Narcolepsy is a neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. It is characterized by excessive daytime sleepiness, sudden and uncontrollable sleep attacks, and cataplexy (sudden loss of muscle tone). Narcolepsy is a chronic condition that can significantly impair an individual’s ability to function in daily life, affecting their work, education, and personal relationships. Although the exact cause of this health disorder is not fully understood, it is believed to be related to a deficiency of the neurotransmitter hypocretin, which helps regulate wakefulness and REM sleep. While there is no cure for narcolepsy, various treatments, such as medications and lifestyle changes, can help manage its symptoms and improve quality of life.
The prevalence of narcolepsy varies across different populations and regions of the world. In the United States, it is estimated to affect approximately 1 in 2,000 people, or about 0.05% of the population. However, the prevalence may be higher in certain ethnic groups, such as African Americans and Japanese. Additionally, many cases of the disease go undiagnosed, so the actual number of people affected may be higher than reported. Problem might occur at any age, but it often begins in adolescence or early adulthood and persists throughout life.
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Causes and symptoms of narcolepsy and how it affects people lives
People with this type of health disorder face a variety of challenges that can significantly impact their daily lives. There are some tips we provide on our website but it’s highly recommended to seek for a professional help if you have any of those.
1. Daytime sleepiness
Some of the most common symptoms of narcolepsy include excessive daytime sleepiness, that causes a persistent feeling of tiredness, even after getting enough sleep at night. This can make it difficult to stay awake and alert during the day, affecting work, school, relationships, as well as other daily activities.
Other conditions and factors that can cause excessive daytime sleepiness, include sleep apnoea, certain medications, bad mood and inadequate sleep hygiene (e.g. if you listen to music/videos during falling asleep).
2. Sleep attacks
Sleep attacks are a defining symptom of narcolepsy and are characterized by an overwhelming urge to fall asleep during the day. The problem is, it appears regardless of the individual’s level of sleepiness or activity. They might occur literally at any time, often without warning. Sleep attacks and can last from a few seconds to more than several minutes. They can occur during any activity. Some people have faced them during driving a car, working on a computer, socializing with friends or colleagues (while talking or listening to others). If that happened, it can be very dangerous if the person falls asleep all of a sudden. Please note that those actions, especially driving, swimming, riding on a bike, require 100% of your attention and focus! Please have a word with your doctor to ensure you are safe and sound to prevent any sleep attacks from happening.
The exact cause of them is not fully studied yet, but it is believed to be related to disruptions in the normal sleep-wake cycle. In individuals with narcolepsy, the brain may not regulate the transition between the different stages of sleep effectively. It is leading to excessive daytime sleepiness and falling asleep attacks as a result.
They are very disruptive and negatively impact work, social activities, relationships. Oftenly lead to accidents, injuries. The unpredictability of those can also lead to anxiety and depression, that we will talk about later in the article.
3. Cataplexy
Cataplexy is a distinctive symptom of narcolepsy that involves sudden and temporary loss of muscle tone, or muscle control. It can range in severity from mild weakness to complete paralysis. People facing it state that it was often triggered by strong emotions such as laughter, surprise, sometimes anger. The episodes can last from a few seconds to even several minutes, and the person remains fully conscious during the cataplexy attack.
This medical condition can affect different muscle groups, depending on the individual. For some it may go in a form of drooping of the eyelids, for others in weakness of the knees or slurred speech. In rare cases even a complete collapse to the ground might happen. Cataplexy can be mistaken for a seizure, but it is not caused by abnormal electrical activity in the brain like the case with epilepsy.
4. Depression
Depression associated with narcolepsy can lead to a bad mood, anxiety, and other forms of mental health issues. Studies have found that people with sleep disorder are at a higher risk of developing medical depression than the general population. The exact relationship between them is not fully studied yet. But it is believed that the chronic sleep disturbances associated with narcolepsy can contribute to the development of depressed condition. Similarly with a daytime sleepiness.
