What it feels like to have Narcolepsy

When I was 16 years old – a sophomore in high school – I started passing out up to 5 times a day, Amanda Vasas tells NarcolepsyNetwork. I would be in the middle of a conversation, or walking to the bathroom, or watching TV and just fall over, completely dead weight, and be unknown to the world for about 3 minutes.

Excessive daytime sleepiness

Feeling drowsy during the day, even though you had sufficient sleep at night. People with narcolepsy are often misjudge being lazy.

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I should note that many people with narcolepsy, including myself, don’t suddenly fall asleep without warning, Katie G. Nelson, a 29-year-old journalist told YesandYes. Rather, we’re always exhausted and never feel completely refreshed no matter how much sleep we get or how much medication we take

Other symptoms include sleep attacks, cataplexy, memory lapses, automatic behavior and hypnagogic hallucination of which scientists aren’t sure as to why it is.

“Once you know you have it, you have to not put yourself in certain situations. You don’t want to be an air traffic controller, for example,” says Dr. Kevin Fagen, diplomate of the American Academy of Sleep Medicine and director of the sleep lab at Ingall Health System.

Working with Narcolepsy.

Patrick O’Neill, a Chemistry-Physics teacher at Munster High School, Indiana; also a narcolepsy patient, talked about his struggles with series of narcoleptic episodes that dominate his daily life. He did said he remains highly dependent on others.

“Without medication, I would have as many as 300 cataplexy attacks in a day, and couldn’t even walk around on my own,” says O’Neill, who began having cataplexy, a sign of narcolepsy in 2004. “With medication, I tend to have them only at night, and usually only when there’s some sort of added stress, like I stayed up late working the night before.”

“Cataplexy is a terrible feeling. I feel dizzy, detached from my body and a bit queasy. My vision blurs and sound is slightly distorted, added O’Neill.

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During interview with NarcolepsyNetwork.org, Bonnie Smith, a pharmacist from Michigan talked about how narcolepsy limited her activities as a pharmacist.

I actually started exhibiting symptoms in 2011 and it wasn’t until 2012 that I sought help because I was having a hard time driving to work. I thought I was actually hypoglycemic but I had multiple sleep studies and found that I had narcolepsy.

Parenting with Narcolepsy.

When asked how she handle having a newborn and having narcolepsy; Chalanda Samec, a mother of three, emphasized on the need to ask for help.

I started showing sign of narcolepsy around the time I was 13, but I wasn’t diagnosed until I was around 25, Chalanda says. Don’t be shy. If you really need something don’t be afraid to ask for. People aren’t mind readers so you really have to put it out there what you need before you’re going to get any kind of help.

Discussion and Narcolepsy.

“The need to sleep is so great, it takes a tremendous amount of will to overcome it, Paul Beals, from Alaska, told Nytimes. In states of high emotion, sometimes I will have an attack where I become very sleepy. In the heat of discussion, I’ll sometimes start yawning uncontrollably, my memory starts to fail me. I’ve learned to withdraw and come back when I’m fresher.”

College with Narcolepsy.

Narcolepsy affects the sort of life you can live in, it affects how you decided to go to school, it even determines which profession you should choose.

In general it’s made school more difficult, says Julia, a student at Stanford University. I can’t do homework for long stretches of time without taking a nap, and in classes my teachers may think I’m rude because I fall asleep, but I’m literally unable to stay awake.

While talking about the stigma of being a narcolepsy patient, Julia said:

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At home a lot of my friends made fun of me and I really didn’t like that. Not in the sense that they were being mean, but just because they thought it was hilarious that I would fall asleep randomly.

To know how some lifestyle changes can help treat narcolepsy, subscribe to this blog for update.

References:
  • Talk About Sleep: Narcolepsy dominates lives of patients.  – http://www.talkaboutsleep.com/narcolepsy-dominates-lives-patients/
  • Narcolepsy Network: Patients stories – http://narcolepsynetwork.org/about-narcolepsy/patient-stories/
  • Katherine Stavisky; Living With Narcolepsy – An Interview. http://www.end-your-sleep-deprivation.com/living-with-narcolepsy.html
  • Vita Talalay, Sleep on Air: What are the signs and symptoms of Narcolepsy and the natural remedies for it?

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