Here is an interesting article on xyrem. Does anyone know if xyrem is available in Canada? Sleep Patterns in CFS Patients and the Immunomodulatory Effects of Sodium Oxybate in Patients with Alpha Intrusion. N. Hone, L. Garcia, M Vera, N Chediak, M Fletcher and N. Klimas. Dr. Klimas is a big fan of sleep studies –she believes that virtually everyone who can get one should – (but be sure to get the right kind of sleep study!) and here, in a pretty nice sized study (61 patients), we got a good look at the sleep problems present in chronic fatigue syndrome. One problem sleep researchers seem to be focusing in on is called ‘alpha intrusion’. Alpha intrusions refer to an intrusive kind of brain wave pattern that shows up in chronic fatigue syndrome, fibromyalgia and sometimes sleep apnea patients that interferes with deep sleep. The study looked for alpha intrusions and various other sleep maladies. Alpha intrusions showed up in spades with 80% of patients displaying them. But that wasn’t the only problem; almost 50% of patients had obstructive sleep apnea and 25% had restless leg syndrome. Men had particularly high rates of alpha intrusions; about 50% higher than was seen in women. In the image to the left the alpha intrusions are on the bottom. Note how prevalent they are in the last two patients. Dr. Hone, who is based in Mexico City used sodium oxybate (xyrem) to treat the alpha intrusions in 27 patients. She reported that almost all reported improvement in their sleep, what Dr. Hone called Unfortunately no quantitative data was given and it’s unclear just how strong that effect was but Dr. Hone characterized xyrem has having ‘a high impact in the clinical improvement of sleep’. Conclusion: The morale of this study was that treatable sleep disorders of one sort or another are rife in ME/CFS and that sodium oxybate may be helpful in treating a very common sleep ailment. 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 assists with sleep and reduces pain. Specifically it is the only drug known to reduce the frequency of types of brainwaves (delta intrusions) that appear to impair deep sleep in ME/CFS and FM. 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, that 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 ME/CFS/FM 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. 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. ME/ CFS patients Report – Click here to view ME/CFS patient’s reports on Xyrem. 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. Its tight regulation has pushed up its cost to approximately $200-$500/month but is generally covered by insurance. Dr. Levine, Klimas and Dr. Bateman have all endorsed sleep studies. In sleep studies patients are given a room to sleep in, hooked up to various machines and then monitored as they sleep. Because sleep studies can be expensive - costing as much as $2,000 - patients may wish to get preauthorization from their insurance company before doing one. A group of ME/CFS physicians recommended that the clinicians use a good sleep questionnaire (such as the Pittsburgh Sleep Quality Index) to determine whether a sleep study would be effective. (If a sleep study is not feasible' Dr. Teitelbaum recommends doing a 'home sleep study' (see below). A Sleep Disorder - Not Chronic Fatigue Syndrome (ME/CFS) - Sleep studies indicate that about 20% of ME/CFS patients have a primary and treatable sleep disorder – not ME/CFS. These patients can be rapidly treated and cured. Other than consistently finding unrefreshing sleep, sleep studies of ME/CFS patients have had mixed results. Some indicate ME/CFS patient have disturbed ‘sleep architecture’ (i.e. too little REM or deep sleep’) while others have not. Several recent studies finding evidence of increased sympathetic nervous system activation suggest that ME/CFS patient may never really relax when they sleep. Dr. Bateman notes that the commonest findings in ME/CFS sleep studies are movement disorders, jerking, and wiggling, and needing to move. With this kind of problem she says "You wake up all night long, but never enough to know you have a problem; that creates daytime sleepiness." Ken Friedman a ME/CFS researcher and advocate recently reported that a sleep study indicated his daughter woke up ‘hundreds of times’ a night. He was able to use the results of this study to adjust her therapy and improve her quality of life. Sleep Study Recommendations. Dr. Klimas recommends that patients see a neurologist rather than a pulmonologist for their sleep study because ‘pulmonologists are usually looking sleep apnea and study results don’t show that’s the kind of dysfunction that CFS patients have." Dr. Teitelbaum notes that sleep studies should include an EEG to provide sleep stage data, waking and total hours of sleep, respiratory monitors to measure airflow and blood oxygen and checks of leg movement (restless leg syndrome) and upper airway resistance syndrome (UARS). He also recommends that ME/CFS patients stay on their sleep medications while they do the study. "If money is an issue patients can do a 'split-night' study in which the sleep technicians look for sleep apnea in the first half of the night and try to fix it in the second. A Do It Yourself Sleep Study - Videotaping yourself while you sleep can't tell if you have upper airway resistance syndrome (UARS) but it can tell if you snore, if you stop breathing at times or if you have move around a lot at night (have restless leg syndrome). If none of these are evident then sleep disordered breathing may not be a problem for you.