Showing posts with label idiopathic hypersomnia. Show all posts
Showing posts with label idiopathic hypersomnia. Show all posts

26 August 2016

SPOTLIGHT: WHEN WE SLEEP TOO MUCH (NARCOLEPSY, HYPERSOMNIA, AND MORE)

SPOTLIGHT: WHEN WE SLEEP TOO MUCH 


Insomnia may be a major challenge for many Americans, but its opposite (too much sleep) occurs in many people struggling to live normal lives in the face of narcolepsy, hypersomnia, and other legitimate sleep disorders that fall under the category of hypersomnia. 

Here are 48 links to enlighten readers about the very real challenges of living with hypersomnia, including these interesting finds.

[Go there now!]



  • Integrative Medicine Approaches to Narcolepsy
  • People with Narcolepsy (PWN) and the challenges they face in working or keeping jobs
  • Understanding the difference between feeling tired all the time and having a hypersomnia condition
  • The science of the brain as it relates to chronic sleepiness
  • Children with hypersomnia
  • The pharmaceutical challenges of treating hypersomnias
  • Sleeping Beauty Syndrome
  • New research and trends in hypersomnia
  • People with Narcolepsy speak out
  • When narcolepsy is mischaracterized by the media
  • Refining the way hypersomnias are diagnosed
  • More good press for Wide Awake & Dreaming: A Memoir of Narcolepsy


[Go there now!]


Like this post? Please share widely: 
http://thisweekinsleepnews.blogspot.com/2016/08/hypersomnia-narcolepsy-cataplexy.html

17 January 2016

ABCs of Sleep || H is for Hypersomnia


Hypersomnia is best understood as the opposite of insomnia. Whereas an insomniac struggles to achieve sleep at night, a hypersomniac struggles to stay awake during the day. It's estimated that maybe as many as five percent of the population suffers from some form of hypersomnia that is not explained by other medical conditions or lifestyle choices. Hypersomnia usually refers to a symptom (the same can be said for insomnia). However, primary forms do exist along the spectrum of sleep disorders.

The chronic sleepiness that characterizes hypersomnia (also referred to as hypersomnolence) is most frequently referred to as excessive daytime sleepiness (EDS) by sleep health professionals. It happens even when the person has had adequate sleep during the evening and is not remedied by getting more sleep.

People with hypersomnia as a primary complaint may actually be suffering from undiagnosed sleep disorders like Restless Leg Syndrome (RLS) or Obstructive Sleep Apnea. If this is the case, their problems with EDS tend to disappear once they treat their other sleep disorders. The best way to know if other sleep disorders are causing symptomatic hypersomnia is to undergo an overnight sleep test (an attended nocturnal polysomnogram) as well as a daytime "nap" test known as the MSLT (Multiple Sleep Latency Test).

The sleep disorders discussed below belong in the category of Central Disorders of Hypersomnolence, according to the ICSD-3.

Narcolepsy is a neurological sleep disorder which results in involuntary "attacks" of sleep (or sleep-like behavior) during the day, usually brought on by emotional triggers. Narcoleptics struggle with EDS as well as sleep paralysis at night, hallucinations before sleep onset or at the end of sleep, and sometimes (though not always) a condition called cataplexy, in which the narcoleptic's body literally collapses on the spot due to emotional triggers. These collapses give the appearance that the person is asleep, but in fact, they are often awake.

They may also suffer from disturbed sleep, vivid dreams, automatic behavior (in which they experience microsleep-like behavior during activity and yet continue the activity) and problems with focus and memory. It's caused by low levels of a wakefulness chemical in the brain called hypocretin (aka orexin) or disruptions in the central nervous system which prevent its proper release. How the levels become low is not well understood, except that it might be due to heredity, infection, traumatic brain injury, autoimmune problems, low histamine levels or environmental triggers.

Narcolepsy is diagnosed through a specific batch of sleep tests: the overnight sleep study (NPSG) and the Multiple Sleep Latency Test (MSLT), which measures how quickly it takes the patient to fall asleep during the day.

Kleine-Levin Syndrome (KLS) is more popularly known as Sleeping Beauty Syndrome, in which the sufferer may encounter episodic hypersomnia for days or weeks at a time. Onset of this rare (one in a million occurrence) sleep disorder is generally blamed on viral triggers; several viruses have been shown to cause KLS. It generally affects adolescent males but can happen to anyone. Other symptoms of KLS include excessive appetite and unusual cravings for food, increased sexual urges, changes in mood, cognitive dysfunction, and an overwhelming sense of malaise.

KLS is a sleep disorder that is diagnosed based on symptoms and history and only after eliminating any number of other medical conditions that might be at the root of both the hypersomnolence and unusual behavior.

Idiopathic Hypersomnia refers to a diagnosis that occurs when chronic hypersomnolence cannot be explained by any other preexisting medical condition or sleep disorder or by lifestyle or behavior.

