Manage Narcolepsy Symptoms: 9 Ways to Get Your Life Back
Excessive sleepiness, hallucinations and sleep paralysis are all characteristics of narcolepsy, a chronic neurological disorder that makes it difficult for the brain to control sleep-wake cycles. (1) This disorder adversely affects the quality of life as symptoms include extreme drowsiness and falling asleep unwillingly during an activity like work or school.
In fact, research indicates after diagnosis, the burden extends beyond the life-altering physical symptoms and includes an adverse impact on mental health as well as economic worries due to work impairment and absenteeism. Presenteeism, a recognized term for workers not fully present and high-functioning due to a medical condition or illness, is also acknowledged for individuals with this condition. (2, 3)
The National Institute of Health estimates that somewhere between 135,000 and 200,000 people in the United States have this neurological disorder, but warn that this complicated neurological condition often goes undiagnosed, or is simply misdiagnosed and that the estimation of cases may be significantly higher.
Symptoms including overwhelming fatigue and sleepiness, often start during childhood or adolescence, but individuals of any age can be affected by this life-long illness. There is no cure for this disorder, and even researchers agree that currently available conventional treatments are “imperfect,” and more research is needed. (4)
One of the leading researchers is Dr. Emmanuel Mignot from the Stanford Center for Narcolepsy. The Stanford University team has found that this condition is an autoimmune disease that can follow a case of the flu and they are continually striving to discover which immune cells are responsible for the attack, with the goal of stopping or preventing this disease from developing.
Managing the symptoms can help to improve quality of life. Effective natural treatments that support physical and mental wellness include exercise, supplements, a healthy diet free from allergens, and lifestyle changes — even something as simple as a mid-day nap can help. Finding the right treatment for children and adults alike and learning effective coping mechanisms is imperative.
What Is Narcolepsy?
Narcolepsy is a chronic sleep disorder that can dramatically disrupt life and daily routines. This condition makes it very difficult to stay awake for long periods — regardless of the occasion or circumstances. Individuals may fall asleep while driving, during an examination at school, during a meeting a work, while cooking a meal or participating in a team sport.
Cataplexy is fairly common and often co-occurs with this neurological condition. This condition causes uncontrollable muscle paralysis or weakness that seems to be triggered by strong emotions, generally happy ones. When cataplexy strikes, a person may be laughing with friends and, all of a sudden, their knees buckle, or they become unable to move their face, arms or legs. Episodes such as this often only last a couple of moments, but when the episode is over the person may fall asleep unexpectedly. (5)
Narcolepsy Signs & Symptoms
This neurological condition affects everyone differently. Not every individual with this disease will experience all of the following signs and symptoms. According to the Mayo Clinic, common symptoms include: (6)
- Excessive daytime sleepiness that can lead to falling asleep unwillingly, even during an activity like driving or working.
- Sleep paralysis can occur just before falling asleep or upon waking. Persons may be temporarily unable to speak or move for a brief period. This is frightening, particularly for young children and teens.
- Hallucinations while falling asleep and upon waking can be particularly vivid and terrifying. In essence, the hallucinations make it feel like a dream is reality.
- Snoring caused by obstructive sleep apnea in which the muscles in the throat relax and block the airway during sleep.
- Involuntary and persistent movements in the legs, called restless leg syndrome.
- Brain fog, poor memory, lack of mental focus and poor cognitive functioning is common.
- Lack of physical energy.
- Poor sleep quality and insomnia.
- Sudden onset of muscle weakness called cataplexy where paralysis might affect the face, hands, legs, arms and core. This is generally brought on by experiences when emotions run high and the episodes typically last only a few moments.
- Tongue sticking out
- Half-closed eyes
- Unsteady gait
Narcolepsy Causes & Risk Factors
Many theories as to the cause exist, and yet researchers still remain united that a definitive cause has not been identified.
- Low levels of hypocretin in the brain. This chemical is essential for healthy sleep-awake patterns. Hypocretin is also responsible for other functions in the brain including the production of serotonin, dopamine and norepinephrine. When these levels are altered the result can be depression and mood disorders, which are common with this condition.
- Heredity. Up to 10 percent of people may inherit a gene that affects hypocretin.
- Low levels of histamine in the blood.
- Certain brain injuries including tumors, stroke and trauma.
- Exposure to certain environmental toxins like heavy metals, pesticides, weed killers and smoke.
- Autoimmune disorders like rheumatoid arthritis, lupus, or celiac disease.
- Women are more likely than men to develop narcolepsy.
- Previous exposure to the H1N1 virus (swine flu).
- Vitamin D deficiency.
The vaccine, Pandemrix, used in Northern Europe in 2009, has since been associated with the development of this neurological condition. The vaccine is no longer on the market and was never used in the United States.
