People who are diagnosed with narcolepsy have problems with sleeping that are related to disturbances with their rapid eye movement sleep cycles (REM sleep). Narcolepsy typically is first diagnosed in children and young adults, and the initial diagnosis is often made between the ages of 7 and 25. The overall presentation of people with narcolepsy indicates that there are several core symptoms that most individuals with this disorder will express.
The Symptoms of Narcolepsy
There are four core symptoms that are often observed in narcolepsy:
- The first symptom is the experience of profound or excessive daytime sleepiness (most often abbreviated as EDS). People who have narcolepsy have issues with daytime sleepiness that go far beyond being tired, a lack of energy, feeling occasionally sleepy, or even fatigue as a result of some other disorder such as major depressive disorder. These individuals will often experience very short periods of involuntary sleep episodes where they fall asleep for a few seconds numerous times during the day. During these sleep episodes, people with narcolepsy will continue to engage in the behavior that they were performing before the onset of the sleep episode and are only aware that they fell asleep by a disruption in the activity.
For example, someone driving a car could have an involuntary sleep episode and go off the road, or someone writing a letter could have an involuntary sleep episode and later notice that several lines of the text in the letter are gibberish. These involuntary sleep episodes can obviously lead to potentially dangerous ramifications if they are not checked or the person’s activities are not restricted. - In contrast to EDS, many people who have narcolepsy often find themselves experiencing serious issues with sleeping during nighttime hours. The type of sleep difficulty occurring in these individuals can be quite variable depending on the person. The individual may have difficulty falling asleep, may experience waking up in the middle of night and not be able to go back to sleep, may engage in numerous episodes of sleep talking, may experience involuntary movements of the limbs that wake them up during sleep, or may have vivid and disturbing dreams that can lead to them acting out and being unable to go to back to sleep once the dream wakes them.
- Most everyone has had fleeting experiences when they are slowly drifting off to sleep and have the sensation that they cannot move. Individuals with narcolepsy experience these episodes of sleep paralysis quite frequently when they are falling asleep or when they are waking up. In addition, individuals with narcolepsy who experience numerous episodes of sleep paralysis may also experience hallucinations during these episodes. The types of hallucinations that these people experience are primarily visual hallucinations, but can be any type of hallucination. They can occur in one of two specific modes:
- Hypnagogic hallucinations occur when one is drifting off to sleep.
- Hypnopompic hallucinations occur as one is waking up.
- Perhaps the most glamorized symptoms of narcolepsy are episodes of cataplexy or drop attacks. Some individuals with narcolepsy experience a several loss of muscle tone and control when they are awake that leads to temporary weakness and sometimes the inability to control voluntary movements (cataplexy). In severe cases, individuals lose all muscle control and fall into a state of collapse, although they are totally conscious but unable to speak or even open their eyes. These severe episodes are known as drop attacks.
Often, individuals will experience weight gain in the early stages of the disorder. Narcolepsy is a rare disorder occurring in as few as one in 2,000 individuals. There are no known causes associated with narcolepsy although some genetic associations have been assessed and suggested. Nonetheless, the majority of individuals diagnosed with narcolepsy have no significant family history of the disorder. Some research has suggested that the levels of the neurotransmitter in the brain called hypocretin (also known as orexin) may be associated with the development of narcolepsy; however, this is never been definitively demonstrated.
Individuals diagnosed with narcolepsy are also prone to developing other psychological/psychiatric disorders, such as major depressive disorder, certain anxiety disorders (e.g., panic disorder), and other comorbid disorders that can make diagnosis and assessment complicated.
Identifying Individuals with Narcolepsy
Narcolepsy is considered to be a neurological condition and can only be diagnosed by a licensed physician who specializes in neurology. Typically, individuals with narcolepsy notice issues with daytime sleepiness and sleep attacks, and this brings them in for further assessment. Certainly, individuals who experience cataplexy would be considered for the diagnosis, although certain psychiatric/psychological disorders are noted to have similar types of presentations and only a full assessment could ascertain whether or not the individual had narcolepsy.
