Starting a new treatment for any medical condition can make you nervous. Not knowing enough about the medicine may make you hesitant about starting it. People living with narcolepsy sometimes voice concerns about a type of medicine called GHB (sodium gamma-hydroxybutyrate), also called sodium oxybate.¹ In this article, we’ll discuss some of those concerns and look at what scientists who’ve studied sodium oxybate say about its safety and effectiveness for people with narcolepsy.

What Is Sodium Oxybate, and How Does It Work?

Sodium oxybate is a medication doctors prescribe to help improve multiple symptoms of narcolepsy.² Although the exact way it works isn’t completely understood, in general, this medication reduces brain activity enough for sleep to occur.³

GHB has been studied for many years and used as a treatment for narcolepsy and other medical conditions. Before 1990, GHB could also be bought over the counter as a supplement in the United States. After it became known that people were abusing GHB, the U.S. Food and Drug Administration (FDA) banned the over-the-counter sale of GHB.¹

In 2000, the FDA designated GHB for nonmedical use as a Schedule 1 controlled substance (the highest level of restriction for a drug). However, the FDA has also designated GHB for medical purposes as a Schedule 3 substance, which allows it to be prescribed for health conditions like narcolepsy.¹

Over time, GHB was shown to be safe and effective through medical research. In 2002, the FDA approved sodium oxybate for treating “patients with narcolepsy who experience episodes of cataplexy.”⁴ In 2005, the FDA extended the indication for sodium oxybate to treat excessive daytime sleepiness in narcolepsy.⁵

Concerns about the prescribed medication called sodium oxybate can be traced to the abuse of GHB, now described as “illicit GHB” when it’s being used as a street drug — not for the treatment of narcolepsy.⁵

What Are Some Concerns About Sodium Oxybate?

Some people with narcolepsy are nervous about taking sodium oxybate because they’ve heard that GHB is a “date-rape drug.”¹ Others worry that they’ll immediately be thrown into a deep sleep and be unable to wake up using an alarm or with help from another person. Some are concerned that the medication might cost too much. Others with narcolepsy have heard about some reported side effects and wonder if sodium oxybate is safe.

Fortunately, sodium oxybate has been studied for many years as a treatment for narcolepsy.⁴ By learning what scientists have discovered about this medication, you can better understand these concerns and work with your doctor to determine if this treatment is right for you.

The Facts About Sodium Oxybate

Sodium oxybate prescribed by physicians for narcolepsy isn’t the same as illicit GHB, which carries different risks and potential for abuse. The concern about GHB as a “date-rape drug” is related to illicit GHB, which — unlike prescribed sodium oxybate — doesn’t have controlled dosages or purity.¹ That means illicit GHB is more likely to be taken in dangerous amounts or contaminated with other substances. Plus, illicit GHB may be taken with other substances, like marijuana or alcohol, which can lengthen recovery from the drug’s effects.¹

In addition, people may confuse illicit GHB with other illicit substances. One study showed that over 60 percent of the time that people reported using illicit GHB, they were actually taking GBL, a different drug that’s stronger and more dangerous.¹

Prescribed sodium oxybate, on the other hand, is precisely manufactured at a specific dose, following the FDA’s stringent manufacturing standards. People living with narcolepsy are instructed about proper use and dosing through a formal Risk Evaluation and Mitigation Strategy, or REMS, which the FDA requires for all oxybate medications due to central nervous system depression and abuse and misuse. Physicians also clearly instruct people to take sodium oxybate while in bed and without alcohol or other substances that can lower brain activity.^1,3 These controlled conditions support the safe use of sodium oxybate as a prescribed treatment for narcolepsy.¹

Side Effects and Effectiveness

The most common side effects of FDA-approved forms of oxybate in adults are nausea, vomiting, diarrhea, dry mouth, decreased appetite, anxiety, dizziness, headache, fatigue, tremor, parasomnias (strange sleep behavior, like sleepwalking), excessive sweating (hyperhidrosis), strong drowsiness (somnolence), and bedwetting (enuresis).^3,6,7

One of the most important things to know about taking sodium oxybate is that it carries a strong warning against using alcohol or any other type of medication that may decrease the function of your brain and nervous system.³ Mixing these substances is risky and should not be done.¹

In a key study, some people with narcolepsy received a single dose of extended-release sodium oxybate at night, and other participants received a placebo (a harmless substance with no medicine). The most common side effects were nausea, dizziness, enuresis, headache, and vomiting; there was one serious side effect that was considered treatment-related, which was suicidal ideation.³

The results of this study also showed that people who took extended-release sodium oxybate performed significantly better on a test that measured their ability to stay awake during the day, called the Maintenance of Wakefulness Test. Likewise, this group performed better on another assessment, the Clinical Global Impression-Improvement scale, which asked clinicians to rate how much improvement there was in people who had an intervention (like medication). Results also showed that the people who took sodium oxybate experienced fewer attacks of cataplexy during the study. Finally, this group performed better on a test that measured their sleepiness, called the Epworth Sleepiness Scale. These results together speak to how effective extended-release sodium oxybate is in improving the symptoms of narcolepsy.²

Other Concerns

Some people with narcolepsy worry that if they take sodium oxybate, they’ll fall asleep quickly and be unable to wake up by an alarm or a family member. It’s true that instructions call for taking sodium oxybate in bed because people often begin sleeping in five to 15 minutes.³ Some people taking sodium oxybate for the first time prefer to have a friend or loved one stay with them for the first few days, until they know what to expect from the experience of taking the medication.

Finally, as with other prescription medications, some people worry that they won’t be able to afford sodium oxybate. If that’s a concern for you, talk with your physician or pharmacist. They may be able to help you find ways to save money, such as support services and coupon programs offered by the medication’s manufacturer.