Shannon

In the middle of the night Shannon Watson woke up to the feeling of someone lying on top of her. She couldn’t breathe; somebody was smothering her. She struggled to move but she failed miserably, her paralyzed limbs stiff on the bed. She could feel the presence of something evil in the room, and it scared her so much that her heart raced rapidly in her chest. Something in the back of her mind told her she was asleep, but her eyes were wide open. Everything was so real, so vivid. It was impossible that this was a dream.

After what felt like forever, the weight on her chest was finally lifted. The figure vanished, and Shannon could breathe and move once again. As she gasped for air, attempting to get her heart rate back to a normal pace, she couldn’t help but feel tainted by what had just happened. Confused as to whether or not she had been dreaming, she felt compelled to look around her room to be sure she was alone. The bizarre thing is, at 22-years-old she was more convinced of the possibility that there had actually been someone in the room because she felt more awake than she sometimes did during the day.

To most people, this is a frivolous event that can be chalked up to a really bad dream. In the past, people shared similar “dreams,” and called the phenomenon “old hag syndrome.” The name derived from the experience victims had when they would wake up paralyzed with the rest of their senses working, often feeling as though there was something evil on top of them or in the room causing the manifestations. The superstitious believed it was an old hag riding the chest of the victim, leading to the inability to breathe or move. However, since neither of these explanations are in fact accurate, the question remains – if Shannon was not dreaming, what was going on? In fact, Shannon was experiencing a hypnagogic hallucination and sleep paralysis as a result of narcolepsy, a rare sleep disorder.

Many people associate narcolepsy with being able to fall asleep anywhere at any time. However, contrary to popular belief, narcolepsy is not the humorous condition that we have seen in the movies. Narcolepsy is actually a quite complex, serious and sometimes dangerous condition that is accompanied by four possible symptoms. There is extreme daytime sleepiness, cataplexy, sleep paralysis, and hypnagogic phenomenon/hallucinations. For narcoleptics, extreme daytime sleepiness has a vast negative effect on their ability to live everyday life. However, cataplexy and hypnagogic hallucinations are the most severe symptoms, and are accompanied by the most fear.

Hypnagogic hallucinations are vivid dreams that project into the waking period. They can occur before you fall asleep, or after you wake up, and are more often than not nightmares or night terrors. During this time the body’s muscles are paralyzed, the heart rate severely increases and people usually feel as though they are falling and can hear voices or see images. Eighty per cent of narcoleptics experience this phenomenon and ordinarily find themselves having to check whether something truly happened or not. The clarity of such events can be extremely frightening and frustrating.

Cataplexy, which is experienced by 90 per cent of narcoleptics, is the paralysis of the muscles which happens when a person is completely awake. It is triggered by intense emotions such as laughter or anger and it leaves a person unable to move or speak, despite being completely conscious. The individual can be standing one minute and laying on the ground the next, unable to explain what is happening them.

Shannon began suffering from hypnagogic hallucinations when she was 17 years old and living in the small town of North Bay, Ont. The reccurring symptoms left her feeling exhausted during the day. Her family doctor sent her to the closest neurologist two hours away in Huntsville, who determined that the “episodes” she spoke of were mild seizures caused by epilepsy. She was put on medication, and although she did not feel many results, she continued to take the medication for five more years believing she was epileptic. What else was she supposed to believe? After all, she did not know what narcolepsy was, and the neurologist she saw who specialized in strokes assured her of this diagnosis.

Over the years her excessive daytime sleepiness, the most common symptom which occurs 100 per cent of the time in narcoleptics, progressed.  Life was becoming unmanageable and Shannon found it nearly impossible to stay awake while reading, a crucial aspect of her life as a criminology student at the University of Ottawa. At her daytime job she found herself fighting to stay awake, knowing that her eyes would begin to glaze over. Life became a daze, and staying awake was a battle she had to fight, often ending in defeat.

Finally, one night after an exceptionally bad hypnogagic hallucination, her mother, who had never truly accepted epilepsy as the answer to her daughter’s problems, convinced her to go to a sleep clinic. There she began her journey toward finally finding the answers to the questions she had asked for so long.

To undergo a sleep test, patients must go off their medication seven to 10 days prior to the examination. For the first test, the different sleep cycles experienced by the patient are recorded through a whole night lasting from 8 p.m. to 8 a.m. The next step is a daytime sleep test from 9 a.m. to 5 p.m. where the patient has a series of four twenty-minute naps every two hours. If the patient enters rapid eye movement sleep twice, a diagnoses of narcolepsy is made.

