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Living with Narcolepsy

living with narcolepsy Posted On
Posted By Alex Perez

Narcolepsy is a sleeping disorder that makes it difficult for one to stay awake. It can impede significantly on the ability to perform day-to-day functions and can interfere with relationships and work life. It may even be dangerous. For example, narcoleptic patients may find themselves falling asleep while driving or operating danger-prone devices.

Though scientists are unsure of how Narcolepsy can progress, they are sure that patients with Narcolepsy have a shortage of the protein “orexin,” which is needed to regulate sleep and metabolism. Since Narcolepsy is a decrease in the same protein that is required to regulate metabolism, narcoleptic patients may also struggle with weight issues.

Neurologists are also studying the possibility that Narcolepsy is an auto-immune dysfunction. Meaning, the patient’s immune system targets, and attacks orexin, producing nerve cells.

However, the definite cause of Narcolepsy is still unknown.

Some symptoms of Narcolepsy are:

living with narcolepsy
  • Unable to distinguish events from a dream or reality
  • May spontaneously lose muscle tension as one does during sleep
  • Sleep paralysis
  • Daytime sleepiness
  • Spontaneously falling asleep
  • Hallucinations
  • Trouble with memory

Sometimes narcoleptic patients may not understand their symptoms before they are diagnosed, especially for younger individuals. It can be confusing, and they may feel like there is something wrong with them, and they are somehow to blame. If you or someone you know are experiencing difficulty with excessive daytime sleepiness and suddenly falling asleep, it is essential to be assessed by a healthcare professional to determine whether Narcolepsy is the cause of these symptoms.

Managing Narcolepsy

There is no cure for Narcolepsy. However, there are behavioral ways to manage and regulate your life to deal with the symptoms of Narcolepsy.

  • Find Support: Feeling like you are not alone, and finding a sense of belonging can help your mental health while managing Narcolepsy. It is also an excellent way to share ideas about different methods that work for other narcoleptic patients. Know that you are not alone in your struggles, and there are other people who are coping with the same struggles.
  • Take care of your mental health: Know that your symptoms are unique and okay. It is not your fault, and you are trying your best to manage your life despite the challenges that Narcolepsy comes with. It may be helpful to find a way to manage stress and express yourself, like creative outlets.
  • Maintain a consistent sleep schedule: It may help regulate your sleep to maintain a predictable sleep schedule at night. Go to bed at a consistent time and set your alarm to wake up in the morning, ensuring the recommended eight hours of sleep.
  • Take naps: Schedule naps during the day as needed. Try napping with different durations and different times and see what works for you.
  • Exercise: Physical activity has shown to help regulate sleep. Maintain an exercise routine that increases your wakeful patterns during the day but also allows for proper rest during your nap or nighttime sleep.
  • Limit Caffeine: Limiting caffNeine intake to avoid disrupting your sleep regulation. Caffeine may have short term success. However, it can negatively impact your overall narcolepsy management.

Narcolepsy Network, Supporting people with Narcolepsy since 1986

NORD: Narcolepsy

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