Part 3 in a six-part series
When Kim Jackson has one of her least severe narcolepsy attacks, she might slump over, suddenly asleep.
When she has one of her more severe ones, she falls down, suddenly totally paralyzed.
Jackson, 42, suffers from narcolepsy — a sleep disorder that causes abnormal sleep/wake cycles, causing those with it to have unpredictable sleep attacks throughout the day.
While the condition can be inherited, it is also commonly a symptom of a brain injury.
Jackson’s form of narcolepsy includes attacks of cataplexy; a sudden paralysis of some or all of the muscles.
While people suffering from cataplexy may seem unresponsive — and there have been reported cases where sufferers have ended up in a morgue — they can often hear and feel what’s going on around them.
“What happens is your mind is awake but you can’t move, can’t talk. You might be able to move your eyes, but even that is a struggle,” Jackson said.
One of Jackson’s recent attacks took place in her doctor’s waiting room at the Waterford Hospital. Someone noticed her slumped over in a chair and a code blue — signifying someone in cardiac arrest — was called, sending doctors and paramedics running, she said.
Jackson said while she was unable to let them know she was fine, she could hear and feel everything they were doing, including deep pain stimulation tactics like rubbing her sternum with their knuckles and pinching her nail beds in an effort to jolt her awake.
A more recent cataplexy attack happened while Jackson was in hospital suffering from a kidney infection, she told The Telegram.
“I had an attack while a nurse was there, hanging an IV bag. I kind of slumped over on top of her, and she got me back on the bed,” Jackson said.
“She called out for a couple of girls and took my vitals, and I heard her say, ‘She’s faking this.’
“As they were leaving, I heard another nurse say, ‘What a performance. Let’s roll out the red carpet for her.’”
Jackson complained to a supervisor about what she had heard, and the next day one of the nurses came to her room to apologize, saying she had researched cataplexy online.
“I said to her, ‘Do me a favour: tell five people what cataplexy is,’” Jackson said, adding she hopes to advocate for more awareness of the condition. She has gone so far as to contact administrative staff at MUN’s school of nursing, asking them to consider expanding their teaching on narcolepsy and cataplexy when they next review the curriculum.
“I want all medical people to know what it is. I want everyone to know what it is,” she said.
Debbie Curtis had her first cataplexy attack in 2002, while she was working in St. John’s as a bank teller.
“I was on my lunch break in the staff room and I was sitting there, reading some of the posters on the wall, when the next thing I knew, my arms kind of fell to the side,” Curtis explained.
“I thought, what the heck? I started feeling my head falling to the side and the first thing I thought of was a stroke. There was a phone next to me so I called (co-workers) and said, ‘I don’t feel very well.’ The next thing I knew, I was being taken by ambulance to the hospital.”
Curtis’s attacks became so frequent, she even had one at her wedding reception. She was eventually forced to give up her job, and admits she spent a number of months in bed, since she only felt well lying down.
Like Jackson, Curtis says her brain is active during attacks, even if her body is unresponsive.
“I can tell someone is touching me, but (the deep pain tactics) don’t hurt, if that makes any sense,” she explained.
“It’s like being trapped in your own body. When I come back out of it, I’m really disoriented, really out of it, like I’m in a drunken stupor.”
Curtis spent time bouncing back and forth between her family doctor and neurologists, and was diagnosed with everything from seizures to a psychosomatic illness, she said.
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She was eventually referred to Dr. Hugh Mirolo, the province’s only neuropsychiatrist, who diagnosed her with cataplexy as a symptom of narcolepsy.
While cataplexy might seem like a strange and unique condition, it’s quite common, Mirolo said. While sleep paralysis — like experiencing the old hag — happens when a person is lying down, cataplexy can happen at any moment and attacks last longer, possibly hours. There isn’t anything that can be done to bring someone out of a cataplexy attack, Mirolo said — they come out of it themselves, often going directly into a deep sleep.
A person can suffer from either a partial or full-body cataplexy attack.
“I compare it to a marionette,” Mirolo explained. “With total cataplexy, if you cut all the strings, the marionette goes down. If you cut some of the strings, an arm will go down, or an arm and the neck, or half the body, like a stroke.
“With the typical cataplexy attack, the patient is busy doing whatever they’re doing, and all of the muscles suddenly unplug from the brain and down they go, like a tree. A full-blown cataplexy syndrome can be as disabling as epilepsy. A number of people are unable to leave their place unaccompanied, cannot drive, cannot pick up a baby, cannot walk on a trail that is risky for falling, and so on.”
Like other symptoms of brain injury, people can suffer from cataplexy symptoms and not even know it, particularly if they experience what Mirolo calls aborted cataplexy attacks.
“They might suddenly feel like their brain is falling off the drawer, or their knees might buckle for a second,” he said. “It’s not uncommon for them to stumble or trip on something when there is nothing to trip on.”
Other symptoms include a sensation of heavy or numb limbs, a sudden loss of balance, or suddenly dropping objects.
When treated, a person who’s used to having full-blown cataplexy attacks can limit them to the aborted type. A person who has only ever had the aborted type can easily start having full-blown attacks all of a sudden, and without warning, Mirolo said.
“It’s only the tip of the iceberg. It takes no time for that to turn into full-blown cataplexy.”
Mirolo said cataplexy doesn’t exist without a primary diagnosis of narcolepsy — something a high percentage of people have, particularly in this province, where the dark season is long. Treatment can involve medication, phototherapy with a specialized lamp that replicates sunlight, proper sleep hygiene measures, and activities that stimulate the brain and use the hands at the same time, like painting, embroidery or chess.
Mirolo’s not surprised that general health practitioners often don’t recognize cataplexy, and assume a person having an attack is in cardiac arrest.
“As doctors, we see through our training eyes; the eyes we develop in training,” he said.
“There are doctors that are excellent in what they do — don’t get me wrong — but a number of times, if you’re not in (neuropsychiatry), you will not be able to see. The tendency in medicine is to go for things that are palpable and that you can demonstrate, but a number of things in medicine are non-existent. A number of things are mainly clinical diagnoses.
“If I have a patient with seizures but I cannot see it on an EEG, I will attempt some sort of treatment of those seizures. Most neurologists will tell you that. That’s what you do. If the seizures are ruining a patient’s life, it doesn’t matter what you see on an EEG, particularly if you have witnessed a seizure. You’re not just going to let the patient fall.”
Wednesday: Autism is a brain injury, doctor says