Narcolepsy Cataplexy; Behind The Scenes Look At The Devastating Sleep Disorder
Reading time 4 minutes
Narcolepsy an Introduction
Samuela (Name changed) is a 34-year-old part-time nurse and teacher. She has three children and a loving husband. Her story begins when she suffered muscle control loss. That resulted in her collapsing to the floor, unable to move or speak. Even though she wanted to, her condition worsened. Despite medication and several wrong diagnoses, doctors tested her for narcolepsy. She was suffering from type 1 narcolepsy with cataplexy.
Narcolepsy affects your brain’s ability to control sleep and wake cycles. It’s a chronic neurological disorder or a sleep disorder with two types –
People who suffer from narcolepsy reach REM sleep. And awaken in the middle of the night, unable to sleep again. The result is a constant state of drowsiness during the day time.
During non-REM sleep you experience sleep in stages – first you close your eyes and fall asleep. Then you are in light sleep, and move into a phase of deeper sleep where it’s hard to wake you up.
In REM-sleep (Rapid-Eye Movement), our brains cause our muscles to go limp. Preventing us from acting out our dreams. People who suffer from narcolepsy reach REM within 15 minutes of falling asleep. Also, they experience this muscle loss during wakefulness or don’t dream during REM-sleep. Which can explain why cataplexy and hallucinations are symptoms of this sleep disorder.
Narcolepsy and Hypersomnia
Hypersomnia is excessive daytime sleepiness caused by a disruption of the sleep cycle. We usually have two stages in our sleep cycle.
Narcolepsy and Hypnagogic & Hypnopompic Hallucinations
What are Hypnagogic and Hypnopompic hallucinations?
They are vivid dream-like sensations that feel real. They engage your audio, visual and tactile senses. Hypnagogic hallucinations take place as you fall asleep. While Hypnopompic hallucinations take place as you wake up.
Mike (name changed) recounts his experiences with hallucinations caused by sleep deprivation.
From a shadowy man in a hat to a frightening old hag and a red-eyed demon bunny, his experiences are bone-chilling. After reading about his background. It’s easy to see why doctors misdiagnose narcolepsy induced hallucinations as schizophrenia.
For example, he describes seeing a shadow man in a hat at the foot of his bed as he was going to sleep or waking up. He also describes, a “deceased elderly woman who would fall on my chest and inhibit my breathing.”
What is life like for someone with narcolepsy?
I wanted to share a story by Angela (name changed) from mic.com. She talked about her grueling battle with narcolepsy and how much it’s held her back. In her heartfelt post, she detailed how long she slept. She always woke up as tired as when she fell asleep.
Experts recommend a fixed sleep schedule to treat narcolepsy. For Angela, that was proving difficult as she became dependent on Tylenol PM to sleep at night. Even after taking pills, she’d wake up in the middle of the night. Then be so exhausted she would need to sleep after coming from school. She was too tired from waking up at 6 am every morning.
Children with narcolepsy are often misdiagnosed. People with narcolepsy also suffer from excessive daytime sleepiness – EDS or Hypersomnia. Resulting in an inability to pay attention or focus. Much like children with ADHD Attention-Deficit Hyperactive Disorder. They are also sometimes misdiagnosed with schizophrenia because of sleep deprivation hallucinations.
Dr. Luis Ortiz, is Director of the Narcolepsy Network at John Hopkins Children’s Hospital. He says many patients show symptoms during childhood but aren’t diagnosed until adulthood. Dr. Luis Ortiz himself suffered symptoms for ten years before receiving a diagnosis at age 21.
Author Angela (name changed) talked about her struggles with “living a half-life.” Her professor discouraged her from enrolling in more advanced courses. Despite having stellar academic grades and involving in several extracurricular activities. As Dr. Ortiz explains, “You cut out parts of your life to do one thing normally.”
Our understanding of the disorder doesn’t help either. Movies and mainstream media have always shown exaggerated or extreme cases. Creating stereotypes and misconceptions about the condition.
How does stigma affect those with narcolepsy?
It shouldn’t be surprising that people with narcolepsy are also battling stigma.
Stigma is a disgrace associated with a person’s circumstance or characteristic.
Studies show that people with narcolepsy report a low quality of life. 30% of narcolepsy patients have lost their jobs – higher than average.
A study in 2015 found; narcolepsy patients face financial insecurity, social isolation, rejection, shame, and a fear of telling others about their condition. The result is they were more anxious and depressed than ordinary people.
People with narcolepsy reportedly develop other health conditions due to their difficult life. For example, heart disease, hypothyroidism, diabetes, and gastrointestinal issues.
What can you do if you suffer from narcolepsy?
Furthermore, it’s important to understand that you are not alone. Reach out to others suffering the same condition. Their experiences can help you better cope with yours.
First, make sure you receive a diagnosis from a doctor before taking any medication. There are medications like Sodium oxybate (Xyrem) and Tricyclic antidepressants to treat cataplexy. But you should use them, after consultation with a medical practitioner.
Besides medication, you will see improvement after –
1. Setting a fixed sleep schedule – on both weekends and weekdays. So even if you find yourself waking. You can always schedule naps later in the day to prevent daytime sleepiness. The condition narcolepsy puts you in can make it difficult to set a schedule, but you must try.
2. Take short naps during the day – for 20 minutes during the day to reduce daytime sleepiness. napEazy® could be useful to get in a rest while at work or commuting.
3. Avoid alcohol, caffeine, and nicotine – they tend to disrupt your system even more. Contrary to the relaxing feeling you get while indulging in them.
4. Exercise – a daily workout has proven to improve sleep quality. Choose a time most appropriate for you.
5. Eat a healthy diet – a low carb diet to reduce daytime sleepiness in eight weeks.
6. Connect with others – you need to find others who struggle with the same condition. You could benefit from their advice since they have had similar experiences. There are many groups on Facebook that can help you connect with others. You need to remember you are not alone. You can check out Project Sleep, Wake Up Narcolepsy, and even get in touch with Julie Flygare. She suffers from narcolepsy and is part of Project Sleep. A non-profit organization that promotes narcolepsy awareness and support to the community. She is a writer and uses her influence as a #narcolepsynerd to helps others.
What can you do if you know someone who suffers from narcolepsy?
1. Research and understand more about the disease. Go through resources and read about people’s experiences with the condition
2. Listen and be open to the experiences of your loved one. They need support and encouragement. The stigma surrounding narcolepsy makes it challenging enough without the misconceptions.
3. Help them set a schedule and plan ahead. Staying flexible and understanding will help your loved ones feel appreciated.
Life is hard enough for them as it is. Let’s help them with our compassion and understand what they face.
Maybe we can find a place to feel good and treat people with kindness. 😉