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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.

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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.

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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.

Please see full Prescribing Information, including BOXED Warning, and Medication Guide.

PM-US-AVGEN-0169-v2 07/2024

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Avadel

Our Lifestyle section on STM Daily News is a hub of inspiration and practical information, offering a range of articles that touch on various aspects of daily life. From tips on family finances to guides for maintaining health and wellness, we strive to empower our readers with knowledge and resources to enhance their lifestyles. Whether you’re seeking outdoor activity ideas, fashion trends, or travel recommendations, our lifestyle section has got you covered. Visit us today at https://stmdailynews.com/category/lifestyle/ and embark on a journey of discovery and self-improvement.

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health and wellness

5 Trends in Heart Health Among Younger Adults: Why Your CoQ10 Level Matters

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(Feature Impact) Heart disease is something many adults push to the back of their minds if they are not experiencing symptoms; a concern for “later” in life. However, that mindset may be changing. New research suggests younger generations are thinking about their cardiovascular health earlier and with greater urgency.

They’re right to be thinking about it, too. Data from the American Heart Association shows heart disease is still the No. 1 killer of Americans. In fact, someone dies from cardiovascular disease every 34 seconds in the United States.

Risk factors such as obesity, high blood pressure, diabetes, and kidney disease are on the rise, too. Nearly half of U.S. adults have high blood pressure (47%), and obesity (42%), and more than half (57%) have type 2 diabetes or prediabetes.

Despite growing concern about heart health, many adults remain unclear about their personal risk. In fact, a majority of respondents (62%) in a survey conducted by Atomik Research on behalf of Doctor’s Best said they don’t know their current risk for heart disease. To provide context on these findings and highlight emerging heart health trends, Dr. Tania Elliott, a dual board-certified physician in internal medicine, offers some insights.

Feeling Fatigue

In the study, only 50% of respondents reported feeling energetic on a daily basis. Among those who reported feeling fatigued, 46% listed stress as their top perceived contributor, followed by insufficient sleep (38%), both of which are closely tied to cardiovascular health.

Troubling Symptoms

Among Gen Z respondents, 25% reported having shortness of breath during activity or while lying down, compared to just 16% of Baby Boomers, which is commonly associated with compromised heart health.

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Statins, which help address cardiovascular risk factors such as high cholesterol, are among the most commonly prescribed drugs in America, with more than 92 million Americans currently taking them, according to the Cleveland Clinic. Although most survey respondents (76%) aren’t currently taking a statin, 17% of adults ages 25-34 reported using statin therapy, which is an unexpectedly high proportion given their age and the group’s low anticipated risk of cardiovascular disease.

Side Effects of Statins

Among those taking statins, which are considered a first-line treatment for treating high cholesterol and reducing heart disease risk, 54% reported experiencing side effects, particularly muscle pain (23%) and fatigue (31%). However, taking statins can also affect levels of Coenzyme Q10 (CoQ10), which supports cellular energy and cardiovascular function.

All About CoQ10

Cells use CoQ10 to produce energy and detoxify. Studies have shown people with heart failure who took CoQ10 had around a 50% reduction in mortality. Despite this, awareness is low. Nearly two-thirds (66%) of respondents had never heard of CoQ10 and that number jumps to 76% of adults ages 25-34. Additionally, only a small percentage of respondents (8%) who were on a statin reported having their CoQ10 level tested.

“We have a real opportunity to help younger adults take a more proactive approach to heart health,” Elliott said. “CoQ10 plays a critical role in cellular energy production and heart muscle function, and it can decline with age and statin use.”

If you’re among the 71% of survey respondents who expressed a willingness to learn more about improving your heart health, talk with your health care provider and visit DoctorsBest.com to learn more.

Strategies to Support Heart Health

While some risk factors for heart disease, like age and family history, are out of your control, you can make lifestyle changes to help lower your risk:

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  • Eat Whole Foods: A heart-healthy eating plan includes plenty of lean proteins as well as fruits, vegetables, beans, whole grains and foods high in omega-3s, such as salmon, nuts and plant oils.
  • Know Your CoQ10 Levels: If you’re low, look for a high-quality, bioavailable formula, like Doctor’s Best High Absorption CoQ10 with BioPerine, which supports energy production and muscle function.
  • Get Moving: The American Heart Association recommends 150 minutes of moderate-intensity or 75 minutes of vigorous aerobic activity per week to help control weight and lower the risk for conditions that negatively impact the heart.

