What if you could sleep 50 hours straight and still never feel truly awake? Welcome to the bizarre, distressing, and totally exhausting world of the hypersomniac.
By Virginia Hughes
For most teenagers, getting out of bed in the morning is a drag. But when Lloyd Johnson was 13 years old, he suddenly found waking up not just irritating, but agonizing and confusing. Sometimes he would open his eyes and already be in the car on the way to school — with no memory of showering or getting dressed. Other days, his family would drag him outside and pour water over his head to stir him, but still he’d remain asleep. His toughest mornings began when he woke up in an empty house, realizing that his family had simply given up on waking him.
Things started not long after a failed surgery. He’d been having intense pains in his right leg for six months, which the doctors attributed to what they thought was a hip disorder. But the procedure was a flop. Lloyd, always a tall kid with a shock of blonde hair, left the hospital with the same old ache in his step — and this bizarre new sleeping habit.
Still, Lloyd and his parents didn’t pay as much attention to his sleeping patterns as they did to the constant pains in his leg. He socialized as much as he could — the movies, church, sports — but pain caused him to skip out frequently, which in turn led to bullying. “Lloyd’s a faker,” the kids would tease. It hurt. By 14, Lloyd was spending more and more days at home, often dozing on the couch or in his bed. Eventually he dropped out of school altogether.
Over the next two years, though, Lloyd’s pain inexplicably got better, and his sleeping went back to normal. He got his driver’s license, started running, and completed his high school requirements. At 18, he enrolled in Murdoch University in his hometown of Perth, Australia, studied computer science, and graduated in the top 2 percent of his class.
It was a complete turnaround. Now, full of energy and enthusiasm, he launched a successful business as a life coach, traveling the world to give weeklong hypnotherapy seminars that sometimes made him $40,000 or more a week. He’d turned into a fitness enthusiast, completing a triathlon, a half marathon, and a 4K with his girlfriend on Sydney’s Bondi Beach. There’s a photo of the two of them mid-stride, beaming, the epitome of carefree, healthy youth. Lloyd had made an extraordinary transition, turning from an immobile, sickly kid into an athletic, confident leader.
But in the spring of 2012, when he was 25, Lloyd’s spark went out again. This time it wasn’t the pain that stole his life: It was the sleep.
Lloyd had just finished a particularly grueling circuit for work, whizzing through seven cities and 11 time zones in just a few months. It was exhausting, and he slept through every minute of every plane ride. He’d use the 15-minute breaks between his hypnotherapy seminars to sneak naps on the floor of empty rooms. But no matter how much he slept, it was never enough.
Lloyd’s doctor thought the culprit was mono: Working too hard and traveling too much must’ve knocked down his immune system. “If you rest, this is going to get better,” the doctor advised. “And if you don’t rest, this will linger.”
So Lloyd headed to Thailand, a warm, cheap, and tranquil spot for tourists. He stopped eating sugar, did juice fasts and daily massages, and tried reflexology, Reiki, and traditional Chinese remedies. He couldn’t have been more relaxed. But his sleepiness only got worse.
Sometimes he fought the constant pull of sleep, forcing himself to socialize when his mind was in a fog. But by denying his problem, he sometimes put himself — and others — in dangerous situations. One day he was cruising toward the mountains at 100 miles an hour on Red Bull, his large, cherry-colored motorcycle. One moment he was staring at the lush, green foothills ahead; next thing he knew, an older woman on a bike slowed down in front of him to make a U-turn. He tried his best to stop, but couldn’t, crashing into the back of her bike. They were both thrown to the ground. She was injured badly, bones visible on her shins and hands. Lloyd had only a few cuts and bruises, but he was rattled. How had that happened? he wondered. Did I zone out?
That was enough. Shortly afterward, Lloyd left his tropical paradise and went back to Australia, determined to figure out what the hell was happening.
What could make you sleep most of the day and still feel lethargic when awake? Lloyd consulted a sleep specialist who told him about hypersomnia, an umbrella category for excessive sleepiness. He began to search around on the internet and read up, but almost everything was about the most famous type of hypersomnia: narcolepsy.
Narcolepsy is characterized by sudden bouts of sleep, and caused by a lack of a brain hormone called hypocretin. Lloyd longed for this kind of clear explanation for his combination of ambiguous symptoms. But he knew he didn’t have narcolepsy. Sleep didn’t hit his brain like a bolt of lightning; it was more like a slow, thick fog.
