Finding it difficult to understand Idiopathic Hypersomnia? Having trouble explaining it to others? Our fact sheet is a brief overview of what IH is, what the typical symptoms are and where you can go for help and further information.


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"It's the everyday reality that I just feel I'm not getting as much out of life as I could be..."

In this video UK Dr Anu Bhatia is spot on with the 3 main symptoms of Idiopathic Hypersomnia with long sleep. Prolonged nighttime sleep (typically 12-14hrs), difficultly waking up and feeling unrefreshed and disorientated (sleep drunkenness) and excessive daytime *sleeping* - actually sleeping during the day not just tired or sleepy. Anna the young women in the video who is diagnosed with Idiopathic Hypersomnia says something I'm sure everyone with Idiopathic Hypersomnia can relate to:

"It's the everyday reality that I just feel I'm not getting as much out of life as I could be, because I'm tired or because I'm sleeping for half the day where I would rather be doing something else." - Anne


While it may not appear possible that someone who can and often does sleep in excess of 10 hrs a night (of good quality sleep) with an added nap during the day could feel sleep deprived for someone with Idiopathic Hypersomnia it is. Sufferers of Idiopathic Hypersomnia with long sleep have enormous sleep needs and if not met just like healthy people they experience the effects of sleep deprivation.

 “New research suggests that the consequences of chronic insufficient sleep are less reversible than previously understood and may involve lasting damage to the brain. Researchers studied neural activity in mice under different levels of sleep loss. They found prolonged periods without sleep led to impaired neurological cell function and to the death of brain cells. This is some of the first evidence to indicate irreversible damage to the brain linked to insufficient sleep.”

Read more from the original story.

Are you sleep deprived? Check out these 10 Signs, they might surprise you!

1. You fall asleep immediately. You might chalk this up to being a good sleeper, but the opposite is true. If you routinely fall asleep within five minutes of lying down, you probably have severe sleep deprivation, possibly even a sleep disorder, according to the National Institute of Neurological Disorders and Stroke. 

2. You're more impulsive than usual. Grabbed a donut at the morning meeting when you normally wouldn't touch it? Splurged on that expensive top you've been eyeing online? A lack of sleep may be to blame. "The prefrontal cortex is greatly affected by sleep deprivation," explains Harris. "This area is associated with judgment, impulse control, visual association and attention. Less sleep leads to poorer judgment and acting impulsively, e.g. poor eating when sleep deprived, buying things without thinking about the consequences, irritability and mood issues with others." 

3. You're relying on clichés. If you find yourself throwing around phrases like, "Beggars can't be choosers" and "Better safe than sorry," and you're not currently in retirement, it may be time to take a nap. "The frontal lobe is associated with speech, constructive thinking and novel thinking/creativity and is greatly impacted by sleep deprivation," notes Harris. "Sleep deprived people find it difficult to have spontaneous complicated speech, leading to more slurring, use of clichéd phrases, stuttering and monotone speech." 

4. You're forgetful. If you ran out of the house to mail your dad's birthday card only to realize you -- once again -- left it on the kitchen counter, or you completely blanked on a new coworker's name despite hearing it several times, a lack of rest may be messing with your memory. Sleep leads to memory consolidation and emotional processing, according to Harris. "Without proper rest, it's harder to form memories," she notes. "It is harder to put emotional memories into context, and thus, it is more difficult to act rationally and thoughtfully." 

5. You're hungrier than usual. When you don't log enough sleep each night, it's harder to stop yourself from downing a bag of chips, followed by a scoop or two of ice cream. Here's why: Sleep deprivation can increase your appetite by affecting two key hormones in our body: leptin and ghrelin. "Leptin is the hormone that tells our body to stop eating, giving us the sensation that we are full," explains Harris. "Ghrelin, on the other hand, is a hormone that gives us a hunger signal and tells us to eat. When we don't get enough sleep, the leptin/ghrelin balance is shifted, with a drop in leptin and an increase in ghrelin." In a nutshell, without a good night's sleep, the hormone telling us to eat more increases, while the hormone that tells us to stop eating decreases. 

6. You’ve read this sentence twice. An inability to concentrate is a sure sign that you're not spending enough time with your eyes closed. Along with a lack of focus not getting enough sleep also impairs your ability to make spilt second decisions, according to a 2009 study in the journal Sleep -- the kind of decision-making that can come in major handy, say, when driving and trying to avoid a near accident. 

7. You're clumsy. Some people seem to be naturally clumsy -- like the adorable, ever-falling Jennifer Lawrence -- but skimping on sleep can also cause issues with motor skills, such as being unsteady on your feet and stumbling when carrying your things, notes Harris. 

8. You're fighting with your partner. Your partner may have ticked you off or you may just be tired -- or both. A 2013 U.C. Berkeley study found that couples have more frequent and serious fights when they don't get enough sleep. The researchers note that the lack of shut-eye makes it harder to avoid and handle conflict. 

9. You're zoning out. If you're spacing out while driving, such as missing your exit on the freeway or doing things throughout the day with little memory of them later on -- in other words, coasting on automatic pilot and not really being aware and in the moment, according to Harris -- you need to get more sleep. 

10. You conk out at the movies or during a daytime flight. Falling asleep the minute you enter a dark or dull environment, particularly if it's during daylight hours, is one of the hallmarks of sleep deprivation. If you're getting enough sleep, you should be fairly peppy and alert during the day. It is daytime, after all.

From the original story


Is Idiopathic Hypersomnia a Rare Disease?

Many people ask, is Idiopathic Hypersomnia (also referred to as idiopathic hypersomnolence) a rare disease? YES IT IS! If you have trouble getting people to accept IH is not only real but that it is actually a recognised RARE DISEASE share this link from the Genetic and Rare Diseases Information Center (GARD) Office of Rare Diseases Reseach

Hypersomnolence Australia is a registered Not For Profit Health Promotion Charity