Coping with Narcolepsy

OCTOBER 19, 200512:00 AM ET

ALLISON AUBREY

Diagnosing patients with milder forms of narcolepsy has become more straightforward in recent years, since scientists have pinned down the precise brain molecule linked to the disorder. The challenge now is helping patient’s figure out the best way to manage the condition.

RENEE MONTAGNE, host:This is MORNING EDITION from NPR News. I'm Renee Montagne.

STEVE INSKEEP, host:And I'm Steve Inskeep.

We begin our personal health report this morning with a report on a mild form of narcolepsy. Scientists have identified the precise brain molecule linked to that disorder, and that has made the problem more straightforward to diagnose. The challenge now is helping patients figure out the best way to manage the condition. NPR's Allison Aubrey reports.

ALLISON AUBREY reporting:Nadine Hosten has narcolepsy. Her body craves little bits of sleep during the day and has a hard time shutting off at night. Looking back, she says her peculiar sleep habits started in high school. She has only the foggiest memory of her early-morning geometry class.

Ms. NADINE HOSTEN (Narcolepsy Patient): I literally slept through 90 percent of the year. I sat in the back of the room and kind of learned to hold my head down and angle my pencil in such a way that you really couldn't tell how out of it I was.

AUBREY: She aced her class, she says, by borrowing notes and studying at night when she wasn't so tired. Twenty years later, morning is still a struggle as she makes the morning drive from her home in Bowie, Maryland, to a hospital in the District of Columbia, where she works as a physical therapist. The effects of her stimulant medication are starting to kick in. A half-hour ago, Nadine's energy level was noticeably lower. She seemed oblivious to the sound of her barking dog as she shuffled to reach the pill jars in her cabinet.

(Soundbite cabinet door shutting; dog barking)

Ms. HOSTEN: Here are my medications. This is my Concerta that I take, and then I think I told you I take another one, strictly to handle the side effects of that, and that's my propanolol or Inderal.

AUBREY: Hosten was diagnosed with narcolepsy five years ago, the same year scientists discovered that the disorder is caused by a deficiency in a brain chemical called hypocretin. Dr. David Gross of the Washington Hospital Center diagnosed her.

Dr. DAVID GROSS (Washington Hospital Center): The brain has over a trillion cells. There's only about 25,000 that make this hypocretin, so it's just a tiny percentage of the cells of the brain.

AUBREY: But without these hypocretin cells, the body's sleep switch gets out of whack.

Dr. GROSS: When you have enough hypocretin, the switch stays locked in the right spot so you're in the right state of consciousness when you're supposed to be. And without it, the switch gets sloppy and starts moving around by itself.

AUBREY: By the time Dr. Gross diagnosed Hosten, her situation had become dire. With two young children and a busy career wearing her down, Hosten had begun dozing off at the wheel as she drove home from work.

Ms. HOSTEN: I would see the red light, and my eyes are shutting, and I'm doing the one-eyed Jack thing because I can only keep one eye open, and I would have my foot on the brake and I would roll and tap the car in front of me because I would have fallen asleep prior to fully stopping.

AUBREY: Her guess was that perhaps she had chronic fatigue syndrome or low blood sugar. Never did she think narcolepsy. But when she wound up in David Gross' sleep clinic for a daylong evaluation, one of the first things he noticed was that she could doze off for a nap on command, and instead of going into restful sleep, she'd fall immediately into REM sleep, something that normally takes an hour or so. Hosten says during this time of diagnosis, she was feeling increasingly fatigued.

Ms. HOSTEN: This uncontrollable urge to just shut down.

AUBREY: Gross put her on a drug called Modafinal that had just been approved for narcolepsy, but she couldn't tolerate the heart palpitations that came as a side effect. So he switched her to a Ritalinlike stimulant called Concerta.

Ms. HOSTEN: For me the medicine is not an extra. It's not like I feel high. It's not like I feel energetic. It brings me to normal, maybe.

AUBREY: The rest of managing the disorder, Hosten says, comes down to lifestyle choices. She avoids alcohol, she goes to sleep at the same time every night, and she tries to exercise. She knows better than to push herself when she's feeling exhausted. So this means her house is less than tidy, and dinner is often something that can be made quickly.

Curing narcolepsy will require a major breakthrough, says Juliette Faraco of the Stanford University Narcolepsy Center.

Ms. JULIETTE FARACO (Stanford University Narcolepsy Center): Scientists are going to need to determine a way to put hypocretin cells back into the brain and deliver it where it's needed by the brain. And that's frontier medicine right now.

AUBREY: Nadine Hosten says she'll be the first to volunteer if scientists are ever ready to test a drug that could make her brain function normally.

Allison Aubrey, NPR News, Washington.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR’s programming is the audio.