Next he considered the more obscure types of hypersomnia. There was Kleine-Levin Syndrome, the one-in-a-million disorder characterized by unpredictable episodes of sleepiness, mood swings, and cravings for food and, in some instances, sex. Sufferers might sleep for a week straight, and then be free of symptoms for many months. Could this be it? Lloyd wondered. He didn’t have the mood swings or cravings. But it could explain why he had been sleepy as a teenager, then fine for years, then sleepy again.
Lloyd stumbled upon a Facebook group devoted to idiopathic hypersomnia, the official medical term for unexplained, chronic sleepiness. So many people in the group described undiagnosed problems that sounded just like his. They slept too much, but even in the hours that they were awake, their brains weren’t clear. They used terms like “sleep drunk” and “brain fog,” and talked about how hard it could be to stay focused and alert.
The excitement of finding the group was quickly squashed by its pessimistic posts. Members said there was no hope, that the condition only gets worse, that doctors don’t care. Idiopathic hypersomnia didn’t even have a significant Wikipedia presence, and offline, the mainstream medical community was little help.
Lloyd’s sadness was expanding beyond his control. So was his body: He’d gone from a fit 200 pounds to a soft 280. “I had no willpower,” he says. “I didn’t care. I was depressed, I was unhappy.”
Doubts about the cause of his symptoms crept into the back of his mind. He had always believed his depression was the result of his unexplained sleep disorder. But he was beginning to wonder if it wasn’t the other way around. The lack of a bona fide diagnosis haunted him, just as it had when he was a child. Is the real problem that I’m crazy, or lazy? he thought. What if I’m just a big faker?
In December 2012, on his doctor’s advice, he tried a new antidepressant at twice the normal dose. When he ran out of pills, he plunged into a severe depressive episode, far worse than anything he’d felt before.
For three days he stopped eating and drinking, leaving his bed only to stumble to the bathroom. At this point, after eight months of this confusing, hazy existence, Lloyd thought seriously about killing himself, of letting himself simply waste away.
“I remember consciously deciding, I don’t want this anymore.”
It was just a week before Christmas. His mother, out of her mind with worry, sat on Lloyd’s bed and tried to explain the ghastly process of a body starving to death. “I bargained with him,” she says. Stick it out for just a few more months, she pleaded, so that at least family and friends could come say goodbye and he wouldn’t forever ruin the Christmas holiday.
Okay, he told her. He would try.
Lloyd made it through Christmas, but the next couple of months were almost as tough. He shut down his hypnotherapy business, but the Australian disability office wouldn’t recognize his condition as an illness.
He found solace online, sharing stories in the IH Facebook group. Soon he was spending most of his free time developing his own site for fellow hypersomniacs: livingwithhypersomnia.com, or LWH for short. The site offered ways to connect with other patients, as well as a host of information about symptoms and treatments.
The most common symptom of idiopathic hypersomnia is tortured waking up, followed by an aftermath of up to four hours of mental sluggishness. The first medical description, published in 1957 by a Czech neurologist named Bedřich Roth, underscored it. Alarm clocks have no effect on these patients, Roth noted. “Awakening procedures must be vigorous and persistent: it is usually necessary to shake the patient repeatedly before he reacts,” he later wrote. Even then, they’re slow, disoriented, and uncoordinated, “similar to the gait in alcoholic drunkenness.”
Some patients get sleep drunk after waking, others don’t. Most, like Lloyd, sleep for long periods at night — 10, 12, 14 hours — as deeply as if they were under general anesthesia. Others sleep six or eight hours but still nap throughout the day. Many patients, about 70 percent, respond to stimulant medications — but the effect is only ever partial.
Nobody really knows how many people have hypersomnia. Most estimates put it around one or two people out of every 50,000. In one of the early posts on his website, Lloyd put up a YouTube video of himself walking through all of the conditions that must be ruled out — narcolepsy, sleep apnea, insomnia, circadian rhythm disorder, drug use, drug withdrawal, schizophrenia, severe depression — before landing on his elusive diagnosis. With his mop of messy blonde curls and full beard, he’s good on camera — upbeat, smiley, immediately likable. Toward the end, though, he shifts into a more somber tone. “For many people it takes years, if not decades, but it is very likely that it’s going to take months,” he says.
