Sleep walking for narcolepsy awareness

The Sleep Education blog invited Julie Flygare, author of the REM Runner blog, to blog about her experiences as a person with narcolepsy. Julie is an avid runner, and participated in the Boston Marathon to raise awareness and funds towards finding a cure for narcolepsy.

Of the 365 days in a year, we spend 122 of those days asleep, or trying to sleep.

Like it or not, we snooze for about eight hours a day; 10 days a month, four months a year, and 25 years over the course of our lives.

Sleep is the other one-third of life we rarely think about, instead sweeping it under the rug to move on to other more important things in the daylight.

Yet, when sleep slips away – all of life is affected.

Restful sleep slipped away from me at age 24, while I was in law school. Crucial daytime tasks like studying for exams and driving a car became extraordinarily difficult.

At first, excuses were easy to come by. I blamed myself. I blamed law school. I hadn’t had enough caffeine. I’d had too much caffeine. I blamed dark rooms, hot rooms, late nights, early mornings.

When I could no longer find excuses, I sought help. Turns out, an autoimmune disorder of the sleep/wake cycle called narcolepsy had robbed me of the promise of a good night’s sleep.

I was shocked to learn that an estimated 200,000 Americans live with narcolepsy and over 42 million Americans live with chronic sleep disorders.

Apparently, people are sleep walking all over America. I think it’s time we come together – to walk together and talk about sleep.

Please join me at the National Mall in Washington DC for “SLEEP WALK 2012” on Saturday March 10th, 2012 at 9am. This event, hosted by Wake Up Narcoelepsy, will celebrate National Sleep Awareness Week (March 4-11, 2012). March 10th is “Suddenly Sleepy” Saturday – a day dedicated to narcolepsy awareness.
Full details and registration at http://www.wakeupnarcolepsy.org. Over 70 people are registered at this point, coming from a dozen states, to sleep walk with us.

I encourage people with sleep disorders, sleep experts and sleep health enthusiasts from across the US to join us. Let’s take a few hours of the year to honor the other one-third of life – sleep.

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“Paralyzing Love” Shuts Off Neuroscientist’s Waking Functions

Oregon neuroscientist Matt Frerking is an extraordinary case of a person suffering from a rare sleep disorder. His narcolepsy with cataplexy prevents him from experiencing intensely positive feelings like joy or love without literally becoming paralyzed. Yet he continues to go about his daily life as a successful researcher and family man. He even drives to work.

Frerking was profiled on ABC’s television newsmagazine “Nightline” on Tuesday. His story will continue Thursday evening in the ABC primetime special “Secrets of Your Mind: Why We Do What We Do.”



The Sleep Education Blog reported earlier this summer that narcolepsy with cataplexy affects only .02 percent of adults in the world. Strong emotions such as surprise, anger or love trigger a sudden loss in muscle tone. Sufferers of the disorder may slump forward or even fall to the ground. They remain lucid throughout the attack, trapped in their bodies.

There is no cure, but Frerkin has adapted his lifestyle to avoid the attacks by suppressing his emotions and avoiding any environmental influences that may trigger strong emotions. A sizable cocktail of prescription medications also helps reduce and delay the attacks.

Frerkin has learned to pull himself out of cataplexy by neutralizing his emotions. He copes with the attacks by dreaming up complicated solutions to complex work problems while his body is paralyzed.

In the “Nightline” interview he regains control by thinking of “Snare Complexes,” whatever that means.

“Secrets of Your Mind: Why We Do What We Do” airs Thursday, August 19 at 8:00 p.m. est. on ABC.

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Ravens Rookie Linebacker Kindle Fractures Skull, Narcolepsy to Blame?

Speculation is rampant after the Baltimore Raven’s first pick in the 2010 NFL draft suffered a bizarre off -field injury earlier this week. Rookie linebacker Sergio Kindle will miss training camp after fracturing his skull by falling down two flights of stairs. Numerous media outlets are linking the fall to narcolepsy. A sleep specialist might respond to these reports with a healthy dose of skepticism.

The original report came from Raven’s coach John Harbaugh. He said the fall happened when Kindle turned the wrong way after waking up in the middle of the night at a friend’s home. The linebacker’s college coach Mack Brown responded with speculation that narcolepsy led to teh incident.

Here’s the problem, a person with the type of narcolepsy that could cause a falling injury would be incapable of playing sports, let alone professional football. Narcolepsy with cataplexy causes a person who is awake to suddenly lose muscle tone. These episodes are usually triggered as a response to strong emotions such as surprise or happiness.