It takes a normal person 60 to 90 minutes to enter the REM sleep cycle. A narcoleptic such as Shannon can fall into it within seconds or minutes. During this cycle, the body’s muscles are paralyzed and the mind is dreaming. A narcoleptic’s REM cycle is disturbed, and can occur randomly at any time.

Diagnosis

People often mistake the REM stage as being a deep sleep because they believe that if a person is dreaming it means their quality of sleep must be good. This is actually a myth, as a high prevalence of dreams is what leaves a narcoleptic restless, to the point of severe exhaustion during the day. Even if they receive the recommended eight hours of sleep a night or more, when they are experiencing a “sleep attack” it feels as though they have not slept for 48 to 72 hours.

Why do these symptoms occur? According to Dr. Charles Samuels, medical director at the Centre For Sleep and Human Performance, narcolepsy is caused by a reduction in the neurotransmitter that controls people’s ability to stay awake. Samuels, who is also a clinical assistant professor in the University of Calgary’s faculty of medicine, says this happens due to the lack of the neuropeptide orexin in a narcoleptic’s body. Statistics currently state that one in 2000 North Americans are suffering from narcolepsy, however, due to the misdiagnoses of depression, mood disorders, or epilepsy, that statistic could weigh in at higher.

After learning of her new diagnosis and being put on two new medications in October 2010, Shannon felt frustrated that she had put up with the terrible side effects of her old medication. After receiving little relief for nearly five years, she also resented all the embarrassment she had to go through, being misunderstood and considered weak or tired. All of this new information has been overwhelming to her, but she was also grateful to finally pinpoint what she is suffering from.

Life is still difficult however, and she relies heavily on her medication to keep her awake during the day and keep her sleeping peacefully at night. For Shannon it is difficult to find the energy to exercise. She also commonly turns off her alarms in her sleep and finds it grueling to get out of bed in the morning. “I don’t like sleeping because it sucks you in and you can’t get out,” she says.

Julie

This past Valentine’s Day, Julie Flygare went over to her boyfriend’s house, excited to spend the evening together. She was feeling very smug about the scavenger hunt she had planned for him, so she began to laugh. She pulled from her pocket the first clue only to be shocked by the sudden freeze of her muscles. Her boyfriend Ben, familiar with her cataplexy, waited for it to pass. Julie laughed as she tried to hand him the clue again, only to find herself paralyzed once more. Ben took the clue and went off to find the next, as Julie stayed on the couch. He returned, and as she attempted to get up to follow him on his journey to the next clue, she collapsed once again.

Ben offered to wait until the cataplexy passed, but Julie urged him to continue. When he returned once more, the excitement got the best of her and her limbs lay limp and she was unable to speak. When it passed she began to cry from the discomfort, and even though she felt silly, she also cried for her inability to be there when her plan was executed.

Julie is a 27-year-old narcoleptic living in Washington, D.C. She began having symptoms of narcolepsy in 2007 while she was attending Boston College Law School. Her inability to stay focused in class and lack of motivation was beginning to shatter her dream of becoming a lawyer.

At the time she was an avid runner but during her runs, she began getting unexplained buckling of the knees, which caused her to collapse countless times. Aggravated, she turned to the Internet for answers and stumbled across the term cataplexy. When she read that this was associated with narcolepsy, she realized this could be the cause of her intense fatigue. Julie saw her diagnosis of narcolepsy as a blessing and a curse. She finished law school but came to the realization that 80 hour workweeks were just not plausible with her condition. She also stopped running, fearful that she would collapse and hurt herself.

While giving up her dream job and her running were difficult, Julie was able to find the good in narcolepsy when she got involved with the non-profit organization Wake Up Narcolepsy. She decided to train for the Boston Marathon in April 2010 for the organization to help raise money for a cure. She began a blog in the fall of 2009 called REM Runner, rediscovering her true passion for writing. There, she shared her experiences as a narcoleptic and a runner. Now she is in the works of writing a memoir about her sleep disorder, trying to use her own insight to erase the humour that is so often associated with narcolepsy. She said the response she got was overwhelming and she finally felt like others understood the powerful effect it was having on her life.

Julie says that prior to having narcolepsy she did not realize how much of a gift the body’s ability to walk and run is. She writes,“while running on the treadmill, I often watch my legs in the full-length gym mirrors as they bend and straighten endlessly, pounding on rubber, going nowhere… Before I had narcolepsy, I watched my legs and wondered whether they were chunky or normal, pale or tan, ugly or attractive. Now, I see them quite differently.”