First symptoms,  My experiences

First experiences – The Diagnosis

My symptoms started to develop around the age of 14 and gradually became stronger and fully manifested.

Self diagnosed through an online sleep quiz

A year or two after the symptoms started I began to search the internet for sleep disorders because somehow I knew something was not right. At the same time, I did not know how to talk about or explain what I was experiencing and feeling. I stumbled upon a sleep quiz that had few and simple questions, but it addressed sleep and cataplexy. The results said “Narcolepsy – very rare”, and I felt it was right. But the “very rare” part made me think there was no way this could be it, why would I have a strange “very rare” sleep disorder? I did not search further. Junior college was not easy, and I still had no explanation for my symptoms. I sometimes thought of this narcolepsy word, and it was calling me in the back of my mind for a few years. Even though the symptoms were scary sometimes, I was never afraid of being sick. Somehow I knew everything was going to be just fine. 

Narcolepsy – not so “very rare”

A few years later I ended up searching the internet again for narcolepsy and found the information on Wikipedia most helpful. At the time it was still “very rare”, but it was amazing for me to read the Wikipedia article because it summed up what I was dealing with, something I had not been able to explain by myself. I printed the entire article and crafted a little booklet for my parents to read. They said: “Sandra, this is like a description of you!” and took me to the doctor right away. We asked the doctor if he had heard of narcolepsy and he knew it was something about sleep, but not much more. I told him that I have all the symptoms, we showed him the Wikipedia booklet I made and discussed it, and thankfully he did not question our diagnosis. The doctor ordered a sleep study and did an electrocardiograph at the end of that same visit. 

The sleep study

One evening, not long after the doctors’ appointment, I went to the sleep clinic to prepare for the sleep study and have the sensors attached to my head. The wires, along with my dreadlocks, formed a huge fountain, on the top of my head, flowing to the back and attached to a device I had on a belt around my waist. I wish I had a picture! This was the PSG (Polysomnography) part of the sleep study, and I went back home with that sculpture on my head, to sleep. I had to be back to the sleep clinic early morning for the MSLT (multiple sleep latency test) part of the sleep study. I had to wake up at 7 am, then I had to be at the sleep clinic at 8 am, then the first nap started at 9 am if I remember correctly. I was not allowed to have a nap during this time, but there was no way for me not to stay awake in the car on the way to the clinic. I felt really guilty of that nap. During each of the naps of the sleep study, I fell asleep very quickly. I tried to stay awake in the intervals between the naps, but it was difficult since there was nothing to do in the room where the study took place. At the end of the day, the nurses said there was no question I had narcolepsy, but I had to wait for the official diagnosis. I had an appointment with the psychiatrist that confirmed the diagnosis, but at that time the sleep study was part of the psychiatric department of the hospital. Nowadays people see a neurologist.

There I was 21 years old, finally diagnosed with narcolepsy after seven years of not knowing what caused my uncontrollable sleep and weakness when laughing. The feeling was good!

Have you experienced something like this? How did it make you feel? Please comment below!

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