One day, though, everything started to change. Lloyd was sitting in his psychiatrist’s waiting room, killing time on his phone. A message dropped into Facebook from a doctor who had been diagnosed with IH. She was impressed by his website, and offered to help beef up some of its scientific content. They chatted back and forth for the next four or five hours.
And that’s when she told Lloyd about Anna.
Anna Sumner was a classic type A: ambitious, competitive, active — the type of person who gets so much done, it’s hard to believe she ever sleeps.
She went to Princeton, where she joined a sorority and social clubs and still ranked at the top of her class. She taught in Bangkok, and worked on a novel in London. Then she went to law school at Duke, where she made Law Review and volunteered at an animal shelter every weekend. She landed a clerkship with one of the most powerful judges in the country.
But she achieved all of this while harboring a humiliating addiction to sleep. Anna napped every chance she could, getting at least 10 or 12 hours of sleep a day. And she never felt refreshed.
In the fall of 2004, Anna joined a prestigious firm in Atlanta and began working grueling 80-hour weeks. Napping was not an option. She started sleeping through her alarms and feeling like she might die in the afternoon. “It’s that insidious thought process,” she says. “You think, well, I just need a little bit more. An extra 30 minutes this morning and I’ll feel better. A nap this afternoon, I’ll feel better. And I never did.”
Not knowing what else to do, she cold-called the sleep center at nearby Emory University. The doctors there put her on prescription stimulants — a wake-promoting drug called modafinil (better known in the U.S. as Provigil), supplemented with dextroamphetamine (better known on the street as speed).
The drugs greatly improved Anna’s day-to-day function. But after a few months their effectiveness waned, so the doctors increased her doses again and again. Anna is tiny, just over five feet tall and around 100 pounds, and she lost an unhealthy amount of weight. Her hands were always shaking and her heart was always racing, so much that she started taking blood pressure medication. “I was vibrating around,” she says.
After a year on stimulants, Anna’s body fought back. She went to sleep one night and woke up 24 hours later. Then came another sleeping spell, and another. Soon it was happening every week: The longest spell was 53 hours. Her assistant would drive by her house to make sure she wasn’t dead in a ditch somewhere. Everything came to a head in April 2007, when Anna almost slept through an important hearing. She took leave from her job: At just 31 years old, she was terrified she would never have her brain back. Her mother moved in with her to make sure she ate and got to appointments at Emory.
Anna’s muscles were wasting, and her life was fading. “You don’t really think about somebody dying from sleeping too much,” recalls Kathy Parker, a nurse practitioner who worked at the Emory clinic at the time. “We were losing this young woman. And I can’t tell you how horrible that was to watch.”
That’s when the team at Emory took a chance.
On June 20, 2007, Anna went to the hospital and was given Flumazenil — a drug that’s typically used in emergency rooms to reverse the effects of anesthesia. She knew that all other options had been exhausted; her future depended on this drug. The doctors were nervous, too; they gave her a bed in the hospital’s seizure unit, just in case. She lay there in colorful pajamas, EEG wires protruding from her head, and her scared parents hovering outside the room. “There she was with all the tubes and needles and stuff,” her mother recalls. Parker held her hand while Anna watched the clear liquid drip slowly into her arm. Eventually, the dose reached a sweet spot that lifted her eyelids and cleared her mind.
When her parents came back in, Anna looked them with wide eyes and said, “Momma, Daddy, I feel awake.” She started talking a mile a minute, and reached for her laptop to send an email to friends and family. “My brain was working,” she recalls. “I was working, I was there.”
Over the next several years, the Emory researchers performed spinal taps on 31 other patients with hypersomnia. The researchers analyzed the patients’ cerebrospinal fluid — the liquid that bathes the brain — and discovered a common pattern, a distinctive chemical signature that does not show up in normal sleepers.
What’s more, when given an infusion of Flumazenil, seven of these hypersomnia patients felt more awake, just like Anna had, and saw their reaction times improve. The Emory researchers published these findings in a well-respected academic journal at the end of 2012: The case was a big deal in the medical world. Sleeping Beauty, as the media nicknamed Anna, had awakened.
When Lloyd heard about Anna, he was floored. He couldn’t believe that any scientists cared about people with his condition, let alone that there might be a treatment for it.
Energized by the chance of a cure, Lloyd threw himself into the science. At the heart of it all was something called GABA, gamma-aminobutyric acid.
Neurons talk to each other in an electric code: A pulse leaves the first neuron, passes through a narrow cleft of spinal fluid, called the synapse, and reaches the second neuron.
