Review: MTV True Life I Have Narcolepsy Shines Bright Light on Narcolepsy and Cataplexy

by julie on October 19, 2011


I turned on my TV and cataplexy starred back at me.  I smiled.

The program information for MTV’s True Life “I Have Narcolepsy” described:

Two young women, Julie and Katie, discuss in detail the challenges they have had to endure after being diagnosed with cases of Narcolepsy, which causes extreme sleepiness, and Cataplexy, which causes sudden muscle failure.

Cataplexy in the spotlight? Way to go, MTV!

Cataplexy is a little-known but major symptom of narcolepsy. I lived with it for two years without knowing what was wrong.  Once I found the word cataplexy – my diagnosis of narcolepsy came soon thereafter. But enough about me….

Plot Summary:
MTV True Life: I Have Narcolepsy featured two amazing young women with narcolepsy:

Rem Runner Julie Flygare with MTV True Life I have Narcolepsy’s Julie

First, we meet Julie, age 16, who began experiencing symptoms of narcolepsy only 4 months prior. She hasn’t explored treatment options yet. Her loss of muscle tone with emotions like humor (cataplexy) is getting worse and her mother worries about Julie’s safety.

What if she falls against a glass door or onto something sharp? On a few cataplexy falls, Julie hurts herself landing in unnatural positions. The danger is becoming very real.

Despite the worsening of her symptoms, Julie is skeptical of the medications available. She fears, rightfully so, that there will be major side-effects.

REM Runner Julie Flygare with MTV True Life I Have Narcolepsy’s Robby and Katy

Next, we meet Katy, age 25, who has lived with narcolepsy with cataplexy since her teen years.  She seems to manage her symptoms fairly well with medications – but her boyfriend Robby sees the negative ways these drugs impact Katy’s life.

Katy decides to try going off of her medications cold turkey to show him the alternative.  Katy’s sleepiness and cataplexy dramatically worsens. She becomes nonfunctional quickly and Robby gets frustrated with her.

I won’t give the rest away – you really MUST WATCH THIS SHOW!

REM Runner’s Review:
It was difficult for me to watch Julie and Katy’s episodes of cataplexy.  Tears streamed down my face.  My stomach clenched with nausea.  It was like watching a car wreck you can’t stop.  Cataplexy has been a part of my life for six years – I should be “used to it,” but it’s still gut-wrenching. You must see it to believe it.

There are treatment options for narcolepsy that can help.  The True Life episode doesn’t highlight any individuals managing their symptoms effectively. This is okay – given the nature of television – but it isn’t the whole picture.

Like most things, narcolepsy is not a one-size-fits-all diagnosis.  Our community is filled with stories of individuals overcoming adversity to do great things.  Some people with narcolepsy maintain high-powered jobs as lawyers, doctors, financial traders, magazine editors, and professional athletes (to name a few).

Over the past four years, I’ve found medications and lifestyle habits that greatly improve my symptoms. It’s a balancing act and no one is perfect – but some are able to manage life with narcolepsy very successfully.

In closing – THANK YOU to MTV True Life for shining a bright spotlight on untreated narcolepsy and cataplexy! Also, THANK YOU to Katy, Robby and Julie for bravely opening up their lives to raise awareness.  Their efforts inspire me.

A big REM Runner two thumbs up!!

MTV’s Press Release about narcolepsy episode:
On this episode of True Life, you’ll meet two young people who suffer from Narcolepsy, a neurological disorder that brings on overpowering sleep spells, and Cataplexy, a condition associated with Narcolepsy that causes sudden muscle failure. Julie, once a thriving high school student began to fall victim to Cataplexy attacks, causes her muscles fall asleep resulting falls to the ground unexpectedly several times a day. She is no longer able to drive or participate in activities like dance class for fear that her body will not function properly. Medications are an option but Julie fears that the potential side effects could be just as disabling as the maladies themselves. Viewers also meek Katy, who after suffering from Narcolepsy for nearly a decade, controls her affliction with an ever-increasing slew of pills causing adverse side effects. Katy’s boyfriend begins to fear that the amount of medication she’s taking could be harmful to her health and is urging her to stop using them cold turkey. Weaning off medications cause her to return to return to overwhelming sleep attacks. Katy must find a balance that will keep her healthy and happy.

{ 4 comments… read them below or add one }

Anonymous October 20, 2011 at 10:35 am

Even though I don't have cataplexy, I found it hard to watch as I know the struggles with medications and the perception to others.

Someday I might get back to getting in to work at more 'acceptable' time.

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Jessica J. H. Utley October 24, 2011 at 10:00 pm

I missed it! I can't seem to find out when they are going to show it again. For some reason I thought it was coming out November 5?

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Vanessa April 11, 2012 at 2:17 am

I do not have cataplexy but I still felt like I was watching myself when I watched Katy off her medications. I also am not surprised that they did not show anyone who was effectively taking their medication because honestly that is what happens with most of us. At least I know I've been diagnosed for about 6-7 years and still have not found the best medication regime. My physician, who is 5th physician after trying to find someone who could figure out my issues, is really trying to find the best solution but it still hasn't happened. I think the show was very realistic. I could relate with wanting to be normal and figuring out ways to not have to take medicine like Julie, and having family members worried about your meds and beg you to stop like Katy. It's so difficult for other people to understand why medicine is necessary to us that the side effects or risks are worth it; at least to me it is!

If you have any particular tips you found helpful please let me know if you have a previous post on it. I feel like I have tried everything and can't figure out anything that helps.

Oh and I should mention I have idiopathic hypersomnia. I really wish MTV displayed this because most of my friends either think of Sleep Apnea or Narcolepsy (the narcolpetic dog in particular); so it's difficult for them to comprehend the differences, especially when they imagine of all sleep disorders is either falling asleep into your bowl of soup or falling like cataplexy. Since I fit neither criteria I'm perceived to have a "mild" form- I wish that was the case. I wish I had another solution other than taking 9 pills a day! (My apologies for typos but it's past my bedtime!)

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Tina Clawson November 20, 2012 at 7:10 pm

I too want to thank Julie, Katy, and Robbie for being willing to open up their lives and struggles with narcolepsy. My daughter who is 15 was having these episodes and everyone thought it was seizures. I knew it wasn’t because she is conscious the whole time. Laughter is also her trigger for cataplexy and sometimes when she is coming out of sleep. Her knees buckle and she falls. I have also seen her face and eye twitch. Because of your show I was able to explain to the neurologist what was going on with her. We are now awaiting a consult with a sleep medicine doctor.
However, without the bravery of these two ladies, my daughter might have suffered silently for much longer.

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