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Ask the Doctor: What is the difference between narcolepsy and CFS?

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Q: What is the difference between narcolepsy and CFS?

A: Narcolepsy is a neurological condition where people have severe daytime sleepiness despite having had a reasonable amount of sleep. People with narcolepsy typically are asleep within less than eight minutes after lying down. Or they can fall asleep suddenly without intending to.

People with narcolepsy do not typically suffer from the kind of poor stamina we see with the fatigue that is typically for CFS/ME. Nor do narcoleptics typically become much worse for many hours or days following modest degrees of physical activity.

Persons with CFS/ME are almost always tired, but are not necessarily sleepy. They can be sleepy of course, but severe, profound daytime sleepiness despite a reasonable amount of sleep is not typical for most people who have CFS/ME.

When people with CFS/ME are sleepy during the day despite having slept it’s important that the physician consider several potential causes including sleep apnea, periodic leg movement disorder, the sleep distorting effects of chronic pain and psychological distress. Narcolepsy can co-occur with CFS/ME but that coincidence is not common.

One of the judgments physicians have to make with CFS/ME patients is whether to refer to a sleep specialist for an overnight sleep study or other evaluations.

Most people with narcolepsy suffer from a deficiency of a brain neurotransmitter called hypocretin. Hypocretin promotes wakefulness. The medicines Provigil (modafanil) and Nuvigil act to increase hypocretin. These help people with narcolepsy stay awake.

I and other CFS/ME specialists have found that a significant minority of people with CFS/ME feel more awake and mentally alert with Provigil or Nuvigil even though they do not have narcolepsy. Because these medicines work within hours, I often recommend a one or two day trial. However, Provigil and Nuvigil usually do not help physical stamina. Both are controlled substances.

Richard Podell, M.D., MPH
Clinical Professor Rutgers -Robert Wood Johnson Medical School
Summit, NJ 07901

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4 thoughts on “Ask the Doctor: What is the difference between narcolepsy and CFS?”

  1. mosheturner says:

    In your article you say: “The medicines Provigil (modafanil) and Nuvigil act to increase hypocretin. These help people with narcolepsy stay awake.” This is absolutely untrue.

    Neither Provigil nor Nuvigil (Provigil tweaked and rebranded to get around an expired patent) have anything at all to do with hypocretin.
    Their method of action is entirely different.

    The following is provided for your education:

    In a small area in our brain there is a population of about 100,000 specialized cells called orexin neurons which produce several neurotransmitters. Due to their having been identified and named almost simultaneously by separate teams in the US and Japan they are also known as hypocretin neurons, as each team named their discovery independently. For simplicity we will call them orexin neurons, and the peptide they primarily produce, orexin.

    When these orexin neurons are either completely or partially killed off by a misdirected immune response, orexin becomes either mostly or completely unavailable and therefore the signaling it does becomes drastically limited or stops completely. This causes much dysfunction in the nervous system. The most visible and recognizable physical manifestation of this dysfunction is a cluster of symptoms collectively known for the last 100 years as narcolepsy. The signature feature of narcolepsy is the dysregulation of a person’s sleep/wake cycles, a neurological function normally modulated by orexin; nighttime sleep is repeatedly interrupted and daytime wakefulness is punctuated by bouts of Excessive Daytime Sleepiness (EDS). Other symptoms of narcolepsy include sleep paralysis (an inability to move or speak), hypnagogic and hypnopompic
    hallucinations (upon entering or leaving sleep, respectively) and cataplexy, a sudden loss of muscle tone that leads to a state of temporary paralysis.

    Narcolepsy used to be known as a sleep disorder of psychological origin as scientists had not been able to find a physiological cause. That changed with the discovery of orexin in 1998. In recent years narcolepsy has been reclassified as neurological disorder, with type 1 narcolepsy (with cataplexy) occurring in 65-70% of patients. Most of the remaining sufferers fall into the category of Type 2 narcolepsy (without cataplexy).

    Orexin is a central player in nervous system function. It regulates or is involved in the regulation of almost all of the other neurotransmitters, and plays such a prominent role that it has been called “the conductor of the neural symphony”. Apart from regulating the sleep/wake cycle, orexin functions as a sensor and integrator of the internal and external environment and in response to changing conditions such as hunger, fear, cold, etc., orexin regulates food seeking, homeostasis, sex
    drive, thermogenesis, respiration, executive function and cognition, motivation, mood, circulatory and cardiac function, intestinal motility, olfactory perception and a host of other processes. Also, because orexin directly regulates other neurotransmitters, when orexin is not available the result is a series of cascading failures of those other systems that can cause a host of other symptoms that appear to be unrelated.

