Narcolepsy in the News: CBS News Los Angeles

by julie on July 18, 2016

I’m thrilled to share CBS News Los Angeles’ awesome segment on my experience with narcolepsy. Please WATCH & SHARE (http://cbsloc.al/291UTw6):

narcolepsy advocate Julie Flygare project sleep narcoleptic diagnosis narcolepsy treatment

On Monday June 27, this segment aired during the 5 o’clock evening news, highlighting my sleepiness, cataplexy, and the challenges napping as an adult.  The news piece also mentioned my non-profit, Project Sleep, my book “Wide Awake and Dreaming: A Memoir of Narcolepsy” and the Jack & Julie Narcolepsy Scholarship.

Let’s speed proper diagnosis for people with narcolepsy – share this video to raise awareness today: http://cbsloc.al/291UTw6

{ 4 comments… read them below or add one }

Amber July 19, 2016 at 3:37 am

Julie, Thank you for your blog. It’s helped me put a face and human story to narcolepsy apart from the dry medical descriptions I’ve read.
After taking an overnight sleep test, it was found I don’t have sleep apnea but my have narcolepsy without cataplexy. I am exhausted all the time and sometimes tell my husband I wish I could sleep for 100 years. But I have a hard time napping and I usually don’t dose off during the day. Is there a difference between exhaustion and sleepiness?
Amber

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Kathy Devita July 21, 2016 at 12:37 am

I am ever so grateful that you have the strength you have to keep on telling the rest of the world to “wake up”. N was diagnosed when I was about 55 or so, and it made me invent insane strategies to cope with everything in life. Once you know what you have the excitement fades as you find out NO ONE ELSE knows what the heck N and C are. Worse, the medical world is still looking at you with skepticism along with the pharmacists, the employer and even family who has seen your face in the food at suppertime!! You will even doubt yourself and your capabilities but all along you KNOW you will fall asleep without a nap every 3 hours for sure. I am 71 years old and I have been told about 3 or 4 times in the last few weeks, “You’re not disabled!” and this was by both someone who never heard of narcolepsy and also by a close family member. I kept thinking about this while my stomach burned from 20 medications I take for staying awake, anxiety, highblood pressure, heart palpitations, high cholesterol, diabetes, leg cramps and feet pain AND numbness and now real serious financial troubles. I mumbled sort of out loud, ” God forgive me for referring to amputees and poor veterans who have lost limbs etc., but I wonder how would all these people who say I am not disabled would feel if they were told they WILL NOT use there arms or legs or brain for the next 20 minutes. They would also be told this will occur every 3 hours for the rest of your life!! (and maybe “on demand, too.) Oddly, no one prepares them for the stares they will always get, the disbelief of others, the inconveniences, the genuine concern for safety and well being with the daily medications and then their own self doubt, the loss of so much precious time, etc etc.
Naw… I am not disabled. But I still feel very alone and now probably a wee bit heartbroken and worn down. I think this is really “real” tiredness..

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N. Leptic July 31, 2016 at 8:47 am

Kathy — I don’t think Julie is a typical narcoleptic — my doctor said so and I think another one on a panel said the same. She’s what they call an “outlier”. The interviewer was sharp, and age seems to be a factor. The danger here is everyone will think we are capable of doing what Julie does. I hope she tells people she’s not a typical case, because a typical narcoleptic wouldn’t have the energy to go around the world like that unless they could tolerate very high stimulant doses, which are potentially unsafe. Eventually, tolerance sets in. It’s almost universal.

I’ve taken Xyrem … 9g — it goes 75% of the cataplexy, which was mild.
It did SQUAT on EDS/stamina/energy.

Adderall XR … up to 60mg — worked great at first — too many side effects.
Vyvanse … up to 70mg — miracle drug — no longer works.

etc. etc.

So what is this girl’s secret? I am on disability. Would like to know because I want to do what Julie does. I don’t see any narcoleptic nursing homes, and my doctor said they would have to put me in a nursing home at age 46! Going off the stimulants leaves me bedridden for days on end, then they will be somewhat effective, but the tolerance quickly returns.

Again, what is her secret? There is Mali Einen at Stanford who takes no stimulant and Xyrem alone. Well how does that work, when even Orphan Medical’s data doesn’t show that it can bring EDS down to normal levels. It’s what, an Adderall crash in reverse?

Julie — if you read this, please tell us. No offense, but I wouldn’t want to make my career narcolepsy if I was functioning as well as you, so I’m not sure what your message is. I worked for 20 years as a consultant for 10 companies at least, was president of a condo, and now I can’t even mow my lawn.

Tackling narcolepsy isn’t “motivation”.

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julie August 17, 2016 at 5:10 am

Thank you for your interest in learning more about my experience with narcolepsy! My response is here: http://julieflygare.com/what-is-my-secret-am-i-a-typical-person-with-narcolepsy/

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