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Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibromyalgia with sodium oxybate – Source: Pain Practitioner, Jan-Feb 2010

  [ 19 votes ]   [ 8 Comments ]
By A Robert Spitzer, MD, Melissa Broadman, DO, MPH • • July 23, 2010

[Note: to read the full text of this article free, click here. Note Table 5, which provides the constellation of symptoms and findings the researchers used to identify patients generally fitting their description of "Narcoleptiform Syndrome" - "a sleep disorder with many features of narcolepsy."]

This study investigates the response of the underlying sleep disorder associated with Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) to treatment. We retrospectively reviewed 118 cases clinically consistent with CFS or FM, treated in a neurology practice.

Abnormal findings on sleep studies and associated human leukocyte antigen markers, and a clinical pattern suggestive of narcolepsy, are present in a high proportion of patients. [Narcolepsy is a chronic neurological disorder of excessive daytime sleepiness caused by the brain’s inability to regulate sleep-wake cycles normally, and likely involves multiple factors interacting.]

When considered appropriate based on the clinical picture and test results, treatment with sodium oxybate was offered to these patients. [Sodium Oxybate (brand name Xyrem) is a potent central nervous system depressant used to prevent episodes of muscle weakness (cataplexy) in narcolepsy patients, though how it works to do this is not known.]

• Sixty percent of patients treated with oxybate experienced significant relief of pain,

• While 75% experienced significant relief of fatigue.

We postulate that the response to oxybate in CFS and FM suggests a disturbance of sleep similar to narcolepsy. These findings support this novel approach to intervention and further research.

The inability to distinguish CFS and FM by testing and response to treatment suggests that they may represent variations of the same disorder or may be closely related disorders.

Source: Pain Practitioner, Jan-Feb 2010;10(1):54-9. PMID: 20629967, by Spitzer AR, Broadman M. Neurology Department, Wayne State University School of Medicine, Detroit, Michigan, USA. [Email:]

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Article Comments Post a Comment

Date Rape Drug Finds NEW Application
Posted by: Earth
Jul 28, 2010
Hurrah! In less than a decade after the US Congress funded your tax $$$$$ to put an end to the insidious threat of GHB, aka the date rape drug,sodium oxybate has a near-miraculous use for the relief of fibromyalgia. It's simple. We were lied to in 2000 or we're being lied to in 2010.
Reply Reply

Xyrem - Cost
Posted by: DarleneWSerrano
Jul 28, 2010
Sad, yes, now we can use it, but as of Jan 2010, the price of the product more than doubled. You can only purchased from ONE PLACE. So I sit here barely able to use my hands due to muscle weakness and receive phyiscal therapy constantly due to all the damage I have received from falling.. I am in the grey area, so I receive no help from governent to cover the $1,200 a month cost and my SSD ck is that amount. So, I must sit in my home and not leave due to all the falling because I can NOT AFFORD THE MEDICINE that somehow found a way to budget in.. I didn't get high on it. I survived on it. I have Narcloepsy.
Reply Reply

Didn't work for me
Posted by: wellkid
Jul 28, 2010
I tried Xyrem,for three nights, and not only did I not sleep but it knotted up my muscles so badly that I cramped in places I'd never cramped before. The helpful nurse at the only pharmacy where it's available said that it might take 2 to 4 weeks before I began to see any benefits. I couldn't afford to lose 2 weeks of sleep and health, so I canned it. The way this drug has been marketed has always given me a bad feeling. It's known to be addictive, so they started out by offering a discount for 3 months, and then once you're hooked, the discount goes away. Now, they give you the first month free. And how can it be so expensive, when all they're doing is adding a sodium ion to what used to be available over the counter? Bad vibes all around, as far as I'm concerned. I do hope it works for some, though, as I wouldn't wish my experience on anybody.
Reply Reply

Of Course. It's Addictive!
Posted by: Earth
Jul 28, 2010
And with the advent of the recent national health-care, the "garbage can diagnosis" of chronic fatigue syndrome and/or fibromyalgia is the convenient billing code used by ill-informed/non-informed doctors who need to empty their waiting rooms of suffering people.

So, the anonymous taxpayer can pick up the tab for an expensive addictive date-rape drug with dubious palliative effects. This product can easily be diverted to the black-market partiers who want an effective odorless, tasteless disablers which leaves no forensic evidence following the criminal sexual assault.

And, profits mount almost as quickly as the body count of victims + the predators who can't be held responsible for their felonies will only be willing to part with the cash demanded for the fun that's about to happen.

A win-win-win game if ever there was one!


Apples = Apples ------------------- Oranges = Oranges
Posted by: Earth
Jul 28, 2010
Your final sentence finally makes the point: Your diagnosis is narcolepsy. Fact. The title of the articles is " ....blah. blah. blah. chronic fatigue syndrome and fibromyalgia with sodium oxybate" Excuse me for the obvious consideration, but narcolepsy is NOT chronic fatigue syndrome NOR is it fibromyalgia. Your observations are valid but mis-filed!
Reply Reply

My own experience of Xyrem
Posted by: MissMarple
Jul 31, 2010
I tried Xyrem, as recommended by my CFS doctor, and it was not a happy experience. I have had CFS since 1989 and have tried many meds, but this was one of the worst (not as bad as Cymbalta, but that's another story). I took it for about a week. I would sleep very deeply for about 6 hours each night, and that was it: I simply could not get back to sleep again. At the end of the week, therefore, I was sleep-deprived and exhausted, and looked it too. I also had extraordinarily vivid and complex dreams—not lucid dreams, which I've also had, but enough to make me feel drained in the mornings. I have rarely felt so happy and relieved as when I decided to give up trying and stop taking it. Of course you can only find out if Xyrem is for you by taking it. The study does not seem to suggest a way of working out in advance whether it is likely to suit you or not, based on your overall symptoms. But if you do try it, I would advise taking it, if you can, only over a period when you have few commitments and can rest as and when needed.
Reply Reply

Posted by: search4help
Aug 10, 2010
I had serious reactions of extreme drowsiness,loss of motor coordination and hallucinations. All I could do was lie flat because I could not move and hallucinate. I had auditory hallucinations (hearing things that were not there) and ruminating over and over to kill myself. I have never hallucinated before nor was I in a previous state of suicidal ideation. I tried this so called medication twice and that was it! I took the bottles straight back to my neurologist who is an excellent doctor. He told me that many of his patients were having the same reactions. It is very strange that the research done on this drug did not report such side effects. I do not believe at all that the research study was credible.
Reply Reply

Xyrem worked wonders for me
Posted by: Juloo
Aug 16, 2010
But it took a looooong time to titrate, and I ended up needing only one of the two nightly doses that are recommended. Two doses were just too much -- I'd end up waking up and stumbling to the bathroom to vomit. I would be miserable until it was out of my system. I've since read that the optimal dose and an overdose can be very close in amount, and that is certainly true in my case. I wish that I could afford to be on this, but until it is approved for CFS, I have no hope of it. I could get through an entire day without needing to sleep AT ALL, and cognitively, I was almost my 'normal' self (if I am remembering right -- it HAS been over a decade since before this CFS/FM).
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