The Hypersomnia Foundation is a 501(c)3, non-profit organization created to advocate, educate, and provide resources for research on behalf of people affected by hypersomnias.
OUR MISSION The Hypersomnia Foundation engages, informs and champions our global community to improve the lives of people with idiopathic hypersomnia and related sleep disorders.
OUR VISION Fulfill the dream of restorative nighttime sleep and wide-awake days.
Thanks Meghan for sharing your story. I wanted to learn more about a patient’s experience with IH. I also want to become a PA and am working toward applying. I struggle with excessive daytime sleepiness. I hope you find some relief from your symptoms and that more effective medications become available soon.
Dr. Mignot... Why does it seem that people with Idiopathic hypersomnia or Narcolepsy will have blood tests done and the blood tests result come back that the person looks like they are fighting a infection. I don't recall the name of the blood test. But the results every year come back fighting an infection.
Dr. Mignot... Dr. David Rye has researched Idiopathic hypersomnia for years and has lots of valuable information and blood and the response machine. Has Dr. Mignot and Dr. Rye looked at combining information and working together? I know someone who has this run in the family for generations.
my sleep test I was out in less than 30 seconds and my MLST a minute- had 1 REM nap so they said borderline narcolepsy and ended up with IH. Its horrible. I have a lengthy history of health issues and surgeries as well. Im no longer working or able to function normally everyday . I need more help than im getting. I struggle taking stimulants now too because I developed dyskinesia and have jaw clenching and pain everyday and the stimulants aggrevate it and make it worse. The Xywav is helpful but not enough. My sleep doc even told me he (and colleagues) only know how to treat apnea and I need "a smarter doctor". I just cant get one where I live. UGH. So im here, trying to learn as much as I can on my own in hopes I can find some adequate treatment to get some of my life back.
I notice when family was concerned about me and keep getting my attention I didn't know how much I slept and why I looked tired always. When I'm going threw alot it gets worse I get more depressed sad and following by more sleep. I have gotten woken up and been told if I had sleeping problems . Ask why do I sleep for long times. Keep reading informaming my self . It's hard but I have learned more and touched with realty about this situation of my life. No one my family understands what's going on with me.
As a finally, recently diagnosed IH person - this was so informative! I have been misdiagnosed or double-triple diagnosed for so long! This all makes perfect sense to me. So hard to get doctors to take you seriously and once you have labels - it just gets worse to get to real answers.
Hola! Estoy de acuerdo, el dr Mignot es un excelente investigador de las enfermedades del sueño. Os comento nuestro caso. Mi hijo es diagnosticado con 20 años de Narcolepsia 2 o HI, todavía no restaba claro. Se hizo varias pruebas: MSLT, punción lumbar... Le recetaron medicamentos que sí, le mantenían despierto y más atento, pero también nervioso. Necesitaba subir la dosis a menudo por la tolerancia. Le costaba conciliar el sueño por la noche y perdía el apetito. Tuvo que dejar la universidad y también entró en depresión. Decidimos probar a enfocar el problema de otra forma. Dejó de tomar la medicación. Comenzón un riguroso plan de vida saludable. Tuvimos en cuenta también las enseñanzas del DR Santchi Panda (especialista mundial en ritmos circadianos), Juan Antonio Madrid (cronobiólogo) y también otros premios Nobel en cronobiología. - Deporte todos los días - Comida saludable. Muchas vegetales variados, pescado, algo de carne y no harinas refinadas. - Acabar de cenar 3 horas antes de acostarse para hacer un poco de ayuno y también permitir al cerebro hacer su reparación. - Exponerse a la luz del sol por las mañanas al levantarse. - Acompañamos con suplementos de Omega3, todas las vitaminas del grupo B, Vitamina D. En 3 o 4 meses mejoró. No ha vuelto a tomar medicación. También dejó el café. . Ahora tiene 24 años y ha terminado sus estudios en otra otra universidad. Estamos muy contentos. Esperamos que pueda servir esta información. Pensamos que lo primero era llevar un buen estilo de vida y probar. Y no ir directamente a la medicación ya que era un problema a corto, medio y largo plazo. Perdón por no escribir en inglés, soy española y así me expreso mejor. Un abrazo.
