About

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Narcolexi with “Pinky” The Giant Unicorn

Narcolexi. A play on words for my name and the disorder I live with every day.

I am a 24 year old college student. I live in a small town near the big city with my fiancé and our pupper, Finn.
I work casually at an addictions treatment clinic while I go to school full time to study social service work.

At age 9 or 10, I started developing sleep issues. It presented itself in the form of extreme insomnia, weird hallucinations, and sleep paralysis. The insomnia led to my forth hospitalization in the adolescent psychiatric ward due to the delirium and psychosis from sleep-deprivation.

Despite having been treated at the hospitals, I wasn’t diagnosed properly until many years later.

After my second year in university, I had a complete breakdown which led to the treatment and diagnosis of complex post-traumatic stress disorder. I spent a full year in intensive treatment, with new medications, another hospitalization, and eventual progress.

It wasn’t until I was treated for complex PTSD that my doctor realized that there may be something wrong with my sleep. Despite years of reporting symptoms to various specialists, my sleep issues had always been boiled down to either medication side effects or as a result of my traumas.

This doctor was different. She referred me to a sleep clinic where I was diagnosed – after nearly 13 years – with Narcolepsy Type I. The real work to deal with my Narcolepsy was only beginning since there is a process for the treatment.

When I was diagnosed, I was asked to stop driving as my tests revealed an extreme physical and mental impairment due to the Narcolepsy. I agreed and since my doctor was aware that I was without a car at the time, he decided not to report me to the ministry of transportation. I was prescribed a wake-promoting agent that I could not afford and therefore, was not taking.

I was failing out of university – I could not stay awake in class, or on the bus to school, or enough to mental absorb any of the material I was presented. I decided at this point, I had to put my education on hold.

During the next few months, I was sleeping an average of 20 hours a day. I was barely able to function as a human being. I lost friends, weight, and was afraid of losing my amazing relationship with my now-fiancé.

I called my sleep doctor and begged to have an appointment sooner. I fell asleep in the waiting room and then cried in his office. There was no way to convey the torture I was experiencing – the crushing exhaustion, the hallucinations, the paralysis, the cataplexy. I couldn’t afford the treatment, and I needed to try something else.

He prescribed me a stimulant that had a more difficult side-effect cluster, but that I could afford. My blood pressure rose to 150/100 on average with a heart rate of 120. I was alert, but anxious and awake. The crashing effect every couple of hours was extremely difficult to handle.

I saw him a few weeks later and he prescribed a longer-lasting version and a bed-time medication called Ambien. The long-lasting stimulant was amazing, and I reduced some of the short-acting stimulant as a result, but I couldn’t afford the Ambien.

A few weeks later, I come back and we decide to try something new all-together. Xyrem or GHB or Sodium Oxybate. He explained the risks, the benefits, and that this was a good option to try. I agreed and went through the process of being prescribed this highly restricted, orphan drug. Due to my disabled state and the fact that I had next to no income, I was able to receive it at a more reasonable price.

June of 2016 was my first month on Xyrem.

By August, I moved in with my fiancé to a small town.
By September, I was in school full-time and on the Dean’s List.
By January 2017, I was working casually while attending school and I graduated from counselling.
By March 2017, we decided we could afford to have and were able take care of a dog.

And here we are. Almost a year later. My Epworth Scale has gone from 20 points to 5 points. I have truly become a different person. Not every day is easy, but I’m getting there.

These are the chronicles of Narcolexi: Chronically Awesome.

 

 

 

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