One of the chemicals in the cleft is GABA. The vast majority of brain chemicals are excitatory, tasked with revving our neural engines, but GABA is inhibitory: It acts like a brake.
Low GABA levels make the brain too excitable, leading to seizures. But extremely high GABA activity — which is what happens, say, when somebody is under general anesthesia — switches off consciousness entirely. In the Emory study, the patients with hypersomnia had GABA activity that was much higher — sometimes three, four, or even five times higher — than normal. The doctors hypothesized that, for some unknown reason, their brains were making some kind of Valium-like chemical — a “sleepy juice” — that left them in a state of perma-grog.
Flumazenil, however, influences GABA activity, lifting up the brakes that Valium or alcohol try to slam down on. That’s why it woke up Anna.
Lloyd was excited enough by learning the basics that he posted a 20-minute video on YouTube so his Facebook community could learn, too. He was careful to note that Flumazenil shouldn’t be considered a cure for hypersomnia. After all, only one person in the world — Anna Sumner — had taken the drug for an extended period of time. It was potentially very dangerous.
But there was also a more practical problem with Flumazenil: access.
Even if Lloyd had rounded up every drop of the drug from the storage rooms of every hospital in the world, it would be enough only to keep a handful of hypersomnia patients awake. Anna’s supply had come directly from the drug’s maker, Hoffmann-La Roche, in complicated legal arrangement with federal regulators. And it wasn’t easy to take, either. Anna had arranged for a specialist pharmacy in Atlanta to make tablets that dissolved under her tongue. Otherwise it was available only intravenously.
Still, the online hypersomnia community was buzzing about Anna’s dramatic reawakening. And that’s when Lloyd heard some exciting new information.
A few years earlier, in 2009, Anna had been getting along swimmingly with her Flumazenil tablets. Then she came down with a bad case of bronchitis, and her doctor prescribed a common antibiotic, clarithromycin. The first night she took it she couldn’t sleep at all. The next night, the same insomnia. By the next day she was frightened. She called Lynn Marie Trotti, one of her sleep doctors at Emory. “I was like, ‘Oh my God, I can’t do this,’” she says.
Could it be that clarithromycin somehow suppressed the GABA system like Flumazenil? The researchers investigated, and found that it did exactly that .
It felt like a breakthrough: While Flumazenil is almost impossible to get hold of, clarithromycin is commonly prescribed. The Emory doctors began giving it to some of their idiopathic hypersomnia patients, and two-thirds of them reported feeling better afterward.
After Lloyd heard about this, he persuaded his psychiatrist to write him a prescription, and posted a series of video blogs chronicling his experience with the drug, which the group members nicknamed “clari.” By 12 days in, Lloyd noticed a stunning change. For the first time in months, he had a day full of energy. He shaved his beard. He went outside. He even got a haircut. The next day was also great, and the next.
Then came a crash. He increased his dose to the maximum recommended, only to experience uncomfortable gastrointestinal side effects. “My mouth constantly tastes like a rusty sink,” he told the camera.
After 35 days on clari, he realized: The drug wasn’t for him. It reduced the amount of time he slept at night, from anything up to 18 hours to as little as six. But he still napped all day, and still had a mental fog.
By this time, Lloyd was one of the loudest and most energetic voices in the online hypersomnia community. His virtual friends made him feel a lot better, and he made them feel better, too.
Facebook, and Lloyd’s group, was (and is) the best place to find information on symptoms, treatments, and side effects. Many of the posts are silly and light-hearted. Group members often call themselves “sleepyheads,” and they often describe in colorful detail the alarm devices they use to combat their symptoms: a two-wheeled clock that screams and whirrs across the floor; a watch that gives an electric shock; a clock with thumb tacks covering the snooze button; a square piece of carpet that doesn’t stop ringing until you place your feet on it; even a product called the Sonic Bomb that releases a miserable 113-decibel beep and triggers a vibrator to go off beneath the mattress.
Matt Duffin, a 28-year-old from Reading, England, hooked up a large photography lamp to a digital timer. “You can practically see it through the walls it’s so bright,” he says. “I sleep through that.” Jonas Audia, a 21-year-old from France, didn’t respond to any kind of audio- or light-based wake-up method. So he bought a $70 electric winch that would hook to his belt and pull him out of bed. He ultimately couldn’t get it to work, but the story gave everybody a good chuckle.
