As you can guess by the title, I am a narcoleptic. I was diagnosed with this sleep disorder when I was nine years old. Unlike most narcoleptics, the symptoms manifested after I had a whiplash accident playing cricket with my friends. I jumped to catch the ball and was knocked out by an alsation with the same idea in mind. I was only out for a few seconds before getting up. I had a huge lump on my head which had suddenly appeared, even though I was in no pain. A trip to the hospital showed nothing was wrong, so life went on as usual.
It wasn't long before I started falling asleep everywhere and being lacklustre about things. I went from being a bright, energetic kid who was one of the top in my class academically and in sports, to being someone who struggled to keep my eyes open.
My parents noticed this with alarm and took me to see a number of different doctors and therapists in an attempt to find an answer. Most of them had no idea about how to recognise the symptoms of narcolepsy and it wasn't until about a year later that a doctor who I was undergoing dietary analysis with cottoned onto the symptoms and their associates such as cataplexy etc. and realised that I had narcolepsy. That was in the eighties. Unfortunately nothing much seems to have changed and people still suffer from misdiagnoses and mistreatment at the hands of doctors who should know better about a condition that effects one in two thousand people.
So I had the diagnosis and we knew what to work with. The standard treatment then and now is to treat it with stimulants. I went on a dose of dexamphetamines three times a day, as well as codeine. I used to have to visit the headmaster's office at recess and lunch and pick up my little orange bottle of drugs which I soon learned to down quickly and effortlessly. In general they worked well and allowed me to live a functional life and childhood. At lunchtimes I moved from the playground to the classroom, where I joined a group of kids playing dungeons and dragons. My parents were concerned that I might hurt myself if I played rugby, so I could only play soccer, the lesser alternative. I couldn't get the bus or train to and from school like the other kids, and was driven and picked up by my parents.
In addition to the narcoleptic sleep attacks, there is the associated condition known as cataplexy, which is the involuntary loss of muscle tone in the body. It is triggered by strong emotion, particularly laughter. To understand cataplexy one really needs to understand the relation of narcolepsy/cataplexy to dreaming. Some people define narcolepsy as the intrusion of REM into waking consciousness. REM is the state that the brain is in during dreaming, and with narcoleptics occurs almost immediately upon falling asleep. Most normal people have this occur later on in a different sleep phase. When we dream, a chemical is released and our bodies are paralysed and our mind/body connection is switched off so that we don't run around the room acting out our dreams. Cataplexy is the triggering of this same muscle switch-off mechanism, only it occurs when a narcoleptic experiences a strong surge of emotion, particularly laughter. If you watch the youtube videos of narcoleptic dogs, they get so excited when their food is brought out that they collapse from cataplexy. It is not falling asleep, which many people misunderstand it to be. It results in an embarrassing buckling of the knees, slackness of the jaw and facial muscles and collapse to the ground. My "friends" used to find it amusing the make me laugh and watch me "go drunk" and collapse. At the time I played along and kind of played the fool. In my experience during such cataplectic attacks I remained totally awake. I think it is uncommon for them to develop into a sleep attack, although I did learn how to do that later on.(another story).
Another symptom of narcolepsy is the experience of hypnogogic hallucinations which occur at the onset of sleep, when our consciousness shifts from waking to sleeping. It is this intermediary state where most people drift off and go unconscious. Narcoleptics don't go unconscious. They maintain awareness during this cross-over period. For most narcoleptics, and in the early days for myself as well, these are vivid and terrifying audio and visual experiences, often of scary demonic like beings hanging around the room and causing trouble. I used to have werewolf type nighmare scenarios happening and would scream out to my parents. My dad would come in and sleep on the floor next to me so I felt safe enough to go to sleep.
to be continued...
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