Narcolepsy dominates lives of patients

2014-06-14T13:21:00Z Narcolepsy dominates lives of patientsCarrie Rodovich
June 14, 2014 1:21 pm  • 

During the fall of 2004, Patrick O’Neill began having episodes where he would get weak and dizzy, and his vision would blur.

At the time, he was a college student, getting straight A’s in classes like honors organic chemistry.

At first, doctors thought his problems were stress related, but the incidents became more frequent and his episodes became cataplexy, where his muscles would weaken and he would collapse.

It wasn’t until the sixth or seventh doctor he saw that he got his diagnosis: narcolepsy.

Now 29 and an AP Chemistry and Integrated Chemistry-Physics teacher at Munster High School, narcolepsy dominates O’Neill’s daily life. 

He can’t drive, and even walking around town can be dangerous, which makes him highly dependent on others.

“Without medication, I would have as many as 300 cataplexy attacks in a day, and couldn’t even walk around on my own,” he says. “With medication, I tend to have them only at night, and usually only when there’s some sort of added stress, like I stayed up late working the night before.”

O’Neill is one of less than a fraction of one percent of the general public who suffer from narcolepsy, doctors say.

Narcolepsy is caused when the patients’ sleep cycle is fragmented, and they get REM sleep when they’re awake, says Dr. Baqhar Mohideen, medical director for the Porter Regional Hospital Center for Sleep Medicine and a diplomat of the American Board of Sleep Medicine. 

In addition to the attacks of cataplexy, narcoleptics also have sudden attacks of excessive daytime sleepiness. They also might have sleep paralysis or have attacks of hallucinations upon wakening, says Dr. Andrea DeLeo, the medical director of the Stroke Program at St. Catherine’s Hospital, the medical director of rehab at St. Catherine’s Hospital and the co-director of the Deep Brain Stimulation Program at Munster Community Hospital. 

The fragmented REM sleep seems to be caused by low levels of hypocretin, also called orexin, in the hypothalamus, although the cause for the low levels are still unclear.

Narcoleptics, including O’Neill, can experience cataplexy, where the REM sleep occurs while they’re awake and they fall to the ground. 

The attacks are generally brought on by periods of extreme emotion, including extreme happiness or anger. 

“A lot of people mistake cataplexy for passing out, but it’s not. Consciousness is maintained, but there is a sudden loss of muscle tone that can lead to falling down, or they might droop a head or drop a jaw, or their arms might suddenly drop,” says Dr. Kevin Fagen, diplomate of the American Academy of Sleep Medicine and director of the sleep lab at Ingall Health System. “It can happen in response to startling stimuli, anything from hearing about a death to a funny joke can bring on the attack.”

For O’Neill, cataplexy is terrifying, and occurs quite frequently. 

“Cataplexy is a terrible feeling. I feel dizzy, detached from my body and a bit queasy. My vision blurs and sound is slightly distorted. My muscles weaken and then I am filled with the dread of realizing I am about to collapse with no strength or ability to protect myself,” he says. “The total loss of control over your body is something you cannot adjust to. Or at the very least, I’ve failed to adjust to it even after thousands of episodes over about 10 years.” 

Although O’Neill says he rarely loses his temper, for a period of his life he “lost laughter” because he feared the cataplexy attacks. 

“Imagine this (cataplexy attack) is the feeling you have instead of laughter, every time something strikes you as funny. It doesn’t take long to lose all sense of joy and humor,” he says. “With medication, I’ve recovered the ability to feel emotions to some extent, though I still struggle to feel safe and free when it comes to laughing. One of the hardest aspects of narcolepsy is losing that sense of joy we have when we laugh. I’ve tried hard to find it again. On rare occasions I have, and I treasure every one.”

Doctors say the best way to be diagnosed with narcolepsy is to have spinal fluid tested for the hypocretin, or to go through a sleep study and a nap study in a sleep lab. 

Dr. DeLeo says disease equally affects men and women, and the onset of the disease is gradual. Typically, patients are diagnosed between the ages of 20 and 40. 

Treatments is generally done through prescribing stimulants. There is also some lifestyle modification involved, doctors say.

“Once you know you have it, you have to not put yourself in certain situations. You don’t want to be an air traffic controller, for example,” Dr. Fagen says. “You also want to schedule naps during the day at strategic intervals, and practice proper sleep hygiene.”

O’Neill says the side effects of the medication are strong, but is definitely preferable to the cataplexy attacks.

“Narcolepsy makes a lot of aspects of  my life hard, but it doesn’t make things impossible,” he says. “I push myself to be the best person I can be and try not to make any excuses for myself.”

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