• Shannon Jeffords Burkoth

Cataplexy... narcolepsy's potential secret companion

Narcolepsy has long been thought of as simply a sleep disorder where people get sleepy & pass out or even get to take luxurious naps. This perception is fueled by false representation in movies and media. Narcolepsy is a neurological disorder affecting the sleep and wake cycles. The main symptoms of narcolepsy include: Excessive daytime sleepiness - comparable to someone without narcolepsy being awake for 48-72 hours. (Cognitive deficits) Hallucinations upon falling asleep or waking up. Sleep paralysis upon falling asleep or waking up. Fragmented night time sleep. Cataplexy. These symptoms are experienced differently in each person with narcolepsy. Depending on the individual, they may not experience all symptoms, including cataplexy. It is true that catalexy is not always present in people who have narcolepsy. However, if you have cataplexy, it is almost always associated with having narcolepsy. Cataplexy is the sudden loss of muscle tone, usually experienced with a strong emotion such as laughter, anger, fear or even anxiety. The episode may last anywhere from a few seconds to several minutes. The cataplectic episode may be anything from droopy eyelids, the slackening of one's jaw, slurred speech, loss of hand motor control, buckling of the knees to complete body collapse. As you can imagine, these episodes can be frightening or even dangerous in the wrong situation. It is important to know that even though the person is unable to respond during these episodes, they are always fully conscious and aware. You should only move the person if you suspect they are unable to breathe. There is no need for emergency responders unless the person is injured or unable to breathe. What causes cataplexy? Cataplexy occurs when REM sleep intrudes into waking hours. A person with narcolepsy essentially has a “rogue sleep cycle” due to their lack of hypocretin cells, which regulate the sleep/wake cycles. Without these neurotransmitters (also called orexin), a person may slip into REM (dream) sleep while still awake. In normal REM sleep, muscle paralysis occurs as not to act out your dreams. People who have severe cataplexy may even have a service dog. The service dog is trained to sense when a cataplectic episode is coming on. They will react by breaking the persons fall and assist in making sure that their person’s body is positioned in a way that their airway is open. These dogs allow a person with severe cataplexy to go out in public, where it may not have been safe to otherwise. There is no known cure for cataplexy. Treatment may include anti-depressant medications such as an SSRI or SNRI, which have been known to help alleviate the symptoms. Examples may include Prozac or Venlafaxine. Older tricyclic antidepressants may also be effective for cataplexy. Examples of these drugs include Protriptyline,Tofranil, or Clomipramine. Finally, Xyrem (sodium oxybate) is also an effective drug for cataplexy. However, taking Xyrem with other sleep medications, narcotics, or alcohol can lead to difficulty breathing, a coma, or even death. Strict physician supervision is always advised when taking these medications.

I do experience cataplexy with my narcolepsy pretty much on a daily basis. My experience is usually dropping things or buckling of my knees, rolling my ankles, especially when I get tired. Rarely I will collapse.

I have learned to adapt, to always push a cart while at the store to catch myself if my knees buckle or to hold on to my husbands arm if we are out and about. I have to consider cataplexy when planning my days.

Narcolepsy and cataplexy are also observed in animals as well, if you log onto youtube and type in "cataplexy" you will see goats, sheep, dogs, all falling down from cataplexy, usually when dinner is served! You will also see videos of people experiencing it as well, even a little girl who is so excited to swing that everytime she gets on the swing, she starts laughing and falls off again and again (that one was hard to watch).

I'll give narcolepsy one thing, it sure is intrigueing!

My hope & strength remain in my faith!

God Bless!

xoxo- Shannon the Narcoleptic

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#ChildwithNarcolepsy #Advocacy #RareDisease #narcolepsy #cataplexy #CareforRare #ShannontheNarcoleptic #sleepparalysis #hallucinations #REALnarcolepsy

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