Finding Answers, Hope for Hypersomnia

We all know the feeling that comes with a bad night’s sleep. We feel groggy, drained, crabby and just flat-out exhausted. Fortunately, for most of us, that experience only happens occasionally. But what if you felt like that all the time? What if all you wanted to do was sleep? And when you weren’t sleeping, it’s what your body and brain craved?

For those with idiopathic hypersomnia, that’s their reality. The condition, though rare, can greatly interfere with your quality of life. After struggling with excessive sleepiness for six years, Sijurjon Jakobsson wanted answers. He and his family traveled more than 3,000 miles, from Iceland to Emory Brain Health Center in Atlanta, to see if David Rye, MD, neurologist and sleep medicine specialist, could help.

Idiopathic hypersomnia is a neurological sleep disorder. It causes excessive daytime sleepiness, even after adequate sleep. Individuals with hypersomnia can seem like they’re sleeping the day away – as much as 20 hours or longer. One cause of hypersomnia is thought to be the over production of a small molecule that is released by the nervous system to the brain.

Typically, when we fall asleep, an area of our brain produces GABA, an inhibitory neurochemical. GABA acts like a brake that suppresses wake-promoting substances, like histamine, dopamine and noradrenaline. This brake is released when we wake up. In some forms of hypersomnia, this brake is never released. The sleepy state persists.

“GABA gives you hypnotic sedation,” explains Dr. Rye. “It’s the same agent that we’ve shown works very similar to a sleeping pill, like Ambien or even Valium.”

Dr. Rye is one of the world’s leading researchers and doctors for hypersomnia. His research and understanding of the condition is leading to better treatments and, most importantly, hope for patients. That hope sometimes comes in a pill form of Flumazenil.

Flumazenil is an FDA-approved drug for people who have overdosed on, or respond too well to, benzodiazepine, like Valium. Dr. Rye has had success prescribing it to patients with hypersomnia; something Anna Sumner Pieschel can vouch for.

“If you told me six years ago that this would be my life, I wouldn’t have thought it possible,” Anna shares, as she takes a quick break from playing with her little boy in the backyard.

Ten years ago, Anna was sleeping up to 18 hours a day. She had to quit her job. She moved in with her parents. Finally, she sought out Dr. Rye as a last-ditch effort to find answers. Anna was the first person who took Flumazenil for hypersomnia. Now, she has a loving family and a successful career.

Sijurjon is hoping for the same positive experience with the medicine for his condition. Shortly after he took his first pill, under the supervision of Dr. Rye and with his parents and Anna cheering him on, he began to feel “something.”

Flumazenil is not a cure. It’s a treatment that works in roughly half of the patients who try it. For those patients it does work for, it opens a new world of possibilities and freedom.

Dr. Rye and his team continue to research and study hypersomnia. There continue to be clinical trials investigating new medicines for the condition. One exciting area of research is understanding the biology of hypersomnia.

In the meantime, Dr. Rye shares his knowledge and experience with patients like Sijurjon and Anna, and providers around the world.

Learn more about the Emory Sleep Center or call 404-778-7777 for additional information.

Emory University and the Emory Brain Health Center have partnered with Georgia Public Broadcasting (GPB) on a television series, Your Fantastic Mind, which features compelling stories about brain-related health and wellness.

Your Fantastic Mind began airing Season 2 in September 2020 on GPB’s statewide television network. The Emmy-winning news magazine-style show highlights patient stories and reports on cutting-edge science and clinical advances in neurology, neurosurgery, psychiatry, sleep medicine, and rehabilitation medicine.

For a complete listing of Season 2 episode air dates and times, visit emoryhealthcare.org/yfm.

Season 1 of Your Fantastic Mind examined topics including sleep apnea, obsessive-compulsive disorder, Alzheimer’s disease, stroke, PTSD, Huntington’s disease, migraines, and video gaming disorder, which has been designated a mental health disorder by the World Health Organization.

Jaye Watson is the show’s host, writer, and executive producer. She is an Emmy- and Edward R. Murrow award-winning veteran Atlanta journalist and video producer for the Emory Brain Health Center.

The Emory Brain Health Center uniquely integrates neurology, neurosurgery, psychiatry and behavioral sciences, rehabilitation medicine and sleep medicine and transforms patient-centered care for brain and spinal cord conditions through research and discovery.

Bringing these specialties together allows more than 400 researchers and clinicians from different areas to collaborate to predict, prevent, treat, or cure devastating diseases and disorders of the brain more rapidly. These collaborations are demonstrated in numerous centers and programs across the Brain Health Center, including the Epilepsy Center, Pituitary Center, Stroke Center, Treatment-Resistant Depression Program, and Veterans Program.

Emory’s multidisciplinary approach is transforming the world’s understanding of the vast frontiers of the brain, harnessing imagination and discovery to address 21st-century challenges.

Learn more about comprehensive, diagnostic, and innovative treatment options at the Emory Brain Health Center.