Narcolepsy often takes years to diagnose

YEARS. I WAS ACTUALLY ONE OF THE LUCKY ONES. IT TOOK JUST OVER THREE YEARS ON AVERAGE. A NARCOLEPSY DIAGNOSIS CAN TAKE 8 TO 15 YEARS. IT’S JUST VERY UNDER-RECOGNISED. YOU KNOW, IN PHYSICIANS IT CAN LOOK VERY DIFFERENT FOR EVERYONE. THERE ARE TWO TYPES OF NARCOLEPSY. RESEARCH SUGGESTS TYPE ONE. WHAT EMILY HAS. HAPPENS BY LACK OF HYPO CREATED A NEUROTRANSMITTER THAT HELPS SUSTAIN ALERTNESS AND REGULATE THE SLEEP WAKE CYCLE. TYPE ONE TYPE OF CREATINE DROPS SO LOW THAT YOU CAN DEVELOP CATAPLEXY. THE LOSS OF MUSCLE TONE. TYPE TWO IS WITHOUT CATAPLEXY AND THERE ARE MORE UNKNOWNS. CATAPLEXY, THE SYMPTOM THAT ULTIMATELY LED EMILY TO HER DIAGNOSIS. IT STARTED JUST IN MY FACE. IT CAN KIND OF VARY WITH PEOPLE. SO MY HEAD WOULD KIND OF DROP WHEN SOMEONE WOULD MAKE ME LAUGH. AND BY THE TIME I WAS 15, I WAS HAVING FULL BODY COLLAPSES. HER SYMPTOMS CAME AFTER A REALLY BAD CASE OF THE FLU WHEN SHE WAS 11. HER HYPERSCREEN REGION WAS LOW WHEN HER BODY’S IMMUNE SYSTEM WAS ATTACKED. IT STARTED WITH EXCESSIVE DAYTIME SLEEPINESS, AND SHE ALSO EXPERIENCED HALLUCINATIONS. I WOULD EVEN SAY TO MY MOM, LIKE, LOOK, THERE ARE TEAPOTS FLYING AT ME, OR I WOULD SEE SPIDERS OR, YOU KNOW, FEEL LIKE I WAS BEING ATTACKED WHEN IN REALITY NONE OF THAT WAS HAPPENING. THERE ARE OTHER SYMPTOMS ASSOCIATED WITH NARCOLEPSY LIKE SLEEP PARALYSIS AND DISRUPTED NIGHTTIME SLEEP. BUT SYMPTOMS AREN’T LIKE WHAT MANY MOVIES PORTRAY. BUT IT’S SOMETHING I HAVE ALL THE TIME. SO IT’S NOT SOMETHING THAT’S TRIGGERED. IT’S NOT SOMETHING THAT GOES AWAY OR THAT, YOU KNOW, YOU OVERCOME. IT’S SOMETHING YOU JUST LEARN TO, ACCOMMODATE AND DEAL WITH. TODAY, MOST NARCOLEPSY SLEEP SPECIALIST PUTS YOU THROUGH A SERIES OF SLEEP TEST. THERE’S ONE BEHIND EACH EAR THAT ACTUALLY HELPS TO MONITOR BRAIN. ONE AROUND EACH EYE, WHICH READ YOUR EYE MOVEMENT. SO WE CAN WE CAN TELL WHEN YOU’RE BLINKING, LOOKING AROUND DIFFERENT DIRECTIONS. IT HELPS TO SHOW REM SLEEP. NO CURE EXISTS FOR NARCOLEPSY. HOWEVER, THERE ARE MEDICATIONS THAT HELP PEOPLE LIKE EMILY LIVE A MORE NORMAL LIFE. THESE ARE MY MORNING MEDICATION I TAKE TO HELP REDUCE CATAPLEXY, MY MUSCLE WEAKNESS. AND I’M ALSO JUST STARTING ON SOME STIMULANTS FOR MY NEW JOB THAT HELP PROMOTE WAKEFULNESS. TODAY, EMILY STILL EXPERIENCES SYMPTOMS, BUT HER TREATMENT HELPS HER MANAGE. WAS ALMOST LIKE YOU GO YOUR WHOLE LIFE WITHOUT PRESCRIPTION GLASSES AND ALL OF A SUDDEN SOMEBODY GIVES YOU A PAIR OF GLASSES AND THE WORLD IS SO MUCH CLEARER. I’M KA