Three Tips for Better Sleep: Overcome your Insomnia

Improve your sleep with evidence based treatment for Insomnia (CBT-I)

Posted Oct 15, 2013

“When I woke up this morning my girlfriend asked me, “Did you sleep good? I said “No, I made a few mistakes.” - Steven WrightTechniques that manage worry can improve sleep

First, you are not alone. A shocking50-70 million Americans have sleep difficulties(link is external)of some kind. But not to worry, there are some very practical strategies that you can use if you would like to try change your behaviors to improve your sleep. As Steven Wright joked, we all make mistakes in our sleep related behaviors. This post will review some of the tools used inCognitive Behavioral Therapy for Insomnia (CBT-I)(link is external)to get started towards a more restful night tonight!

1. Retrain your mind and body for sleep.

If you can’t sleep, then get up and do something instead oflyingthere worrying. It’s the worry that gets you, not the lack of sleep. - Dale Carnegie

When we lie sleeplessly in bed ourbrainbegins to associate bed withsleeplessness. Stimulus controltherapyworks to retrain your brain how to sleep. There are some guidelines you can follow on your own that can really help in this area. First, avoid using your bed for anything (ok almost anything!) except sleep. Secondly, if you are in bed awake for more than 20 minutes, get up and sit in a chair outside of thesleepingarea and participate in a non-activating activity in low light. For example reading, crafting, or implementing a relaxation exercises. Try not to use anything with a screen.

Sleep Hygiene can also contribute to training your body to sleep. One healthy step towards this is to develop a nighttime ritual. Having a cup of tea (decaffeinated), taking a warm shower, stretching, changing into specific pajamas before bed can all help send messages to your brain that it is time to go to sleep.

2. Manage yourstressand worry.

Man should forget hisangerbefore he lies down to sleep. - Mahatma Gandhi

Stress andanxietycan create substantial barriers to sleep. Some tools that you can use during your day and near bedtime to reduce worry and stress arebreathing exercises(link is external)andmuscle relaxation exercises(link is external). Both of these tools can help to reduce stress and induce relaxation which will help you prepare your body and mind to rest.

Worry time: Pick a scheduled time to worry and write your worries down. If you think of something during the rest of the day, tell yourself you will worry about that during your “worry time.” If you must, take a minute to write down your worry at that time.

Lastly, don’t look at the clock while sleeping! This can lead to increased pressure and worry about sleeping. I have had clients that go so far as to put the clock in another part of the room or put tape over the screen to avoid temptation.

3. Daily Activities and next steps

A well spent day brings happy sleep - Leonardo da Vinci

What you do during the day does affect the quality of your sleep. There is plenty of evidence that supports the fact thatexercising during the day can help you sleep better. Also, napping during the day can negatively affect your nighttime sleep.

One of the main ideas ofCognitive Behavioral TherapyforInsomniais the idea of “sleep efficiency” which basically means the proportion of time that you are actually asleep while in bed. In CBT-I you work with a therapist to help you create a “sleep debt” (a need to fall asleep) by allowing yourself less time (opportunity) to be in bed. This results in being tired while in bed and thus, eventually sleeping more.

Hopefully some of these tips will be helpful for you. Certainly a consultation with a clinician who has expertise in CBT-I can help you guide yourself to a night of restful sleep.

SweetDreams!

How To Beat Sleep Apnea? Cut It Out (Surgically)

MARCH 14, 201112:01 AM ET

PATTI NEIGHMOND

Sleep apnea sufferers may wake up dozens of times an hour or more each night.

iStockphoto.com

At 32, it just didn't make sense that Daniel Sheiner was exhausted literally from the moment he woke up. "It didn't get any better over the course of the day, and I knew that was not normal," Sheiner says.

Sheiner is a software designer and programmer. His job suffered as a result of his fatigue.

"I would miss conversations," Sheiner says. "I would ask a question that had already been answered."

Sheiner suspected he had sleep apnea because it ran in his family. But he was not overweight, which is the biggest risk factor for the disorder — some 60 percent to 90 percent of patients diagnosed with apnea have a body mass index, or BMI, over 28.

A sleep study confirmed Sheiner had one of the worst cases of apnea his doctors had ever seen. After trying a number of different treatments, his doctors finally tried a surgery using robots to treat his stubborn apnea — with positive results.

'Gasping For Breath'

According to Erica Thaler, an ear, nose and throat surgeon at the Hospital of the University of Pennsylvania, Sheiner's sleep study found that he woke up about 112 times every hour. That meant Sheiner stopped breathing for at least 10 seconds about two times every minute.

Doctors are treating sleep apnea with a type of robotic surgery typically used to remove cancerous tumors at the back of the throat.Courtesy of MayoClinic.org

Sleep apnea is a chronic and common sleep disorder. People with this condition stop breathing while sleeping.

Like Sheiner, they often find themselves suddenly and repeatedly gasping for breath during the night. Their airway is clogged, sometimes because their tonsils and tonsilar tissue in the back of their throat are enlarged.

This was exactly the case for Sheiner.