Some of the things they share, though, are serious. Many members have dropped out of school, lost their jobs, or gone on permanent disability. Others have divorced their partners and alienated their children. Most of their posts tell tragic stories, not only about what it’s like to live with the symptoms of hypersomnia, but to have those symptoms be routinely dismissed or flat-out denied.
Take Dean Jordheim, a 47-year-old from Grand Forks, North Dakota. Dean doesn’t sleep for long periods at night, but his head feels foggy all the time. He has a terrible short-term memory and sometimes lacks even basic decision-making skills, such as checking off items on a grocery list. Reading, he says, can feel like “a big mess of words that just mean nothing.” His wife divorced him and took custody of their four young daughters. Now on weekends the girls can choose whether to stay with their mom or dad, but Dean has trouble keeping his house clean and his cupboards stocked, and he doesn’t have the money or the energy for fun activities. They usually choose mom. “I don’t blame them for not wanting to be here.”
The stories go on and on. Some of the posts with the most comments describe the unhelpful advice sleepyheads have heard from friends and family: Work out more; get more sun; go to bed earlier; think positive thoughts; try harder; pray.
But online, their symptoms aren’t questioned, and they never have to make excuses. Still, that was no help to Lloyd. “I’m just so fed up with the f$^#@ing disease,” he posted. “I’ve tried pretty much every drug legally available to me in Australia (and a couple more)… I’ve tried diet changes, lifestyle changes and hairstyle changes. Yet nothing seems to make any flipping difference.”
The rant spurred 170 comments.
Not long after his misadventure with clari, Lloyd stumbled on a post by a woman who had received Flumazenil to treat her addiction to benzos, the drug family that includes Xanax and Valium. She credited the approach to “the pioneering work of Doctor George O’Neil.”
Lloyd googled O’Neil and found quite a bit of information about him — and his controversial approach to addiction treatment. Since 2000, O’Neil had been using implants of naltrexone — a drug that blocks opiate receptors — to treat heroin and alcohol cravings, and treated some benzo addicts with Flumazenil implants.
Then there was this: O’Neil’s clinic was actually in Perth, Australia — just 10 minutes away from Lloyd’s house. He was astonished. Flumazenil, the drug that cured Anna, was actually within his reach. He had to try it.
Lloyd called the clinic. “I’m not addicted to drugs,” he said, “but I want to talk to someone about accessing the Flumazenil.”
O’Neil was immediately intrigued by the possibilities and, on the afternoon of April 30, 2013, Lloyd hauled himself out of bed and went to the clinic with his mum. It surprised them: Shabby, small, white and unadorned, it looked more like an accountant’s office than a medical facility. Lloyd was given an extensive questionnaire. “It’s like, ‘How long have you been addicted to: Heroin? Ice? Smack? How many of these things have you used in the last day? Week? Year?’” Lloyd recalls, laughing. He walked out of the clinic with a fat plastic syringe infusing Flumazenil into his belly.
The tiny quantity — 16 milligrams of active drug — would last him four days and cost $333 Australian dollars. “The next thing I know I’m sitting in the car on the way home with this thing that’s got a sticker that says Flumazenil,” Lloyd recalls. He snapped a photo and posted it to Facebook. The comments went crazy.
“Jealous! Good luck!”
“yayy, if it works,I know where Im moving to! lol”
“whoot whoot !!”
Lloyd began to feel better after just an hour. That’s when he started to record the first of several video blogs describing his experience. His face is beaming.
“I’m feeling absolutely terrific,” he said. “In my mind, there’s something going on. Call it placebo, call it this thousand dollars’ worth of miracle juice that I’m trying, I don’t know. But I have my fingers crossed.”
He woke up the next morning and immediately shut his eyes, expecting to fall back to sleep like always. He didn’t.
“There’s one side effect that’s proving to be a real problem,” he said on his second video installment. “I’ve got this big grin that I can’t seem to wipe off my face.”
Once the effectiveness was confirmed, he returned to the clinic to try something more long-lasting: an under-the-skin implant that would slowly release the drug for six to eight weeks and then dissolve. It was a busy day at the clinic when he arrived with heroin addicts everywhere, but the doctor gave him a local anesthetic, made an incision in his stomach, and dropped in the implant.