Photo courtesy of Shutterstock (woman with hand over chest)

    

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Our Lifestyle section on STM Daily News is a hub of inspiration and practical information, offering a range of articles that touch on various aspects of daily life. From tips on family finances to guides for maintaining health and wellness, we strive to empower our readers with knowledge and resources to enhance their lifestyles. Whether you’re seeking outdoor activity ideas, fashion trends, or travel recommendations, our lifestyle section has got you covered. Visit us today at https://stmdailynews.com/category/lifestyle/ and embark on a journey of discovery and self-improvement.


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Children can be systematic problem-solvers at younger ages than psychologists had thought – new research

Child psychologists: Celeste Kidd’s research challenges long-standing ideas from Jean Piaget about children’s problem-solving abilities. Her findings show that children as young as four can independently utilize algorithmic strategies to solve complex tasks, contradicting the belief that systematic logical thinking develops only after age seven. This insight highlights the importance of nurturing algorithmic thinking in early education.

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Children can be systematic problem-solvers at younger ages than psychologists had thought – new research
How do kids figure out how to sort things by order? Celeste Kidd

Celeste Kidd, University of California, Berkeley

I’m in a coffee shop when a young child dumps out his mother’s bag in search of fruit snacks. The contents spill onto the table, bench and floor. It’s a chaotic – but functional – solution to the problem.

Children have a penchant for unconventional thinking that, at first glance, can look disordered. This kind of apparently chaotic behavior served as the inspiration for developmental psychologist Jean Piaget’s best-known theory: that children construct their knowledge through experience and must pass through four sequential stages, the first two of which lack the ability to use structured logic.

Piaget remains the GOAT of developmental psychology. He fundamentally and forever changed the world’s view of children by showing that kids do not enter the world with the same conceptual building blocks as adults, but must construct them through experience. No one before or since has amassed such a catalog of quirky child behaviors that researchers even today can replicate within individual children.

While Piaget was certainly correct in observing that children engage in a host of unusual behaviors, my lab recently uncovered evidence that upends some long-standing assumptions about the limits of children’s logical capabilities that originated with his work. Our new paper in the journal Nature Human Behaviour describes how young children are capable of finding systematic solutions to complex problems without any instruction. https://www.youtube.com/embed/Qb4TPj1pxzQ?wmode=transparent&start=0 Jean Piaget describes how children of different ages tackle a sorting task, with varying success.

Putting things in order

Throughout the 1960s, Piaget observed that young children rely on clunky trial-and-error methods rather than systematic strategies when attempting to order objects according to some continuous quantitative dimension, like length. For instance, a 4-year-old child asked to organize sticks from shortest to longest will move them around randomly and usually not achieve the desired final order.

Psychologists have interpreted young children’s inefficient behavior in this kind of ordering task – what we call a seriation task – as an indicator that kids can’t use systematic strategies in problem-solving until at least age 7.

Somewhat counterintuitively, my colleagues and I found that increasing the difficulty and cognitive demands of the seriation task actually prompted young children to discover and use algorithmic solutions to solve it.

Piaget’s classic study asked children to put some visible items like wooden sticks in order by height. Huiwen Alex Yang, a psychology Ph.D. candidate who works on computational models of learning in my lab, cranked up the difficulty for our version of the task. With advice from our collaborator Bill Thompson, Yang designed a computer game that required children to use feedback clues to infer the height order of items hidden behind a wall, .

The game asked children to order bunnylike creatures from shortest to tallest by clicking on their sneakers to swap their places. The creatures only changed places if they were in the wrong order; otherwise they stayed put. Because they could only see the bunnies’ shoes and not their heights, children had to rely on logical inference rather than direct observation to solve the task. Yang tested 123 children between the ages of 4 and 10. https://www.youtube.com/embed/GlsbcE6nOxk?wmode=transparent&start=0 Researcher Huiwen Alex Yang tests 8-year-old Miro on the bunny sorting task. The bunnies are hidden behind a wall with only their sneakers visible. Miro’s selections exemplify use of selection sort, a classic efficient sorting algorithm from computer science. Kidd Lab at UC Berkeley.

Figuring out a strategy

We found that children independently discovered and applied at least two well-known sorting algorithms. These strategies – called selection sort and shaker sort – are typically studied in computer science.

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More than half the children we tested demonstrated evidence of structured algorithmic thinking, and at ages as young as 4 years old. While older kids were more likely to use algorithmic strategies, our finding contrasts with Piaget’s belief that children were incapable of this kind of systematic strategizing before 7 years of age. He thought kids needed to reach what he called the concrete operational stage of development first.

Our results suggest that children are actually capable of spontaneous logical strategy discovery much earlier when circumstances require it. In our task, a trial-and-error strategy could not work because the objects to be ordered were not directly observable; children could not rely on perceptual feedback.

