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Narcolepsy

By: Molly Bergman

What is Narcolepsy?

Narcolepsy is a chronic sleep disorder, which means that there is no cure, but there are treatment options to help make life easier for patients. Narcolepsy is most often associated with excessive daytime sleepiness. There are three types of Narcolepsy.

Type 1 Narcolepsy

Type 1 Narcolepsy

Type 1 Narcolepsy is classified as Narcolepsy with Cataplexy. Cataplexy is the weakness or sudden loss of voluntary muscle control that is triggered by very strong emotions. Patients with Type 1 Narcolepsy will have low levels of hypocretin which is a brain hormone.

Type 2 Narcolepsy

Type 2 Narcolepsy

Type 2 Narcolepsy is classified as Narcolepsy without Cataplexy. Patients with this type of Narcolepsy will have excessive daytime sleepiness, but do not get muscle weakness with strong emotions. These patients typically have less severe symptoms and have normal hypocretin levels.

Secondary Narcolepys

Secondary Narcolepsy

Secondary Narcolepsy is a type of Narcolepsy that results from an injury to the hypothalamus region of the brain that is deep and regulates sleep. These patients can experience Narcolepsy symptoms along with other neurological problems.

Causes Of Narcolepsy

Although the exact cause of Narcolepsy is unknown there are some things that have been found to be related to a Narcolepsy diagnosis.

Causes Of Narcolepsy

*Hypocretin is a brain hormone that is very important for regulating REM sleep and wakefullness

Brain Chemical Levels

Brain Chemical Levels

The brain chemical (hormone), hypocretin, is often extremely low in people who have Type 1 Narcolepsy, but not as low in people with Type 2. A person with Type 1 has lost the brain cells that produce hypocretin because the body's immune system mistakenly attacks these cells. It is believed that these cells are attacked based on a combination of genetic and environmental factors

Genetics

Genetics

Most Narcolepsy cases come with no family history but 10% of people with Narcolepsy have a close family member with Narcolepsy. Even though genetics can play a role in Narcolepsy the chances of a parent passing the disease onto their child is less than 1%. There is also a gene called HLA-DQB1 that can have variation called HLA-DQB1*06:02 that can increase the chances of someone developing Type 1 Narcolepsy.

Viruses

Viruses

It has recently been discovered that there is a possible association between the swine flu vaccination (a vaccination currently being distributed in Europe) and Narcolepsy. There is also a possible association between strep throat and Narcolepsy.

Signs & Symptoms

Signs & Symptoms

There are many signs & symptoms that are associated with Narcolepsy, but not every patient will have all of them. The only symptom that every Narcolepsy patient will have is Excessive Daytime Sleepiness.

Excessive Daytime Sleepiness

Excessive Daytime Sleepiness

Excessive Daytime Sleepiness (EDS) is a condition where no matter how much a person sleeps at night they will still feel tired throughout the day. EDS is typically the first Narcolepsy symptom to appear, and eveyone with Narcolepsy will have it. EDS can cause a person with Narcolepsy to fall asleep out of nowhere at random points throughout the day, but it typically happens when the peron is participating in something less engaging. These naps can last anywhere from a minute to a half and hour. Often times a person will feel refreshed upon waking from these short naps but will soon feel tired once again. Although everyone with Narcolepsy will have EDS, not everyone with EDS will have Narcolepsy.

Cataplexy

Cataplexy

Cataplexy is the sudden loss of muscle tone due to very strong emotions typically positve ones but negative emotions can also trigger the attacks. The loss of muscle tone can be anything from a few face muscles to the entire body. Cataplexy is only a symptom in people with Type 1 Narcolepsy. Cataplexy attacks can last anywhere from a few seconds to a few minutes. The amount of Cataplexy attacks varies from patient to patient with some people having one to two episodes a month to some people having several episodes per day. The difference between a seizure and a cataplexy episode is that during a Cataplexy attack the person remains fully concious the entire time. The Cataplexy attack will eventually resovles on its own and causes no harm to the body as long as the person is in a safe place when the attack occurs.

Sleep Paralysis

Sleep Paralysis

Sleep paralysis is something that some people with Narcolepsy will experience where they have a temporary "paralysis" when they fall asleep or wake up. This means that they can't move or speak for a couple minutes or seconds. People can be aware of this but not rememeber what happened during the episode. During the sleep stage of rapid eye movement (REM) dreams occur and sleep paralysis will occur naturally to keep the body from acting out dreams. People with Narcolepsy can experience sleep paralysis at the begining or end of sleep because Narcoleptics have more REM sleep than other people and often have it at the begining or end of the sleep cycle instead of in the middle.