It seemed to work as well as the infusion. Lloyd bought a bike, started driving again, caught up with friends he hadn’t seen in forever. But after two or three weeks, the sleepiness returned. He tried another round of implants, but the same thing happened. So he went back to the infusions, refilling the syringe every four days. After five or six weeks, that too, would inexplicably stop working. Then Lloyd would take several weeks off of the Flumazenil, and only after this “drug holiday” would it mysteriously start working again. It was something, but six weeks on, six weeks off is not a great way to live.
Nearly a year ago, Lloyd decided to let the Emory doctors test his spinal fluid for sleepy juice. David Rye, the director of the Emory sleep clinic, performed the procedure, while another patient videotaped the whole grisly thing. Lloyd, of course, added a jarringly cheerful hip-hop soundtrack and posted it straight to YouTube.
The results would take weeks to process, and the wait made him nervous.
In some ways, the result was probably irrelevant. He already had access to Flumazenil, after all, and was already benefitting from it, albeit intermittently. And he certainly wouldn’t lose his tight-knit community; the sleepyheads are united around a diverse array of symptoms, whether they are caused by GABA or not.
In other ways, though, the diagnosis might be incredibly important. If Lloyd didn’t have a chemical imbalance, would that mean that the flumazenil was acting as a placebo? Would it make him wonder, yet again, if his mind was manufacturing the whole thing?
After all these years, he could finally have a test result that didn’t come back negative — a real diagnosis. Or he could, once again, be back to square one.
Last spring, Lloyd and several other idiopathic hypersomnia patients held the first “Living with Hypersomnia” conference. It was designed to connect patients in person and allow them to hear directly from hypersomnia researchers about their work. They rented a big meeting room at a Marriott near the Atlanta airport and, thanks mostly to Facebook promotion, sold out all 140 seats. One was mine.
The night before the meeting I was having dinner at the hotel bar, a faux-modern tableau of white and red and shiny metallic, and watched a group of a dozen or so gather at a table near the front desk. They were hugging each other energetically and exclaiming, and many were wearing matching T-shirts. I knew they had to be the sleepyheads.
Over breakfast the next morning, everybody seemed to be buzzing about Flumazenil. At Emory, David Rye had made a breakthrough — not in understanding the condition, but in treating it, and the reason was Lloyd. Rye had seen Lloyd’s reaction to Flumazenil, and that had led him to look at O’Neil’s work. But because of U.S. regulations, the Emory clinic wasn’t allowed to prescribe Flumazenil to hypersomnia patients. “We had patients saying, ‘I’m flying to Perth.’ And I’m like, ‘This is bullshit,’” Rye recalls. He thought, If this guy can do this in Australia and get access to this drug, there’s got to be something we can do. We live in a free frickin’ country.
Inspired by Lloyd, Rye and his colleagues had endured a complicated negotiation with the FDA that finally reached an agreement that allowed them to prescribe Flumazenil, in tablet form, to certain patients with idiopathic hypersomnia who had abnormally high GABA levels. Word spread quickly.
The sleepyheads couldn’t wait to hear about the latest happenings from the Emory team, and some were desperate to try the drug. But others felt mixed emotions.
Lauren Frazier, a 31-year-old from Catonsville, Maryland, was diagnosed with IH after years of doctors telling her she was normal. “I don’t want to do a spinal tap and then be told, ‘Oh, you don’t have [high GABA], so there’s nothing wrong with you,’” she told me. “To have the hope and then have it taken away from you would be worse than never finding out.”
The convention sessions began at 9 a.m. (far earlier than most participants would have liked), the room was packed, and Lloyd’s charm as moderator kept everything rolling smoothly. He encouraged the audience to buy raffle tickets: The proceeds would help fund more research. “You snooze, you lose!” he said, one of an endless stream of mostly terrible sleep-related jokes heard throughout the day. Out in the hallway, others sold T-shirts. One was bright orange with a drawing of a molecule and the words “Powered by Flumazenil.”
The day was dense with information — Rye discussed the history of hypersomnia research, Trotti explained their clinical research at Emory. The audience was full of questions: Was Flumazenil safe? Legal? And most urgent: How could they get it? Yes, it was safe and legal, Trotti said, though the Emory clinic’s waiting list for patient evaluation was getting longer by the day. “We’d love to move this forward,” Rye explained, but the costs of the spinal fluid tests were becoming a major problem. “We have no money,” he said. “I mean, seriously.”
