Re-thinking Classifications of Type 2 Narcolepsy & Idiopathic Hypersomnia: Dr. Emmanuel Mignot Pt II

In Part II of this interview, Emmanuel Mignot, MD, PhD, Director of the Stanford Center for Sleep Sciences and Medicine at Stanford University speaks with Julie Flygare, JD, President & CEO of Project Sleep, to discuss the narcolepsy research field's re-thinking of the classifications of type 2 narcolepsy without cataplexy and idiopathic hypersomnia.
This is part II a longer interview available here: • Narcolepsy, Immunology...
Recorded on Thursday, April 23, 2020
Dr. Emmanuel Mignot is Professor of Psychiatry and Behavioral Sciences at Stanford University. He received his M.D. and Ph.D. from Paris V and VI University in France. Dr. Mignot is internationally recognized for discovering the cause of narcolepsy. He has received numerous research grants and honors and is the co-author of more than 200 original scientific publications. Most of Dr. Mignot's current research focuses on the neurobiology, genetics and immunology of narcolepsy, a disorder caused by hypocretin (orexin) cell loss, with indirect interest in the neuroimmunology of other brain disorders. His laboratory uses state of the art human genetics techniques, such as genome wide association, exome or whole genome sequencing in the study of human sleep and sleep disorders, with parallel studies in animal models. His laboratory is also interested in web-based assessments of sleep disorders, computer-based processing of polysomnography (PSG), and outcomes research.
Julie Flygare, J.D. is the President & CEO of Project Sleep and award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. After receiving a diagnosis of narcolepsy with cataplexy in 2007, Flygare advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. In 2013, Flygare founded Project Sleep as a national non-profit organization dedicated to raising awareness about sleep health and sleep disorders. In her current role, she aims to empower a new generation of speakers, writers, patient advocates and community leaders in the sleep space. She is the co-creator of the first-ever scholarship program for students with narcolepsy, along with the Rising Voices of Narcolepsy℠ leadership training program. Flygare received her B.A. from Brown University and her J.D. from Boston College Law School, focusing on health law and policy.
This video is brought to you by Project Sleep, a 501(c)(3) non-profit organization dedicated to raising awareness of sleep health and sleep disorders. Project Sleep’s current programming includes the Rising Voices of Narcolepsy℠ leadership training program, the Jack & Julie Narcolepsy Scholarship, Narcolepsy: Not Alone®, the Sleep In campaign, and national sleep advocacy efforts. Learn more: project-sleep.com/
Note: This event is for educational purposes and not intended to be a substitute for professional medical advice. Should you have personal healthcare-related questions, please contact your sleep specialist or a qualified health provider.

[@denisekriel5892]

I cannot tell people I have ideopathic hypersomnia. The moment people hear ideopathic they say that means it does not exist! It is incredibly difficult to cope with this disorder but the judgment from others is almost impossible to live with.

[@cherrysmith-condon2425]

I have eliminated my daughter along with my twin from my life due to IH….they are incapable of any understanding of my condition

[@lanaharlow2515]

Cherry Smith-Condon: It's ok if they don't understand. More important is they're supportive or at least accepting. I suspect, however, they aren't?

[@user-anot53ou1]

I tell people I have a sleep disorder similar to narcolepsy. It’s the only way they can understand instead of telling them I have IH.

[@cheeseblock89]

I was told Idiopathic means-we don't know why....and hypersomnia- " you are so sleepy all the time..❤

[@asrielgaming3097]

I wish they had the portable three day testing here where I live. I have severe IH and a lot of issues with migraines, sinusitis, and nerves in my face that make stabilizing my IH difficult. I’ve had signs of IH from as early as 3years old. I’m amazed at how much more has been learnt within the last 10 years. Makes living with IH not feel completely hopeless. Thank you for providing these videos they have been so helpful for me.

[@excelbumPRG]

Thank you for informing us.

[@KatrinaDancer]

It's "mostly solved"?! I don't know if I'd call it mostly solved until it can be cured 🤔

[@Rene-uz3eb]

I thinks it's a bit misleading to use narcolepsy t1 as hypersomnia with cataplexy. Narcolepsy t1 is defined as lack of orexin, which is hard to prove without a spinal tap. You can have cataplexy in t2.

