Over the past two years, the RSS feeds we have been using have been an invaluable resource for people seeking more information about Idiopathic Hypersomnia (IH).  The primary source for our feeds has come from MedWorm.  Recently, however, the MedWorm RSS feed service has been stopped.

Here is the news from MedWorm:

Unfortunately, due to lack of funding and ever increasing popularity, MedWorm customised RSS feeds have been disabled for the moment. You can still find lots of precompiled RSS feeds by browsing MedWorm, for many medical conditions and specialities, which are free to use. Customised RSS feeds will likely return shortly as a subscription service. We apologise for this inconvenience. Unfortunately this move has been unavoidable due to limited resources as the MedWorm server can no longer cope with demand and there are no funds to increase processing capacity at this time.

We look forward to MedWorm’s RSS returning in the future.  Until such time, you can still manually search MedWorm’s archives (www. MedWorm.com).


19 January 2012

An article in Sleep & Biological Rythms (14 July 2011) reports on research on REM sleep disturbances. The study took four groups (healthy, Narcolepsy w/cataplexy, Narcolepsy w/o cateplexy and Idiopathic Hypersomnia) and compared the number of wake-REM transitions each groups had. People suffering from Narcolepsy with Cateplexy were the group with the highest number of transitions. This research confirms previous findings that REM sleep disturbance (think number of transitions) is specific to Narcolepsy with Cataplexy.

Here are some brief excerpts from the abstract:

This study tested…REM sleep disturbance in patients with narcolepsy…We…analyzed
polysomnographies of patients with narcolepsy with cataplexy (n= 18), narcolepsy without
cataplexy (n= 12), idiopathic hypersomnia (n= 22) and healthy controls (n= 33) with regard
to the number of wake–REM sleep transitions as a measurement for REM sleep disturbance
at night. We found a significantly higher number of transitions between wake and REM
sleep (14.17…) in patients with narcolepsy with cataplexy than in healthy controls
(3.70…) and patients with idiopathic hypersomnia (5.36…). These results confirm
previous findings that REM sleep disturbance is a specific phenomenon for narcolepsy
with cataplexy…we found that wake–REM sleep transitions provide a useful marker
for…measuring this sleep disturbance. A possible…factor for this observation is
the hypocretin-1 system, which is deficient in narcolepsy with cataplexy but intact
in idiopathic hypersomnia. The number of wake–REM sleep transitions may thus become
a useful additional means for the differential diagnosis of narcolepsy.

Links to this article can be found below:

Wiley Online Library


03 October 2011

An article in Psychiatry Research (30 August 2006) reports on research into the possible misdiagnosis of patients with Narcolepsy, Idiopathic Hypersomnia (IH) and the adult form of Attention Deficit/Hyperactivity Disorder (ADHD). The article reports on the overlap of symptoms in all three conditions.

Here is a brief excerpt from the article:

We explored the possibility of diagnostic confusion between hypersomnias of central
origin (narcolepsy and idiopathic hypersomnia, IH) and the adult form of
attention-deficit/hyperactivity disorder (ADHD). We included 67 patients with
Narcolepsy…7 with IH…61 with ADHD. All patients completed the Epworth Sleepiness
Scale and the ADHD Rating Scale. We found that 18.9% of the hypersomnia patients
fulfilled the self-reported criteria for ADHD in adulthood, compared with 77% of the
ADHD patients. A score > or =12 on the Epworth Sleepiness Scale (usually regarded to
indicate excessive daytime sleepiness) was found in 37.7% of the ADHD patients
compared 95.9% of the hypersomnia patients. In ADHD patients, inattention scores
correlated with the excessive daytime sleepiness score. We conclude that one should
be aware of possible diagnostic confusion between narcolepsy or IH and adult ADHD
when using self-report questionnaires. The high percentage of symptom overlap
found in our study raises questions about possible misdiagnosing of both conditions,
comorbidity with sleep problems in adult ADHD, and the validation of the used
scales. It remains unclear whether our findings indicate pathophysiological overlap.


Links to this article can be found below:
Psychiatry Research


30 July 2011

An article in Sleep Medicine (07 March 2011), reports on research to evaluate the benefit/risk of modafinil in Idiopathic Hypersomnia (with and without long sleep time). This report is in response to the decision of the European Union to not allow Modafinil as a treatment for Idiopathic Hypersomnia (IH) – citing insufficient data.

