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.
Last Updated on September 24, 2024 by Daily News Staff
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.
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 INFORMATIONWARNING: 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
SOURCE:
Avadel
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health and wellness
Heat waves can leave homes dangerously hot – even for young, healthy adults
Heat waves can turn homes into dangerous heat traps—especially during blackouts or in houses without AC—pushing indoor temperatures and humidity into lethal territory even for young, healthy adults, not just the elderly.
Heat waves can leave homes dangerously hot – even for young, healthy adults
Zoltan Nagy, Eindhoven University of Technology
Most people know that heat waves can be dangerous, but what they may not realize is that the heat indoors can be much worse than outdoors.
When the power goes out and air conditioning stops, or in homes without cooling, a house starts to function like a greenhouse during a heat wave. Heat enters through windows and walls and has nowhere to go. Air stagnates.
Within hours, indoor temperatures can climb well above what the thermometer shows outside, especially on upper floors and in rooms with south-facing windows. Over longer periods, especially if temperatures don’t cool off overnight, conditions can become lethal.
Most heat-related deaths occur indoors. When a heat dome sent temperatures soaring in the Pacific Northwest in 2021, 98% of the more than 600 deaths in British Columbia happened inside homes. Washington and Oregon also saw high numbers of deaths in homes that lacked air conditioning.
In Europe, where only 1 in 10 households have air conditioning, heat waves killed an estimated 60,000 people in 2022 and 47,000 in 2023, largely inside buildings never designed for these temperatures.
People of all ages are at risk in heat waves like these. I spent eight years at the University of Texas at Austin studying how buildings respond to extreme heat. In a recent study, my team assessed the heat risk in every single-family home in Austin.
We found that even younger, healthy adults face far more risk than they realize.
How hot is too hot for a human body?
Your body maintains a core temperature of about 98.6 degrees Fahrenheit (37 degrees Celsius). To cool down, it pushes blood to the skin and sweats. But when air temperature is high, that convective cooling weakens. When humidity is also high, sweat cannot evaporate.
If the body has no way to release heat, core temperature rises. If the core temperature increases past about 104 F (40 C), the body’s thermoregulation starts to fail. Past 109 F (42.8 C), death becomes likely.
What makes indoor heat especially dangerous is that it does not let up at night in homes that lack air conditioning. Outdoor temperatures typically drop after sunset, and someone outside can get a few hours of recovery. But a poorly insulated home that has been absorbing heat all day releases that heat slowly, keeping indoor temperatures elevated through the night. A person inside the home never gets a break.
After two or three nights of this, even healthy people start to be at serious risk for heat-related illnesses.
Why homes heat up more than people expect
People tend to underestimate indoor heat for a few reasons.
One is that the thermostat typically sits on one wall in one room. It does not tell what the temperature is in an upstairs bedroom or near a sun-facing window. In older, underinsulated homes, the actual felt temperature can exceed 90 F (32.2 C) even when a thermostat reads 75 F (23.9 C). The hot walls, ceilings and windows can radiate heat directly onto your body.
Another reason is that people assume all homes respond to heat the same way. However, a newer home with double-pane windows and good insulation acts like a thermos, keeping heat out for a longer time. An older home with single-pane windows and cracks in the walls heats up fast.
Two houses on the same street, exposed to the same outdoor conditions, can have completely different temperatures inside. And in a blackout, where neither home has cooling, those differences can become a matter of life and death.
What we found in Austin
Our study combined two datasets. From Austin’s tax appraisal records, we pulled basic property information, such as the year the home was built, the size and the number of stories for each of the city’s 213,000 single-family homes. We then matched each home to the most similar energy simulation models in a U.S. Department of Energy database that contains thousands of detailed, physics-based building energy models representing the U.S. residential building stock.
Using those models, we simulated each building’s indoor temperatures over time during a three-day heat wave and power outage with outdoor temperatures above 110 F (43 C).
We found that 85% of homes got hot enough to pose a significant risk of death for an elderly occupant. But what surprised us was the risk to younger people.
Under today’s climate conditions in Austin, about 15% of homes already have the potential to get hot enough without air conditioning to pose serious heat risks to healthy adults. Under future warming scenarios, that number jumps to as high as 65% if average summer highs reach 104 F (40 C). Further, climate projections for Austin show that heat waves will double in frequency by the end of the century.
We found three types of buildings and accompanying risks:
- Resilient homes, which are newer and well insulated, tended to have temperature and humidity conditions that would be survivable for an elderly occupant throughout the simulated heat wave with blackout.
- Critical-risk buildings, which are mostly older homes, became dangerous almost immediately.
- And then there was the middle group – homes where temperatures rose slowly during the simulated blackout, day by day, possibly giving occupants a false sense of security until it was too late.
