient and instead argues for replacing such studies with many more placebo-controlled trials – not just for COVID-19 vaccines but also for widely used influenza and pneumonia vaccines. That may seem reasonable theoretically. In practice, however, it is not realistic. Today’s influenza vaccines must be changed every season to reflect mutations to the virus. If the FDA were to require new placebo-controlled trials every year, the vaccine being tested would become obsolete by the time it is approved. This would be a massive waste of time and resources.Influenza vaccines must be updated for every flu season.Jacob Wackerhausen/iStock via Getty Images Plus Also, detecting vaccine-related myocarditis at the low rate at which it occurs would have required clinical trials many times larger than the ones that were done to approve COVID-19 mRNA vaccines. This would have cost at least millions of dollars more, and the delay in rolling out vaccines would have also cost lives. Placebo-controlled trials would require comparing people who receive the updated vaccine with people who remain unvaccinated. When an older version of the vaccine is already available, this means purposefully asking people to forgo that vaccine and risk infection for the sake of the trial, a practice that is widely considered unethical. Current scientific practice is that only a brand-new vaccine may be compared against placebo. While suspected vaccine deaths should absolutely be investigated, stopping a vaccine for insufficient reasons can lead to a significant drop in public confidence. That’s why it’s essential to thoroughly and transparently investigate any claims that a vaccine causes harm.
PFAS in pregnant women’s drinking water puts their babies at higher risk, study finds
A new study shows pregnant women exposed to PFAS-contaminated drinking water face higher risks of low birth weight, preterm birth, and infant mortality. Learn how PFAS, or “forever chemicals,” impact babies and what you can do to reduce exposure.
PFAS, or perfluoroalkyl and polyfluoroalkyl substances, have captured the attention of the public and regulators in recent years for good reason. These man-made compounds persist in the environment, accumulate in human bodies and may cause harm even at extremely low concentrations. Most current knowledge about the reproductive effects of PFAS comes from laboratory studies on animals such as rats, or from correlations between PFAS levels in human blood and health outcomes. Both approaches have important limitations. Rats and humans have different bodies, exposures and living conditions. And independent factors, such as kidney functioning, may in some cases be the true drivers of health problems. We wanted to learn about the effects of PFAS on real-world human lives in a way that comes as close as possible to a randomized experiment. Intentionally exposing people to PFAS would be unethical, but the environment gave us a natural experiment of its own. We looked at the locations of wells that supply New Hampshire residents with drinking water and how those locations related to birth outcomes. We collected data on all births in the state from 2010 to 2019 and zoomed in on the 11,539 births that occurred within 3.1 miles (5 kilometers) of a site known to be contaminated with PFAS and where the mothers were served by public water systems. Some contamination came from industries, other from landfills or firefighting activities.A conceptual illustration shows how PFAS can enter the soil and eventually reach groundwater, which flows downhill. Industries and airports are common sources of PFAS. The homes show upstream (left) and downstream (right) wells.Melina Lew PFAS from contaminated sites slowly migrate down through soil into groundwater, where they move downstream with the groundwater’s flow. This created a simple but powerful contrast: pregnant women whose homes received water from wells that were downstream, in groundwater terms, from the PFAS source were likely to have been exposed to PFAS from the contaminated site, but those who received water from wells that were upstream of those sites should not have been exposed. Using outside data on PFAS testing, we confirmed that PFAS levels were indeed greater in “downstream” wells than in “upstream” wells. The locations of utilities’ drinking water wells are sensitive data that are not publicly available, so the women likely would not have known whether they were exposed. Prior to the state beginning to test for PFAS in 2016, they may not have even known the nearby site had PFAS.
PFAS connections to the riskiest births
We found what we believe is clear evidence of harm from PFAS exposure. Women who received water from wells downstream of PFAS-contaminated sites had on average a 43% greater chance of having a low-weight baby, defined as under 5.5 pounds (2,500 grams) at birth, than those receiving water from upstream wells with no other PFAS sources nearby. Those downstream had a 20% greater chance of a preterm birth, defined as before 37 weeks, and a 191% greater chance of the infant not surviving its first year. Per 100,000 births, this works out to 2,639 additional low-weight births, 1,475 additional preterm births and 611 additional deaths in the first year of life. Looking at the cases with the lowest birth weights and earliest preterm births, we found that the women receiving water from wells downstream from PFAS sources had a 180% greater chance of a birth under 2.2 pounds (1,000 grams) and a 168% greater chance of a birth before 28 weeks than those with upstream wells. Per 100,000 births, that’s about 607 additional extremely low-weight births and 466 additional extremely preterm births.
