You know that feeling you get sometimes in the afternoon when you are so tired that you could rest your head on your desk and fall asleep in an instant? You know the one, your eyes are heavy and you can’t concentrate because 80% of your focus is on keeping them open and the other 20% is on the clock, counting down the seconds until your next break. Now imagine feeling like that ALL THE TIME. For Isabel Cybulski, the struggle to stay awake was a feeling that she knew all too well.
In high school, she would become so tired that within minutes of the class beginning she could already feel her focus shifting to the enormous task of keeping her eyes open. Eventually, she became so distracted by the sleepiness that she was unable to concentrate in class and had to withdraw from her OP subjects. When it came to the weekend if she had to decide between attending a party or staying in bed, the choice was an easy one to make, bed. Concerned for their daughter’s wellbeing, Isabel’s parents sort advice from their family GP.
“My doctor put my symptoms down to anxiety and depression. The diagnosis made sense to me at the time. I chose to stay in bed, rather than go out with my friends and I was just so tired all the time.”
Isabel’s doctor prescribed her antidepressants. She was hesitant to take them at first but happy to have an answer and a possible solution.
“The antidepressants did nothing so I just carried on and eventually accepted that this feeling of constant tiredness was just normal for me.”
A few years later Isabel’s symptoms worsened and once again her education was put on hold.
“I was studying a Bachelor of Nursing at university but again I was having such a hard time focusing. Eventually, I had to pull out of the course. It was devastating. All I have ever wanted was a career in medicine and I knew I was capable of it but my body just kept letting me down.”
After pulling out of university, Isabel went to work in a Real Estate office as a receptionist where her symptoms continued to plague her.
“Every day was a struggle to stay awake. I was okay when I was busy but as soon as I had completed all of my work the fight to stay awake became unbearable. Multiple times a week, I would have to leave early to go home to sleep.”
It all came to a head one night when Isabel was out at a club with her friends.
“I arrived at the club and said hi to my friends, I went to the bar to order my first drink. All of a sudden everything went black and I couldn’t feel my legs. I just knelt to the ground, I couldn’t do anything. When I came to, my friends took me home. From that point on I began to feel really depressed. I had a great group of friends and a really supportive family but I still just wanted to be in bed most of the time. The real problem though was at work. I have a really strong work ethic and take pride in working hard but I just wasn’t able to get through the day.”
With the support of her parents, Isabel quit her job and decided to finally get to the bottom of the problem that had been haunting her for so long. She continued to meet with her GP and psychiatrist.
“At first my psychiatrist suggested that I might have ADD, however, when he discovered that I suffered from sleep paralysis and hallucinations, he went down a different path and referred me to The Wesley Hospital Sleep Disorders Centre to participate in a Multiple Sleep Latency test.”
It took two separate trials for the doctors to reach their conclusion but eventually, Isabel was diagnosed with Narcolepsy. According to the Mayo Clinic, Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep.
“I was actually so happy when the doctor told me what was wrong, I just burst into tears. I couldn’t believe that after all of this time, I finally had an answer.”
The symptoms caused by Narcolepsy often impact peoples work and school performance. It is not known what causes Narcolepsy though a majority of patients have low levels of the chemical hypocretin. Other suspected causes are autoimmune reactions or an inherited genetic fault. There is no cure but the condition can be managed with medication and lifestyle changes.
“I started on medication a month ago and I haven’t looked back. I have a new job at a busy cafe. I still get tired but like anyone, it’s after a hard days work or a Netflix marathon. I’ve even re-enrolled into university, I’ll be starting a Bachelor of Science in the new year.”
“I guess what I would say to anyone else in the same situation is if you think there is something wrong with you, just don’t give up, keep going until you get the answer that you need.”
For more information on Narcolepsy see visit the Sleep Health Foundation.