    Very few clinicians are knowledgeable about narcolepsy and are not able to understand the connections between these apparently unrelated symptoms. They often dismiss their patients as having psychological problems or simply lump them all under the catch-all diagnosis of dysautonomia. Accordingly, patients are often denied treatment for the very real symptoms of what is essentially an invisible illness.

    Even fewer medical people have the knowledge and skills to accurately dianose narcolepsy. Although modern internet communication has gone a long way towards improving diagnosis times, it is still not unusual for a patient to go 2-6 years before getting a diagnosis. Older narcoleptics will often tell you that they went without diagnosis for as long 30 or 40 years.

    Undiagnosed, narcolepsy slowly destroys the lives of those who are afflicted with it. This stealthy and silent condition affects every aspect of living. Often, by the time a diagnosis is obtained it is too late to rescue what has been lost; marriages are ruined, careers lost, family becomes
    estranged, friendships ended. Further, it is so difficult for other people to understand what it’s like to be a narcoleptic that even after diagnosis the condition’s effects continue to wreak havoc in a person’s life. It is not unusual for narcoleptics to end up poor, divorced and unemployed.

    Ask any narcoleptic what they want most and almost every time the answer you’ll get is “I want other people to understand what it’s like to be me.”

    While narcolepsy is essentially a stable condition, over time due to the ongoing dysregulation of many physical processes and the effect of a lifetime without restful sleep eventually takes it’s toll on a body and symptoms will worsen and new ones may arise. In particular, while the arrival of middle age often signals a slowing down for most people, the effect is amplified many times over in narcoleptics, whose bodies’ ability to regulate homeostasis is already impaired.

    There is currently no cure for narcolepsy. Most narcoleptics are treated with stimulant medications for EDS, but due to poor understanding by physicians narcoleptics asking for increased doses are seen as drug seeking and denied the medicines they need. Some of those with type 1 narcolepsy make use of anti-depressants, especially SNRI’s to help with cataplexy. Those who can tolerate the often serious physical and psychological side effects use sodium oxybate, a sleep consolidator and anti-cataplexy drug. However, many narcoleptics are denied the medicines they need by their insurance carriers, some have bad reactions to various medications, and others are uninsured or otherwise can’t afford the staggering costs of some of these medicines, which can cost upwards
    of $10,000 per month.

    Despite its crippling effects, the invisible nature of narcolepsy and its rarity of occurrence (1 of 2000 persons in the US are affected) have kept narcolepsy from being listed by the Social Security
    Administration in its “Blue Book” of recognized disabling conditions. When applying for disability benefits from SSA, a person with narcolepsy will be denied coverage and must appeal at least twice, ending up in a hearing before an administrative law judge who will make a determination based upon the testimony the applicant provides at the hearing and on the advice of a vocational expert also in attendance. This process can take upwards of three years, whereas a person with a much less critically disabling condition can sometimes apply and be granted benefits in a matter of months.

    Copyright 2015 by Moshe Turner
    This text may be reused as long as proper
    attribution is given.

  2. Heathersix says:

    Your article lacks accurate current medical knowledge, and presents out right inaccuracy concerning the cause and effects of narcolepsy and the meds available for its treatment. You perpetuate a problem that causes many suffering people to endure further unneeded suffering and misunderstanding. Please educate yourself further before publicizing such raging inaccuracies.
    Type 1 Narcoleptic in WV

  3. tphillips says:

    Why is there not a REPORT AS INAPPROPRIATE button for the articles? That option is available for the comment only? Seems to me its a simple oversite and should be quickly remedied by the site. The addition of an equal oportunity REPORT AS INAPPROPRIATE button would assist the site in becoming aware and regulating the information set forth. In this doctors writings several of the rules listed in the user agreement where broken.
    Making false statements.
    Sharing inaccurate information.
    Just to touch on two.
    First do no harm encompasses not just a physical caution but also covers a responsibility to stay educated and informed. Surely every Doctor can not be an expert in every field. However it is of great disservice to those who value a Doctors opinion to spew information that is wrong, outdated, or simply self created. A little research is an obligation to a Doctor before issuing a medical opinion. If your going to try to educate others on a medical topic it would be wise to educate self first. First do no harm! Just reading the comments would help the Doctor begin his journey to get informed and up to speed.
    Teresa P

  4. ldbrandon says:

    Why wouldn’t every sleep doc have their patients on nuvigil or provigil if that is the case?! They would! If that were the case.
    Love you Moshe!

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