PFAS contamination is costly
When considering regulations to control PFAS, it helps to express the benefits of PFAS cleanup in monetary terms to compare them to the costs of cleanup. Researchers use various methods to put a dollar value on the cost of low-weight and preterm births based on their higher medical bills, lower subsequent health and decreased lifetime earnings. We used the New Hampshire data and locations of PFAS-contaminated sites in 11 other states with detailed PFAS testing to estimate costs from PFAS exposure nationwide related to low birth weight, preterm births and infant mortality. The results are eye-opening. We estimate that the effects of PFAS on each year’s low-weight births cost society about US$7.8 billion over the lifetimes of those babies, with more babies born every year. We found the effects of PFAS on preterm births and infant mortality cost the U.S. about $5.6 billion over the lifetimes of those babies born each year, with some of these costs overlapping with the costs associated with low-weight births. An analysis produced for the American Water Works Association estimated that removing PFAS from drinking water to meet the EPA’s PFAS limits would cost utilities alone $3.8 billion on an annual basis. These costs could ultimately fall on water customers, but the broader public also bears much of the cost of harm to fetuses. We believe that just the reproductive health benefits of protecting water systems from PFAS contamination could justify the EPA’s rule.
Treating PFAS
There is still much to learn about the risks from PFAS and how to avoid harm. We studied the health effects of PFOA and PFOS, two “long-chain” species of PFAS that were the most widely used types in the U.S. They are no longer produced in the U.S., but they are still present in soil and groundwater. Future work could focus on newer, “short-chain” PFAS, which may have different health impacts.If the water utility isn’t filtering for PFAS, or if that information isn’t known, people can purchase home water system filters to remove PFAS before it reaches the faucet.Compassionate Eye Foundation/David Oxberry via Getty ImagesPFAS are in many types of products, and there are many routes for exposure, including through food. Effective treatment to remove PFAS from water is an area of ongoing research, but the long-chain PFAS we studied can be removed from water with activated carbon filters, either at the utility level or inside one’s home. Our results indicate that pregnant women have special reason to be concerned about exposure to long-chain PFAS through drinking water. If pregnant women suspect their drinking water may contain PFAS, we believe they should strongly consider installing water filters that can remove PFAS and then replacing those filters on a regular schedule. Derek Lemoine, Professor of Economics, University of Arizona; Ashley Langer, Professor of Economics, University of Arizona, and Bo Guo, Associate Professor of Hydrology, University of Arizona This article is republished from The Conversation under a Creative Commons license. Read the original article.
The science section of our news blog STM Daily News provides readers with captivating and up-to-date information on the latest scientific discoveries, breakthroughs, and innovations across various fields. We offer engaging and accessible content, ensuring that readers with different levels of scientific knowledge can stay informed. Whether it’s exploring advancements in medicine, astronomy, technology, or environmental sciences, our science section strives to shed light on the intriguing world of scientific exploration and its profound impact on our daily lives. From thought-provoking articles to informative interviews with experts in the field, STM Daily News Science offers a harmonious blend of factual reporting, analysis, and exploration, making it a go-to source for science enthusiasts and curious minds alike. https://stmdailynews.com/category/science/
Empowering Seniors for Safer Online Experiences: 6 Practical Safety Tips for Caregivers and Families
Safety Tips for Caregivers: Empower seniors with essential online safety tips. Learn 6 practical strategies caregivers can use to help older adults navigate digital threats, scams, and security risks confidently.
