Complementary and Alternative Treatments for Narcolepsy
Narcolepsy is a chronic sleep disorder that disrupts your wake-sleep pattern and brings about overwhelming drowsiness and periods of sudden sleep attacks during the daytime. The complex, lifelong condition affects 1 in 2,000 people but it often goes undiagnosed. There’s no cure for narcolepsy but medications and certain lifestyle changes may help manage the symptoms.
For some people with narcolepsy, conventional Western medication alone may not be enough to ease the day-to-day symptoms, which can take a toll on quality of life. Some choose to include complementary medicine or turn to alternative medicine to manage their condition.
Complementary medicine includes approaches that you take along with traditional Western medicine. While alternative medicine focuses on approaches you may take instead of conventional medicine your doctor uses. In some cases, your doctor may choose to combine different approaches to get the best results. This is called integrative medicine.
For narcolepsy, this can range from lifestyle changes, melatonin supplements, and natural herbal extracts to trying yoga or acupuncture for a better wake-sleep cycle.
Searching for an Alternative
For Gina Dennis, 49, intense sleepiness was something she struggled with since she was a teenager. Getting out of bed each morning was an ordeal. It was something she shared in common with her mother. When her mother got diagnosed with narcolepsy later in life, Dennis decided to get checked out as well. Soon after, Dennis who was in her late 30s by then, was also diagnosed with narcolepsy.
Her doctor put her on a regimen of drugs to help her stay awake through the day. But the drugs didn’t work as well as the Dallas native had hoped. But when her teenage son started to show symptoms, she came to find out that narcolepsy ran in her family. Turns out, her son and ex-husband also had the same sleeping disorder.
“It was breaking my heart, so we eventually got [my son] diagnosed. But here he is, a teenager, and he’s looking at a lifetime of medications. It just didn’t seem good enough for me. So, I started to do some research,” Dennis says.
She went down the internet rabbit hole and stumbled upon another blogger who suggested the ketogenic diet to curb the daytime sleepiness. She decided to give it a try. In the ketogenic diet, the idea is to focus on getting your calories from high fat and moderate amounts of protein foods and cut back on most carbohydrates like sugar, bread, and pasta. It can be quite restrictive.
Dennis says she saw changes within a week. “I had a level of wakefulness that I had never had before, not even with the medication, it was cleaner, it didn’t feel a buzz as some of the medications I had been taking,” Dennis says. In fact, over time, she stopped taking her medications altogether.
It’s been about 10 years since Dennis and her family started making dietary changes. While it’s helped bring a lot of the symptoms under control, she’s quick to add that it’s not a cure-all.
“I’m not saying I don’t have symptoms because I do. But what I found through this entire journey is that diet is one component, the other component is some lifestyle changes.”
Alternative and Complementary Treatments
If you’re looking to try out or take on complementary or alternative approaches to manage your day-to-day narcolepsy symptoms, there are a few ways to go about it.
Yoga and meditation. A few studies point out that certain yoga positions can bring about relaxation, ease anxiety, and help with sleep issues. This may be because of its meditative properties such as breathing in and out and taking in the moment.
However, not all types of yoga are beneficial, says Rubin Naiman, PhD, a psychologist, sleep and dream specialist and clinical assistant professor of medicine at the University of Arizona Center for Integrative Medicine.
“I think yoga is helpful for anybody and everybody, because it really helps refashion our relationship with the body,” Naiman says. “There are 10 ways to do yoga, and not all are helpful. But when it’s done right, it’s almost like a friendly dialogue with our body.”
If you’re looking to try yoga to help you relax and sleep better at night, keep these things in mind:
Find the right style of yoga. Hot yoga or vinyasa yoga require movements that will raise your heart rate. Doing this before bed will make your sleep worse. Instead, choose a relaxing technique.
Set the scene for yoga and meditation. You can dim the light, put on soft, soothing music, and find a space to stretch out in comfy clothes.
Focus on breathing. Pay attention to taking your breath in and out through your nose and mouth. This can be therapeutic and help you de-stress before you get to bed.
Don’t push yourself too hard. Do only what you physically tolerate. You can work your way up over time.
Herbal remedies. Research shows that certain herbs can induce or regulate sleep. You can add them to beverages like tea or take them as supplements. For example, chamomile flower used in teas may help with poor sleep issues. The flower has several chemical compounds like apigenin that can have a mild tranquilizing effect. However, there needs to be more research done on chamomile’s effectiveness for conditions like narcolepsy. Some people are allergic to chamomile so it’s best to try in small amounts first.
Valerian root has natural sedative properties and has long been used as a sleep aid to help ease issues like stress, anxiety or headaches that disrupt your sleep cycle. But clinical trials on valerian root’s effects have had inconsistent results. Experts aren’t sure what effects long-term use may have on your body.
Other herbs used to improve sleep problems include passion flower, kava, red ginseng, lemon balm, and hops. If you’re taking prescription drugs, it’s important to note that certain herbs can interact with other drugs or cause side effects. It’s always a good idea to tell your doctor before you try any herbal remedies or supplements.