5. Hypnagogic hallucinations
Hypnagogic hallucinations are a symptom of narcolepsy most commonly experienced by people diagnosed with sleep disorders. They are vivid and often frightening sensory experiences that occur as a person is falling asleep or waking up. These hallucinations can involve any of the senses, but most commonly involve visual or auditory sensations.
The content of hypnagogic hallucinations can be quite diverse, ranging from pleasant and peaceful images to terrifying and disturbing scenes. Some people may experience hallucinations that involve feeling as if they are floating, flying, or falling. Others may see vivid colors, shapes, or patterns, or hear voices or music. The problem is that up to 70% of people experience them hence its important to be aware of it. A hallucination itself might occur in a form of a false perception of objects (sometimes events) involving your senses malfunction related to sight, sound, touch, taste, smell etc.
The duration of hypnagogic hallucinations can vary. Some were lasting just a few seconds, while others could persist for more than several minutes. They can occur at any time of day, but are most commonly experienced as a person is falling asleep or waking up from a daytime nap.
They can occur in other conditions, while being one of the symptoms of narcolepsy, some of them are relate to sleep deprivation or certain psychiatric disorders. If you are experiencing them, ask your healthcare professional to determine the underlying cause to sort it out once and forever.
Diagnosing narcolepsy 101
While it can be challenging to diagnose the mental health problems, it’s important to receive a proper diagnosis in order to manage symptoms effectively and improve overall quality of life. In this article, we will discuss the process of diagnosing narcolepsy and what you can expect.
Initial Assessment
The first step in diagnosing narcolepsy is to undergo a thorough medical history and physical exam. Your healthcare provider (here you can find a list of best health insurance providers to choose from) will ask questions about your symptoms, medical history. Often it is including your family history of sleep disorders, cases that happened to your parents, grandparents, relatives etc. They will also perform a physical exam to rule out other potential causes of your symptoms. During this step of medical assessment, it’s important to be honest. Don’t hide anything, be clear in describing your symptoms and their impact on your daily life. Any detail matters! Even if you think it might not be fully needed.
Sleep study
Your healthcare provider may recommend a sleep study, also known as a polysomnogram. This test measures your brain activity, eye movements, heart rate, breathing patterns. Everything is measured while you sleep. It can help identify disruptions in your sleep-wake cycle. Those include abnormal REM sleep patterns (sleep apnea we referred to before). You may also undergo a multiple sleep latency test. It measures how quickly you fall asleep during the day. The foal is to confirm a diagnosis of narcolepsy.
HLA Typing
HLA typing is a blood test that can help identify genetic markers associated with diseases. While it is not a definitive diagnostic tool, it can support a diagnosis procedures and rule out other potential causes of excessive daytime sleepiness.
Diagnosis itself
After all tests and assessments are complete, your health insurance provider will review the results and make a diagnosis. A diagnosis is based on the presence of excessive daytime sleepiness and at least one other symptom we discussed before. If a diagnosis of narcolepsy is confirmed, your doctor will work with you to develop a treatment plan.
Narcolepsy treatment
While there is no clear way to cure narcolepsy, treatment can help manage symptoms and improve quality of life. Medical research into the underlying mechanisms of it is ongoing, so we hope new treatments may become available in the future. Every day our understanding of the disorder improves, so rest assured your medical provider might already have many options in mind how to help you. In the meantime, what you can do is passing early diagnosis. It leads to effective symptom management that is important for making your life better.
Medication treatment of narcolepsy
It is typically the first line of treatment. The approach might differ from one health provider partner to another, but general recommendations might usually include wide spectrum of medications.
Stimulants, such as modafinil and armodafinil, can help improve wakefulness during the day. Sodium oxybate, a central nervous system depressant, can improve nighttime sleep and reduce daytime sleepiness.
