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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Lifestyle
Saving a Life This Summer: Ways to Step Up Safety Practices
Regardless of where you are, summer is a reminder that emergencies like cardiac arrest can happen anywhere. Take the safety of those around you into your own hands this summer with this checklist.
(Feature Impact) The busy summer season can take you almost anywhere – baseball fields, backyard cookouts, long workdays or road trips across the country. Regardless of where you are, summer is a reminder that emergencies like cardiac arrest can happen anywhere.
More than 350,000 out-of-hospital cardiac arrests occur in the United States each year, and 90% of people will not survive, according to the American Heart Association, a nonprofit organization devoted to changing the future for a world of healthier lives for all. Sudden cardiac arrest can happen anytime, anywhere. People often hesitate to step in. In fact, nearly 2 out of 3 adults believe CPR can only be performed by medical professionals. This mistaken belief can cost lives and contributes to the low survival rate.
Ordinary people have extraordinary power. You don’t need to wear scrubs or have a medical background to save a life – you just need the courage to act.
Take the safety of those around you into your own hands this summer with this checklist.
Plan Ahead
Summer is often a time for welcome disruptions, including vacations, camps, sports and parties. Before traveling or attending events, check if your destination has a cardiac emergency response plan, which establishes specific steps to reduce death from cardiac arrest in any setting, from schools and community organizations to workplaces and sports facilities.
Learn CPR
Cardiac arrest can happen anywhere: at home, at work, in schools, at a soccer game or on vacation. When it happens, the first chance for survival often rests with the people nearby.
Anyone can be the difference before professional help arrives. The power to save a life is in your hands. CPR is a human responsibility, not just a medical skill. When friends, family or even strangers step in during cardiac emergencies, survival rates can double or even triple.
Hands-Only CPR for adults consists of two easy steps:
- Call 9-1-1 or shout for someone else to call.
- Push hard and fast in the center of the chest to the beat of a familiar song that’s 100-120 beats per minute, such as “Stayin’ Alive” by the Bee Gees.
Share Resources with Your Family and Community
Once you’ve learned simple, two-step Hands-Only CPR, share resources with your community to help expand the American Heart Association’s Nation of Lifesavers. Raising awareness with family, neighbors and colleagues can help people feel confident in the face of an emergency.
Families can watch short instructional videos that demonstrate the life-saving steps for adults as well as techniques for infants and children.
Travelers can also get trained in about 5 minutes with a Hands-Only CPR Kiosk, located in many airports and public spaces across the country.
To find more information about learning CPR, visit Heart.org/Nation.
Summer Safety Tips
In addition to learning CPR and sharing valuable resources with your family and community, consider these ways to keep yourself and loved ones safe throughout the summer months.
- Stay Hydrated: High temperatures can quickly lead to dehydration and heat-related illness. Drink water regularly throughout the day, especially during outdoor activities, and pack extra water when away from home.
- Protect Your Skin: Hats, sunglasses and lightweight clothing can protect skin from sun exposure, but it’s important to use broad-spectrum sunscreen and reapply every 2 hours.
- Swim with a Buddy: Hopping in a pool, lake or ocean is a hallmark of summer but can be dangerous without precautions. Never swim alone and ensure children are always supervised by an adult near water.
- Identify the Locations of Safety Equipment: When attending camps, heading to a sporting event or enjoying the pool or beach, identify where lifeguards, AEDs and emergency exits are located. Knowing where to find help can save valuable time when every second counts.
- Practice Grill Safety: Some of your most memorable summer moments may happen during a backyard barbecue or cookout, and it’s important to keep those gatherings safe. Use grills away from homes, decks and dry grass. Never leave them unattended while cooking, and be sure kids and pets stay at a safe distance from hot surfaces.
Saving a Life Within 1 Year of Learning CPR
On a chilly Tuesday, dawn was breaking as Matthew Lynch reached his highway exit, but traffic was backed up at a particular intersection. He waited through three cycles before finally getting close enough to see the holdup: a stalled SUV.