Empowering Seniors for Safer Online Experiences: 6 Practical Safety Tips for Caregivers and Families
(Family Features) Today’s seniors aren’t shying away from a world that has become increasingly reliant on technology. Quite the opposite, in fact, as recent survey findings suggest adults ages 65 and older are more digitally active and self-assured than ever before. Nearly all seniors surveyed as part of the “Connecting the Digital Dots: Online Habits and Safety Concerns Across Three Generations” survey from Cox Mobile consider themselves digitally literate, using devices for shopping, banking, social media and entertainment. With older adults spending a significant amount of time connected to the digital world – 41% of those surveyed reported spending five or more hours online daily – they’re also more at-risk for scams, viruses like malware and data breaches. Even though 61% of seniors who encountered digital threats were able to mitigate the issues themselves, showing their growing digital capability, increased online engagement brings new challenges and responsibilities for caregivers, who often play a crucial role in supporting seniors’ digital journeys. To help support older loved ones’ safety and confidence as they navigate an evolving digital landscape, Cox Mobile, in partnership with Common Sense Media, offers educational materials on digital safety, smart device use and media literacy for all ages. In addition, these practical safety strategies can help empower seniors to make informed, safe choices online. Encourage Strong Passwords: Simple passwords, like number sequences, keyboard patterns or personal information – such as variations of your name, birthdate, address or names of pets or loved ones – are easily guessable and may lead to issues. While the survey found 70% of seniors already create strong, unique passwords, encourage them to avoid reusing passwords across sites. Recommend a password manager app to safely store passwords and eliminate the need to write them all down, which could lead to a breach if not stored properly. Promote Security Software: If devices aren’t protected, even the most careful users are susceptible to viruses. Though 63% of those surveyed have security software installed, it’s important to regularly make sure it’s up to date (or that automatic updates are enabled) and covers all devices, including laptops, tablets and smartphones. Enable Multi-Factor Authentication: A simple and effective way to stop most attempts at unauthorized account access, 60% of seniors are already using multi-factor authentication as an extra layer of protection. Some seniors, however, may need assistance setting up the safeguard, which typically sends a code to a phone number or email address as part of the login process, for online banking, email or social media accounts. Review Apps and Channels: Over time, it can be easy to accumulate apps on smartphones and tablets. While 51% of surveyed seniors remove unsafe apps, make it a habit to regularly check loved ones’ devices for unfamiliar or suspicious applications and delete them. Also keep an eye out for unauthorized charges, data sharing or browser extensions. Utilize Built-In Safety Features: Explore privacy controls on individual devices (and apps) and check with your loved ones’ internet service provider to ensure security features are being utilized like the 43% of those surveyed who are already taking advantage of their devices’ safety settings. Included privacy protections may include limiting data sharing, disabling location tracking, blocking pop-ups and restricting other unwanted communication. Discuss Online Safety Regularly: Because technology is ever-changing, it’s important for caregivers to talk with senior loved ones about online safety. Open, ongoing conversations, like those one-third of seniors are already having several times a week or even daily, can help build trust and awareness of current scams, suspicious texts or emails, commonly used apps and more. By fostering open dialogue, sharing practical safety strategies and leveraging trusted resources, caregivers can help their loved ones thrive and stay safe. Visit your local Cox Mobile store or go to CoxMobileSafety.com to find more tips, guides and full survey results. SOURCE:Cox Communications
Promote Security Software: If devices aren’t protected, even the most careful users are susceptible to viruses. Though 63% of those surveyed have security software installed, it’s important to regularly make sure it’s up to date (or that automatic updates are enabled) and covers all devices, including laptops, tablets and smartphones. Enable Multi-Factor Authentication: A simple and effective way to stop most attempts at unauthorized account access, 60% of seniors are already using multi-factor authentication as an extra layer of protection. Some seniors, however, may need assistance setting up the safeguard, which typically sends a code to a phone number or email address as part of the login process, for online banking, email or social media accounts. Review Apps and Channels: Over time, it can be easy to accumulate apps on smartphones and tablets. While 51% of surveyed seniors remove unsafe apps, make it a habit to regularly check loved ones’ devices for unfamiliar or suspicious applications and delete them. Also keep an eye out for unauthorized charges, data sharing or browser extensions. Utilize Built-In Safety Features: Explore privacy controls on individual devices (and apps) and check with your loved ones’ internet service provider to ensure security features are being utilized like the 43% of those surveyed who are already taking advantage of their devices’ safety settings. Included privacy protections may include limiting data sharing, disabling location tracking, blocking pop-ups and restricting other unwanted communication. Discuss Online Safety Regularly: Because technology is ever-changing, it’s important for caregivers to talk with senior loved ones about online safety. Open, ongoing conversations, like those one-third of seniors are already having several times a week or even daily, can help build trust and awareness of current scams, suspicious texts or emails, commonly used apps and more. By fostering open dialogue, sharing practical safety strategies and leveraging trusted resources, caregivers can help their loved ones thrive and stay safe. Visit your local Cox Mobile store or go to 
