Story about Narcolepsy .

I was misunderstood by doctors and surroundings.

Dec 2, 2

By: Sara


If you have any questions or just want to chat, just contact me. :)

It all started slowly in maybe february 2011. I had just finished being in a professional theater play for chritsmas a few months before, and troubles started in my family. I felt tired and was sick of my parents arguing, so I would just go to bed and start sleeping. Not much longer after, I started getting more and more tired every single day. When I came home from school (about 4.30 pm or later if I had been with friends) I just started to go right in bed and sleep. I was exausted and it came to I slept until the next day. 

FOR MORE INFORMATION ABOUT ME AT THE TIME, I was attending a special school with dance lessons 4 days a week and sometimes extras if performances was near. That's why I was late home. I was attending 7 grade at the time it appeared. I had problems at home betweeen my parents. It got to a point my father took the desistion of not seeing me or my sister. 

Naturally you would think I was tired because of school or the just ended theater play, but it kept being worse. Soon I started sleep in classes too, with no power to keep myself awake. I tried so hard, but it was a fight i wouldn't win. You may already know that feeling. :)

After months with this, my mom started to take me to the doctor. After a certain amount of visits, we had to change doctor because the only thin the previously one said was: _"It's mental everything. It's because you have a hard time at home, and that your father is out of your life right know. It will proberlly disapear when you see your father again"_. That wasn't something we could wait for, because we didn't knew for how long my father wanted distance. 
WE ARE AROUND NOVEMBER 2011 NOW. The new doctor didn't take it seriously either at first, but a few days before the visit my mom had made some google seartch herself. She actually found Narcolepsy, and the description matched perfectly! When the doctor was about to send mom and me home, I told the doctor about Narcolepsy. I told about how perfectly it matched, but my doctor still wasn't conviced. But she got more seriously about my issue, and started to try different things out. Because the disease is rare, and a few other things can be simular, she wanted to try all the other things out first. But IN JUNE 2012 I was hospitalized to take some final tests to vertify narcolepsy, because eveything else the doctor tried didn't work. 

It was a spinal cord test (not sure of the official english name) that proved I had narcolepsy (with cataplexy), and after the diagnose was finally made, I could start some real treatment.

AFTER THE DIAGNOSIS
My story didn't end when I got the diagnose, it was like it started on new. When I get the time, I want to tell this story too in detail. Trough the years I have tried some different medication, gained and lost weight because of it. Anti depressive got me up to 70 kg, and when I stopped and started on something new, I lost 19,5 kg. 

TODAY
I'm almost like a totally normal person, and few know today I actually have the diagnose. Only because of the perfect medication, and without it I can't stand on my own two legs.
But I'm great and I came though the hardest times of my life. You can too! It's just about will and stuburness until you reach your goal. Good luck! 

Know someone who should read this story? Share it

3 comments
1

What's the perfect medication?

 

Commented 7 years ago Emily 18
0

Emily, the perfect medicine for me is Xyrem(this one made the biggest difference) and motiron (same line as retalin, just cheaper). But all are different, so this might not be perfect to you(very important!). I have also heard many is intolerant to Xyrem, but I think it's worth talking with your doctor about if you have any interest in Xyrem.

Commented 7 years ago Sara 46
0

Great post, I was wondering how they diagnosed the Cataplexy since I'm pretty sure I have that. Was the diagnosis done by a Neurologist Dr?

Commented 7 years ago Kenna 13

Login or register to leave a comment


Narcolepsy treatments

What are the best treatments for Narcolepsy?

Narcolepsy prognosis

Narcolepsy prognosis

Natural treatment of Narcolepsy

Is there any natural treatment for Narcolepsy?

Narcolepsy diagnosis

How is Narcolepsy diagnosed?

Prevalence of Narcolepsy

What is the prevalence of Narcolepsy?

Narcolepsy is also known as...

Narcolepsy synonyms

What is Narcolepsy

What is Narcolepsy

Narcolepsy cure

Does Narcolepsy have a cure?