While most cars buzzed by, Lynch moved slowly and peered into the vehicle. He saw people inside and parked his sedan, flipped on the hazard lights and ran to the stalled SUV. As he knocked on the driver’s window, there was no response. The doors were locked. Two people – a male driver and female passenger – were unresponsive.
Lynch ran back to his own car and called 9-1-1 before managing to open the driver’s side door. He discovered the driver was not breathing normally, signaling to Lynch he’d need to start CPR – which he’d learned 10 months earlier during a training session he’d helped organize for a work-sponsored men’s group.
Knowing he had to do something, Lynch started pushing hard and fast in the center of the man’s chest. Within a minute, the man gasped for breath.
Just as Lynch leaned over to see if he could help the female passenger, first responders arrived and Lynch backed away, knowing there was nothing more he could do.
“It was just a lot to take in,” said Lynch, a member of the American Heart Association’s 2026 Nation of Lifesavers Class, a small group of volunteers, dedicated to raising awareness of CPR by sharing their own personal stories of survival or rescue. “Mostly I felt an incredible sense of gratitude that I could help someone.”
A strong admirer of the Good Samaritan parable, Lynch is always on the lookout for the opportunity to help others. He learned a lot about himself in that moment and about the importance of learning CPR, along with the confidence that comes from knowing you could be a lifesaver.
“I quickly realized the certification was way less important than the actual CPR training,” he said. “Your ability to help in any capacity is better than doing nothing. If I hadn’t done that training, I probably would not have helped.”
SOURCE:
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News
How healthy is Sodastream?
The SodaStream Sparkling Water Maker is a device that forces carbon dioxide (CO2) gas (stored under pressure in a cylinder) into water, making it sparkling (fizzy)
Sodastream machines have been gaining popularity in recent years as an alternative to store-bought soft drinks. Not only are they more environmentally friendly, but they also offer several health benefits compared to traditional sodas.
Reduced Sugar Intake
One of the most significant health benefits of using a Sodastream machine is reducing sugar intake. Traditional sodas are loaded with sugar, and excessive sugar intake can lead to weight gain, obesity, and other health problems such as Type 2 diabetes. With a Sodastream machine, you can control the amount of sugar you add to your drink, allowing you to enjoy a refreshing beverage without the harmful effects of excessive sugar consumption.
No Artificial Sweeteners
Many store-bought soft drinks contain artificial sweeteners, which can have negative health effects such as headaches and digestive problems. Sodastream machines, on the other hand, allow you to use natural sweeteners such as fruit extracts, honey or agave nectar, giving you a healthier and more natural alternative.
No Preservatives
Another advantage of using a Sodastream machine is that you can avoid preservatives commonly found in store-bought soft drinks. Preservatives such as sodium benzoate and potassium sorbate have been linked to health problems such as cancer and allergies. By making your own drinks, you can avoid these harmful additives and enjoy a healthier, preservative-free beverage.
Eco-Friendly
In addition to the health benefits, using a Sodastream machine is also environmentally friendly. Traditional soft drinks are packaged in plastic bottles or cans, which contribute to environmental pollution. With a Sodastream machine, you can reuse the same bottle multiple times, reducing waste and helping to reduce your carbon footprint.
Variety
Finally, Sodastream machines offer a wide variety of flavors and options, allowing you to customize your drink to your liking. You can mix and match different flavors or create your own unique blends, giving you a healthier and more enjoyable alternative to traditional sodas.
In conclusion, Sodastream machines offer several health benefits compared to traditional store-bought soft drinks. By reducing sugar intake, avoiding artificial sweeteners and preservatives, and being eco-friendly, they offer a healthier and more sustainable alternative to traditional soft drinks. Moreover, with a wide variety of flavors and options, you can customize your drink to your liking, making it a fun and enjoyable way to stay healthy.
