Treatment of the narcoleptiform sleep disorder in chronic fatigue syndrome and fibro

muffin

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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
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 brains 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: raidl@ieee.org]
 

Otis

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Xyrem has great potential and it's been studied extensively in fibro. I think they are through stage III trials. I read in a blog (about.com?) that the FDA is considering approval for fibro. Here's the latest study in fibro patients http://www.forums.aboutmecfs.org/sh...leep-physiology-amp-sleep-related-FM-symptoms

If fibro approval is made, along with studies like this, CFS patients may be able to get scripts soon as well. The hurdles being a doc willing to prescribe and the good old insurance companies.
 

glenp

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ty muffin

Wow mufin ty for posting this. I often thought that I had a form of narcolepsy and then suddenly the symptoms switched and I had trouble falling asleep.

glen
 

Dolphin

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I read that paper. To me, it wasn't clear they really had CFS. (I could be wrong of course):

Table 5. The Narcoleptiform Syndrome: Common
Features Present in These Cases

Long-standing chronic fatigue: either sleepiness or sleep attacks,
neuromuscular weariness or fatigability, or both

Generalized muscular and joint pains, and tender points characteristic
of FM

Other symptoms of CFS or FM such as memory loss, difficulty with
concentration, gastrointestinal disturbances, weight gain, and others
tabulated for CFS and FM

Poor sleep, unrefreshing sleep, excessively light sleep, inability to sustain
sleep

Associated symptoms of narcolepsy such as cataplexy and sleep paralysis

Disrupted sleep on polysomnogram or lack of deep sleep, without other
sleep disorders such as sleep apnea or restless legs syndrome

Excessive daytime sleepiness confirmed by MSLT

Sleep onset REM on MSLT

HLA DQB1-0602 present (in some cases)

The more features that are present, the more typical the case.
CFS, chronic fatigue syndrome; FM, fibromyalgia; HLA, human leukocyte antigen;
MSLT, Multiple Step Latency Test; REM, rapid eye movement.
No mention of PEM (or something like it) for example.

I think I read somewhere this was pricey for a sleep med (thousands/year).
 

Otis

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I read that paper. To me, it wasn't clear they really had CFS. (I could be wrong of course):

No mention of PEM (or something like it) for example.

I think I read somewhere this was pricey for a sleep med (thousands/year).
Thanks for the review and links Dolphin. My faith in the potential lies mostly with it's promise in fibro at this point.

I just wanted to add quickly before I sign off that is expensive >= $600/month without insurance.
 

hensue

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On the Pro Health message board quite a few have been on the drug xyrem. These were fibromyalgia patients which I know some of them have PEM.
The ones that posted did not have such good results.
Then again most people do not post about good results usually bad.
Some had side effects so bad they stopped and others said you had to wake up in the middle of the night and take another pill.
I am anxious to see or read some positive results.
Take care
Susie
 

Dolphin

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Here is more info on the cohort:
METHODS
This retrospective study was approved by the University
of Michigan Institutional Review Board. Subjects were
identified from a single practitioner, general neurology
practice originally referred for a range of diagnoses.
Many cases were referred for consideration of neuromuscular
disorders, because of complaints of weakness
and myalgia. None of the cases were originally referred
for a primary sleep disorder. Only a minority were originally
referred for a diagnosis of CFS (3/118, 2%) or FM
(33/118, 28%). In some cases, symptoms of CFS or FM
were discovered during the review of systems while a
patient was being treated for an unrelated disorder.
and
RESULTS

A total of 118 charts were identified for retrospective
review. Twenty-five of the patients were male (21%) and
93 were female (79%). The mean age was 53 1 12 years.
Out of 118 patients, 117 (99%) had long-standing
fatigue and 82 (69%) had generalized pains and muscle
aches in a pattern consistent with FM. Fourteen of 25
male patients (56%) and 68 of 92 female patients (74%)
had pain. The pain was typically described as all over
(as characteristic in FM). Detailed results of diagnostic
evaluation in this group have been submitted separately.
The results are briefly summarized below.

Approximately 40% of patients met criteria for classical
narcolepsy, although most of the remainder had
features suggestive of the disorder. Of 92 patients having
MSLT, 73 (80%) patients were abnormal, showing
shortened time to onset of daytime sleep onset, indicating
objective excessive sleepiness. Overall (male and
female combined), 36% had at least one period of
SOREM. Overall, 43% were positive for HLA DQB1-
0602, compared with an 8% average population prevalence
in 225 population prevalences (P < 0.0001). Sleep
architecture was not graded formally. However, qualitatively
it was reviewed in all cases, and in nearly every
case there was disrupted sleep, poorly maintained sleep,
and failure to achieve deeper stages of sleep.
and
Discussion

[..]

Our patients demonstrated a constellation of consistent
findings. The distinction between our patients
and CFS or FM is indistinct. When test results were
combined with clinical characteristics, these cases
were better classified as a narcoleptiform syndrome
(Table 5). In this syndrome, the fatigue component of
the syndrome follows the description of CFS, and the
pain component follows the usual description of FM.
In addition to hypersomnia, the sleep disorder has
many features of narcolepsy, being entirely classical in
approximately 40% of cases, and having many of the
features in most of the other cases. This provides a
rationale for the use of sodium oxybate.
These results expand upon some recent
smaller studies, suggesting a role for oxybate in the
treatment of FM and further suggesting a role for
oxybate in the treatment of CFS. By showing that
patients with predominant features of fatigue only (CFS)
also respond, this study points to the need for prospective
studies in CFS as well.
This and bit above all makes me wonder do the authors really know what ME/CFS is.