Here are some brief excerpts from the article:

The benefit (Epworth sleepiness score, ESS; visual analog scale, patient
and clinician opinions) and risks (habituation, adverse effects) of
modafinil were studied in a consecutive clinical cohort of 104 IH
patients (59 with long sleep time) and 126 patients with narcolepsy/cataplexy…

Modafinil was the first line treatment in 96–99% of patients. It produced
a similar ESS change in IH patients and in narcolepsy patients…and a
similar benefit as estimated by the patients…and clinicians. The ESS
change was lower in IH patients with long sleep time than in those without.
Sudden loss of efficacy and habituation were rare in both groups. Patients
with IH reported similar but more frequent adverse effects with modafinil
than narcolepsy patients…


Links to this article can be found below.
Sleep Medicine


29 July 2011

According to an article in Reactions Weekly (23 July 2011), two reports have been made suggesting that Clarithromycin may cause temporary hypersomnia in some patients.

Here are some brief excerpts from the article:

A 4-year-old and a 13-year-old boy developed hypersomnia while
receiving Clarithromycin.

The girl was treated with oral Clarithromycin…for acute bacterial
rhinosinusitis and fever. Her parents reported that she had fallen
into a deep sleep approximately half an hour after her first dose in
the morning and was unable to be woken for over 3 hours. She awake
spontaneously but was torpid for about 1 hour. Her sleep episodes
recurred following her second dose…and again after her third dose…
She was brought to her pediatrician…at which point she was asleep;
she awoke spontaneously but was drowsy. Clarithromycin was identified
as the only possible cause of her symptoms…Her symptoms resolved…

The boy was treated with oral Clarithromycin…for acute bronchitis
and fever…he reported experiencing daytime sleepiness, with one or
two naps during the day as well as extended night-time sleep. He
associated his sleepiness with the start of Clarithromycin…his
symptoms had occurred 2 hours after his first dose and worsened
following his second dose. Further doses had a slight affect on his
sleepiness, which increased within 2 hours after every dose and
decreased just prior to the next dose. Hypersomnia was diagnosed and
Clarithromycin, which was identified as the only possible cause, was
immediately withdrawn. His functioning…resolved by the following


Links to this article can be found below.
Reactions Weekly


According to and article in Sleep Medicine (22 Feb 2011), researchers studied the effect of thyroid hormone, Levothyroxine, on patients with Idiopathic Hypersomnia (with long sleep time). Results were that sleep time dropped around 4 hours and Epworth Sleepiness Scale (ESS) score dropped around 10 points.

Here are some brief excerpts from the article:

This study aims to examine the effect of levothyroxine, a thyroid hormone,
on a prolonged nocturnal sleep and excessive daytime somnolence (EDS) in
patients with idiopathic hypersomnia…

In a prospective, open-label study, nine patients were enrolled. All subjects
met criteria for idiopathic hypersomnia with long sleep time…After baseline
examinations, levothyroxine (25g/day) was orally administered every day.
Mean total sleep time, ESS score at baseline were compared with those after
treatment (2, 4 and 8weeks)…

One patient dropped out at the 2nd week due to poor effect. No adverse effects
were noted…

After treatment with levothyroxine for over 4weeks, prolonged sleep
time and EDS were improved. Levothyroxine was effective for hypersomnia
and well tolerated.

Links to this article can be found below.


According to an article at Investors Business Daily, Jazz Pharmaceuticals has increased the price of Xyrem 220% since 2008. Xyrem is a prescription medication used to treat cataplexy and Excessive Daytime Sleepiness (EDS) in patients with Narcolepsy.

Here are some brief excerpts from the article:

It’s not uncommon for a small drug developer to pour most of its money and
energy into a single product, betting it will be the ticket to profitability
and growth.

Drug developer Jazz Pharmaceuticals (JAZZ) has followed that script with

The strategy has worked out pretty well so far. Annual sales of Xyrem have
risen nearly fivefold over the past five years as the drug gains traction
with more patients…

Xyrem sales hit nearly $143 million in 2010…

William Tanner, an analyst at Lazard Capital Markets, notes that a narcolepsy
expert he conferred with called Xyrem the “standard of care for narcolepsy
and believes the drug could be effective for treating other sleep disorders”
such as idiopathic hypersomnia and disrupted nighttime sleep…

Since 2008, Jazz has raised the sticker price 220% on Xyrem. It hiked the
price 22% in November and another 18% in April. The current price is about
$30,000 a year.

The wild card is when managed care companies begin to push back against the
price hikes and limit their coverage of Xyrem.

Links to this article can be found below.


An article in Clinical Physiology (29 June 2011) reports on a study involving Narcolepsy and Idiopathic Hypersomnia patients (without long sleep time). Researchers compared the results of night-time polysomnography tests and Multiple Sleep Latency Tests (MSLTs).