Wouldn’t football cause a near constant narcoleptic response based on the sport’s violent and emotional nature? What happens when a linebacker is suddenly blindsided by an offensive guard’s block? A person with narcolepsy with cataplexy would be unlikely to last more than a few plays before collapsing.

And why would a team draft a player with the condition? Kindle fell from the first round of the NFL draft, as he was originally projected. But scouts did not seem concerned with reports claiming Kindle had narcolepsy. Knee injuries and character problems caused the draft day slide. A high level Raven’s scout said the team would have never drafted Kindle if narcolepsy was such a problem.

You may remember the Sleep Education Blog covered that story earlier this year. Kindle reportedly couldn’t stay awake in team meetings when he was with the Texas Longhorns. The same reports mentioned Kindle struggled with substance abuse.

It’s impossible to say what happened in the middle of the night earlier this week, but based on medical knowledge and past reports it’s safe to say narcolepsy with cataplexy did not cause Kindle to fall down stairs and fracture his skull. Hopefully we will learn the true cause of the injury as the story unfolds.

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Refresh narcolepsy research: Stanford lab needs your votes to win $250k Pepsi grant

The sleep research community is asking for your help to win funding for narcolepsy research. The Stanford University Center for Narcolepsy is eligible to win a $250,000 grant from the Pepsi Refresh Project, a monthly contest to fund causes that will make a positive impact. The vote is open to anyone, and it ends at the end of June.

Click here to vote for narcolespy research.

As of Tuesday, June 15th, Stanford’s entry “Fund Narcolepsy Participation in International Immunochip Project” ranked 44th. Only the top two finalists are awarded funding.

Below is The Stanford University Center for Narcolepsy pitch, as posted on the Pepsi Refresh Project website:

Goals
Participate in ImmunoChip project testing narcolepsy samples
Learn about the genes predisposing to narcolepsy
Raise narcolepsy visibilty to that of other autoimmune diseases
May lead to eventual therapeutic interventions to prevent narcolepsy
Narcolepsy may be a model for other disorders of the brain
Overview

Narcolepsy is common; it affects 1 in 2000 people, a frequency similar to to Type 1 Diabetes or Mutliple Sclerosis. With recent and exciting findings there is now no doubt that narcolepsy is caused by an autoimmune destruction of 70,000 brain cells producing hypocretin, a wake producing substance. Despite recent advances there is little funding of narcolepsy research; less than one thousandth the funding that goes to Type 1 Diabetes for example. This is unfortunate as narcolepsy may be the first example of a neuronal specific autoimmune disorder, and may be a model for other diseases such as schizophrenia, bipolar disorder or autism.

The goal of the ImmunoChip Project is to compare and contrast the genes involved in over 20 autoimmune diseases (about 50,000 samples). The funds from the Pepsi grant would allow for the Stanford CFN to include 4,200 narcolepsy samples in this important international collaboration increasing visibility

Read more at http://www.refresheverything.com/narcolepsyimmunochipproject

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Paralyzed by happiness, strong emotions trigger real-life sleep disorder narcolepsy with cataplexy

Imagine living in fear of the one thing everyone wants - those moments of happiness. For the unlucky few cursed with a rare sleep disorder, one fleeting blissful thought is all it takes to launch a paralyzing attack.

At first the muscles start to full heavy, then the head begins to fall forward and the body falls to the ground. The victim remains lucid the entire time. Just one bad fall could result in serious injury or death.

The disorder is a form of narcolepsy. A unique symptom called cataplexy causes a sudden loss in muscle tone while awake. Episodes of cataplexy tend to be triggered by a strong emotions, usually happiness, laughter or surprise.

Only .02 percent of adults in the world have narcolepsy with cataplexy. The cause is still under debate. Some researchers believe the brain somehow confuses wakefulness with REM sleep. The signal that causes the body to go limp in REM sleep is sent while a person is fully awake.

Listeners of the radio show “This American Life” should be familiar with the disorder. A recent episode told the story of a man who has narcolepsy with cataplexy in a segment titled “I've Fallen in Love and I Can't Get Up.”

The subject of the story Matt can’t tell his wife he loves her without having an attack. He can’t see his grandchild, he can’t look at puppies, he can’t even think about a photograph he’s never actually seen.

When he communicates, he has to talk slowly and never get too excited or enthusiastic. In his own words, Matt has to act like a robot.

Narcolepsy with cataplexy has no cure, so patients have to change their behavior and avoid emotion-causing stimuli. Doctors often prescribe stimulants to treat the daytime sleepiness symptoms. Antidepressents combined with the drug GHB, or Xyrem, can reduce and delay, but not eliminate cataplexy.

