Saskatoon

Doctor with narcolepsy describes struggle to navigate treatment after 'complete shock' of diagnosis

Before Brian Kim was diagnosed with narcolepsy, it was easy for him to wave away his constant tiredness and inability to concentrate.

Saskatoon man Brian Kim says he unknowingly had narcolepsy for 20 years

Narcolepsy can be incredibly disruptive. You can sleep 16 hours a day and then still need a nap. (Melissa Mathies)

Before Brian Kim was diagnosed with narcolepsy, it was easy for him to wave away his constant tiredness and inability to concentrate.

When his family lived in Edmonton, he was a big napper — but he was hitting his teen years and figured as a growing boy, he just needed sleep.

By the time he was in school training to become a pharmacist, later switching to medicine, feeling tired all the time was part and parcel with the demanding workload he and his fellow students were facing.

The weight gain was puzzling, however, to the doctor who now makes his home in Saskatoon.

Kim couldn't seem to shed the pounds, which didn't make sense, even accounting for a slowing metabolism as he aged.

Around then, doctors started suspecting it was sleep apnea.

Dr. Brian Kim said he had a terrible time navigating the system to get diagnosed and then to receive the right medications to treat narcolepsy. (Don Somers/CBC News)

It would have fit with his other symptoms, like nodding off whenever he was doing mundane activities like riding the bus, reading the newspaper or watching TV.

"I felt like my eyelids are just fluttering, and then it wants to go to sleep. So I pinch myself awake, I deep breathe, throw cold water on myself just to stay awake," Kim said in an interview on CBC Radio's Saskatoon Morning.

At times, he feared that his memory loss, concentration issues and anxiety were tied to dementia.

For years, Kim failed to meet the threshold for in-hospital sleep testing for sleep apnea. Finally, with his symptoms getting worse over time, he got his date with an overnight sleep test.

Then, a concrete diagnosis

"It turned out to be narcolepsy. And that was a complete shock," Kim said.

Kim said he simply thought he was a champion sleeper. He could be in a deep REM sleep, dreaming about Hawaii, within a minute of laying down to sleep.

It turns out, that's a symptom of narcolepsy.

For Kim, his brain doesn't follow the normal patterns of light sleep giving way to deep sleep and that means he doesn't naturally get a full night's rest.

His brain and body don't recharge while he sleeps.

You keep spinning your wheels, try to work harder and harder but relative to peers it just seems like you're doing so much work and you're not really getting anywhere.- Dr. Brian Kim on living with narcolepsy

He had wondered how other people were able to work, have families and relationships when he had struggled to do more than just work.

"You keep spinning your wheels, try to work harder and harder but relative to peers it just seems like you're doing so much work and you're not really getting anywhere," he said.

Medication brings relief

The only way he found the rest he needed was with a medication called sodium oxybate that combats the sleeping disorder.

Narcolepsy is caused by an infection or vaccination that triggers an autoimmune reaction, which in turn causes special neurons in the brain to attack themselves.

A specialist prescribed him with sodium oxybate pills but since they weren't readily available at pharmacies, he ended up having to go directly to the company that sells them.

Before Kim found a reduced cost drug program through the company, he was paying upwards of $6,000 per month for the medication.

The drug isn't covered by the provincial plan and the province rejected his request for exemption status, so he's had to pay out of pocket. 

He said it is covered in Alberta.

Still, there has been relief in all the struggle. Online forums have been a huge help for Kim.

"The more you know, it's going to help. It's also kind of comforting to know that the symptoms you're experiencing, however obscure they are, there may be other people with the same obscure traits," he said.

Now, he wants to let other people know about the symptoms, since narcolepsy can evade easy diagnosis.

One of the telltale symptoms that sets narcolepsy apart from other sleep disorders is the instant dreams.

"For people who are taking a nap, and if they're having a dream within 15 minutes because they know they didn't sleep that long, that's abnormal," Kim said.

To him, the fact that it took so long to get a diagnosis despite his medical expertise is a problem.

"Even though we went to medical school here, it wasn't really taught in-depth and especially the treatments weren't available. They were still being developed during that time," Kim said.

About the Author

Chelsea Laskowski is a web writer with CBC Saskatoon.

with files from CBC's Saskatoon Morning

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