Conclusion? Patients with Idiopathic Hypersomnia (without long sleep time) are not as tired during the day and patients with Narcolepsy.

Here are some brief excerpts from the article:

The NA with CA group had significantly more disrupted and shallower nocturnal sleep than the other groups. On MSLT, the IHS w/o LST group had significantly longer sleep latency (SL) compared with the two NA groups. The latter two groups did not show statistical differences in diurnal variation of SL…


The IHS w/o LST group had milder objective daytime sleepiness compared with the NA groups. In patients with NA, nocturnal sleep disturbances appeared only in cases with CA, despite a similar trend in diurnal changes in sleep propensity between the two NA groups…

Links to this article can be found below.


07 May 2011

A recent study published in Sleep Med Rev (February 2011), suggests sleep disorders may actually precede the onset of Parkinson’s disease. Futhermore, the researchers report that “sleep disorders may be the heralding clinical manifestation or a risk factor for Parkinson’s disease onset.”

Here is a brief excerpt from the research abstract: Parkinson’s disease

The incidence of Parkinson’s disease among patients with rapid eye-movement sleep
behavioural disorders ranged from 20% to 65% of cases, within a wide interval of time
(range: 2.2-13.3). The incidence of sleep disorders during Parkinson’s disease
progressively increased with disease duration in population-based studies but presented
marked fluctuations in clinical based studies. Older age, male gender, dopaminergic
treatment with higher dosage, cognitive impairment and hallucinations were associated
with the onset of sleep disorders during Parkinson’s disease. In the only population-based
study among Japanese men excessive daytime sleepiness was associated with a
threefold increased risk of developing Parkinson’s disease.

Available data suggest that sleep disorders could be the heralding clinical manifestation
or a risk factor for Parkinson’s disease onset. The prevalence of sleep disorders increases
during the course of the Parkinson’s disease and may be related to specific phenotype
and rapid progression of Parkinson’s disease. However, the current data are limited because
of limited sample size and poor study design; prospective studies with larger sample size
are warranted.

Links to this article can be found below.


03 May 2011

This article was first reported on 11 April 2011. This is an update to this report containing more information from the research. Even if you have read the previous article, you will find it useful to read the present update as well, because it contains more information than the first.

The Journal of Sleep Research (01 December 2010) has an interesting study on Idiopathic Hypersomnia (IH). This study attempts to summarize the various symptoms sufferers of IH have in common. This is an article worth reading for anyone interested in the study of Idiopathic Hypersomnia.

Here are some brief excerpts from the article:

Patients with Idiopathic Hypersomnia never feel fully alert despite a normal or long sleep
night. The spectrum of the symptoms is insufficiently studied. We interviewed 62
consecutive patients with Idiopathic Hypersomnia (with a mean sleep latency lower
than 8 min or a sleep time longer than 11 hrs) and 50 healthy controls using a
questionnaire on sleep, awakening, sleepiness, alertness and cognitive, psychological
and functional problems during daily life conditions. Patients slept 3 hrs more on
weekends, holidays and in the sleep unit than on working days. In the morning, the
patients needed somebody to wake them, or to be stressed, while routine, light, alarm
clocks and motivation were inefficient. Three-quarters of the patients did not feel
refreshed after short naps. During the daytime, their alertness was modulated by the
same external conditions as controls, but they felt more sedated in darkness, in a quiet
environment, when listening to music or conversation. Being hyperactive helped them
more than controls to resist sleepiness. They were more frequently evening-type and
more alert in the evening than in the morning. The patients were able to focus only for
1 hr (versus 4 hrs in the controls). They complained of attention and memory deficit.
Half of them had problems regulating their body temperature and were near-sighted.
Mental fatigability, dependence on other people for awakening them, and a reduced
benefit from usually alerting conditions (except being hyperactive or stressed) seem
to be more specific of the daily problems of patients with Idiopathic Hypersomnia than
daytime sleepiness…