Antidepressants, like selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs) may be used to treat specific symptoms of cataplexy. Also its helpful for a sudden loss of muscle tone triggered by strong emotions such as laughter or surprise.
Wakefulness-promoting agents or other medications that promote wakefulness, such as methylphenidate, dextroamphetamine, and pitolisant, are also used to treat excessive daytime sleepiness.
Tricyclic antidepressants such as protriptyline and desipramine may be used to treat symptoms of cataplexy and more specific symptoms commonly diagnosed for people with narcolepsy.
Gamma-hydroxybutyrate (GHB) is a central nervous system depressant that can improve nighttime sleep. Similar medications reduce daytime sleepiness, activate your nervous system and might improve your life for good. It is similar in chemical structure to sodium oxybate we referred to before, but is used at lower doses.
Lifestyle changes
Making lifestyle changes can also help treat narcolepsy symptoms of any forms. First, start with establishing a regular sleep schedule. It might sound boring but is one of the most effective, non-medication approaches to improving your life.
Try avoiding caffeine as much as possible – it is a stimulant that can increase alertness and reduce feelings of fatigue. Nowadays caffeine is a popular ingredient in many beverages like coffee, tea, soda. However, consuming caffeine, particularly in the afternoon or evening, can interfere with the ability to fall asleep or stay asleep at night. It also has a longer-lasting effect than many people realize. The half-life of caffeine, which is the amount of time it takes for the body to eliminate half of the caffeine consumed, can be up to 6 hours. This means that if you consume a cup of coffee containing 100 milligrams of caffeine at 3 p.m., you could still have 50 milligrams of caffeine in your system at 9 p.m. Thus many people can not fall asleep at night after drinking even a cup of coffee.
Avoid alcohol. There is even health issue called alcohol-induced sleep disorder which might cause narcolepsy creating a lot of issues for you or your family health. Some studies shown that using alcohol can also lead to psychiatric disorders that in return cause problems with sleep.
Taking short naps during the day can help improve sleep quality and reduce daytime sleepiness.
Behavioral therapy
Behavioral therapy can help people with narcolepsy develop coping mechanisms and improve their sleep hygiene. This may involve cognitive-behavioral therapy (CBT), which focuses on changing negative thought patterns and behaviors that contribute to poor sleep. While CBT is not a first-line treatment for this type of medical illness, medical personnel use it as an adjunct therapy to address certain symptoms that commonly co-occur. It might also include sleep-related fears that bother a number of people within the world population.
CBT is a type of psychotherapy that aims to help individuals identify and change negative thought patterns and behaviors. Those 2 instances are contributing to the symptoms of sleep disorder. It is also proven to be helpful for patients that need to address mood disturbances.
Support groups
Joining a support group can also be helpful for many people. Support groups provide a space for people to connect with others who have similar experiences and can offer emotional support and practical advice.
There are many different types of them available for individuals with narcolepsy, including in-person groups, online groups, peer-led groups. In-person groups may meet regularly at a specific location, such as a community center or hospital. Most online groups are typically hosted on social media platforms or other online forums. Peer-led support groups are usually led by individuals with same diagnosis who have received treatment, training in group facilitation etc. They share own or professional experience. It may be particularly beneficial for individuals who are looking for a more informal, community-driven approach to support. Peer-led groups also offer a safe, supportive environment for everyone to share their fears & seek for support.
Healthcare providers that offer help with narcolepsy
Always seek for a professional help. Refer to your local provider to ask more questions. Most commonly clinics have sleep medicine specialists, neurologists, psychiatrists, primary care physicians, nurse practitioners and physician assistants, psychologists, therapists whos duty is to always be there for you & help.
It is important for individuals with narcolepsy to work closely with doctors who are experienced in diagnosing and treating this condition. There is no one as knowledgeable about the latest research and treatment options as they are. A multidisciplinary approach to treatment, involving a team of healthcare providers from different specialties, may be the most effective way to manage symptoms and improve you precious quality of life.