In some cases, IH is "resolved" when the patient diagnosed with it discovers they have another illness that is causing the hypersomnolence. Treatment of that illness often improves their problems with sleepiness. IH can no longer be "idiopathic" if a root cause can be identified.

However, for some, IH is a differential diagnosis that can identify no apparent root cause, and that is what makes it so mysterious for patients and physicians to understand and to treat.

All occurrences of hypersomnia can be very difficult to live with, as the need to sleep during the day interrupts the personal, social and professional lives of its sufferers in such a way as to make normal living (including physical activities and relationships) difficult to manage.

Treatments for these presentations of hypersomnolence depend upon diagnosis.
  • Narcoleptics have a few medications to help them balance hypocretin levels and stay awake during the day. 
  • People with KLS have few options because of the mysterious nature of their disorder. 
  • Idiopathic Hypersomnia is a diagnosis of exclusion; it can, in fact, be "undiagnosed" once other health conditions are discovered which explain the source of the hypersomnolence. Treating that newly diagnosed medical condition may or may not improve the hypersomnia, but generally speaking, doctors are going to attribute a patient's problems with irresistible sleepiness to a known medical condition, as it is mostly likely to be its root cause.
For more information about hypersomnia, visit the Hypersomnia Foundation.

08 September 2015

Today's #Sleeptember FACT --- This week is Idiopathic Hypersomnia Awareness Week

Idiopathic Hypersomnia is quite a mouthful. Let's break it down. Idiopathic means "of unknown origin; mysterious." Hypersomnia means "overt or excessive sleepiness or somnolence."

Put them together and you have a condition in which people are sleepy all the time but they have no explanation for their sleepiness (such as staying up too late, working night shift, insomnia, sleep apnea, other non-sleep health conditions, mental health problems, drug interaction, etc.).

Once a cause can be identified (such as a diagnosis of Multiple Sclerosis, for example), then their hypersomnia is no longer idiopathic, but explained. Then, instead of that same person having a diagnosis of Multiple Sclerosis and Idiopathic Hypersomnia, they have a diagnosis of MS with hypersomnia as a symptom of their disease. And then they can benefit from working with a neurologist to identify ways to manage the excessive sleepiness within the framework of treating Multiple Sclerosis.

However, for the patient where all possible explanations for hypersomnia are ruled out, they are left only with Idiopathic Hypersomnia, or IH, as a diagnosis, which amounts to a mysterious case of chronic sleepiness, with few good ways to treat it.

Not a great way to get to the bottom of a problem that can challenge people to keep jobs, maintain friendships, even drive cars. Without knowing the origin of the problem, their doctors will be challenged to find appropriate medications for people with IH, and lifestyle changes they may attempt in good faith may or may not make a difference. Every effort to alleviate IH may end up just being trial and error.

Think that is frustrating? Imagine falling asleep at work several times a day while on a big project. Imagine trying to keep up with your toddler all day (keeping them out of trouble!) while the urge to sleep is nearly irresistible. Imagine taking an important exam and falling asleep in the middle of it. These are just a few of the challenges that people with IH face.

Hypersomnolence Australia is hosting Idiopathic Hypersomnia Awareness Week over the week of September 7-13, offering tons of facts, graphics and interactive opportunities to share knowledge about these disorders. Check out these realities about IH:

  • IH is often misdiagnosed and misinterpreted. 
  • Exact prevalence is unknown but IH is thought by many to be as prevalent as narcolepsy.
  • IH is a "true" and disabling neurological sleep disorder. People with IH are not lazy; sleepiness is a symptom of the disease and is usually not relieved by sleep or medications.
  • There are no approved medications specifically for IH. New and appropriate therapies are needed. 
  • Impaired cognitive ability, excessive sleep, and the continuous feeling of never being fully awake profoundly affects work, education and quality of life and leaves sufferers at risk of workplace and motor vehicle accidents

Whatever else Idiopathic Hypersomnia is, it is not a minor problem. Even if you don't have IH, someone driving the truck in the lane next to you might. A childcare worker with IH may be handling your child's medications while you are at work. A data entry person might be handling one of your bank or credit accounts. Accidents happen when people are sleepy, regardless the reason behind the sleepiness. These people need more research into the causes of their hypersomnia so they can lead healthy, safe lives. 