In a BBC segment, a home video begins with another man with narcolepsy with cataplexy collapsed at the foot of a staircase. He complains of regularly feeling trapped in his body while police or emergency workers treat him thinking he’s unconscious from another accident.



Humans aren’t the only species who can have narcolepsy. Some dogs also collapse from cataplexy.

Read more about narcolepsy at sleepeducation.com.

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Projected first-round NFL draft pick has narcolepsy?

Pro football scouts are taking a hard look at outside linebacker Sergio Kindle in the hours leading up to tonight’s NFL draft. The impact pass rusher made a splash at University of Texas, recording 55 tackles including six sacks in 2009, but some teams may pass on Kindle because of his problems off the field. Some of those issues are due to his reported struggles with narcolepsy.

Milwaukee Journal-Sentinel’s Bob McGinn reports Kindle would fall asleep in team meetings, leaving his college coaches wondering what was wrong with him.

Several unnamed sources told the Milwaukee Journal-Sentinel that Kindle is now taking medication to control his narcolepsy and attention deficit disorder.

His problems don’t stop there:

“In 2007, Kindle was arrested for drunken driving and suspended three games. His license was suspended, he attended mandatory Alcoholics Anonymous meetings and he performed 60 hours of community service.
Last June, Kindle suffered a concussion when the car he was driving in Austin, Texas, slammed into an apartment building. He didn't report the incident to police until the next morning.
At the combine, Kindle said the accident occurred because he was texting. Also at the combine, he told the Journal Sentinel that he no longer used alcohol.”

Some experts project Kindle to go as high as 12th overall tonight. The NFL draft airs tonight on ESPN.

People with narcolepsy tend to have excessive daytime sleepiness. Frequent naps are common. And sudden, irresistible “sleep attacks” may occur in unusual situations.

Learn more about narcolepsy. Read a narcolepsy case study on SleepEducation.com.

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Canine Narcolepsy: Dogs Help Advance Research

Narcolepsy is a sleep disorder that affects hundreds of thousands of people. And you may be surprised to know that dogs can have narcolepsy too.

“Nobody knows how frequent narcolepsy is in dogs,” AASM member Dr. Emmanuel Mignot told Discovery’s “Is It Possible?” He is the director of the Center for Narcolepsy at the Stanford School of Medicine.



The first reports of narcolepsy in dogs were published in 1973 and 1974. Over the following decades Stanford researchers were able to make important discoveries by studying canine narcolepsy.

In 1999 Mignot and colleagues determined that canine narcolepsy is caused by disruption of a hypocretin receptor gene. Hypocretin is a hormone that helps promote wakefulness. This led to their groundbreaking discovery that people with narcolepsy lack brain cells that make hypocretin.

More recently Mignot found evidence that narcolepsy is an autoimmune disorder. And his research shows that bacterial infections such as strep throat may activate the immune system response that kills hypocretin cells.

People with narcolepsy tend to have excessive daytime sleepiness. Frequent naps are common. And sudden, irresistible “sleep attacks” may occur in unusual situations.

Some people with narcolepsy also have “cataplexy.” This unique symptom involves a sudden loss of muscle tone while you are awake.

Your head may drop, or your knees may buckle. You may completely fall out on the floor. Episodes of cataplexy tend to be triggered by a strong emotion such as laughter or surprise.

Watch videos of dogs with narcolepsy and cataplexy on the Web site of the Stanford Center for Narcolepsy. Read more about narcolepsy.

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Narcolepsy & “Fainting Spells”

Recently in the New York Times Dr. Lisa Sanders described the mysterious case of a woman’s fainting spells. For several months the 49-year-old nurse had been fainting almost daily.

She would feel a “fluttering sensation” in her stomach. Then suddenly she would fall out on the floor.

She spent two nights in the hospital undergoing tests. But everything was normal. Her heart rhythms and blood pressure were fine.

The results baffled her physician. So he sent her to see specialists.

One of them thought the fainting spells might be seizures. But further testing found no unusual brain activity.

The case was solved when she suddenly collapsed while meeting with one of her doctors.

“Her sudden collapse looked as if a switch had been thrown and all her muscles just turned off,” wrote Sanders.

The doctor realized that she hadn’t actually fainted. She never lost consciousness during the episode. She was aware of her surroundings and could hear him speak. And the episode ended quickly. As soon as it was over, she felt fine.

He concluded that she was suffering from “cataplexy.” It is a unique symptom of narcolepsy.