"Daniel's obstruction was both at the level of the soft palate and at the back of the tongue," Thaler says. "He had very large tonsils, but his tonsil tissue was also enlarged in the palate area and also at the back of his tongue."

Sheiner was put on a nighttime breathing machine. In bed he wore a face mask, which was connected to a tube that was connected to a device that pumped air into his nose and mouth.

The Continuous Positive Airway Pressure machine, or CPAP, as it is often referred to, works for about half of all patients who try it. It can be cumbersome, Thaler says.

But Sheiner was extremely committed to trying it. In fact, he tried a number of different types of machines, but none of them worked.

Handing Surgery Off To Robots

So Thaler suggested a type of robotic surgery currently used to remove cancerous tumors at the back of the throat. Thaler was starting to perform it on sleep apnea patients, to remove tonsils and excess tissue.

"What the robot allows you to do is get into a small, confined space without using hands," Thaler says. "Human hands are huge, and robot hands are tiny, and yet they can do exactly the same thing if you control them remotely."

So, about a year ago, Thaler performed surgery on Sheiner, removing both his tonsils and excess tissue. Sheiner is one of only about a half-dozen patients to have this robotic surgery for apnea.

After surgery, Sheiner says, "it was a whole new life." He had energy, an ability to focus and get things done. "I find myself solving problems much more quickly and more confidently."

He's exercising at the gym three times a week, lifting weights. He is also starting to experiment with recipes and cooking, something he had absolutely no energy or interest in doing before the surgery.

Surgery Not For Everyone

The surgery Sheiner had isn't right for everyone. Rashmi N. Aurora is a sleep specialist at Mount Sinai School of Medicine in New York. She is also chairwoman of the Standards of Practice Committee of theAmerican Academy of Sleep Medicine.

"I wouldn't send a middle-age obese man for surgery as their first option," Aurora says. "I would say let's lose the weight; let's use CPAP and see a nutritionist; let's avoid the alcohol and let's see how you do." The apnea can probably be taken care of with these noninvasive techniques, she says, and invasive surgery can be avoided.

But when she sees a young, thin person with severe apnea, Aurora says, surgery might be the answer.

"The upper airway starts with the nose and mouth and runs down to the vocal chords, so there's a lot of room for obstruction to occur," Aurora says. Some patients may require surgery to remove the uvula or the tonsils or excess tissue, or all of them, she says. Then, there's surgery to remove blockage in the nasal passage.

Oftentimes, Aurora says, patients need a series of surgeries to completely treat apnea. And even then, success rates aren't high; they're effective only 20 to 30 percent of the time.

The only surgery proved effective more than 90 percent of the time is a significant and highly invasive surgery. Maxillomandibular advancement, or MMA, involves literally slicing the jaw in half and moving it forward in order to widen the patient's airway.

For patients with recessed chins, small jaws and airways narrowed by facial structure, this might be the surgery for them. But it can take nearly a year to recover, and many patients opt not to have it.

The "new" CPAP machines are more sophisticated, Aurora says. They're less cumbersome, less noisy and can actually "sense" the magnitude of blockage and adjust air pressure being blown into the nose or mouth, she says. Noninvasive measures are always the first lines of defense, she says.

Lack Of Sleep, Genes Can Get Sleepwalkers Up And About

AUGUST 27, 20123:23 AM ET

MICHELLE TRUDEAU

Though scientists have identified sleepwalking triggers, the condition is still a bit of a mystery.

Victoria Alexandrova/iStockphoto.com

Miranda Kelly, a 14-year-old from Sykesville, Md., says she's been sleepwalking since she was 6 or 7. The first time, she says, "I woke up on the couch on a school day. And I'd gone to bed in my bed."

Since that first episode, Kelly now sleepwalks every couple of months. "I wake up in weird places, randomly. I have once woken up in the kitchen, and on the floor of the bathroom wrapped in my sheet," she says.

AlonAvidan, director of the University of California, Los Angeles, Sleep Disorder Center, is a neurologist who studies sleepwalking. "We do not understand the reason why people sleepwalk," he says.

But at the basic level, sleepwalking is the brain's inability to fully wake up. "When you place electrodes on the sleeping brain, what you will see is a person going into very slow [brain wave] sleep," he says.

Slow brain waves are characteristic of a state called non-rapid eye movement (non-REM) sleep. It's the first stage of sleep as a person drifts off, and Avidan says this is when sleepwalking typically occurs. "As they experience the behavior, the sleepwalking, you'll start seeing the brain partially awakened, while the patient is still asleep," he says.

Though a sleepwalker's brain might be partially awake, most sleepwalkers have no memory of their episodes, and that's a key feature, saysRussell Rosenberg, chairman of the National Sleep Foundation and CEO of Neural Trials Research in Atlanta. Some research suggests that the sleepwalker's frontal cortex — the brain's center for decision-making, judgment and short-term memory — is not fully online during sleepwalking.