Narcolepsy Research – Reaching for a Cure

Narcolepsy is a very serious, chronic sleep disorder that affects one in every two thousand people in the United States alone. Worldwide, the estimates of people living with the symptoms of narcolepsy reach over three million. Research on narcolepsy is among the top in all medical research fields, due to the seriousness of this condition. A better understanding of narcolepsy will ultimately lead to better understanding of other sleep disorders, which is why so much attention has been drawn towards narcolepsy research.

To research narcolepsy accurately, scientist not only do laboratory sleep studies, but they also depend on the information provided by the patients themselves. By keeping journals or recording episodes that occur, a patient can help researchers discover side effects of medications, episode time frames and so on. Unfortunately, this side of the research is needed, but since correct diagnosis is hard to determine, making it a truly priceless side of the research when it is attained.

Narcolepsy Basics

Narcolepsy is a chronic sleep disorder that has two different international classifications: narcolepsy without cataplexy and narcolepsy with cataplexy.

Narcolepsy has four major symptoms: Excessive Daytime Sleepiness (EDS), Sleep Paralysis, Hallucinations and cataplexy.  Although there are several secondary symptoms, these are the classic symptoms seen in most patients.

EDS is pretty straight forward.  Patients with narcolepsy experience a desire to sleep that is so strong it becomes an irresistible need.

Sleep Paralysis is occasionally experienced by a large number of people without narcolepsy.  Narcolepsy patients that have sleep paralysis as a symptom tend to experience it more often.  Sleep paralysis happens in the twilight between the sleep and wake cycles. The mind is not yet asleep but the body undergoes the paralysis that usually comes with REM sleep.  Often, the subject will also experience hallucinations.

Hallucinations are common for the narcoleptic. Hallucination research and narcolepsy research show that narcolepsy patients have a similar amount of hallucinations as patients suffering from schizophrenia but narcoleptic hallucinations tend to be more visual whereas schizophrenics have more auditory hallucinations.

Cataplexy is experienced by seventy percent of narcoleptics. Cataplexy is peculiar to narcolepsy and it is extremely rare to have cataplexy without narcolepsy.

Cataplexy is the sudden loss of control over muscle function. The affected muscles become lax and lose tone.  Cataplexy usually affects the face or neck, but can appear in any muscle group.  In an extreme instance, the entire body can collapse. The oddest and most frightening thing about a cataplexy attack is that the patient remains alert and awake the whole time. Cataplexy is triggered by strong emotions.

Data collected during research and narcolepsy patient information led scientists to give narcolepsy with cataplexy its own diagnosis.

Research on Narcolepsy

In the early 1970’s, Dr. William Dement founded the Stanford University Sleep Clinic, which was the first clinic in history to specialize in sleep disorder studies. This research center was the first to discover that narcolepsy-cataplexy was linked to a deficiency in hypocretin. This research has been proven in both animal subjects and in human subjects. The Stanford Center for Narcolepsy was created in the 1980’s as an extension of the Department of Psychiatry and Behavioral Sciences. Today, this facility treats hundreds of narcolepsy patients per year, with many patients freely participating in other sleep studies as well. There have been hundreds of articles written on narcolepsy that give credit to the name of this facility for its extensive research of narcolepsy.

Hypocretin Research and Narcolepsy-Cataplexy

The cause of narcolepsy-cataplexy, in ninety percent of cases, is accredited to a lack of hypocretin-1 and hypocretin-2. The cause of narcolepsy without cataplexy remains a mystery. These molecules that are created in the hypothalamus (hypo) have a resemblance to the gut hormone called secretin (cretin), thus named hypocretin. Of the many billions of cells in the brain, only ten to twenty thousand produce hypocretin. The hypothalamus is also responsible for a host of basic functions of the body. It controls hunger, sexual impulses, blood pressure and sleeping. Hypocretin-1 (not hypocretin-2) can be measured in the cerebrospinal fluid, but not by blood or tissue samples. To collect this cerebrospinal fluid, a spinal tap is necessary. Most patients (about 90%) with narcolepsy-cataplexy have a zero percent level of hypocretin-1.

When trying to control the symptoms of narcolepsy, many things need to be considered. First, the proper diagnosis of the condition is critical. Does this case have cataplexy? Hallucinations?  By asking these types of questions, a doctor can more accurately diagnose narcolepsy. Along with extensive questioning, there are tests and studies that can help in the diagnoses.

A nocturnal Polysomnogram is a test performed with electrodes placed on the patients scalp and measures the electrical activity in the brain and in the heart. This test takes place over night at a medical research facility designated by a physician.

A Multiple Sleep Latency Test (M.S.L.T.) is another test used to determine how long it takes a person to fall asleep during t day. The patient is asked to take five naps, each around two hours apart. Patients suffering with narcolepsy usually fall asleep very quickly and enter into R.E.M. sleep almost immediately.

Management of Narcolepsy

Narcolepsy and Research about its behavior has given doctors a few ideas into the treatment and prevention of its symptoms.  If a patient has mild enough symptoms, then a simple change in lifestyle may be all that is required.  More often, drug treatment in the form of stimulants and antidepressants becomes necessary.

Many times, the fact that there is no cure for this disease causes a feeling of helplessness, but with research awareness in narcolepsy, there is hope. With comprehensive management, a patient with narcolepsy can live a relatively normal life.

Narcolepsy Treatments

  • Lifestyle Changes
    • strict bedtimes
    • strategic daytime naps
    • avoid stimulants like coffee
    • make the people in your life aware of your disease
  • Drug Treatment for EDS
    • Stimulants
      • Amphetamines
      • Modafinil
      • Selegiline
  • Drugs for Cataplexy
    • Tricyclic Antidepressants
      • Imipramine
      • Protriptyline
    • Selective serotonin reuptake inhibitors
      • Prozac
      • Paxil
      • Zoloft
    • Sodium oxybate
      • Xyrem

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