I was only technically diagnosed by having the N blood allele marker. On my MSLT (overnight and next daynap tests) one nap session j apparently did fall asleep for 8 minutes on ONE nap, it through off the whole sleep study! Ive never done a spinal tap (im chicken,) and to my understanding would be the definitive test if you have N or not. I still feel like maybe i have hypersommia, though my aunt dads sister) and grandma (my dad's mom) show(ed) major EDS symptoms though never diagnosed.
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
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!
@@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.
@@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".
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?
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.
This seems to be a global phenomenon. Even so called Sleep Disorder Specialists here in Europe seem to really lack basic knowledge in treatment of sleep disorders and hide behind so-called guidelines instead of putting the patient’s need first, which ironically is what these guidelines say: Put the patient first, treatment is highly individually, keep the dire consequences of no adequate treatment of patients in mind. Sleep Deprivation is considered torture, yet HCP do not hesitate to keep up this very state. Most lack basic understanding as well as empathy to really understand, that in Narcolepsy for example people are physically unable to achieve the human rest mechanism. HCP don’t get it. It is like missing two legs or being deaf or being blind. It stuns me, that so called specialists really do not get the message that Narcolepsy means: from now on, you will never ever again be able to rest during your sleep phase. If N hits you with age of 15, you lack rest for 60-70 years! Imagine that.
Thank you so much for the upload. It is really encouraging to hear there is some research being done, and gives me something I can talk about with my doctor and be able to mention real studies and real doctors (instead of getting dismissed as just collecting questionable info from surfing dr. google).
I don't "almost feel guilty," I feel incredibly guilty asking for help. Sadly, I've had most of these issues since I was a child. I grew up hearing, "Eat better and exercise." I've only ever voluntarily been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution. I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. It rarely worked. I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them? These days, I'm awake as little as 10 minutes or up to 9 hrs per day, generally.
@justsheley, my understanding is that at the time of the conference there was not a name for the documentary and because it’s being submitted to some film festivities so, release to the public is temporarily delayed.
@justsheley, in case you were asking about the PSA that also was released during the conference, it’s called Hey Sleepyhead - ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-Lwcrn5yvNOw.htmlfeature=shared
I don't know about anyone else, but I eat in part trying to boost wakefulness - sugar, caffeine, etc. Being awake does not just eliminate that but also allows for activities. The daytime sleepiness test is indeed torture. Sadly, I've had most of these issues since I was a child. I've only ever been awake overnight for as long as I can remember. It's just when my body would cooperate. Prednisone was the only thing that helped. Obviously, that's not a real solution. I missed tons of school. I wouldn't take jobs that began before 10 am (in good times), and that meant sleeping the whole time I wasn't at work in the hope of waking & being on time. I can fall asleep standing up, eating, mid-conversation. The weather definitely affects me. I've slept for days with tiny periods of being awake. This is why I never had children, frankly. How would I care for them? Apparently, it runs in the family, though I was much worse than my dad.
@Timayy I've never taken it for sleepiness. It's prescribed for other things, and my life is dramatically better for that time. I was on time for work. I do things without going through every step mentally. My nails even get strong. Basically, I feel the way I imagine real people feel. They tried giving me cortisol; NSAIDs; checking my hormones, vitamins, etc. Nothing. To date, nothing else has had the same effect. With that said, there have been times in the last few years that prednisone doesn't work in the usual way. I have no idea why.
@@Timayy yes, it helps. Like I said, it's how I imagine "normal" people live - 8 hrs at night, up on time for work, cleaning or socializing after work, etc. They will not give me prednisone all the time, though. It's really bad for you.
One of the AEDs I take helps GABA....I am almost Ketogenic as Virgin Coconut oil reduces appetite, I also havs a VNS because the epilepsy used to be Intractable because it's on both sides of the brain. I belive the AED that helps GABA helps alot and I get enough sleep. Thanks for your review!
35 years, increase in hours asleep till now I have no life. When Provigil became generic Modafanil, it doesn't work. I don't have a Sleep Disorder, I sleep just fine. I have a Wake Up problem... I'm very rarely awake and refreshed and alert.🛌🏼🛌🏼🛌🏼
"sleeping my life away" is exactly how I feel. I'm 22 years old, talked to many professionals but no one seems to understand or take me seriously. I feel like my life is skipping thru my fingers.
I must admit, this made me tear up. Very well done. Snooze time is of course much much longer than depicted, but who would want to watch a video of someone pressing snooze for hours. 😂 Kudos, and thank you for making this!