Cataplexy involves a sudden loss of muscle tone while you are awake. Your head may drop, or your knees may buckle. You may completely fall out on the floor. Episodes of cataplexy tend to be triggered by a strong emotion such as laughter or surprise.

Narcolepsy also tends to involve excessive daytime sleepiness. Frequent naps are common. And sudden, irresistible “sleep attacks” may occur in unusual situations. Narcolepsy may occur without cataplexy.

Today the Boston Globe described how 26-year-old Julie Flygare is battling narcolepsy and cataplexy. In three weeks she plans to run the Boston Marathon.

She is one of four women who will be running to raise funds for Wake Up Narcolepsy. Flygare is sharing her story on the REM Runner blog.

Learn more about narcolepsy. Read a narcolepsy case study on SleepEducation.com.

Get help for an ongoing sleep problem at an AASM-accredited sleep center near you.

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Narcolepsy: Waking Up with a Nicotine Patch

Doctors at the AASM-accredited Vanderbilt Sleep Disorders Center recently described how they used a nicotine patch to help a teen who has narcolepsy. Their case report appeared last month in the Journal of Clinical Sleep Medicine.

A 17-year-old student with narcolepsy was struggling to make it to school on time. He was often late even though his school allowed him to report at 10 a.m. As a result he failed two classes.

The problem was that he suffered from severe “sleep inertia” in the morning. He simply could not wake up. He would take at least an hour to get up from bed.

He was taking modafinil in the morning and at lunch to treat his excessive daytime sleepiness. The brand name for modafinil is Provigil.

The stimulant helped him remain alert at school. But he was unable to swallow the medication until he had awakened.

So his doctors instructed his parents to try giving him a nicotine patch in the morning. This is commonly used by people who want to quit smoking. A dose of nicotine enters the blood by being absorbed through the skin. The nicotine acts as a stimulant.

His parents applied a 14-mg nicotine patch to his arm about 20 minutes before it was time for him to wake up. Then after 20 minutes they woke him up and washed off his arm.

Using the patch allowed him to become alert enough to swallow his medication. Waking up at a consistent time helped stabilize his schedule. He was able to fall asleep easier at night. He also was able to avoid napping during the day.

This unique solution helped him arrive at school on time most days. He was able to participate in more events at school and eventually graduated.

You should talk to your doctor before using a nicotine patch. Contact an AASM-accredited sleep center for help with narcolepsy or another sleep disorder.

Read more about narcolepsy.

Image by pireus+

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Finding the Narcolepsy Target

A new study provides evidence to support the idea that narcolepsy is an autoimmune disorder.

A decade ago it was discovered that people with narcolepsy lack brain cells that make “hypocretin.” This is a hormone that helps promote wakefulness. The finding helped explain why people with narcolepsy have episodes of uncontrollable sleepiness.

But why do these brain cells die in people with narcolepsy? Last year the Sleep Education Blog reported on a new study. It suggested that the immune system attacks and destroys the brain cells by mistake. In August another study reported that this attack may be triggered by an infection.

Now Swiss and French researchers report that they may have identified a specific target of the autoimmune attack that causes narcolepsy. It is a protein called Tribbles homolog 2 – or “Trib2.”

They believe that Trib2 is an “autoantigen” in narcolepsy. An autoantigen is the target of an attack by autoantibodies. These antibodies attack a natural protein in the body rather than a protein from an infectious agent.

First they found that Trib2 was enriched in hypocretin-producing neurons in mice. Then they compared people who have narcolepsy with healthy controls. They also compared narcoleptics with people who have other disorders such as idiopathic hypersomnia and multiple sclerosis.

They found that the levels of Trib2-specific antibodies were much higher in people with narcolepsy. These levels of circulating autoantibodies against Trib2 were highest soon after narcolepsy symptoms appeared. They sharply decreased within two to three years.

Then the levels of Trib2-specific antibodies stabilized for up to 30 years. But these levels remained much higher than those of controls.

“These results indicate for the first time to our knowledge that Trib2 is an autoantigen in human narcolepsy,” the authors wrote. “Trib2-specific antibodies specifically target hypocretin neurons, ultimately leading to their disappearance and hypocretin deficiency.”

They cautioned that Trib2 may not be the only autoantigen in narcolepsy. Several autoantibodies may be involved.

But they are optimistic about treating narcolepsy with intravenous immunoglobulins soon after symptoms appear. In 2003 and 2004 they reported success at using IVIg treatment for people with narcolepsy. Last year they reported that hypocretin levels normalized in a narcolepsy patient after immunotherapy.

Read more about narcolepsy.

Image by Op.dan

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