This condition is diagnosed by a thorough physical examination and sleep history; providing a diary or record of your sleep patterns may help to facilitate diagnosis. Likewise, one or more sleep studies may be ordered. These studies are not painful and take place in a clinical setting where electrodes are placed on the scalp and body to measure brain activity, hearing, breathing, muscle and eye movements. Also, sleep patterns, how quickly you fall asleep and how quickly you enter REM sleep will be observed.
While there is no cure for narcolepsy, conventional treatment focuses on certain medications and behavioral treatments to improve the quality of life. It is important to note that the medications mask the symptoms of sleepiness; they do not treat the underlying cause. Common medications prescribed after diagnosis include: (11)
Stimulants: Including Provigil, Nuvigil, Ritalin and other amphetamines or amphetamine-like drugs. Possible side effects include heart palpitations, addiction, headaches and nervousness.
Selective Serotonin Reuptake Inhibitors (SSRIs) and SNRs: Including Prozac, Sarafem, Selfemra and Effexor. These drugs are prescribed to suppress REM sleep, alleviate cataplexy symptoms and hallucinations. Possible side effects include weight gain, sexual dysfunction and digestive upset.
Tricyclic Antidepressants: Depression is common after diagnosis and this classification of antidepressants may also help cataplexy symptoms. Commonly prescribed antidepressants include Vivactil, Tofranil, and Anafranil. Possible side effects include dry mouth and being light-headed.
Sodium Oxybate (Xyrem): For cataplexy symptoms, Xyrem is considered effective and may help to improve sleep quality. Side effects are fairly common and include nausea, bed-wetting, and worsening sleep-walking. Several dangerous interactions can occur and your physician must be aware of any alcohol consumption and any other sleep medications or narcotic pain relievers you are taking.
Treating a child or adolescent with conventional medications is a challenge as many of the medications prescribed to adults can cause serious health effects, including abnormal growth patterns. Additionally, pregnant women with this condition must be mindful of medications as rare complications including congenital abnormalities may occur. (12)
9 Natural Treatments for Narcolepsy
- Embrace your natural sleep cycle.
- Vitamin D
- Talk therapy/support groups
- Eat a healthy diet.
- Vitamin B12
- Lifestyle therapies
1. Embrace Your Natural Sleep Cycle. With narcolepsy, it is hard to remain awake during daytime hours, even while working or going to school. Recognize your natural cycle and schedule power naps. According to the Mayo Clinic, planning short naps at routine intervals may reduce sleepiness and be refreshing for one to three hours. (13)
As this condition is not curable, it is really critical to learn your sleep cycle and start to adapt with effective coping mechanisms. For adults, this may mean taking a nap during a lunch hour at work, and one after work prior to commuting home. Or, it may mean finding a position with a company that allows you to work from home.
For children, this disease can present significant challenges at school. It is common to fall asleep during class, gym and even lunch causing bullying and isolation from other children and even teachers who do not understand this condition. Educate teachers and staff about the condition and work closely to ensure the child feels safe to share their needs with you and their counselor or teachers.
2. Vitamin D. A small study found a higher frequency of vitamin D deficiency in patients with narcolepsy with cataplexy that in the general population. It is commonly recognized that a vitamin D deficiency is linked to fatigue and pain. Supplementing with a high-quality vitamin D-3 supplement may help with symptoms.
In addition to increasing vitamin D through supplementation and foods, getting direct sunlight is essential. A good guideline to follow is 10 to 15 minutes each day of direct sunlight (no sunscreen) for light and medium-skinned individuals and 30 minutes or more for darker-skinned individuals. (14, 15)
3. 5-HTP. In a small double-blind crossover study patients with narcolepsy with cataplexy were given 600 milligrams a day of 5-HTP or a placebo for four weeks. At the end of the study, there was a marked decrease in the duration of daytime sleep and a significant increase of the duration in nighttime sleep. (16)
Please note: This is a very high dose and 5-HTP can cause side effects and interact with many commonly prescribed medications for this condition. It should never be given to children or pregnant women. Talk to your physician before taking this supplement.
4. Exercise. Even 20 minutes each day of light-to-moderate exercise can help to relieve common symptoms including depression, brain fog and poor sleep quality. Do not participate in exercise activities that can cause injury if you fall asleep, and exercising with a buddy is highly recommended.
Walking, Pilates and yoga are all great options and can be done by both children and adults. Yoga can help to reduce anxiety while also improving focus, cognition, flexibility and strength. If you have a burst of energy and want to take part in a more strenuous activity, tennis or basketball can be beneficial. If you have cataplexy, be mindful that intense emotions felt during a team sport can lead to an episode. (17)
5. Omega-3s. According to a systematic review and meta-analysis of clinical trials published in Neuropsychopharmacology, supplementing omega-3 fatty acids in children and teens can make the symptoms of ADHD, typical with a narcolepsy diagnosis, more manageable. In fact, the studies show that omega-3 supplementation can help with cognitive function and performance as well as other symptoms. (18)
In addition to adding a high-quality supplement, consuming more omega-3 rich foods like wild-caught salmon, sardines, mackerel, grass-fed beef and dairy, flaxseed and walnuts can help. Omega-3s are considered safe for children and adults, including pregnant women.