Idiopathic Hypersomnia is characterized by chronic, daily excessive daytime sleepiness
despite normal sleep…Alertness is continuously decreased during the daytime, possibly
culminating in the irresistible need for sleeping. Naps are either refreshing or, more
typically, long and unrefreshing (American Academy of Sleep Medicine, 2005)…Several
clinical forms have been described in the past, including patients with sleepiness alone
(monosymptomatic) and patients with a prolonged night of sleep and sleep drunkenness
upon awaking (polysymptomatic; Roth, 1981). Idiopathic hypersomnia is now divided into
hypersomnia with and without a long (>10 h) sleep time (American Academy of Sleep
Medicine., 2005). Hypersomnia is idiopathic when the symptoms and polygraphic findings
cannot be better explained by medical or psychiatric (mostly depression) disorders. Based
on these evolving definitions, several series of patients have been published…These
series suggest that idiopathic hypersomnia is a rare disease, representing 8:10 to 1:10
patients with narcolepsy, with a prevalence of approximately 0.005% (Billiard and
Dauvilliers, 2001)…This is usually a life-long disease, although recent series suggest that
hypersomnia may spontaneously disappear in 14–25% of patients (Anderson et al., 2007;
Billiard, 1996; Bruck and Parkes, 1996)…

These limited case series mainly evaluate the night-time sleep and the Narcolepsy-
associated features…more rarely, some problems associated with the autonomic nervous
system…They frequently lack healthy controls, as Idiopathic Hypersomnia is usually
compared with Narcolepsy. The spectrum of problems linked to Idiopathic Hypersomnia,
however, is much larger in clinical practice and daily life. For example, there are a lack
of data on how long patients with Hypersomnia usually sleep when working…what is
their most efficacious means to wake up, how their alertness changes with
environmental…factors, how long they can focus, and the numerous daytime problems
they can experience. In our experience, many patients with Idiopathic Hypersomnia
complain of fatigue rather than of sleepiness, and have difficulties completing the
classical Epworth sleepiness score, suggesting that their complaint is not exactly
(or simply) sleepiness…

Most patients were able to differentiate sleepiness from tiredness. The first one was
described as an ability (and a need) to fall asleep soon and could be alleviated with
Modafinil. In contrast, tiredness was not necessarily associated with a need and an ability
to sleep (and sometimes even with an inability to fall asleep), but was expressed as a 
cognitive fatigue or loss of vital energy (not physical). A patient reported: I feel sleepy
only once a day (after lunch), but I feel tired all the time. Another patient said: Modafinil
is like botulium toxin, it keeps my eyes open, but my brain is still asleep…

The conditions able to fight sleepiness (drinking caffeine, being stressed, performing a
sport, being active or hyperactive, doing something really interesting, thinking too much
and being hungry or thirsty) were reported as often by the patients and the controls.
Stress was considered as the most alerting condition in the controls (chosen by 73% of
them). Being hyperactive was the most alerting condition in the patients (chosen by 65%
of them). Some patients reported that they would be more attentive if they were standing
up rather than sitting, and they would learn or rehearse their class easier while walking.
A patient wrote down lists of consecutive, useless numbers on a notebook while attending
a meeting so that she felt more attentive. Another would draw or fill a cross-word while
waiting for the train and travelling. Several patients spoke continuously, with a rapid flow,
especially when tired…

We tested the effects of various environmental stimuli on the ability to adequately function
during the daytime…As for the lighting conditions, darkness had a much more sedative
effect in the patients than in the controls…In contrast, the sound conditions, such as a
quiet environment, music or listening passively to other people, were clearly alerting in
controls but not in hypersomniacs…Stress, workload and frustration had similar tiring
effects in both groups. As for interactions with other people, being with friends was a
stimulant in both groups, but more so in the controls than in the hypersomniacs. Being
alone or with strangers did not change the level of alertness in the controls but decreased
it slightly, but significantly, in the hypersomniacs…

The patients reported attention deficit more frequently than the controls…They felt able
to focus for only 1 hr in a row versus almost 4 hrs in controls. As many as 70% of them
had difficulties focusing on their task in a loud environment versus 38% of controls…
Patients reported more frequent memory problems, forgot something more often…and lost
their belongings more frequently.

Automatic behaviours and being lost in thought were reported in the patients as often as
in the controls. But mind going blank, not remembering the beginning of an activity, telling
something inappropriate in a conversation and a significant inappropriate life mistake were
more frequent in the patients than in the controls…

As for psychological aspects, the patients as a group scored higher both on the anxiety
and depression scales…

As for somatic complaints, more patients than controls experienced problems in regulating
their body temperature (heavy sweating, feeling colder or, on the contrary, warmer, than
the other people in the same room) and cold extremities…about one-fifth of the patients
had digestive problems or palpitations, while it was rare in the controls. Half of the
patients…wore glasses) versus only 23% of the controls…One-third of the patients
reported an allergy versus only 14% in the controls…

