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.

(Martin Parr/Magnum)

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.

(Tim Hetherington/Magnum)

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.”

(Cornell Capa/Magnum)

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.

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