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Charlie: My symptoms started when I was about 15. I kept on falling asleep in lessons, like in every lesson, for about half an hour. Throughout the day there was always this background tiredness, but then I would feel this intense tiredness, put my head down on the desk and I was deep asleep in less than 60 seconds.And then things began to get worse?
I went to study bioengineering at university in Atlanta, but my friends were always finding me passed out somewhere. During fraternity rush [when fraternities recruit new members] I was being found asleep on other people's lawns, where I had been chatting to them. It was embarrassing and my friends were concerned about me. I started going out less because I knew I was going to fall asleep. I always wore a zip-up fleece because it was easy to take off and use as a quick pillow.
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Imagine how you feel after two days and nights without sleep. Your eyes are swollen and rimmed by dark circles. Everyone around you looks fresh and rested, ready to start their day. You try to speak a coherent sentence, but you lose your train of thought half way through.Read on Motherboard: Sleep Paralysis Is an Inescapable Waking NightmareThat is how I felt within a few hours of waking up every day. The desire to sleep was intense. The option to return to sleep was always there, but I knew I was sleeping my job, my relationships, and my life away. Narcolepsy is not a disease often associated with loss of life, but it is, in a sense. It's the slow loss of hours, days, and eventually years of your life to sleep. So I struggled against it. When I eventually gave in, the sleep I returned to wasn't restful.Did you end up in any dangerous situations?
The most dangerous thing was having cataplexy attacks in bars. I've spilled drinks all over people in many places. One time I had an attack and spilled my drink on a 6'5" guy. He wanted to fight me; he was very angry. I told him I had a medical condition, said sorry and bought him and his girlfriend a drink. Luckily she calmed him down, because he really wanted to fight me. I had to be careful driving. I had a girlfriend who lived a four-hour drive away on the coast, so I took pit stops at gas stations. I would just put the seat back and sleep.
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I researched narcolepsy and cataplexy on the web and I knew it was what I had. Some people with narcolepsy were using Adderall, so I got it from my friends who had it prescribed for ADHD. I ended up using 30mg a day, mainly to get me through lab classes at university, which were very important for my degree. When I went for sleep tests and got officially diagnosed, the doctors said I went into deep REM sleep very rapidly, in five minutes, compared to 90 minutes for most people. It explained why I would have 20-minute naps with vivid dreams.My doctor prescribed me Modafinil, which was good. It allowed me to stay awake for much of the day and complete my degree. Like with Adderall, my tolerance grew and I had to take double the dose. It caused brain fog, it totally messed with my night sleeping and did nothing for cataplexy. It was around then that I laughed at something my mom said in her kitchen, collapsed, and ended up in hospital with a badly bust lip.So despite the Modafinil, things got worse?
By the time I graduated at 23 I was living a non-functional, non-existent life. I was sleeping for an hour, then waking up for 10 minutes in a repeat pattern through the day. Sleep in the night was badly fractured. I had very realistic, vivid cinematic dreams, which happened to be quite mundane, so it was hard to tell what was real and what was not.
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I actually knew about GHB and that it was used to treat narcolepsy before I had any idea that I had the disease. I remember reading about it on [drug forum] Erowid and thinking that it was strange that a sedative was used to treat an illness where people slept too much. I was actually interested in trying it recreationally, but I figured I would never come across it, since it had the stigma of sexual exploitation attached to it. I guess I found some, though not in the way I was expecting.What effect did it have on your life?
I was lucky. I could get Xyrem prescribed because I'd already done the sleep studies and I had health insurance. I stopped having vivid dreams and now I stay wide awake until the nighttime, which I've not done since I was a kid. I take my first dose at 10 PM and I'm asleep by 10:30 PM. The next dose is at 2AM and I'm out until I wake at 6 AM. I was overjoyed the first time I realized that I hadn't fallen over from cataplexy just for laughing. It's amazing how such an intrinsic part of being human can become so devastating. It allowed me to work for several months, at an animal shelter, after I got on it. Basically, it's completely changed my life.
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I look forward to taking it every night because the first 20 minutes before I fall asleep are amazing. I started on two doses a night of 2.25 grams each [2.25 grams constitutes a medium to strong recreational dose of the drug]. It felt extremely recreational, a bit like a cross between how it feels on ecstasy and feeling drunk. Basically, I felt pretty good. Then I titrated up to nine grams a night. Luckily GHB has a very short half-life—it metabolizes into CO2 and water in the body—so by the time I take it each evening, there's none left in my body.Are there any side effects?
Increased anxiety. And it also gives me a hangover kind of feeling. I can't drink alcohol any more, because if I mess up the timing it can kill me, so that's difficult.How does the future look for you now?
All these years of narcolepsy have left my memory and focus pretty shot; I have no recollection of dates. I have a goldfish memory. Xyrem is no cure—I have to keep taking it for rest of my life—but it's such a relief to feel normal again. Others are not so lucky, and what I have just described will be their reality for the rest of their lives.
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