Andy Jenkins, the neuroscientist who developed the spinal fluid test, gave an impressively entertaining lecture on GABA receptors. “Why do we have more GABA activity?” somebody asked. Nobody knows, said Jenkins. One idea is that it’s triggered by anesthesia. Lloyd asked the audience how many of them believed their hypersomnia was the result of anesthesia. About one-quarter of the hands went up. “Whoa, whoa, whoa, whoa, whoa,” Jenkins said as he watched the sleepyheads come alive.
Anna Sumner, a legend to everyone in the room, did a Q&A, with her parents watching from the crowd. Throughout the day, audience members nodded off here and there, as expected (“Turn the lights on!” one shouted.) Most seemed buoyed by the information and the fraternity.
At the end of the long day, Rye took the microphone a final time. He described the skepticism he’s met from other sleep scientists, despite the remarkable effects he and his colleagues had reported in the study. “It was pretty hard,” he said, getting audibly choked up. “Do I think I know everything about this? No. But one thing I do know is that these medications work.”
When I started following Lloyd’s life, I had thought this was a story about science and drug development — did Flumazenil work on people other than Anna? If so, would they ever be able to buy it? But, after talking to the sleepyheads at the conference, I realized that the medical mystery was overshadowed by a much bigger story.
It’s not about a miracle cure. The sleepyheads were all keenly interested in Flumazenil, of course, but that’s not why most of them had made the trip. They were there to meet other people with the same confusing condition. They wanted to get advice, commiserate, laugh at inside jokes — to be heard and understood.
Even Lloyd, who has at least as much passion for Flumazenil science as the researchers do, was there primarily to be with his fellow sufferers.
Not everyone likes him, of course. In particular, his decision to make some money selling some of the stimulants he used online — a small business that was legal in Australia — has offended many of his American friends, where it would be against the law. Still, many see him as a hero, somebody who’s willing to use himself as a guinea pig for whatever new treatment comes along, then report back to the rest. As one group member posted: “He is our Aussie team leader. A man with an invisible disease wearing a superhero cape of Flumazenil.”
He’s no longer running his own business, but he’s heavily involved in fundraising (this fall the Facebook group raised $75,000 for the Emory team). He’s no longer traveling the world to give seminars as a life coach, but every day he’s coaching the Facebook’s group’s nearly 2,000 members, and traveling around the world to meet them.
A few weeks after leaving the conference, Lloyd flew back to Atlanta to get the results of his spinal tap. He was anxious. But he didn’t have to worry: The tests showed Lloyd’s GABA levels were three times higher than average — and not just higher than normal people, but higher than most other sleepyheads, too. He could trust his body — he wasn’t a faker. He finally had something real, something objective and scientific, to show other people.
He made a chart showing the pattern of normal sleepers compared with people with idiopathic hypersomnia, marking his own levels with a big yellow dot. In the margin is a note that this level of GABA activity is equivalent to a blood alcohol level of 0.10. Lloyd really was sleep drunk after all.
His mum keeps the chart on her phone and shows it to friends and family who ask about Lloyd. She’s never doubted that he was really sick, but she has combatted a lot of skepticism over the years.
“To some people it sounds really pathetic. You know, ‘Get a grip on yourself, lad, and get out there and go for it,’” she says. Now that she can tell people that Lloyd had his spinal fluid measured and has a chemical imbalance, “that makes more sense to them,” she says. “It does sort of validate it, somehow.”
But Lloyd’s own reaction to his test was more ambivalent. “I placed all this importance on getting properly diagnosed,” he said to me, shortly after finding out. “And then I got properly diagnosed, and then it was like, ‘Hang on. Well, like, what next?’”
He was certainly relieved to know that his symptoms were not psychosomatic. On the other hand, the positive test result wasn’t nearly as gratifying as he thought it would be. He had already diagnosed himself, in a way, by being such an active part of the sleepyhead community. And he had already found some relief — but not nearly enough to get his full life back. He was still searching for a real cure.
“You know when you go mountain walking?” he said. “And looking off into the distance, you think, If I can just get to the top. I can see the top. And then you get to the top, and you realize that you haven’t hit the peak — there’s another peak.”
This story was written by Virginia Hughes. It was edited by Bobbie Johnson, fact-checked by Emily Loftis, and copy-edited by Lawrence Levi. Lead photograph © 2015 The Andy Warhol Foundation for the Visual Arts/ARS. Photographs of Lloyd by Claire Martin for Matter.