Narcolepsy Tips

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Narc Alert!

No! I do not mean the Narcotic Squad is coming to get you; I am alerting you to a Sleep Disorder called Narcolepsy. Narcolepsy is a neurological problem that causes a person to fall asleep abruptly during the daytime. Abrupt spells of sleep called “Sleep Attacks,” can occur while driving, eating, laughing, talking, or on the job and in severe cases can be very dangerous.

Narcolepsy is diagnosed by having the following test: PSG (Polysomnogram), MSLT (Multiple Sleep Latency Test), and Hypocretin. PSG will look for any other underline problems such as Apnea or REM. MSLT requires a daytime study with naps every two hours during the day to look for sudden onset of REM sleep (Rapid Eye Movement).
Hypocretin tests the Cerebrospinal fluid, and according to the Stanford School of Medicine “90% of Narcolepsy patients have low levels of Hypocretin.”

There is no cure for Narcolepsy but research is ongoing, and medications teamed with lifestyle changes are the best offer available to Narcolepsy victims, for now.

   
What diseases can cause narcolepsy?

Diseases That Can Cause Narcolepsy

In rare cases, people with a disease that affects the brainstem will get also get narcolepsy. The specific disease causes damage to the brain system from areas in which dream sleep originates. This results in narcolepsy.

Diseases that may cause narcolepsy, according to the American Academy of Sleep Medicine, include the following:

- Multiple Sclerosis (MS) - a chronic, unpredictable neurological disease that affects the central nervous system

- Myotonic Dystrophy - MYOTONIC DYSTROPHY is an inherited disorder in which the muscles contract but have decreasing power to relax. With this condition, the muscles also become weak and waste away

- Parkinson's Disease (PD) - Parkinson's disease is a motor system disorder. The four primary symptoms of PD are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; slowness of movement; and impaired balance and coordination. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks.

- Sarcoidosis - involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas because they look like grains of sugar or sand. They are very small and can be seen only with a microscope. These tiny granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works.

   
What are some other narcolepsy symptoms that can occur?

Other Narcolepsy Symptoms

People with narcolepsy experience excessive daytime sleepiness and abnormal REM sleep. However, the following narcolepsy symptoms vary from case to case.

Sleep paralysis: occurs in about 25 percent of individuals with narcolepsy. The typical episode is described as feeling paralyzed for a few seconds at sleep onset or upon awakening from sleep. There is no loss of consciousness.

Hypnagogic hallucinations: vivid hallucinations that typically occur at sleep onset, and they occur in about 30 percent of narcoleptic individuals. These experiences usually last for a few minutes and may be associated with sleep paralysis.

Automatic behavior - familiar, routine or boring tasks performed without full awareness or later memory of them.

And also:
- Double vision
- Balance disturbances
- Personality changes
- Getting involved in frequent rear-end automobile accidents

   
What are some unknown facts about narcolepsy?

Little Known Facts About Narcolepsy

The following are some little known facts about narcolepsy:

- Narcolepsy is often gone undiagnosed for up to 10 years since a person's first symptoms.
- Approximately 50 percent of adults with narcolepsy report narcolepsy symptoms beginning in their teenage years. For most patients, narcolepsy begins between the ages of 15 and 30 years. About 6 percent of sufferers are children less than 10 years old.
- Narcolepsy may lead to impairment of social and academic performance in otherwise intellectually normal children.
- Narcolepsy is a treatable condition. Experts say a a combination of treatments that includes medications, a regular nighttime sleep schedule, and scheduled naps during the day is most effective.

   
Is there a device that can help me stay awake when I drive?

Doze Alert System Helps Keep Narcoleptics Safe on Road

According to the National Highway Traffic Safety Administration, 37 percent of American drivers admit to falling asleep at the wheel at some point since receiving a license. What's more, 8 percent of them admitted doing so in the past six months and 60 percent admitted to falling asleep while driving on an interstate-type highway with posted speeds of 55 MPH or higher.

Driver fatigue is responsible for an estimated 100,000 motor vehicle accidents and 1,500 deaths each year.

While we all must take precautions against driving while drowsy, people with narcolepsy usually get behind the wheel feeling alert and sleepiness overtakes them suddenly and severely.

There are products on the market to help narcoleptics and everyone who worries about falling asleep by driving. They are systems that help you wake up when you doze off while driving. Here's how one system, called Doze Alert, works:

If you start to nod off while you are driving and your head falls forward, the product buzzes loudly in your ear and help you avoid the danger of falling asleep at the wheel. It is a lightweight device that fits behind your ear comfortably, even if you wear glasses.