Food and Beverage
Harness Peanut Power for Improved Cognitive Health
A healthy brain goes beyond reading exercises and completing puzzles – it extends to the kitchen, too. Emerging nutritional science is clear that what people eat doesn’t just fuel the body; it shapes memory, mood and cognitive health.
(Feature Impact) A healthy brain goes beyond reading exercises and completing puzzles – it extends to the kitchen, too. Emerging nutritional science is clear that what people eat doesn’t just fuel the body; it shapes memory, mood and cognitive health.
Among the foods you can include in your diet to give your brain a boost are peanuts and peanut butter, staples valued not only for their convenience but also for their cognitive benefits. In fact, a study published in the “Journal of the Prevention of Alzheimer’s Disease” found adults 60-80 years old who did not eat peanuts and peanut butter regularly were 30-50% more likely to perform poorly on tests measuring learning, memory, language, processing motor speed and attentiveness compared to those who did consumer peanuts and peanut butter.
It’s not just the older generation that can benefit. According to research published in “Clinical Nutrition,” a study of college students ages 18-33 showed consumption of peanuts and peanut butter was associated with improved memory function and decreased anxiety, depression and stress.
Consider this key information from the Georgia Peanut Commission before your next meal planning session.
Nutrients that Give the Brain a Boost
Despite their small stature, peanuts pack a nutrition punch. Their unique blend of various vitamins, minerals and bioactive compounds includes:
- Niacin, which can slow cognitive decline and reduce the risk for Alzheimer’s disease, according to the “Journal of Neurology, Neurosurgery and Psychiatry”
- Vitamin E, found to promote healthy brain aging and delay cognitive decline
- Resveratrol, believed to be beneficial in fighting against Alzheimer’s disease and other nerve degenerating diseases, per the “Journal of Biological Chemistry”
- P-coumaric acid, an antioxidant that appears to target the neurotransmitters in the brain that regulate mood, stress and anxiety
Peace of MIND
Peanuts are included in the MIND diet, a combination of the Mediterranean and DASH diets, which specifically includes foods shown to benefit the brain.
Adding peanuts to your menu can be a breeze. Look no further than a powerful main course like Crunchy and Creamy Cold Green Pea and Peanut Salad, a perfect accompaniment at potlucks and cookouts as an easy side or light main course.
Brain Food for Thought
Supporting your brain starts with the right nutrition, and evidence makes clear peanuts and peanut butter should be top-of-mind as you head to the grocery store. For help getting started, find more recipes and nutritional information by visiting GAPeanuts.com.
Crunchy and Creamy Cold Green Pea and Peanut Salad
Recipe courtesy of The Peanut Institute
Servings: 8
Dressing:
- 1/3 cup sour cream
- 1 1/2 tablespoons mayonnaise
- 2 teaspoons apple cider vinegar
- 2 teaspoons sugar
Salad:
- 1 package (20 ounces) green peas, frozen
- 1 cup celery, chopped
- 1/3 cup red onions, chopped
- 1 cup dry roasted peanuts
- 6 slices thick cut bacon, cooked and crumbled
- 1 pinch salt, or to taste
- 1 pinch freshly ground black pepper, or to taste
- To make dressing: In small mixing bowl, whisk sour cream, mayonnaise, apple cider vinegar and sugar.
- To make salad: In large mixing bowl, combine frozen green peas, celery and onion. Pour dressing over salad and toss to combine. Refrigerate at least 2 hours.
- Before serving, stir in roasted peanuts and crumbled bacon. Season with salt and freshly ground black pepper.
Nutritional information per serving: 230 calories, 17 g carbohydrates, 12 mg cholesterol, 3 g saturated fat, 9 g unsaturated fat, 5 g fiber, 11 g protein, 249 mg sodium, 6 g sugar, 1 g added sugar.
SOURCE:
STM Daily News’ Food and Drink section highlights the stories, trends, flavors, and events shaping today’s food culture. From recipes to restaurant news, it keeps readers connected to what’s fresh and worth tasting.
