You know the feeling — groggy and tired, not fully awake, not fully aware. We all get this way now and then when we’re sleep deprived but for Danielle Hulshizer, it’s a constant way of life.
Hulshizer suffers from idiopathic hypersomnia — a sleep disorder where the feeling of sleepiness never wears off, even after sleeping all night and taking long naps during the day. It has interfered with her education, career, relationships — her entire life.
“If I had a nickel for every time somebody (would) come up to me and go, ‘oh you should go home and sleep — you look so tired,’ I swear I’d be a billionaire right now,” says Hulshizer.
Sleep isn’t restful for Hulshizer: “You don’t wake up feeling energized and ready to go,” she says, “you wake up feeling just as tired as you did 12 hours before when you laid down to go to sleep in the first place.”
‘Rock bottom’
For a long time, Hulshizer’s constant craving for sleep was blamed on her busy schedule as a child when she was a competitive figure skater.
“I would be skating from 2.30 in the morning to 7.30, then go to school, after that cheerleading practice, then homework and then back to the rink for more training,” she says.
“It honestly never occurred to me that there was an issue until moving to Georgia and having all these outside people who didn’t know me as a competitive skater tell me there’s something wrong — ‘you keep falling asleep.'”
After signing up for a sleep study 14 years ago she was diagnosed with hypersomnia. The initial treatment plan was stimulant medication to keep Hulshizer awake. At first it worked but after a few years she started developing migraines and tremors and eventually felt tired again.
Life for her and her fiancée Scott was starting to take its toll. “Living together there have been times where it’s been so bad that in order to get her out of bed in the morning, I’ve literally had to pick her up physically and set her on her feet to see if she’d stand. Sometimes she did, sometimes she’d slump down to the floor,” Scott says.
In Hulshizer’s case, the stimulants she was relying on to stay awake were wearing off. She was getting desperate. But there was hope.
“It felt like rock bottom,” she says, “(The) light at the end of the tunnel would be meeting Dr. Rye and realizing I wasn’t the only one out there going through this.”
The game-changer
Dr. David Rye is a neurologist at the Emory Clinic Sleep Center in Atlanta, Georgia. He specializes in hypersomnia cases, like Hulshizer’s.
After years of research, Dr Rye and his team found that some patients have a hyper sensitivity to a naturally occurring sedative in the brain, known as GABA. Essentially, the hyperactivity of GABA in a patient’s system acts as a “parking brake,” no matter how much “acceleration” is applied from stimulants.
They discovered that a drug called Flumazenil, sometimes used to help bring people out of anesthesia, can overcome the GABA abnormality in patients like Hulshizer.
But the medication, although used in other parts of the world, isn’t approved by the FDA for treatment of hypersomniacs. Two years ago, Hulshizer became only the second person in the United States to get Flumazenil for hypersomnia.
Hulshizer was asked by Dr. Rye to trial the drug to test its efficacy: it turned out to be an instant game-changer.
“Within 15 minutes of placing the tablets under my tongue, that wall that I felt lived in my brain my entire life was just gone,” Hulshizer says. “It crumbled and I was able to think clearly and communicate and talk and hold a conversation with somebody without having to look at them.
“It was incredible — it actually made me feel for the first time like I was alive.”
Hulshizer now takes Flumazenil in the form of a slow-release skin cream. It helps her feel awake — not just stay awake.
“I feel like a whole person now,” she says. “I have been lucky to have Scott in my life as well as my amazing family and without their love and support I never would have found Dr. Rye, I never would have found this treatment and found how to live.”