#SLEEPTEMBER
Learn how to raise awareness here:
  • Follow the Hypersomnolence Australia on Facebook
  • Follow the Hypersomnolence Australia on Twitter @Hyper_Sleep
  • Use the hashtags #IHAW2015 and #HAIHope to tell us what you hope for
  • Share your Patient Perspective in email to hypersomnolenceaustralia@gmail.com
  • Find other ways to participate here

08 September 2014

Events: September 8-14, 2014 is Idiopathic Hypersomnia Awareness Week

From the Hypersomnia Foundation website:

"Hypersomnia is a debilitating neurological disorder where patients lose their cognitive ability, sleep excessively, yet still crave sleep above all else. ...This means they often struggle to work, operate a vehicle or live independently. In fact, often just waking up is an ordeal in and of itself with even sonic boom alarms, the help of family and powerful stimulants not being enough. While the onset of symptoms is generally in early adulthood it routinely takes up to a decade for new patients to be formally diagnosed…"

"Sleepy" 
The founder of SHC was diagnosed with Idiopathic Hypersomnia (IH) several years ago after finding herself faceplanting into her laptop during engaging teleconferences with clients. At some point, the daytime sleepiness was so severe that she was afraid to drive more than an hour at a time without having to stop to nap. She finally realized that "being a working mother" was not a reasonable explanation for her otherwise unreasonable symptoms. She participated in both an overnight polysomnogram and a daytime multiple sleep latency test (MSLT) to uncover the source of her excesses daytime sleepiness. It turned out to be a combination of IH and Upper Airway Resistance Syndrome (UARS). Treating both conditions has made all the difference in the world. She can drive safely, manage online meetings with maximal alertness and get through the day without taking added naps, which impose on her already busy schedule.

If you feel excessively sleepy, day in and day out, and you want your energy and your hours back (!), please consult your physician about potential causes.

25 August 2014

Sleep Hygiene Tip of the Week || Think carefully before napping

"Rosie and Jennie Took a Cat-Nap."
Harry Whittier Frees, 1915. Public domain.
There's lots of contradictory advice out there about napping. Who should nap? Who shouldn't nap? When is a nap a good idea? A bad idea? What's a good nap length? Let's take these one at a time.

1. Who should nap?
  • Naps are good for children as their developing bodies often need the added rest.
  • The elderly often nap, and it's not a bad idea. They may have multiple health conditions that lead to daytime sleepiness, and they may also be taking numerous medications that cause them to feel drowsy. 
  • Anyone who is sick with a virus or infection can benefit from napping. The body is working hard at the cellular level to manage healing; sleeping gives the body an added opportunity to repair itself.
  • Anyone with a chronic health condition or a serious disease like cancer can benefit from a nap. 
  • Postoperative patients can benefit from naps while they are in recovery and/or rehabilitation mode.
2. Who shouldn't nap?

  • Don't get into the habit of napping if you are suffering from insomnia. It seems counterintuitive ("don't sleep if you can't sleep?"), but regular napping may actually lead to chronic insomnia. Try to get most of your sleep at night and only nap if you really can't avoid it. 
  • If you suffer from depression, taking a nap may not help matters as it may continue to alter already disrupted sleep patterns that arise from the condition or via the pharmaceuticals used to treat depression.

3. When is a nap a good idea?

  • If you are unexpectedly drowsy, a quick nap can give you the recharge you need. Often we feel drowsy in the early to mid-afternoon. As long as you don't oversleep, you can benefit from a nap at this time.
  • If you work night or overnight shifts, a nap prior to working can add some sleep to your "bank" so your recovery time afterward can be easier.
  • If you have been diagnosed with idiopathic hypersomnia or narcolepsy, planned naps can help offset these conditions. (Please don't diagnose yourself: get a confirmed diagnosis from a sleep health professional. Excessive daytime sleepiness can be caused by any number of health conditions, many of them not related to sleep.)

4. When is a nap a bad idea?

  • If you tend to wake up groggy from naps, then you might not benefit from taking them right before you need to perform tasks that require alertness. 
  • If you have insomnia, you might consider how often you nap, and for how long. Naps, if not absolutely necessary for function or healing, can actually reduce your sleep drive at night and make it harder to fall asleep or to get most of your sleep at night.
  • It's after 3pm. Any naps after this time may very well disrupt your nighttime sleeping patterns.

5. What's a good nap length?

  • Quick naps are best. Ten to 30 minutes should do the trick.

Other things to consider:

  • If you use a device for your nighttime sleeping, such as supplemental O2 through a cannula, a PAP mask, nasal strips or an oral device, make sure and enlist these tools for naps, as well. They are yours to use to improve all sleep, not just the sleep you get at night.
  • Eating a meal right before a nap could aggravate any heartburn or gastroesophageal reflux disease you may suffer from. You may wish to take a medication for this condition prior to napping.
  • Always opt for a nap if you are driving a motor vehicle or operating heavy machinery and find you are extremely drowsy. Do not think you can "power through" extreme fatigue. Your sleep drive is a physiological process which can't be denied. 
  • A warm room might be conducive to sleep onset, but you may not have a very long nap if you are overheated. If your sleeping environment is overwarm, try using a fan and blankets to moderate ambient temperature.
  • Make sure you nap in an environment conducive to sleep (make sure it is dark and quiet, for example) or you might be frustrated by your failure to sleep.
  • If you are regularly fatigued and need to nap daily, this could be a sign of an underlying health condition. Contact your doctor to discuss your options.