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Sleep Fundamentals || X is for Xyrem (sodium oxybate)

From our Sleeping is Fundamental series

People with narcolepsy have few pharmacological options for treating their hypersomnia; Xyrem (sodium oxybate) is one of them.

 

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What is Xyrem? (sodium oxybate)

Pronounced ZY-rem, this medication (generically known as sodium oxybate) is one of the main medications used to treat the sleep disorder narcolepsy.

Sodium oxybate is prescribed to treat two symptoms: excessive daytime sleepiness and sudden muscle weakness (also described as cataplexy).

How to take Xyrem

Of course, users must follow their pharmacist’s instructions. However, this is a medication with an unusual schedule. It’s important to know what you might be in for, should you need it.

Sodium oxybate is taken as an oral solution on an empty stomach at least 2 hours after a meal. It requires two doses: one at bedtime, and a second dose at between 2 and 4½ hours later.

This means the person using sodium oxybate may need to set an alarm to take the second dose. If necessary, a loved one may be enlisted to help awaken them long enough to take the second dose.

It’s important to take Xyrem at the same time every night in two separate 2.25g doses (at least initially). Dosage may be increased as a maintenance drug per a doctor’s recommendations (to as high as 9g total per night, or two 4.5g doses). Again, follow your doctor’s or pharmacist’s directions.

Prepare each dose of sodium oxybate by mixing with 2 ounces (¼ cup) water. It’s recommended that both doses be taken while in bed as this medication works extremely fast. For best results,prepare the second dose, and keep it at close reach, before taking the first dose.

Safety considerations for Xyrem

In 2002, sodium oxybate was approved by the FDA (and in 2005 in Europe) to treat narcolepsy. Just last month, the FDA expanded its treatment for use in pediatric narcolepsy.

Sodium oxybate carries a black box warning. It serves as a central nervous system depressant and could cause respiratory depression, seizures, coma or even death (especially if it’s used in combination with other similar substances, such as alcohol).

It can also cause dependence. Considered a schedule III controlled substance, Xyrem:

  • is currently considered an acceptable medical therapy in the United States, but it
  • has the potential for abuse (though less so than with schedule I or schedule II controlled substances), and
  • abuse of this drug may lead to dependence

Because of these risks associated with using Xyrem, users must acquire it through the FDA’s risk evaluation and mitigation strategy (REMS) program. Providers who prescribe it must be certified to do so. The drug may only be dispensed through a certified central pharmacy.

People using Xyrem are required to document their safe usage of the medication as well. A key compound in Xyrem is GHB (gamma-Hydroxybutyric acid). GHB is a form of street drug used to facilitate date rape and sexual assault. Patients will need quarterly clinical check-ups to confirm safe usage and to measure therapeutic progress.

Sudden withdrawal from sodium oxybate can lead to unpleasant symptoms. People using it must talk to their doctors before discontinuing its use.

On top of all this, sodium oxybate has common side effects which include dizziness, headaches, enuresis (bedwetting) and nausea.

Why people take Xyrem

This seems like a lot of hoops, risks, and side effects for a person taking this medication, but remember: narcolepsy has few treatment options, and the sleep disorder can be extremely disabling and life altering.

Narcolepsy can make it impossible for some to keep jobs, have social lives, attend classes or events, maintain relationships, or even drive, without treatment.

This uncommon sleep disorder causes episodes of irresistible sleep throughout the day which may include losses in muscle tone that result in bad falls. It also causes disrupted nighttime sleep.

For some people with narcolepsy, the reductions of episodes of cataplexy after using sodium oxybate have been described as “miraculous,” with more restorative nighttime sleep and far less excessive daytime sleepiness as positive results.

Julie Flygare’s highly recommended memoir, Wide Awake and Dreaming, captures evocatively the challenge of not only living with narcolepsy, but with having to manage her sleep disorder through the use of sodium oxybate.

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