The alert runs on a tiny battery and contains a switch that allows the wearer to set the head angle that activates it. The device comes in a box that has a sticky patch on the bottom so it can be attached to the dashboard for easy access.

For about $40, Americans can buy the Doze Alert system, which the company claims saves thousands of lives.

   
How is narcolepsy diagnosed?

Diagnosing Narcolepsy

Narcolepsy can be confirmed or ruled out by a polysomnography test given under carefully controlled conditions. Brain waves, eye movements, muscle activity and other key physiological functions are monitored during sleep. In normal individuals there is an orderly transition from wakefulness to non-rapid eye movement (non-REM) sleep, followed by rapid eye movement (REM) sleep, the state in which dreaming occurs. Patients with narcolepsy, however, go directly from wakefulness to REM sleep. The paralytic and hallucinatory symptoms of narcolepsy are due to this rapid transition.

   
How can I keep safe at the wheel if I'm drowsy?

Keeping Safe at the Wheel

If you have narcolepsy or another sleeping disorder or suspect that you might and you worry about keeping safe while you drive, check out these symptoms of fatigue while driving:

- Eyes closing or going out of focus
- Persistent yawning
- Irritability, restlessness, and impatience
- Wandering or disconnected thoughts
- Inability to remember driving the last few miles
- Drifting between lanes or onto shoulder
- Abnormal speed, tailgating, or failure to obey traffic signs
- Back tension, burning eyes, shallow breathing or inattentiveness

Safety Tips:
- Maintain a regular sleep schedule that allows adequate rest.
- When the signs of fatigue begin to show, get off the road. Take a short nap in a well-lit area. Do not simply stop on the side of the road.
- Avoid driving between 12am and 6am
- When planning long trips:
- Share driving responsibilities with a companion
- Begin the trip early in the day
- Keep the temperature cool in the car
- Stop every 100 miles or 2 hours to get out of the car and walk around; exercise helps to combat fatigue
- Stop for light meals and snacks
- Drive with your head up, shoulders back and legs flexed at about a 45 degree angle

   
Can I pass narcolepsy on to my children?

Multiple Sleep Latency Test

The Multiple Sleep Latency Test isolates you from outside factors that can affect your ability to fall asleep. These factors, according to the American Academy of Sleep Medicine, include such things as temperature, light, noise, and activity. Other factors that can still affect the results of the study include anxiety, tension, depression, age, caffeine, drugs and medications and the amount of sleep prior to the study.

Here's how the MSLT test for narcolepsy works:

- You will be screened for drugs before you take the test
- You should keep a sleep diary documenting signs of narcolepsy for a week before the test
- Smoking should be stopped at least 30 minutes before the test
- You will not be allowed to have any drinks with caffeine during the study. You will also not be able to see any bright sunlight. Outside factors that might affect your sleep are limited. Your room is made dark and quiet. The room temperature is set at your personal comfort level.
- The daytime nap study is taken right after you do an overnight sleep study. For the MSLT to be accurate, you should have had a total sleep time of at least six hours during the overnight sleep study.
- The MSLT consists of five nap opportunities with breaks lasting for two hours in between them.
- Sensors are placed on your head, face, and chin. They send tiny electrical signals to a computer. The signals show when you are asleep and awake during the study.
- You will not feel any pain during the MSLT. A low-light video camera allows a technologist to see you from a nearby room. You will be asked to move your eyes, clench your teeth and turn your head. This will make sure that the sensors are working.
- For each nap trial, you are asked to lie quietly in bed and try to go to sleep. Then the lights are turned off. Once the lights are out, the test will measure how long it takes you to fall asleep. Your vital signs will continue to be measured as you sleep.
- After sleeping for 15 minutes, you will be awakened. Each trial will end if you do not fall asleep within 20 minutes. Between nap trials, you will have to stay out of bed and occupy yourself so that you remain awake. A light lunch should be provided right after the end of the second (noon) trial.
- After the last nap trial, you will test the sensors again, and then they will be removed. This will complete the study, and you will be free to go.

   
Is a narcoleptic handicapped?

Is A Narcoleptic Handicapped?

A handicapped individual is described as a person who (a) has a physical or mental impairment which substantially limits one or more of such person's major life activities, (b) has a record of such impairment, or (c) is regarded as having such an impairment. Because Narcolepsy is a sleep disorder involving excessive daily sleepiness, cataplexy, hallucinations, sleep paralysis and disrupted nighttime sleep - conditions that affect an employee's ability to perform on the job - it should qualify as a physical handicap under the law. Without reasonable accommodations, a Narcoleptic may have great difficulty meeting job performance objectives.