Texas has already seen conditions like our case study’s – a heat wave paired with a power outage. In 2024, a derecho knocked out power for nearly 900,000 Houston households while the heat index climbed to 100 F (37.8 C). Seven weeks later, Hurricane Beryl cut power to 2.6 million homes, leaving them without power for over three days, with temperatures over 90 F (32.2 C).
What you can do to stay safe
If you can’t get cooling at home, there are steps you can take that can help.
Move to the lowest floor of your home, where it will be coolest. Close the blinds and curtains on sun-facing windows. Drink water constantly to stay hydrated, which is essential for regulating body temperature.
If you’re facing a blackout, be sure to also check on elderly neighbors, especially those living alone. You can also try to find a public cooling center; many cities now open them during heat emergencies.
Longer term, upgrades such as reflective window film, attic insulation and lighter-colored roofing can reduce how much a home heats up. After the 2021 heat dome, British Columbia’s coroner recommended updating building codes to address heat.
Our own findings point in the same direction: We propose that new homes should be required by building codes to maintain conditions in which at least light physical activity remains possible for all occupants for at least 72 hours during a power outage.
As summers get hotter with climate change and blackouts become more frequent, the risks of people suffering heat illnesses will only continue to rise.
Zoltan Nagy, Professor of Building Services, Eindhoven University of Technology
Heat waves can leave homes dangerously hot – even for young, healthy adults
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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(Feature Impact) Relationships and plumbing have something in common: they can both benefit from practicing smarter bathroom habits. Whether you’re sharing a household with your family, a partner or roommates, good etiquette in these frequently shared spaces can save everyone’s sanity – just like rethinking your flushing routines can save your pipes.
From simple annoyances like leaving the toilet seat up to potentially costly mistakes like clogging your plumbing by flushing the wrong items, a new survey from the Responsible Flushing Alliance (RFA) illuminated a variety of bad habits that cause the most tension in American homes.
In addition to shedding light on these problems, the alliance outlined solutions you can implement at home to restore peace in your restroom. Plus, you can gamify the habit changes to make them more entertaining.
“Our goal is to revolutionize public education by keeping it highly engaging, memorable and fun,” RFA President Lara Wyss said. “We are challenging the public to rethink their everyday habits.”
Get started with these seven tips:
Replace the toilet roll properly
Don’t be the reason someone gets stranded with nothing but a cardboard tube in their moment of need. Keep extra rolls nearby, and when you’re down to the last square of toilet paper, make it a race against the clock to replace it.
Use the (flush) force
An unflushed toilet was listed as the biggest bathroom pet peeve by 37% of survey respondents. To make it fun for the family, introduce a new tradition: before you leave the bathroom, pretend there’s an invisible force field pushing you back to make sure you’ve flushed and are good to go.
Hunt for sink and shower hair
Leaving hair in the drain isn’t just a source of potential plumbing clogs – it’s also an irritant for 35% of respondents. After you shower or style your hair, make it a game to see how many stray strands you can capture and deliver to the trash can.
Clean it and close it
You’ve probably heard jokes about people who leave the toilet seat up, so don’t make yourself the punchline. For a completely un-mockable routine, grab the brush to give the bowl a quick swish after you flush, ensure the seat is down and use an anti-bacterial wipe to leave everything sparkling. You’ll notice cleaning wipes bear the Do Not Flush symbol, which means they go in the trash and never the toilet.
Conquer the counter
Toothpaste and water often splatter all over the place, so to be a polite bathroom roommate, wipe up the mess before it’s even had a chance to dry. Keep cleaning wipes or rags within easy reach and give yourself a 10-second deadline to leave surfaces spotless.
Practice good towel etiquette
Wet towels don’t belong on bathroom floors. If they still have a use or two left in them, banish them back to your towel rack. Otherwise, challenge yourself to a game of laundry basketball, aiming for the hamper.
Don’t flush the un-flushable
According to an RFA survey, half of Americans are still flushing things they know they shouldn’t, like paper towels, feminine hygiene products and non-flushable wipes. Since clearing a clog in your home can cost anywhere from $300-$15,000 or more, the only thing you’ll be draining with habits like these is your wallet.
“Always check wet wipes for the Do Not Flushsymbol and disposal instructions, which helps us protect not only the health of our homes and environment but our relationships, too,” Wyss said.
Visit FlushSmart.org to learn more about good bathroom etiquette, take an interactive quiz and put these tips into practice with a seven-day challenge.
Photo courtesy of Shutterstock (throwing away non-flushable wipe)
SOURCE:
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Lifestyle
Social media before bedtime wreaks havoc on our sleep − a sleep researcher explains why screens alone aren’t the main culprit
Social Media Before Bedtime? A sleep researcher explains why late-night social media disrupts sleep less because of screens and blue light, and more because of emotional engagement—doomscrolling, social comparison, habitual checking and FOMO—that keeps the brain aroused and delays rest.
