New drug for cluster headaches
by Dr. Alexander Mauskop

Chronic cluster sufferers may benefit from sodium oxybate (Xyrem), according to a report in the leading neurology journal,Neurology. Xyrem is a drug approved for the treatment of narcolepsy but it is also being evaluated for the treatment of pain of fibromyalgia, chronic fatigue, and other conditions. It is well established that patients with cluster headaches often suffer from sleep disorders and cluster attacks often wake patients from sound sleep in the middle of the night. It is logical to consider drugs that affect sleep in the treatment of cluster headaches. However, traditional sleeping medications do not help cluster sufferers. Approximately 10% of patients with cluster headaches suffer from chronic clusters, which means that they have headaches for years without a break, while the other 90% have cluster periods lasting a few weeks to a few months every year or every several years. The article in Neurology describes 4 patients with chronic clusters who were treated with Xyrem with excellent long-term results. In one patient relief lasted 8 months while in the other three for up to two years. Side effects consisted mostly of dizziness, some memory difficulties, vomiting, and weight loss, however they were not severe enough to stop taking this medication. Xyrem is a controlled drug with potential for abuse and is dispensed only through a single centralized pharmacy.

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PubMed finds just three references to where Xyrem has been used for CH (as per link above).  However there is minimal publicly accessible info from two of the papers, plus there is a total of 9 patients treated between all of the papers.

So with positive evidence from the initial trials, this really needs a larger study to be able to get more concrete evidence as to how well it treats CH. Plus the trial would help establish the benefits compared to the risks and side effects.

Seeing more CH research is good.

Thanks for sharing this info. I have my radar set on anything for CC as I have, at the age of 64, now crossed over from episodic to chronic. Plus my neuro retired. Met my new neuro today, good partner by the looks of it, but he too can't be far from retirement. Oh well. Right now trying to get a handle on this new pattern which is not exactly a pattern.