A rare sleep disorder left Deanne drowsy all the time

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Deanne, sleep center patient.

My name is Deanne Nelson, and I’m from Shakopee. I have a condition called idiopathic hypersomnia with long sleep time, a disorder that causes excessive drowsiness.

The illness is puzzling and frustrating, as the cause is unknown. It’s not due to sleep deprivation, disturbed sleep, insomnia or sleep apnea. It’s similar to narcolepsy, in which people often sleep poorly at night and fall asleep suddenly during the day, but without the muscle weakness.

At its most severe, it was truly crippling. I’ve had a hard time getting out of bed since high school, but the disease got much worse about two years ago—I was sleeping up to 9 hours a night during the week, and up to 13 hours on weekends. And I was still tired! When I was away from home, I’d have to take brief naps during the day, sometimes in my car. It was torture to have to function like that. I felt like this mysterious illness took all the zest out of my life.

I checked my iron levels…no problem. I thought perhaps I was suffering from sleep apnea or chronic fatigue syndrome. After documenting my patterns, I realized that I was barely able to keep my eyes open for nearly half of my waking hours. At that point, I gave in to the realization that something must be really wrong.

I was tired of feeling horrible day after day, so I went to my family doctor and begged her for help. After several conversations, she referred me to Fairview Sleep Centers. I didn’t know it at the time, but that was the start of my new life.

I underwent a sleep study, and doing so led to the diagnosis that changed my life. It took some time because there isn’t just one thing—like a blood test—to administer for hypersomnia. Many factors must systematically be ruled out, and Dr. Conrad Iber and the staff at Fairview Sleep Centers helped me through that process.

The sleep study showed my breathing was fine, eliminating sleep apnea as a cause, and a nap test ruled out narcolepsy. Ultimately, this meant that in my case, my fatigue didn’t have any connection to the quality of my sleep. Through the process of elimination, I was diagnosed with idiopathic hypersomnia.

As soon as I knew what my illness was called, I went to the Society for Ideopathic Hypersomnia website, where I found other people who also have this disorder. I felt so validated. I wasn’t crazy or lazy.

Since May, I’ve been on a medication called Modafinil (moe-DAF-i-nil), which is successful in one-third of hypersomnia cases. At first my insurance wouldn’t pay for it, but when I told my doctor I was having problems getting the medication, he contacted my insurance company and took care of it.

I can say that between my compassionate doctor and prescribed medication, there’s been a miracle in my life—and I’m living each day to the fullest. I almost never feel sleepy anymore. Instead of being under a cloud, I’m more productive, focused, energetic and engaged. I spend time with the two joys of my life, my daughter and my grandson, as well as with my friends and extended family, and am back to enjoying my hobbies. I’m happier—and I have my life back.

Fairview Sleep Centers
Last year, more than 3,500 people improved their health and the quality of their lives by visiting a Fairview sleep center. Our sleep specialists offer sleep consultations and studies at five locations in the Twin Cities metro area. We treat disorders ranging from the very common to the most complex, including:
To make an appointment:
Brooklyn Park – 612-273-5000
Burnsville - 612-273-5000
Chisago City – 612-273-5000
Edina – 952-924-5053
Minneapolis – 612-273-5000
Princeton – 763-389-7740
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