What were your initial symptoms?
For years I felt sleep-deprived no matter how much rest I got the night or day before. In 2009 my symptoms expanded to include brain fog, poor concentration, and sleep paralysis [a temporary inability to move or speak just before falling asleep or fully waking]. Everything came to a head that year when I fell asleep while driving. I was taking my son to soccer practice and just went out. My son pulled the steering wheel and got us out of oncoming traffic, but we hit a pole.
How were you diagnosed?
After years of sensing that something was wrong, I went to a neurologist who thought I had epilepsy or sleep apnea. I participated in two sleep studies and started taking antiseizure medication. It turned out I did not have epilepsy, and the sleep studies determined that I didn't have apnea. During my third sleep study in 2011, I met a technician who connected me with a doctor who was studying idiopathic hypersomnia, the inability to stay awake during the day even after a full night's rest.
Do you take medication?
I take Xywav, a drug recently approved by the FDA for hypersomnia, which is a mix of calcium, magnesium, potassium, and sodium oxybate salts. Before Xywav, my doctors would prescribe other drugs off-label. Xywav has improved my quality of sleep so it's more restorative.
How has hypersomnia affected your life?
I didn't drive for two years after my accident because I was so worried it might happen again. I quit work and went on permanent disability. I stopped doing certain things so I had energy for the basics. I was often depressed and lonely.
What motivated you to start a support group?
I wanted to create a space where people understood me, and vice versa. I felt validated and comforted when other people told me how they were dealing with things. It evolved organically from sharing stories and exchanging information to hosting disability lawyers and sleep specialists for question-and-answer sessions and even taking trips together. Three times we went on a “snooze cruise.” Cruises are perfect for sleepers; they have huge lounge chairs everywhere.
What other advocacy work have you done?
I am part of the patient advocacy and advice council for the Hypersomnia Foundation and recently became a board member. I've spoken at conferences and helped people start support groups in their areas. I also recommend The Woman Who Couldn't Wake Up by Quinn Eastman to anyone interested in learning more about the condition.
