cataplexy, medical, narcolepsy, sleep disorders

Narcolepsy Struggles.

The constant struggle:
For a person with Narcolepsy every day is a challenge.

There a great days, and awful days.
But, in the end the only person who truly knows how a Narcoleptic feels is one them self.

Narcolepsy is much more than being sleepy.

Each Narcoleptic experiences symptoms in their own way. Not everyone has the same intensity of reactions.


For people who don’t have Narcolepsy I will walk you through a scenario :

Imagine you are a college student who was just diagnosed with Narcolepsy. Your doctor prescribes a medication, and shortly after you start to see improvement from the medication it stops working.
You have an exam Tuesday afternoon. It’s Sunday night and you plan on studying… But in the middle of it you pass out. When you wake up and actually are functional you realize that it’s the end of the day Monday . You feel like you haven’t slept for three days.
On top of that you’re getting those awful hallucinations again. You know they vary…. (Like the time you were driving with friends and started dreaming while awake and thought you all got in a car crash. So you screamed , you actually could feel the pain. Yah those type of hallucinations. Or the ones like the time you walked in the house and you thought a guy in a mask was trying to kill you…. And the only thing in the room was a balloon … Oh your one year old nephew who was asleep, that you woke up from your screams)….. So you try to balance studying, & keeping your sanity. You suffer through that and then goto bed. By some miracle you wake up, take your medication and goto campus. You sit down to take your exam and get half way through the test. Then, you realize one student has just finished their test. You panic, you begin to stress out and you can’t control it. Then, your cataplexy kicks in. That is the part of your Narcolepsy that when under strong emotion you pass out… In your case stress, anger and fear. Most of the time in your case that ends in you sleeping a very long time. And about 80% of the time you are injured from the fall. But, luckily you are not hurt. Your professor calls your emergency medical number you gave him. And moments later your sister shows up to get you. Then just like that Your day ends in embarrassment, and exhaustion.

Now, that is a situation that has happened to myself before.
Recently, my narcolepsy has been uncontrollably. Even with a high dose of Adderall & Xyrem at night.
My Xyrem gives me really bad reactions I don’t remember.
At least once a week when I take it I freak out. I never remember what I do but it’s described as crying, in hysterics. Usually, my parents say my reason for crying is strange.
Like the first time I yelled, in tears, for 3 hours mom I don’t want a kitty. . .

So as you could imagine, I really hate taking that medication.
I was wondering what methods , medications, remedies all of you Narcoleptics out there use to stay awake throughout a day.
(non-narcoleptic opinions are appreciated as well!)
I’d also love to hear if anyone has been struggling with their narcolepsy.
If so, in what ways.
….Also if there was any available trials for narcolepsy .
Thanks everyone!

With love,
R.

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