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

Before Brian Kim was identified with narcolepsy, it was straightforward for him to wave away his fixed tiredness and lack of ability to focus.

When his household lived in Edmonton, he was a giant napper — however he was hitting his teen years and figured as a rising boy, he simply wanted sleep.

By the time he was in class coaching to turn out to be a pharmacist, later switching to medication, feeling drained on a regular basis was half and parcel with the demanding workload he and his fellow college students have been dealing with.

The weight achieve was puzzling, nevertheless, to the physician who now makes his dwelling in Saskatoon.

Kim could not appear to shed the kilos, which did not make sense, even accounting for a slowing metabolism as he aged.

Around then, docs began suspecting it was sleep apnea.

Dr. Brian Kim stated he had a horrible time navigating the system to get identified after which to obtain the precise drugs to deal with narcolepsy. (Don Somers/CBC News)

It would have match with his different signs, like nodding off every time he was doing mundane actions like using the bus, studying 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 stated in an interview on CBC Radio’s Saskatoon Morning.

At occasions, he feared that his reminiscence loss, focus points and nervousness have been tied to dementia.

For years, Kim failed to meet the edge for in-hospital sleep testing for sleep apnea. Finally, with his signs getting worse over time, he acquired his date with an in a single day sleep check.

Then, a concrete diagnosis

“It turned out to be narcolepsy. And that was a complete shock,” Kim stated.

Kim stated he merely thought he was a champion sleeper. He could possibly be in a deep REM sleep, dreaming about Hawaii, inside a minute of laying down to sleep.

It seems, that is a symptom of narcolepsy.

For Kim, his mind would not observe the conventional patterns of gentle sleep giving means to deep sleep and meaning he would not naturally get a full evening’s relaxation.

His mind and physique do not recharge whereas he sleeps.

You hold spinning your wheels, strive to work tougher and tougher however relative to friends it simply looks as if you are doing a lot work and also you’re not likely getting wherever.– Dr. Brian Kim on dwelling with narcolepsy

He had puzzled how different individuals have been ready to work, have households and relationships when he had struggled to do extra than simply 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 stated.

Medication brings aid

The solely means he discovered the remainder he wanted was with a drugs known as sodium oxybate that combats the sleeping dysfunction.

Narcolepsy is brought on by an an infection or vaccination that triggers an autoimmune response, which in flip causes particular neurons within the mind to assault themselves.

A specialist prescribed him with sodium oxybate drugs however since they weren’t available at pharmacies, he ended up having to go immediately to the corporate that sells them.

Before Kim discovered a lowered price drug program by way of the corporate, he was paying upwards of $6,000 per thirty days for the medicine.

The drug is not coated by the provincial plan and the province rejected his request for exemption standing, so he is had to pay out of pocket. 

He stated it’s coated in Alberta.

Still, there was aid in all of the struggle. Online boards have been an enormous assist 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 stated.

Now, he needs to let different individuals know concerning the signs, since narcolepsy can evade straightforward diagnosis.

One of the telltale signs that units narcolepsy other than different sleep problems is the moment desires.

“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 stated.

To him, the truth that it took so lengthy to get a diagnosis regardless of his medical experience is an issue.

“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 stated.

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