01/27/2012 01:41 pm ET

5 Tips For Battling Fatal Familial Insomnia

Fatal familial insomnia is an extremely rare sleep disorder. It usually affects only people with a specific genetic anomaly. We spoke to Beth Malow, M.D., medical director of the Vanderbilt Sleep Disorder Center in Nashville, Tennessee, for one approach to the medical problems you or your loved one may suffer from when trying to sleep.

If you think you might have fatal familial insomnia, use this as a reference point before getting personalized medical advice from your doctor or other accredited sleep expert. --Shellie Braeuner

Fatal familial insomnia is a rare genetic prion disease, and insomnia is one of its most visible symptoms. In FFI, prions -- misshapen proteins that attack the brain -- attack the thalamus, which is the part of the brain that regulates sleep. As the disease progresses, the sufferer has periods of paranoia, hallucinations and dementia, but understands that he cannot sleep. Ultimately, the FFI patient falls into a coma and dies. There is no treatment or cure. So how do you determine if you have normal insomnia or FFI?


Don't assume that a period of insomnia is due to fatal familial insomnia. "This disease is so rare," Dr. Malow states. "The vast majority of insomnia cases are due to another completely treatable condition."

Explore Your Family

"Fatal familial insomnia affects specific genetic lines," Dr. Malow states. Look at your own family tree. If no one in your family has died of FFI, you probably don't have the disease.

Consider Your Age

Fatal familial insomnia is a late blooming disorder and doesn't show up until the patient is around 40. Insomnia in younger people is probably due to other, treatable causes.

Seek Professional Help

"If your insomnia persists," Dr. Malow suggests, "talk to your doctor." Most forms of insomnia are treatable with a wide range of drugs and therapies.

Order A Genetic Assay

Even if members of your family have been diagnosed with fatal familial insomnia, it doesn't mean that you have the anomaly. Genetic testing can show if the mutation is present or not. Not everyone with the mutated gene develops FFI, but they have a fifty-fifty chance of passing the gene to their children.

Beth Malow, M.D., earned her medical degree at Northwestern University in Chicago, Illinois, and her M.S. from the University of Michigan, Ann Arbor. In addition to her role as the medical director of the Vanderbilt Sleep Disorders Center at Vanderbilt University Medical Center, she is also the director of the Vanderbilt Sleep Research Core. Malow is an elected member of the American Neurological Association.

Have you ever suffered from a sleep disorder? What worked for you?