Brian N. Chin, Trinity College
“Avoid screens before bed” is one of the most common pieces of sleep advice. But what if the real problem isn’t screen time − it’s the way we use social media at night?
Sleep deprivation is one of the most widespread yet overlooked public health issues, especially among young adults and adolescents.
Despite needing eight to 10 hours of sleep, most adolescents fall short, while nearly two-thirds of young adults regularly get less than the recommended seven to nine hours.
Poor sleep isn’t just about feeling tired − it’s linked to worsened mental health, emotion regulation, memory, academic performance and even increased risk for chronic illness and early mortality.
At the same time, social media is nearly universal among young adults, with 84% using at least one platform daily. While research has long focused on screen time as the culprit for poor sleep, growing evidence suggests that how often people check social media − and how emotionally engaged they are − matters even more than how long they spend online.
As a social psychologist and sleep researcher, I study how social behaviors, including social media habits, affect sleep and well-being. Sleep isn’t just an individual behavior; it’s shaped by our social environments and relationships.
And one of the most common yet underestimated factors shaping modern sleep? How we engage with social media before bed.
Emotional investment in social media
Beyond simply measuring time spent on social media, researchers have started looking at how emotionally connected people feel to their social media use.
Some studies suggest that the way people emotionally engage with social media may have a greater impact on sleep quality than the total time they spend online.
In a 2024 study of 830 young adults, my colleagues and I examined how different types of social media engagement predicted sleep problems. We found that frequent social media visits and emotional investment were stronger predictors of poor sleep than total screen time. Additionally, presleep cognitive arousal and social comparison played a key role in linking social media engagement to sleep disruption, suggesting that social media’s effects on sleep extend beyond simple screen exposure.
I believe these findings suggest that cutting screen time alone may not be enough − reducing how often people check social media and how emotionally connected they feel to it may be more effective in promoting healthier sleep habits.
How social media disrupts sleep
If you’ve ever struggled to fall asleep after scrolling through social media, it’s not just the screen keeping you awake. While blue light can delay melatonin production, my team’s research and that of others suggests that the way people interact with social media may play an even bigger role in sleep disruption.
Here are some of the biggest ways social media interferes with your sleep:
- Presleep arousal: Doomscrolling and emotionally charged content on social media keeps your brain in a state of heightened alertness, making it harder to relax and fall asleep. Whether it’s political debates, distressing news or even exciting personal updates, emotionally stimulating content can trigger increased cognitive and physiological arousal that delays sleep onset.
- Social comparison: Viewing idealized social media posts before bed can lead to upward social comparison, increasing stress and making it harder to sleep. People tend to compare themselves to highly curated versions of others’ lives − vacations, fitness progress, career milestones − which can lead to feelings of inadequacy and anxiety that disrupt sleep.
- Habitual checking: Social media use after lights out is a strong predictor of poor sleep, as checking notifications and scrolling before bed can quickly become an automatic habit. Studies have shown that nighttime-specific social media use, especially after lights are out, is linked to shorter sleep duration, later bedtimes and lower sleep quality. This pattern reflects bedtime procrastination, where people delay sleep despite knowing it would be better for their health and well-being.
- Fear of missing out, or FOMO: The urge to stay connected also keeps many people scrolling long past their intended bedtime, making sleep feel secondary to staying updated. Research shows that higher FOMO levels are linked to more frequent nighttime social media use and poorer sleep quality. The anticipation of new messages, posts or updates can create a sense of social pressure to stay online and reinforce the habit of delaying sleep.
Taken together, these factors make social media more than just a passive distraction − it becomes an active barrier to restful sleep. In other words, that late-night scroll isn’t harmless − it’s quietly rewiring your sleep and well-being.
How to use social media without sleep disruption
You don’t need to quit social media, but restructuring how you engage with it at night could help. Research suggests that small behavioral changes to your bedtime routine can make a significant difference in sleep quality. I suggest trying these practical, evidence-backed strategies for improving your sleep:
- Give your brain time to wind down: Avoid emotionally charged content 30 to 60 minutes before bed to help your mind relax and prepare for sleep.
- Create separation between social media and sleep: Set your phone to “Do Not Disturb” or leave it outside the bedroom to avoid the temptation of late-night checking.
- Reduce mindless scrolling: If you catch yourself endlessly refreshing, take a small, mindful pause and ask yourself: “Do I actually want to be on this app right now?”
A brief moment of awareness can help break the habit loop.
Brian N. Chin, Assistant Professor of Psychology, Trinity College
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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