Hallucinations

Hallucinations

Some people with Narcolepsy will experience hallucinations as they fall asleep or as they wake up. The hallucinations that occur when a person falls asleep are called hypnagogic halluncations. The hallucinations that occur when a person wakes up are called hyponopompic hallucinations. These hallucinations happen in people with Narcolepsy because they can start dreaming before they actually fall asleep or they continue to dream as they wake up. This causes people with Narcolepsy to experience hallucinations that can sometimes feel very real.

Insomnia

Insomnia

Although people with Narcolepsy are very sleepy during the day some people will have trouble falling asleep or staying asleep at night. There are many different reasons that nightime sleep can be disrupted at night, but a lot of people with Narcolepsy do experience some type of insomnia. It is one of the Narcolepsy symptoms that has not been researched significantly but it is a common symtom.

Automatic Behaviors

Automatic Behaviors

Some sleep episodes will only last a few seconds, which can cause the person to continue doing what they were doing without being consciously aware of what they were doing. This is considered an automatic behavior. This is more likely to occur when a person is doing something that is more of a habit like writing or typing. When the person wakes from the sleep episode they often do not remember what they were doing and typically did not do a good job.

How Its Diagnosed

Narcolepsy is often misdiagnosed as another sleep disorder because it is so rare. It is also hard to officially diagnose narcolepsy because the tests to fully diagnose are very expensive and take very special equipment. Pediatric Narcolepsy is also much harder to diagnose becuase it displays itself much differently than Narcolepsy in adults. There are three different tests to help diagnose Narcolepsy.

Polysomnogram (PSG) or Sleep Study

PSG

or

Sleep Study

This is a type of sleep study that is done over night and records the brain activity, muscle activity, breathing, and the movement of the eyes. It also can determine when an individual has REM sleep throughout the night. This is the most typical sleep study and will be done on anyone experience sleep problems. This sleep study can diagnose many other sleep disorders. This type of study can't diagnose Narcolepsy, but it can suggest that further testing is needed for Narcolepsy.

Multiple Sleep Latency Test (MSLT)

Multiple Sleep Latency Test

This type of sleep study is used more specifically for Narcolepsy. This test looks at daytime sleepiness by seeing how quickly a person falls asleep and if they fall into REM sleep during the day. This test is done the day after a PSG (a regular sleep study). During this test the patient will take 5 short naps throughout the day with the naps typically 2 hours apart from one another. If the person falls asleep an average of less than 8 minutes over the 5 naps then the person is considered to have excessive daytime sleepyness. A person with narcolepsy will also start REM sleep sooner than the average person. If a person falls into REM sleep within 15 minutes in 2/5 of the naps and in the overnight sleep study than the person most likely has Narcolepsy.

Spinal Tap

Spinal Tap

A Spinal Tap is only done in certain cases of Narcolepsy, or if there are extra questions. A Spinal Tap is very invasive and can be dangerous, so it is only done if abosolutely needed. Narcolepsy can typically be diagnosed from either the PSG or MSLT. The Spinal Tap is done to measure the hypocretin level in the fluid around the brain and spinal cord. The fluid is extracted using a Spinal Tap (also known as a lumbar puncture). If this procedure shows low levels of hypocretin then the diagnosis of Narcolepsy can be almost certain. This is not often used though because most often only people with Type 1 Narcolepsy will have low levels of hypocretin. This means that someone could have normal hypocretin levels and still have Narcolepsy.

Treatments

Although Narcolepsy is a chronic illness, meaning that there is no cure, there are still treatment options to help improve the quality of life for Narcolepsy patients. The main treatments are medications and lifestyle changes.

Medications

Medications

There are many different types of medications that can be used in order to help treat Narcolepsy symptoms. Sometimes a combination of medications can even be used in order to successfully control a patient's symtoms.

Modafinil

Modafinil

Modafinil is typically one of the first medications that is tried when Narcolepsy is diagnosed because it does not have a lot of side affects and is much less addictive than other medications. This medication is a stimulant for the central nervous system which helps a Narcolepsy patient deal with EDS.

Stimulants

Stimulants

Amphetamine-like stimulants are often used to treat Naroclepsy as well. Methlyphenidate is an example of this medication. These medications are very helpful in relieving EDS, but they can have more significant side effects and are more likely to be abused so they must be monitored more closely.

