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Disability Benefits for Narcolepsy and Cataplexy

Social Security Disability Lawyers: Riverside, North San Diego & Orange Counties

What is Narcolepsy?

The National Institutes of Health (NIH) defines narcolepsy as “a chronic neurological disorder that affects the brain's ability to control sleep-wake cycles.”  Affected individuals, even after a good night's sleep, can feel excessively sleepy throughout the day. In fact, they may suddenly fall asleep without warning, even while performing activities such as driving, walking, talking, and eating. Accordingly, narcolepsy can be very disrupting and can cause significant interference with virtually all other spheres of life, including social activities and disability from work.     

Episodes of narcolepsy are sometimes referred to as “sleep attacks”, where a sudden feeling of extreme sleepiness comes on quickly and without warning.   

It can be accompanied by sudden muscle weakness (“cataplexy”) that causes a person to be unable to move.  Emotions such as anger, crying, fear, and laughter can “trigger” an attack of cataplexy. “Sleep paralysis” is a form of cataplexy and may occur either just before falling asleep or after waking up. Some people have vivid dreams or hallucinations.

Less than 150,000 Americans are diagnosed with narcolepsy every year, which makes it a rare disease. It can occur in both sexes and can start at any age, but most often before the age of 25. It can last a lifetime. The exact cause of narcolepsy is not known, and there is no cure.   

 What we Know About Narcolepsy

Although the cause of narcolepsy is not known, in patients who have combined narcolepsy and cataplexy, the level of hypocretin, which is a chemical in the brain that regulates REM (rapid eye-movement) sleep, is usually quite elevated. (However, in narcolepsy without cataplexy, hypocretin levels are usually normal.)

Narcolepsy may be associated with autoimmune disorders, familial and genetic factors may be present, and less often a brain injury can trigger the onset of narcolepsy.

The Diagnosis of Narcolepsy

The diagnosis of narcolepsy is frequently established by a neurologist based on performing a medical history and physical examination. In most cases, the symptoms and medical presentation of narcolepsy makes the diagnosis obvious. However, there are several confirmatory tests that can be done, if they are required.

They include a Polysomnogram (PSG or sleep study).  The PSG is an overnight recording of brain and muscle activity, breathing, and eye movements.  A PSG can help reveal whether REM sleep occurs early in the sleep cycle and if an individual's symptoms result from another condition such as sleep apnea.

Multiple sleep latency test (MSLT).  The MSLT assesses daytime sleepiness by measuring how quickly a person falls asleep and whether they enter REM sleep.  On the day after the PSG, an individual is asked to take five short naps separated by two hours over the course of a day.  If an individual falls asleep in less than 8 minutes on average over the five naps, this indicates excessive daytime sleepiness.  However, individuals with narcolepsy also have REM sleep start abnormally quickly.  If REM sleep happens within 15 minutes at least two times out of the five naps and the sleep study the night before, this is likely an abnormality caused by narcolepsy.

Occasionally, a doctor may wish to measure the level of hypocretin in the fluid that surrounds the brain and spinal cord.  To perform this test, a doctor will withdraw a sample of the cerebrospinal fluid using a lumbar puncture (also called a spinal tap) and measure the level of hypocretin-1. In the absence of other serious medical conditions, low hypocretin-1 levels almost certainly indicate narcolepsy. However, a spinal tap to withdraw cerebrospinal fluid for testing is obviously an invasive test, and in most patients, other than for research purposes, it's usually not performed. [Ref: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet]

Treatment

Modafinil.  The initial line of treatment is usually a central nervous system stimulant such as modafinil.  Modafinil is usually prescribed first because it is less addictive and has fewer side effects than older stimulants.  For most people these drugs are generally effective at reducing daytime drowsiness and improving alertness.

Amphetamine-like stimulants. In cases where modafinil is not effective, doctors may prescribe amphetamine-like stimulants such as methylphenidate to alleviate EDS.  However, these medications must be carefully monitored because they can have such side effects as irritability and nervousness, shakiness, disturbances in heart rhythm, and nighttime sleep disruption.  In addition, health care professionals should be careful when prescribing these drugs and people should be careful using them because the potential for abuse is high with any amphetamine.

Antidepressants.  Two classes of antidepressant drugs have proven effective in controlling cataplexy in many individuals: tricyclics (including imipramine, desipramine, clomipramine, and protriptyline) and selective serotonin and noradrenergic reuptake inhibitors (including venlafaxine, fluoxetine, and atomoxetine).  In general, antidepressants produce fewer adverse effects than amphetamines. However, troublesome side effects still occur in some individuals, including impotence, high blood pressure, and heart rhythm irregularities.

Sodium oxybate. Sodium oxybate (also known as gamma hydroxybutyrate or GHB) has been approved by the U.S. Food and Drug Administration to treat cataplexy and excessive daytime sleepiness in individuals with narcolepsy. It is a strong sedative that must be taken twice a night. Due to safety concerns associated with the use of this drug, the distribution of sodium oxybate is tightly restricted. 

Patients are also encouraged to adopt certain lifestyle changes, including taking short naps, avoiding caffeine or alcohol before bedtime, avoiding smoking, exercising regularly, and practicing relaxation techniques. Id.

While these treatments may be effective in some patients, often they are not. They are not curative, and these medications can have significant side effects of their own.

Disability Benefits

For an award of long term disability (LTD) benefits, ether under the Social Security (SSDI) program and/or an employer-based group disability plan (ERISA), it's usually not the diagnosis of narcolepsy itself that is in question, but documentation as to how it affects a person's ability to work and how disabling it is.

Therefore, your doctor must carefully document not only the diagnosis of narcolepsy and the symptoms that it is causing, but also how those symptoms impair your ability to function on a day to day basis. Your medical records should  document the duration, frequency, and intensity of daytime sleepiness, any precipitating and aggravating factors, the type, dosage, effectiveness, and side effects of any medication, treatments, other than medications, for the relief of daytime drowsiness, any measures you use or have used to relieve daytime drowsiness, and any other factors concerning your functional limitations due to daytime drowsiness.

It is useful for you to document your symptoms related to narcolepsy by maintaining a diary, which describes the frequency, duration, and intensity of your daytime drowsiness, and any other symptoms (e.g., cataplexy) that you have. Bringing that to the doctor's office for your office visits will help the doctor enter this information into your medical records.

Your daytime drowsiness may prevent you from even performing sedentary work (e.g., a desk job) or staying “on task” in a competitive work environment. If there are family members or friends that can provide “lay witness” corroboration of your narcolepsy and how it affects you, that may be helpful.

You may also be having side effects from the medications you take for your narcolepsy. Those side effects can also impair your ability to work.

At Law Med, we understand the medical and legal issues involved in applying for SSDI and/or ERISA benefits and can help you qualify for those benefits.   

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