The diagnostic process to determine if an individual may have narcolepsy should be thorough and complex. It will typically include a full medical history, including a comprehensive physical examination as well as several laboratory tests to determine if an individual may have narcolepsy or some other condition.
These tests consist of:
- A polysomnogram is a test that records numerous physiological functions when the individual sleeps. Brainwave activity, heart rate, respiratory rate, nerve activity in the muscles, and issues with REM sleep are recorded to determine if the individual may have narcolepsy.
- Tests like multiple sleep latency tests are performed when the person is awake to ascertain whether the individual is experiencing sleep attacks during their waking hours.
- Some individuals with narcolepsy have low levels of hypocretin in their spinal fluid, and individuals can be given a spinal tap to determine their levels of hypocretin.
- Individuals can often be given a number of self-report measures, such as the Epworth Sleepiness Scale, that gather useful information regarding the individual’s sleeping habits, sleeping behaviors, and daytime sleepiness that can be useful in determining the diagnosis.
Narcolepsy and Substance Abuse
Research has suggested a connection between being diagnosed with a sleep disorder like narcolepsy and the potential to develop a co-occurring substance use disorder. However, there is little formal research that identifies narcolepsy as a risk factor for the development of a substance use disorder.
Some of the aspects associated with having narcolepsy may place individuals at a greater risk to develop impulsive actions. For instance, it has been established in at least in one study that individuals diagnosed with narcolepsy who also had cataplexy were significantly more impulsive than people who had narcolepsy but did not have cataplexy. This is not a direct link between having narcolepsy and an increased risk to develop a substance use disorder, but it does suggest that individuals with cataplexy may be at high risk for impulsive behaviors including substance abuse.
Individuals with sleep disorders are also at risk to develop substance use disorders in an attempt to induce sleep. Most often, the substances of abuse for individuals with sleep disorders are alcohol, narcotic medications such as drugs with strong sedative properties, and benzodiazepines. In addition, polysubstance abuse is common.
It’s Never Too Late to Get Help
Treatment Options for Narcolepsy
There are several medications that can be used to assist in the treatment of narcolepsy:
- Stimulants to decrease the daytime sleepiness include Provigil (modafinil), Nuvigil (armodafinil), Ritalin or Concerta (methylphenidate), and other amphetamines.
- Sedative medications can be used to assist with nighttime sleep.
- Xyrem (sodium oxybate) is a sedative that can be used to treat all aspects of narcolepsy; however, this is a controlled medication that has a high potential for abuse and can only be used with special permissions.
- Antidepressant medications can be effective in controlling daytime sleepiness and cataplexy. Antidepressants used for treating narcolepsy include tricyclic antidepressants such as Desipramine and more familiar selective serotonin reuptake inhibitors such as Prozac.
Behavioral interventions, such as stress management techniques, adherence to strict sleep schedules, and general lifestyle changes like avoiding caffeine, alcohol, and other drugs, can also assist in treatment.
Any person diagnosed with narcolepsy and a co-occurring substance use disorder needs both disorders treated concurrently. This treatment would consist of a multidisciplinary approach that includes:
- Physicians, including neurologists, psychiatrists, and addiction medicine physicians
- Therapists, such as psychiatrists, counselors, and social workers
- Support staff
- Family members and friends
- Any special therapists needed for the individual case, such as occupational therapists
Certain drugs used in the treatment of narcolepsy are considered to be prime candidates for abuse and addiction, such as methylphenidate (Ritalin) or sodium oxybate. These medications need to be used with care and under the strict supervision of a physician when treating an individual with narcolepsy and a co-occurring substance use disorder. Other medications, such as Provigil and antidepressants, have far less potential for the development of abuse; however, these should also be used judiciously in treating someone with narcolepsy and substance use disorder. The person’s use of their prescription medications should be strictly monitored, and every effort should be made to keep the person focused on treatment.