Do you ever get sleepy in the middle of the day? Most of us might suppress a yawn or two if we have to sit through a boring meeting after lunch. But some people are overcome by daytime sleep attacks they are powerless to resist.
Narcolepsy affects up to 200,000 victims. For many the condition is disabling. They cannot work, drive or enjoy social activities because they may fall asleep inadvertently.
Some patients are also afflicted with cataplexy, a condition in which they lose all muscular control and collapse. This can occur while walking across a busy street or during a business meeting. People are especially vulnerable when they experience a strong emotion such as fear, anger or joy.
One grandmother had never held her grandchild, though she longed to do so, because she feared that happiness would make her collapse and drop the baby.
But that has now changed thanks to a drug just approved by the FDA called Xyrem (GHB). According to sleep researcher Martin Scharf, PhD, “With Xyrem she has her life back. She can’t get enough of her grandkids today.”
Dr. Scharf has been studying narcolepsy for decades and started working with GHB almost 20 years ago. One of his first patients had such severe cataplexy that he would fall down 40 times a day. Often this attorney couldn’t walk from his front door to the car parked in front of the house without collapsing. He had to go to Canada to get access to the medication and has been taking GHB since 1983. He is the longest running narcolepsy patient on this medication and is “practicing law and doing wonderfully well.”
It took so long for the compound to be approved because GHB (gamma hydroxybutyrate) is an “orphan” drug. Not enough people suffer from cataplexy for a major drug company to bother investing in research and development of this medicine.
GHB is also one of the most controversial drugs in America. It used to be sold as a dietary supplement in health food stores. But because it was abused by teenagers trying to get high at raves, it became illegal. When mixed with alcohol, GHB can knock a person out, which is why it has also developed a reputation as a “date-rape” drug.
As a result of these negative associations, the FDA is putting stringent controls on Xyrem. It will be available only through one centralized pharmacy which will keep a registry of all patients. Doctors will have to document their diagnosis of narcolepsy and report any adverse effects.
Side effects may include headache, sleep walking, nausea and dizziness. This drug should never be combined with alcohol or other sedatives.
Patients take Xyrem at night and a prescription stimulant during the day. In Dr. Scharf’s opinion, “Xyrem is the most effective treatment for the auxiliary symptoms of narcolepsy ever.” It is also the first drug for narcolepsy that people can take year after year without increasing the dose.
Patients with narcolepsy who would like to know more about this important new drug can call toll free (877) 67-XYREM. The manufacturer, Orphan Medical in Minnetonka, MN, expects to have the medicine on the market before the end of the year.