Melatonin. Your body naturally makes melatonin around 4 hours before you got to sleep. It’s triggered when your body’s exposure to light reduces naturally at night. But if you have narcolepsy, your sleep/wake cycle may not be properly regulated. Research shows that taking melatonin supplements can help regulate and induce sleep, increase rapid eye movement (REM) sleep time, and improve sleep quality. You can buy melatonin in pill form over the counter. If you’re not sure how much you take, ask the pharmacist or your doctor.
Lifestyle changes. When you have narcolepsy, one of the symptoms includes falling asleep or feeling excessively drowsy involuntarily during the day. This can be dangerous if you’re driving or out and about in public. To reduce the intense sleepiness during the day and sleep better at night, you can:
Schedule small, regular naps during the day.
Stick to a bedtime routine. Try to go to bed at the same time each night and wake up at the same time, too.
Reduce any distractions in the room where you sleep at night.
Don’t eat large meals for dinner before sleep.
Exercise regularly to help you stay awake and alert during the day. But don’t work out or push yourself too much 2 hours before you go to bed.
Cognitive behavioral therapy (CBT). This type of psychological treatment attempts to change your thinking patterns. This may help you cope with symptoms for several health conditions, including narcolepsy. Naiman says it’s especially helpful for people who have cataplexy, a core symptom in which you may have a sudden muscle weakness and collapse. It can be triggered by emotions like laughter, surprise, or negative things like stress and anxiety.
“When people begin to have symptoms of cataplexy, there is a reaction of anxiety like, ‘oh God, I’m about to fall off,’ and then the anxiety spirals into this adversarial relationship with narcolepsy,” Naiman says. “With CBT, we talk about meeting cataplexy in a mindful way. It’s about understanding that if I tense up each time, it makes the cataplexy worse.”
For some patients, Naiman says he uses CBT to help them consciously work through a narcolepsy episode when it comes on. This helps them learn skills to handle it better the next time they have a sudden episode.
CBT may include learning other strategies like:
Learning how to use problem-solving skills to manage difficult situations
Evaluating thoughts and experiences in a realistic way
Developing confidence
If you plan to try CBT, ask your doctor or a psychologist if it’s right for you.
Acupuncture. As part of traditional Chinese medicine, acupuncture practitioners insert thin needles at specific points on your body. The idea is for the needles to stimulate certain pressure points that bring about pain relief and reduce narcolepsy symptoms like headache. However, researchers say there’s not enough evidence to know if it helps with sleep problems.
Acupuncture is relatively safe if it’s done by someone who’s experienced. However, if it’s done incorrectly, nonsterile needles can cause infections or other dangerous health problems. If you’re going to try acupuncture, make sure to visit an experienced acupuncturist.
Emotional freedom technique (EFT). Similar to acupuncture, EFT is a simple, self-therapeutic manual tapping therapy used to relieve stress and anxiety. To do it, you have to tap certain meridian points on your face and body while saying out loud whatever is concerning you to work through distressing situations or the onset of anxiety or depression. It combines other psychological therapies like talk therapies, exposure therapy, and cognitive behavioral therapy. It promotes self-acceptance.
It was founded in the 1995 and the idea behind the tapping is that it stimulates the pressure points to signal the brain and the central nervous system to release chemicals to ease stress or fear.
While there are few studies that show EFT’s effects and benefits psychologically, there is limited evidence if it positively impacts physical health to improve conditions like narcolepsy and others. But EFT is safe, harmless, and a cheap, affordable option you can use anywhere if you want to calm your emotions and center yourself.
Things to Be Aware of Before You Try Complementary or Alternative Medicine
Most complementary and alternative treatments like yoga or EFT are safe to use and harmless. But not all alternative medicine options, particularly herbal remedies, products, and supplements, are safe even if they are “natural.”
Many herbs or over-the-counter supplements may interact or suppress prescription medication you may be taking and may cause dangerous side effects. The FDA does not regulate dietary supplements like it oversees and regulates prescription drugs.
Thinking about trying a complementary or alternative medicine or product for narcolepsy?
Talk to your doctor about it. Ask if it will affect or interact with any drugs you may be taking for narcolepsy or other conditions you may have. Tell them if you’re planning to use a certain product or technique. This will help them get a full picture of your health and medical history when they treat you.
Look up potential side effects or safety for long-term use before you try any herbs. If you’re not sure, ask your doctor about it.
If you’re pregnant or planning to get pregnant, ask your doctor before trying something new.
Ask your health insurance provider if they cover complementary or alternative treatment options like CBT or acupuncture. This may help avoid any surprise bills or expenses.
Talk to your doctor before you cut back or stop taking your prescription drugs or treatments.
If you experience side effects or an allergic reaction from certain products or supplements, get medical attention as soon as possible or tell your doctor about it.
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