Explaining our results requires a more nuanced interpretation of Piaget’s original data. While children may still favor apparently less logical solutions to problems during the first two Piagetian stages, it’s not because they are incapable of doing otherwise if the situation requires it.

A systematic approach to life

Algorithmic thinking is crucial not only in high-level math classes, but also in everyday life. Imagine that you need to bake two dozen cookies, but your go-to recipe yields only one. You could go through all the steps of making the recipe twice, washing the bowl in between, but you’d never do that because you know that would be inefficient. Instead, you’d double the ingredients and perform each step only once. Algorithmic thinking allows you to identify a systematic way of approaching the need for twice as many cookies that improves the efficiency of your baking.

Algorithmic thinking is an important capacity that’s useful to children as they learn to move and operate in the world – and we now know they have access to these abilities far earlier than psychologists had believed.

That children can engage with algorithmic thinking before formal instruction has important implications for STEM – science, technology, engineering and math –education. Caregivers and educators now need to reconsider when and how they give children the opportunity to tackle more abstract problems and concepts. Knowing that children’s minds are ready for structured problems as early as preschool means we can nurture these abilities earlier in support of stronger math and computational skills.

And have some patience next time you encounter children interacting with the world in ways that are perhaps not super convenient. As you pick up your belongings from a café floor, remember that it’s all part of how children construct their knowledge. Those seemingly chaotic kids are on their way to more obviously logical behavior soon.

Celeste Kidd, Professor of Psychology, University of California, Berkeley

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Child Health

Your Child’s Oral Health: A Foundation for Better Overall Health

Good oral health is essential for children, and Medicaid and CHIP provide accessible dental coverage to eligible families, covering services like cleanings and fillings. Regular dental visits starting at age one can prevent cavities and build healthy habits. Families can check eligibility and find dentists through InsureKidsNow.gov.

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(Feature Impact) Good oral health sets the stage for a lifetime of healthy smiles and better overall health. Medicaid and the Children’s Health Insurance Program (CHIP) help eligible families access affordable and comprehensive care for their children and teens, including regular cleanings, fillings, X-rays, and more to help ensure that eligible kids have access to essential dental services. By practicing good dental habits and seeing a dentist regularly, children can avoid dental problems and maintain healthy smiles as they grow.

Dental Coverage Available Through Medicaid and CHIP

If you’re looking for affordable dental coverage, your child may qualify for free or low-cost health insurance through Medicaid and CHIP. Together these programs cover more than 36 million children nationwide.

Enrollment is open year-round, and many families qualify even if they don’t realize it. Beyond dental care, Medicaid and CHIP also cover preventive health services, emergency care, vision care, prescriptions, and mental and behavioral health services for eligible children.

To see if your family is eligible and to find dentists in your area who accept Medicaid and CHIP, visit InsureKidsNow.gov and explore the “Find a Dentist” tool.

Start Good Dental Habits Early

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Regular dental visits are an important part of your child’s oral health routine. Children should see a dentist by the age of 1 and continue with visits twice a year (every six months) as they get older. Going to checkups on a regular schedule can help catch problems early or before they even start. Cavities (also known as tooth decay) are the most common preventable chronic disease among children in the United States, and more than half of all children have cavities by the time they’re 6 to 8 years old. When left untreated, cavities can cause pain and infections that may affect eating, speaking, playing, learning – and even mental health.

The dental visit will vary depending on your child’s age and milestones, but it can include cleanings, full teeth and gum exams, treatments, and guidance on caring for your child’s teeth. Dental visits also help children become comfortable with the dentist, reducing anxiety, and building a positive relationship with oral health care that will benefit them throughout their lives.

Enrolling in CHIP and Medicaid

Medicaid and CHIP provide free or low-cost health coverage to eligible families and children. You can apply online, by phone, by mail, or in person directly at your state’s Medicaid agency. Learn more at InsureKidsNow.gov.

Provided by the U.S. Department of Health and Human Services at U.S. taxpayer expense.

Photos courtesy of Shutterstock

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Our Lifestyle section on STM Daily News is a hub of inspiration and practical information, offering a range of articles that touch on various aspects of daily life. From tips on family finances to guides for maintaining health and wellness, we strive to empower our readers with knowledge and resources to enhance their lifestyles. Whether you’re seeking outdoor activity ideas, fashion trends, or travel recommendations, our lifestyle section has got you covered. Visit us today at https://stmdailynews.com/category/lifestyle/ and embark on a journey of discovery and self-improvement.

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