Xyrem is one of the most effective treatments for narcolepsy—only it's nearly impossible to get hold of, leading to fears that sufferers might start to self-medicate with drugs bought off the dark web.
Every month, 24-year-old Charlie* goes to his local FedEx office in Chattanooga, Tennessee to pick up a package. The box is always shipped from the same pharmacy, in St. Louis, Missouri, and it always has the same contents: 270 grams of high-grade GHB.
By a strange quirk of chemical fate, Charlie's monthly stash of FDA-approved GHB—a drug usually associated with date rape, gay clubbing, and now chemsex—also happens to be the best known treatment for the serious sleep disorders narcolepsy and cataplexy. GHB's dual stimulant-sedative properties enable sufferers to sleep at night and stay awake in the day. For most people, swallowing a load of G every night would be a bad idea. But for Charlie, who's suffered from sleep disorders since he was a teenager, it's given him his life back.
Narcolepsy, a rare neurological condition that plays havoc with the body's sleep function, commonly makes people crash into a string of deep, short-lasting sleeps in the day. At night, sleep is fractured and fitful. More often than not it is accompanied by cataplexy, sudden, involuntary physical collapses triggered by strong emotion or laughter. Charlie was diagnosed with both conditions when he was 21.
In August, Charlie got his first prescription of Xyrem, GHB's Big Pharma brother. Because of its potential for illegal use, it's one of the most tightly controlled drugs in America. It's also one of the most expensive, meaning only a small percentage of the world's narcolepsy sufferers can get hold of it. I gave Charlie a call to ask him about living with narcolepsy and what it's like to treat it with a load of government-approved G.
VICE: You were diagnosed with narcolepsy at 21. When did you first notice things weren't quite right?
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.
Three years ago it became a real problem. I started getting cataplexy, which is much more severe than narcolepsy. Whenever I had strong emotion, like laughing, I would lose muscle control in my body, a bit like having a seizure. I was conscious, but unable to move.
What was it like living with that?
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 Nightmare
That 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.
What steps did you take to deal with it initially?
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.
I was also getting sleep paralysis every night, where your brain wakes up but your body doesn't. You can't move, apart from your eyeballs. You can't talk. It's terrifying. In the Middle Ages people used to call sleep paralysis being "hag-ridden," because it felt like a creature was holding you down.
I felt isolated, I had no friends, and relationships were impossible. It was hard to eat, so I got skinny, I got depression. Even normal things like taking a shower or cleaning my room became so difficult. Getting a job was out of the question.
When did you find out about GHB/Xyrem?
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.
You take nine grams a night, which is a lot of G. What's the buzz like?
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.
Charlie's got a point. At around $20 per ml, Xyrem is far more expensive than its illegal equivalent, so it remains beyond the reach of narcolepsy or cataplexy sufferers with no health insurance or a secret fortune stashed away. A monthly Xyrem prescription costs between $10,000 and $15,000. Xyrem's manufacturer, Jazz Pharmaceuticals, has patented the drug's use for sleeping disorders, so it can charge what it likes.
Consequently, only one in six—12,000—of America's estimated 200,000 narcolepsy sufferers are benefitting from Xyrem. In the UK, the drug is even more beyond people's reach: The NHS funds only 1 percent of the 25,000 people with narcolepsy or cataplexy in the UK. Last month a judge granted a judicial review to the parents of a teenage narcolepsy sufferer who had been refused funding for Xyrem by NHS England.
That the vast majority of the world's 3 million narcolepsy sufferers are priced out of the best treatment on Earth, when that same drug is available illegally for a fraction of the price online, sets up a dangerous situation. Inevitably, people desperate to get hold of Xyrem will be tempted to hot-wire themselves medication by buying its illicit replica.
The use of illegal drugs for DIY medical treatment is a route well trodden, for example, by those who have dodged the law for decades to obtain cannabis to treat their MS. Or even those thousands of American opiate addicts who've now resorted to buying street heroin after the oxycodone pills to which they had become dependent were made unsuitable for crushing and snorting.
It wouldn't be a surprise to find that there are a number of dark web GHB dealers out there who are unwittingly making narcolepsy sufferers' lives easier. But with GHB's inherent risks, especially its toxic nature when used with alcohol, desperate people attempting to bypass Big Pharma to take matters into their own hands not only risk jail, but a lethal overdose.
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