Treating Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: Xyrem
Xyrem is a central nervous system and respiratory
depressant. Xyrem is the trade name for gamma-hydroxybutyric acid or GHB, a neurochemical
involved in regulating metabolism that is able to affect sleep. Sodium oxybate
is the active ingredient in Xyrem. Xyrem has been
approved to treat narcolepsy (severe daytime sleepiness) and cataplexy (sudden
muscle weakness) and is in the last phase of clinical trials for fibromyalgia.
Xyrem May Work in ME/CFS/FM Because it is the only drug known to reduce the frequency of
the types of abnormal brainwaves (alpha intrusions) that appear to impair deep sleep in
many CFS and fibromyalgia patients. It is also one of the only drugs known to
improve both sleep and reduce pain. It may enhance the activity of two
neurotransmitters, dopamine and serotonin, both of which may be deficient in
ME/CFS. The highest concentrations of GHB are found in two areas of the brain
that are of great interest to CFS and Fibromyalgia researchers; the
hypothalamus and basal ganglia.
ME/CFS Physicians Dr. Teitelbaum flatly states “Xyrem
is the most effective way known to increase deep sleep and raise growth
hormone”. Dr. Peterson reported that to his ‘amazement’ Xyrem helped
with both sleep and pain in his ME/CFS patients with extreme sleep disorders.
Drs. Ross and Marion Hauser call it ‘probably one of the safest and most
effective sleep aids that we know of.” They believe it may enhance growth
hormone levels. Dr. Klimas notes that Xyrem it induces ‘slow wave’ sleep –
the type of sleep most ME/CFS patients have the most trouble achieving.
Studies Two studies have found improved sleep and about a thirty percent
reduction in fatigue and pain scores in fibromyalgia. Of particular interest was Xyrem’s abiity to reduce the frequency of anomalies observed in both FM and
ME/CFS during sleep called alpha intrusions. Alpha intrusions involve the
appearance of unusual high frequency brainwave patterns that are believed to
disrupt deep sleep.
Dose Dr. Teitelbaum recommends 9 cc’s (4.5 grams) at
bedtime and then about 4 hours later if needed. Xyrem is fast acting and should be taken in bed.
Side Effects Xyrem can be habit forming. Patients in clinical trials reported
confusion (2.5%), depression (3.5%), incontinence at some point (7%),
sleepwalking (4%). Headache (22%), nausea (21%) and dizziness (17%) and others
were also found.
Warning Do not take other sleep enhancing substances (alcohol, pain medication,
muscle relaxants, sedative hypnotics, etc.) when taking Xyrem. Xyrem should be
discontinued gradually. Rinse well with water and swallow after taking as Xyrem
can damage tooth enamel.
Others GHB is known as the date rape drug because of its ability to
induce amnesia when combined with alcohol. It can only be obtained from a
special compounding pharmacy. Xyrem’s tight regulation has pushed up its cost to
approximately $200-$500/month but it is generally covered by insurance.
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Scharf MB, Baumann M, Berkowitz DV, J Rheumatol. 2003 May;30(5):1070-4. The
effects of sodium oxybate on clinical symptoms and sleep patterns in patients
with fibromyalgia.
Jacob Teitelbaum, MD., 2007. From Fatigued To Fantastic 3rd. ed., Avery Publishing.