6. Talk Therapy/Support Groups. Narcolepsy is a life-long disorder that disrupts everyday life. It can cause severe hallucinations, depression and anxiety. Learning effective coping mechanisms and discussing the frustrations and fears with others who understand the challenges can help. (19)
Children and teens are particularly susceptible to depression and anxiety and can benefit from support groups and talk therapy. Extreme tiredness, a lack of motivation, feelings of isolation and bullying are common at school and in social groups. (20)
According to the University of Maryland Medical Center, somewhere between 30 percent and 57 percent of those with this condition have depression. Treating depression effectively must be a top priority with any treatment plan. (21)
7. Healthy Diet. A low-carbohydrate diet may help symptoms. It is important to recognize food intolerances and eliminate any foods that cause a negative reaction. An elimination diet may help to pinpoint foods to avoid. Common allergens include wheat, conventional dairy, corn, chocolate and soy. For those with this condition, it is recommended to avoid sugar, alcohol and caffeine as these substances cause a rise and fall of energy that can worsen symptoms.
A note about a healthy diet and children: According to a study published in CNS Neuroscience & Therapeutics, obesity affects more than 50 percent of narcoleptic children, particularly those with early onset of the disease. Obese children in the study had lower sleep quality, higher levels of apnea, were more tired and missed more days of school than their non-obese counterparts. (22)
While the study did not draw conclusions as to the cause of the obesity, keep in mind the depression, anxiety, social isolation and fatigue young children experience. They have a more difficult time communicating with parents, health care workers and their peers about this condition. Exercise, a healthy diet and talk therapy should be encouraged.
8. Vitamin B12. To improve memory, mood and energy, increasing consumption of vitamin B12 foods or adding a high-quality supplement is essential. The Recommended Daily Allowance (RDA) for vitamin B12 according to the National Institutes of Health is: (23)
Life Stage Recommended Amount
Birth to 6 months 0.4 micrograms
Infants 7–12 months 0.5 micrograms
Children 1–3 years 0.9 micrograms
Children 4–8 years 1.2 micrograms
Children 9–13 years 1.8 micrograms
Teens 14–18 years 2.4 micrograms
Adults 2.4 micrograms
Pregnant teens and women 2.6 micrograms
Breastfeeding teens and women 2.8 micrograms
In addition to supplementation, increasing vitamin B12-rich foods can help. At the top of the list is beef liver, and while generally not the most popular menu item, particularly for kids and teens, a single ounce contains 20 micrograms — far more than the recommended amount. Other more palatable options include lamb, wild-caught salmon, grass-fed beef, cottage cheese and eggs.
9. Lifestyle Therapies. In addition to a healthy diet, exercise and talk therapy, acupuncture and massage may be beneficial for both children and adults. Acupuncture and massage have been shown to reduce stress, improve sleep, reduce anxiety and depression and may help to improve cognitive function. (24, 25, 26)
Aromatherapy is known to reduce chronic stress, fatigue and may improve sleep. Diffusing lavender essential oil before bedtime can help relieve anxiety and may contribute to improving sleep quality and promote relaxation. (27)
Falling asleep while working, driving, cooking or participating in activities like cycling can cause physical harm to yourself and others. People with this condition often experience falls, cuts and burns; if you fall and hit your head, be sure to consult with a physician to rule out a concussion.
Common complications of this condition include: (28)
- Weight gain and obesity-related to medications, inactivity, social isolation, depression and binge-eating.
- Low sex drive due to medications, fatigue and depression.
- Poor grades for children and teens in school.
- Poor performance reviews for working adults.
- Struggles within intimate relationships due exhaustion and fear of cataplexy during an intimate moment.
- Feelings of isolation as the fear of falling asleep, a cataplexy episode, or sleep paralysis during a party, movie or other social event is too much to manage.
- Poor memory and attention due to fatigue.
- Narcolepsy is a chronic neurological disorder that has no cure, and no definitive cause has been recognized.
- It often strikes during childhood or early adolescence but can arise at any time.
- The hallmark symptom is the inability to stay awake, even during an activity like cooking or driving.
- Other symptoms include severe hallucinations, sleep-walking, sleep paralysis and, for some, cataplexy.
- Children and teens have a difficult time explaining what narcolepsy is to their peers and teachers; facilitate this communication as much as possible to alleviate the misconception that they are lazy.
- Some of the symptoms, including sleep paralysis and hallucinations, can be terrifying, particularly for children. Learning to manage the emotions and fears around this condition is essential from an early age.
9 Natural Ways to Manage Narcolepsy
- Embrace your natural sleep cycle.
- Vitamin D
- Talk therapy/support groups
- Eat a healthy diet.
- Vitamin B12
- Lifestyle therapies
Kathleen McCoyDr. AxeNovember 1, 2017