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Agenda for IH and Narcolepsy Research with Emmanuel Mignor, MD, PhD

  Рет қаралды 214

Hypersomnia Foundation

Hypersomnia Foundation

Күн бұрын

Dr. Emmanuel Mignot takes us on an overview of the latest research on idiopathic hypersomnia and narcolepsy, along with discussing what he sees as the future agenda for research.
Dr. Mignot is Craig Reynolds Professor of Sleep Medicine at Stanford University. He discovered that human narcolepsy is caused by the autoimmune loss of ~70,000 hypothalamic neurons secreting the wake-promoting peptide hypocretin/orexin. Dr. Mignot has received numerous awards, including the 2023 Breakthrough Prize. He is a member of the National Academies of Sciences and Medicine.
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Пікірлер: 7
@ProBloggerWorld
@ProBloggerWorld Ай бұрын
Emmanuel Mignot deserves to Nobel Prize. He changed our understanding of the brain 🧠 by identifying Orexin as an important neurotransmitter that influences sleep, eating, wakefulness.
@M19998
@M19998 Ай бұрын
wish there was more research being done on IH with long sleep time and the standard to diagnose a 24 hour PSG. MSLT is what is always done, after complaining about being tired for over a decade and having everything else ruled out, and it just isn't a good diagnostic tool for IH with long sleep time. Just let us sleep and we'll sleep 16 hours+, probably straight. Don't wake us up at 5am and then tell us when to fall asleep. IH with long sleep time should be in a separate category from IH without long sleeptime and NT2 and the diagnostic test should be 24 hour PSG. Studies have shown people with IH with long sleep time have normal sleep latency. But even some board certified sleep medicine doctors don't seem to know this. More research would help. Can't even do actigraphy Dx anymore because Phillips discontinued the software
@stedankel
@stedankel 24 күн бұрын
I 100% agree! MSLT is basically pointless for IH with long sleep. When I did the MSLT I kept falling asleep in the awake sections, which wasn't even recorded! Useless data for IH. Give me 24-48hrs and I could probably sleep the entire time! And I also agree about separating the IH types. There was a passing comment of potentially calling IH Narcolepsy type 3. At least then we might actually be taken seriously and have access to proper treatment!
@M19998
@M19998 24 күн бұрын
@@stedankel yea it is frustrating. Though my frustration isn't directed at Dr. Mignot, he's one of the few doing research to find proper treatments. It's more directed at the fact that board certified sleep medicine doctors are still ordering MSLTs when a patient tells them they have long naps that make them feels worse and can sleep 16 hours straight, describe sleep inertia, and say waking up is the hardest thing done all day. Test that is ordered automatically should be 24 hour PSG but instead it's the MSLT. Even though all those things are exclusive to IH with long sleep. I actually think most sleep medicine doctors don't even know there are two subsets of IH. The AASM needs to update their protocols and guidelines for their docs. Patient has these symptoms? Order the 24 hour PSG. Patient has these symptoms? Order the MSLT.
@stedankel
@stedankel 24 күн бұрын
@@M19998 Oh yeah definitely not directed at Dr Mignot! From everything I've watched about IH in the last year, hearing him talk about the future possibilities and current developments gives me real hope! I hate using any illness as a crutch, but I just want ppl to believe me when I emphasise how eternally tired I am and not just say I'm lazy or to "be more organised".
@teew7168
@teew7168 Ай бұрын
I feel confused. With orexin having to be measured in a CSF sample (not in plasma), I would think it hard to imagine the idea of a protein in the blood that could be measured to diagnose NT1, NT2, or IH. Or, do I misunderstand that if orexin were to be sought by plasma proteomics, it would not be found?
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