[@jedheart8059]

As a Veteran, i had both MSLT and Epilepsy Sleep studies. And, i had the orexin spinal fluid tap study whi was negative VA medical doctors cannot figure what my sleep problem is for over 20 years. I wish the 3 day weearable comes out dponer than later. I really need go know.

[@cheeseblock89]

Have you tried any diet changes or homeopathic remedies, I hear they work for some:) also I've been debating a spinal tap, but am a big chicken, if i may ask, was it very painful?:/

[@cherrysmith-condon2425]

My life feels hopeless now with IH

[@Bridge_with_a_T]

Same here. I was given every opportunity to excel, and could do anything with my life, but I've slept them all away. It's a curse, and no one understands. I hate my life, like what purpose are you serving when you sleep 20+ hours and are still exhausted? I just want to be awake. I feel so worthless, and no one takes it seriously.

[@stellaancimer8505]

@@Bridge_with_a_T totaly get it, did you try changing food? I swear if i eat carbs i Fall asleep imidiatly..for me i still dont have offical diagnose but i know it for myself if i do to much i Will have cataplexy or huge sleep attack All the best*

[@cheeseblock89]

I say that most of time, I'm more alive in my dreams then when I'm "awake."

[@stellaancimer8505]

Did someone has cataplexy, but mslt test was negative? They write cataplexy with functional disorder, because mslt test was ok, but they see attacks, and muscle loss

[@magicalcrow6649]

Mine was like that too, I didn't went to REM sleep at the test but I had a really small latency and cataplexy but because of the REM the doctor told me it couldn't be narcolepsy and sent me to a psychologist lol, did you get another diagnosis with those symptoms?

[@stellaancimer8505]

@@magicalcrow6649 they really dont know what they are speaking( doctors) i mean, there are three stuff mslt, gene test, and lumbar puncture, they have to take all of them to see if it is narcolepsy or not..i had all the symptoms, but mslt normal, and i dont have gene positive, so the only stuff left is hypocritin, this is what we are still waiting.. It is scary, because i have cataplexy symptoms, and i am disable, i cant work, so Fnd is diagnose for now, i have an apoiment in three weeks now..go there and say they need to take hypocritin test, and gene..all the best

[@shailidevi4085]

Whst r tha association of hla dr2.?

[@Robbya10]

I was diagnosed with narcolepsy but I'm not sure how I feel about it, and I really want to learn more. I feel like mine is kind of weird if I do really have it. I've been trying to find a way to get into a study do you guys know how ?

[@user-sc9np9gh2g]

Ask your doctor to refer you for a sleep study if you're in the U.S. and need a referral to see a specialist. Good luck!

[@Bridge_with_a_T]

My sleep doctors wouldn't take me seriously, so I quit my job to get more options. My insurance company doesn't give a shit because they have too many patients, and after begging for help for months, they "scheduled" a sleep test weeks ago, but haven't even called me to set anything up. I need advice too, like how should I set something like this up without insurance? I'm about to get Medicaid, but I'm at my wits end. I don't want to be alive anymore when all I do is take up space.

[@nahtanojization]

​@@Bridge_with_a_T Hang in there!! Don't lose hope! You'll find hope somewhere. Don't give up. Please!!

[@joshberstecher470]

@Bridge_with_a_T Hey there! Random fellow IH checking in to see how you're getting on? I totally understand the feelings of frustration and just feeling like its pointless...its so much more than us "just being sleepy", and thats tough for peeps to grasp sometimes... But I PROMISE it can get better, and it sounds like getting set up with Medicaid is/was a solid start to get ya on the path to treatment...so hoping that went well. My state insurance (in NJ) also has Case Managers available for free to help you keep organized and on top of getting what you need - and its a free part of their services, so worth checking out! :) In any case, just know that you are ALWAYS "worth it", okay? You are the only you the world's got, after all, and that's pretty great (even if ya dont always see that)! So hang in there! Dont give up on yourself!

[@cheeseblock89]

I honestly find the MSLT to not be the most straightforward way to diagnose as I myself fell asleep super fast in what I thought was all ov the naps, yet apparently there was one nap I took 8 minutes to actually pass out though I thought I had been therefore must have been on the cusp of consciousness. I got my diagnosis through blood allele. Only other way I know of is a spinal tap, which is too spooky for me:/