Georgia Public Broadcasting video filmed for the Emory/GPB series Your Fantastic Mind, both his family and Anna were watching. The effect was not immediate. “This is my last resort,” he said. “If this doesn’t work, I don’t know.” Sigurjon first felt agitation in his legs: “My body is telling me to go move…to go running or go do something.” Within five minutes the drug’s effects began to kick in and he smiled. “It’s like my eyes are being lifted up and yeah—it’s a strange feeling,” he said. “It feels really good…I don’t even remember feeling like this.” The Emory researchers monitored physical changes in his alertness, with an EEG, to rule out the placebo effect. On days he tried flumazenil, he performed tests measuring his reaction
time, which became faster after taking the drug. In addition, after applying a skin cream containing flumazenil, he was able to wake up spontaneously for the first time in years —to his surprise—without the aid of an alarm clock. In January 2019, Sigurjon told Rye he was slowly building stamina to be able to work at his construction job and perhaps return to school. Rye has other patients from European countries who periodically visit Atlanta for check-ups and to maintain their flumazenil prescriptions. Flumazenil is not magic, and its effects on healthy or sleep-deprived people have been inconsistent in previous studies. In a review of 153 Emory Sleep Center patients who didn’t respond well to conventional stimulants, about 60 percent reported that flumazenil helped them become more awake. A smaller number (39 percent) stuck with the drug long term; the effects weakened over time in a few patients. The most common side effects were dizziness and anxiety. Still, the drug offers hope to people with hypersomnia who have had to stop school, leave their jobs, or apply for disability. A recently formed nonprofit, the
Emory sleep specialist Lynn Marie Trotti says the Hypersomnia Foundation’s patient registry, which has 1,400 participants, has been useful in identifying patterns.
Hypersomnia Foundation, is working to raise awareness and promote research. It hosts an annual conference—the first of which was held at Emory. Rye chairs its scientific advisory board and Lynn Marie Trotti, Emory associate professor of neurology and sleep specialist, chairs its medical advisory board. “For some people, hypersomnia really puts their lives on hold, especially if the usual medications don’t work for them,” Trotti says. “We’re seeking a better understanding of the disorder.” EHD
Hypersomnia symptoms zz
eople with hypersomnia crave sleep in the daytime, no matter P how many hours they sleep at night.
zz
ey struggle to wake, despite setting multiple alarms and may Th have difficulty rising from bed (sleep inertia).
zz
They may start the day feeling extremely groggy or “sleep drunk.”
zz
ey can experience brain fog, resulting in reduced focus and Th concentration during waking hours.
*Source: Hypersomnia Foundation
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