Narcolepsy is a disorder that brings sudden sleep. It affects about one in every 2,000 people but often goes undiagnosed or misdiagnosed."I was actually one of the lucky ones. It took just over three years," Emily Baker said.On average, a narcolepsy diagnosis can take eight to 15 years."It's just very under-recognized. It can look very different for everyone," Baker said.There are two major types of narcolepsy: type 1 and type 2.Research suggests type 1 – what Baker has – is the result of a lack of hypocretin, a neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle."Type one, hypocretin drops so low that you can develop cataplexy, the loss of muscle tone," said Jody Habecker, the clinical supervisor at the Sleep Center.Cataplexy is the symptom that ultimately led Baker to her diagnosis."It started just in my face. So, my head would kind of drop when someone would make me laugh. By the time I was 15, I was having full body collapses," she said.Her symptoms came after a bad case of the flu when she was 11. Her hypocretin was low and her body's immune system was attacked. It started with excessive daytime sleepiness, and she experienced hallucinations."I would even say to my mom, 'Look, there are teapots flying at me.' Or I would see spiders or feel like I was being attacked when in reality none of that was happening," Baker said.There are other symptoms associated with narcolepsy, including sleep paralysis and disrupted nighttime sleep. But symptoms aren't like what many movies portray."It's something I have all the time, so it's not something that's triggered. It's not something that goes away or that you overcome. It's something you just learn to accommodate and deal with," Baker said.To diagnose narcolepsy, sleep specialists put you through a series of sleep tests.No cure exists for narcolepsy. However, there are medications that help people like Baker live a more normal life."These are my morning medications I take to help reduce cataplexy, my muscle weakness. And I'm also just starting on some stimulants for my new job that help promote wakefulness," Baker said.Baker still experiences symptoms but her treatment helps her manage them."It was almost like you go your whole life without prescription glasses and all of a sudden somebody gives you a pair of glasses and the world is so much clearer," she said.If you or someone you know struggles with any symptom of narcolepsy, you're advised to consult a board-certified sleep specialist. You can also find more information about narcolepsy through the organization Project Sleep.

Narcolepsy is a disorder that brings sudden sleep. It affects about one in every 2,000 people but often goes undiagnosed or misdiagnosed.

"I was actually one of the lucky ones. It took just over three years," Emily Baker said.

On average, a narcolepsy diagnosis can take eight to 15 years.

"It's just very under-recognized. It can look very different for everyone," Baker said.

There are two major types of narcolepsy: type 1 and type 2.

Research suggests type 1 – what Baker has – is the result of a lack of hypocretin, a neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle.

"Type one, hypocretin drops so low that you can develop cataplexy, the loss of muscle tone," said Jody Habecker, the clinical supervisor at the Sleep Center.

Cataplexy is the symptom that ultimately led Baker to her diagnosis.

"It started just in my face. So, my head would kind of drop when someone would make me laugh. By the time I was 15, I was having full body collapses," she said.

Her symptoms came after a bad case of the flu when she was 11. Her hypocretin was low and her body's immune system was attacked. It started with excessive daytime sleepiness, and she experienced hallucinations.

"I would even say to my mom, 'Look, there are teapots flying at me.' Or I would see spiders or feel like I was being attacked when in reality none of that was happening," Baker said.

There are other symptoms associated with narcolepsy, including sleep paralysis and disrupted nighttime sleep. But symptoms aren't like what many movies portray.

"It's something I have all the time, so it's not something that's triggered. It's not something that goes away or that you overcome. It's something you just learn to accommodate and deal with," Baker said.

To diagnose narcolepsy, sleep specialists put you through a series of sleep tests.

No cure exists for narcolepsy. However, there are medications that help people like Baker live a more normal life.

"These are my morning medications I take to help reduce cataplexy, my muscle weakness. And I'm also just starting on some stimulants for my new job that help promote wakefulness," Baker said.

Baker still experiences symptoms but her treatment helps her manage them.

"It was almost like you go your whole life without prescription glasses and all of a sudden somebody gives you a pair of glasses and the world is so much clearer," she said.

If you or someone you know struggles with any symptom of narcolepsy, you're advised to consult a board-certified sleep specialist. You can also find more information about narcolepsy through the organization Project Sleep.

Narcolepsy often takes years to diagnose

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