   
Should I keep my narcolepsy a secret from my employer?

Tell Your Employer

Without reasonable accommodations, a narcoleptic may have great difficulty meeting job performance objectives. Since an employer cannot provide reasonable accommodation if narcolepsy is kept secret, it is important for narcoleptics to reveal their limitations and needs, if any. Disclosures and any specific requests should be in writing and directed to the appropriate personnel. With a reasonable employer, the reward should be an enjoyable and productive work environment.

   
Do narcoleptics have problems getting insurance?

Dealing With Insurance Problems

Some people have been denied life and/or vehicle insurance because of Narcolepsy. When applying, narcoleptics should provide honest and full disclosures, adding positive statements like :
(a) My symptoms have been well controlled with medication since diagnosis in [insert year].
(b) I have not lost any time from work because of narcolepsy.
(c) I have not been hospitalized because of narcolepsy.
(d) I have had no accidents because of narcolepsy.

The severity of symptoms should be described and explained as thoroughly and accurately as possible. The name of the Doctor, along with his current address and telephone number, should be provided when requested

   
What are the main symptoms of narcolepsy?

Symptoms of Narcolepsy

The four (4) main symptoms of narcolepsy are:
1. Excessive daytime sleepiness (EDS): uncontrollable sleepiness and/or sleep attacks
2. Cataplexy: a rapidly occurring loss of voluntary muscle tone, usually triggered by strong emotions
3. Hypnagogic hallucinations: intense, vivid, sometimes terrifying experiences which occur at the beginning or end of a sleep period
4. Sleep paralysis: an awareness of one's inability to move despite the desire to do so, occurring as a person is falling asleep or waking up

   
What is a good medication to take for narcolepsy?

Medicines for Narcolepsy

There is no cure for narcolepsy, but narcolepsy medications can help. Some doctors provide drugs that act as stimulants and are standard treatments for narcolepsy.

Unfortunately, some of these medications have undesirable side effects including headache, irritability, nervousness, and gastrointestinal complaints. Nocturnal sleep may be impaired, which in turn can decrease sleep time.

   
How does one test for narcolepsy?

Testing for Narcolepsy

Sleep doctors rely on a test called a Multiple Sleep Latency Test (MSLT), which is a nap study, to diagnose narcoleptics.

The MSLT is used to see how quickly one falls asleep in quiet situations during the day. Most people with narcolepsy fall asleep in an average of less than 5 minutes during the MSLT nap trials. Some take longer than 5 minutes to fall asleep. Yet, there are also people without narcolepsy who fall asleep in less than 5 minutes.

The study is based on the idea that you should fall asleep in a shorter amount of time as your feeling of sleepiness increases. The MSLT charts your brain waves and heartbeat and records your eye and chin movements. The study also measures how quickly and how often you enter the rapid-eye-movement (REM) stage of sleep. Results of the nap study are routinely used to detect other sleep disorders as well.

   
What can I do at home to help my narcolepsy?

Narcolepsy Treatment

Narcolepsy treatment doesn't always have to happen in a sleep clinic. If you have narcolepsy, here is what the experts say about what you can do to self-treat your sleep problem at home.

- Sleep hygiene, a term the experts use for your sleep schedule, is very important. Many people have an improvement in their symptoms if they maintain a regular sleep schedule, (usually 7 to 8 hours of sleep per night).

- Scheduled naps during the day help. One study suggested that the optimal sleep pattern is a combination of scheduled nighttime sleep (such as from 11 pm to 7:30 am) and two 15-minute naps).

- Avoiding heavy meals and alcohol (as it can interfere with sleep).

- Restrict driving when they feel sleepy.

   
What is narcolepsy?

About Narcolepsy

Narcolepsy is a sleep disorder that causes overwhelming and severe daytime sleepiness. People with narcolepsy fall asleep at inappropriate times and places. These daytime sleep attacks may occur with or without warning, and can occur repeatedly in a single day. Here are some statistics:

-Narcolepsy affects one in 2,000 Americans in the United States.

-Narcolepsy is typically characterized by the following four symptoms with varying frequencies: Excessive daytime sleepiness, Cataplexy (sudden and temporary loss of muscle tone often triggered by emotions such as laughter), Hallucinations. and Sleep paralysis (paralysis that occurs most often upon falling asleep or waking up; the person is unable to move for a few minutes).

   
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