Antidepressants

Anti

Depressents

Antidepressants can not only help Narcolepsy patients with the mental toll that Narcolepsy can cause but they can also help treat some of the Narcolepsy symptoms. Certain antidepressants have also been shown to help with Cataplexy.

Lifestyle Changes

Lifestyle Changes

There are many different lifestyle changes that can help people with Narcolepsy experience a better quality of life.

  • Short Naps: short scheduled naps throughout the day during a patients sleepiest times
  • Regular Sleep Schedule: going to bed and waking up at the same time every day even on weekends
  • Avoid Caffeine & Alcohol: both of these substances can affect a person with Narcolepsy especially when dranken close to bedtime
  • Exercise: exercising for 20 minutes several hours before bed can help sleep quality and can help with the weight gain that often comes with Narcolepsy

Life Impacts

There are a lot of ways that Narcolepsy impacts a person's life. Narcolepsy can make it hard for people to do simple things, such as concentrate during a task. Narcolepsy can also be a contributing factor to other medical conditions that develop. Overall, Narcolepsy can impact a persons life in many ways.

ADA Disability

ADA Disability

Narcolepsy is considered a disability by the ADA. This means that an employer (or school) must make accommodations that are reasonable. This can include things like extra breaks for naps, different schedules, different work environment, etc. The ADA does not however recognize narcolepsy as a condition that would make someone eligible for disability benefits.

Other Medical Conditions

Other Medical Conditions

People with narcolepsy are more likely to have other medical and phychiatric conditions due to the nature of the illness and the impacts that it has on someone's life. Pediatric patients often times have even more conditions such as mental development delays, decreased school performance, and behavior and social difficulties.

Other Burdens

Other Burdens

One of the hardest things for Narcolepsy patients is that is takes so long to be diagnosed, so patients have to suffer with the symptoms longer before treatment. Although people with Narcolepsy can drive, it is a case by case thing because some people are simply too tired to drive and could risk sleep attacks behind the wheel. The medications to treat Narcolepsy are also very expensive and can be a large burden on patients that do not have good insurance.

Current Research Being Conducted

Although there is not a lot of research being done around Narcolepsy right now due to how rare it is, there is still some research currently being conducted.

Biochemicals

Biochemicals

A group of researchers is starting to create studies to help clarify more information on the HLA and non-HLA genes. It is also belived that certain envrionmental factors can cause Narcolepsy. Different wakefulness compounds are also being researched to help come up with more medications as treatment options.

Immune System

Immune System

It is believed that people with Narcolepsy have abnormalities in their immune system. Strep throat and certain types of the flu have also been found to be triggers for some Narcolepsy patients. Research is also being conducted to find out why the immune system is trying to destroy the hypocretin neurons.

Sleep Biology

Sleep Biology

Studies into the basic biology of sleep are being done to help learn more about sleep itself to hopefully discover more on Narcolepsy. Researching the basics can help scientists understand the more complex aspects of the illness.

Survey Results

Survey Results

I conducted a survey to see how much my community knew about Narcolepsy and the different aspects of the illness. I have included the results and some of the most helpful quotes from the responses. This survey really helped open my eyes about how little people know about Narcolepsy.

Based on your current knowledge how would you describe Narcolepsy

  • "Difficulty with normal sleep pattern - sleepiness in the day, sleepless nights"
  • "Falling asleep uncontrollably"
  • "Brain disorder causing hyper-drowsiness/inability to stay awake during waking hours"
  • "Falling asleep out of the blue sometimes as a response to being scared or anxious or something else"
  • "Going into REM immediately"
  • "A condition in which someone falls asleep without knowing what is happening"
  • "Not being able to sleep well at night so it effects your daytime alertness"
  • "When you fall asleep instantly, without any notice or preparation"
  • "Falling asleep doing everyday tasks"
  • "Issues with the brain that causes people to pass out/have siezures regularly"

Have you ever known someone with Narcolepsy, how does it affect their life?

  • "They have times when they are super duper tired and just like fall asleep super quickly in unique positons"
  • "Before she got treatment she would fall asleep in class and have trouble driving, she often wakes up at weird hours of the night"
  • "She tends to fall asleep more when she's stressed out or feeling anxious over things"
  • "They are embarrased to go out in public"
  • "They have to have someone in the car with them when driving"

On average how long do you think it takes for someone to be diagnoses with Narcolepsy after developing symptoms?

On average it takes 7-10 years

What are the treatment options for Narcolepsy?

Medication & Lifestyle Changes

Do you think Narcolepsy is classified as a disability under the ADA?

Yes, it is

Do you think a person with Narcolepsy can drive?

Yes they can if they are stable

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