As many as 78% of patients could hardly wake up in the morning or from a daytime nap,
with no specific benefit of alarm clocks, bright light, motivation, routine and sounds,
except if somebody wakes them up or if they are stressed. Daytime naps are more frequent
and longer than in the controls. Short naps are refreshing in the controls, but not in 75%
of the patients…Being hyperactive, helps them to resist sleepiness more than the controls.
In contrast to the controls, the patients are more evening time and more alert in the
evening than in the morning…

In addition, the sleep debt caused by the constraint of working is probably much higher in
hypersomniacs. Controls can sleep a maximum of 10–13 hrs in a row (versus 10–20 h in
hypersomniacs), suggesting that being able to sleep occasionally more than 13 hrs in a
row (without previous sleep debt) is specific to hypersomniacs…These results suggest
that the disease is acquired and does not result from an additional sleep load on an
already sleepy phenotype…

In this article, hypersomniacs are more frequently evening types than controls, and more
alert in the evening than in the morning. These data suggest that they have a delayed
shift in their circadian rhythm and a longer circadian period…

The methods that make awakening in the morning easier are different in the patients and
controls. Of interest, the habit of waking up at a certain time and the presence of a bright,
sunny light are quite efficient in the controls but not in the hypersomniacs…Whether
hypersomniacs have delayed pituitary hormone secretion in the morning (with a cortisol
phase delay as observed by Nevsimalova et al., 2000 in 15 hypersomniacs) or have become
resistant to these strong internal circadian signals is partly unknown…As a practical
consequence, one may advise hypersomniacs to live in a student community or with a family
(a parent or a caregiver) with someone responsible for waking them up…

Billiard (1994) previously noticed that most patients with Idiopathic Hypersomnia never
feel fully awake during the daytime, even if they can resist sleep easier than narcoleptics
(Komada et al., 2005)…

Taken together, it seems that hypersomnia narrows the spectrum of conditions associated
with full alertness, given that the patients feel tired in the presence of over-stimulating
conditions (a loud environment, strangers and flashing light), and feel sleepy in
under-stimulating conditions (darkness, left alone or listening to a conversation). Basically,
it appears in this study that the patients would feel all right only during holidays, in a nice
landscape with sun and friends. One may wonder if they use, in this case, the motivation ⁄
mood system to stay awake rather than the usual arousal systems…

In addition, being hyperactive helps hypersomniacs to resist sleepiness more than controls.
They use this term to describe both any increased motor activity (such as standing up
rather than sitting, walking while learning or speaking continuously) and doing several tasks
at the same time (such as writing while listening). Hyperactivity is a symptom of attention
deficit ⁄ hyperactivity disorder. In this case, excessive motor activity can be viewed as a
strategy to stay awake and alert, while decreased attention could be the consequence
of the hypoarousal (Lecendreux et al., 2000). We suspect that the hypersomniacs use the
motor arousal to supplement their cognitive arousal, and the stress of multi-tasks to
increase their level of alertness by fighting monotony. As a consequence, they could get
more tired. Hence, we wonder if the feeling of tiredness that the patients described as
different from sleepiness is a general lack of mental energy, as a consequence of using
multi-modal systems to fight sleepiness…

A deficit of attention has been previously described in patients with idiopathic hypersomnia
(Oosterloo et al., 2006)…Executive dysfunction is a consequence of many disorders with
excessive daytime sleepiness, including narcolepsy, sleep apnoea syndrome and sleep
deprivation (Anderson et al., 2009; Lis et al., 2008; Naumann et al., 2006); it had to be
improved using stimulants. We could not find any previous report of defective memory in
Idiopathic Hypersomnia…This limited mental endurance suggests that patients with
idiopathic hypersomnia have a cognitive fatigability, as it was described in patients with
chronic fatigue syndrome (Capuron et al., 2006);…

Telling something inappropriate in a conversation and making a mistake during a usual
activity are more frequently experienced by patients than by healthy controls (except
if they are sleep deprived)…When the patients mix two different activities during routine
tasks, they seem only partly able to shift from an action (bringing the garbage to the cellar)
to another action (going to the dentist). As this sort of shifting (and focusing) is seen as
a frontal lobe function, it suggests that their automatic programs are no longer driven by
the frontal lobe. Although they are not monitored, they do not seem to be drowsy or in
stage one during these behaviours. Rather, they are unfocused. The automatic behaviours
can be partly responsible for the memory problems reported by the patients…

The symptoms reported in this article are subjective, which constitutes a limitation of this
work…The questionnaire is, however, the same for any subject, whether hypersomniac or
not. On the contrary, we try to catch the somatic problems of the patients, which are by
definition subjective.


Links to this article can be found below.
Wiley Online Library
Ingenta Connect
Journal of Sleep Research