Thank You i having cataplexy problems and not enough sleep

Anything on hypotension?

This is an absolute gem of a video among the hundreds of useless 2 min clips on narcolepsy flooding youtube

Thankful for this content as I begin to seek help and diagnosis. Hope to hear more about the correct understanding of cataplexy.

Good luck to you all! Keep on fighting. 🙂

I don’t think I have narcolepsy but I do use food to stay awake when I’m feeling sleepy, maybe that’s one reason for the overeating???

Tio foryour future reference to whomever has the phone alerts going off near the recording mic- SILENCE YOUR PHONE BEFORE YOU START. It's more than just a distraction.

Thank you for your contributions. I appreciate your openness and for being blunt about symptoms and social impact. 🙏🏻

Thanks a lot for your remarks at 37:00 It is so embarrassing and demeaning having discussions about stimulants and autonomously taking them as pro re nata medication, not to mention high dosage responders. Also, combinations of stimulants are something many physicians shy away from. The role of BMI and dietary changes should also be mentioned. Losing 20kg of weight and switching to a plant-based diet helps to reduce the risk of obesity, diabetes mellitus and hypertension. It also supports lower doses of medication. I can highly advise this way of diet, especially if you are having binge eating attacks. Eating high-fat food vs. low energy density food gives you the edge overweight problems. And we need to take care of blood pressure and heart functioning due to medication.

Thank you very much. I really appreciate this talk. For me in combination with talks from Dr Mignot on this annual conference were the best I experienced in many, many years. Most physicians tend to reason narcolepsy away, focusing on depression. Also that patients have to rely mostly on stimulants in general is raising concerns. So the only cure is the forbidden fruit in many cases and psychotherapy has also a hard time acknowledging the fact that stimulants are a necessity and not something to reason away.

This is another gem and highlight in this channel's series of latest videos. I appreciated Nicole Jeray's self-disclosure and openness around 46:00. I kind of wept when she mentioned that she goes to her car and takes nap frequently especially during lunch break for example. You have to mask and shield yourself from others, trying to function on the outside. While naps somewhat help, you miss the social part of others and usually need to hide what you are doing so as not to get mocked or pressured. I hope that she finds a solution for the medication coverage. It is so heartbreaking that the very thing that helps you function better is behind a paywall that you are unable to reach because you are not functioning properly. Also, Dr. Mignot's remarks on cataplexies were again spot on; the anticipation level is misunderstood by doctors. His recommendations and tricks of the trade for dealing with Xyrem are very helpful.

Finally a great update and outlook. I need to rewatch the talk, so much interesting new informations after years of a felt standstill rereading and rewatching the same information over and over again. Especially the specifics about Orexin were very instructive. How are they involved into wakefulness, I found the nap/wakefulness two hour relationship extremely helpful. Also mentioning that there are spans of Orexin levels and outliers as well. Also touching the topic of overeating and lack of quality of sleep, which is not treated by stimulants but by improvements of sleep quality by Xyrem for example. Great to have all the information systematically put into place and how they relate and influence each other.

Thank you. You can also mix Pitolisant and stimulants.

Thanks for coming out to Seattle Dr. Mignot. It's a very informative session for people with narcolepsy and IH.

Love Watson!

Amazing presentation. Very informative

How can anyone not have depression or anxiety with narcolepsy? It’s so painful everyday and keep failing everything you do

Some advice regarding the findings and impact of N and IH on social life as well as work regarding treatment options: Patients and doctors should try high dosage therapy for MPH for example. I do it, I can’t and don’t want to nap during the day and this can only be achieved by using more MPH in my case. Day to day life is still hard, but it feels better than limiting oneself in a working environment and also for going out with friends in the evening, though very rarely. Also night sleep is better for me. I have the feeling, that many N patients think they need to combine MPH and naps, instead of taking more MPH to prevent mandatory naps. Just my opinion.

Thank you Wake up Narcolepsy for highlighting this topic. As a mom with narcolepsy and cataplexy, I hope that this discussion leads to more research funding for narcolepsy and maternal health and encourage more pharmaceutical companies to start pregnancy registries.

16:45 and 32:00 Cardiovascular risk factors and EDS, depression: My hypothesis is, that sleepiness really is no motivator to hit the treadmill. While adrenaline helps fighting sleepiness, it still puts a huge barrier to it. Another factor that contributes to a sedentary lifestyle as well as obesity is in Narcolepsy the fact that it is caused by lack of Orexin, which influences eating behavior besides other factors, like mood and depression. en.wikipedia.org/wiki/Orexin scholar.google.de/scholar?hl=de&as_sdt=0%2C5&q=orexin+role&oq=orexin+rol#d=gs_qabs&t=1710959729552&u=%23p%3DxWtQ0CtMuYAJ

31:33 EDS in the general population: As a Narcoleptic, I see it the other way around. Roughly 80% of people are able to stay awake during their activities after sleeping. 😮 It took a very long time to emotionally accept the fact that my sleep regulation is permanently and irreparably damaged, so that my sleep is just a way to disengage from daily struggles, even after a rude awakening due to frequently and very vividly occurring nightmares. It is more like changing internal state than really appreciating it. It is ok. I am deeply grateful for stimulants, even with their side effects.

Going in for a sleep appt in two weeks, this was very informative

🌈 P r o m o S M

So wonderful, Monica Gow! WUN is the BEST!!! Thank you Dr. Scammell! 😊😊😊

Wonderful!! Thank you so much! I have had Narcolepsy for 38 years and you are spot on and certainly sharing very helpful things. 😊

I went to a sleep specialist for a consultation last week and she was baffled on how I can fall asleep standing 20-50 times a day without falling over….. shouldn’t a sleep specialist understand that?? She also didn’t get why naps don’t wake me up…. I told her that I normally don’t bother taking naps because how quickly the sleepiness comes back. I have a feeling it’s going to take a very long time to get answers and I’ve already been dealing with this for 13 years.

Thank you for this

(N1) Sometimes I will go through an entire groggy day, nap or not.. by nighttime when I lay down to sleep- I cannot. This happened before wakefulness medications and stimulants as well as after. I am wondering if the connection to the insomnia part is triggered by the fact that sleep deprivation can raise orexin. Seeing as how I experienced it both before and after, It doesn't seem to me to be the medication. I have never heard anyone (doctors etc.) speak of the rise of orexin due to sleep deprivation mentioned in this context. I have pondered this for years, is this a known connection or has it been overlooked? Having Narcolepsy and Insomnia is a fun paradox. :) I've also experienced an hour to an hour and a half episodes of cataplexy upon occasion. Friends wondered if I was on opiates. I lay down away from everyone and just breathe. I can talk, but don't want to. The stress of "ARE YOU OKAY?!" from others makes it worse, which is funny... as the ability to get out of it diminishes when people are worried about me- seemingly unavoidable loop of cause and effect. "Don't worry about me, you're making it worse" is a confusing thing to tell people. Thank goodness laughing doesn't trigger me, it's mostly stressors or negatives, startle gets me, so much so I instantly taste a copper taste in my mouth. The rare feeling of being very relaxed and 'at home' around a group of new friends can- which is horrible.... 'yay, this is amazing- we are having a great time'... plop. Oh! I have a question- My polysomnogram and MSLT showed a complete lack of N3 slow-wave sleep. Zero seconds. >> Is there a name for this? << I know it is rare among narcoleptics, and cannot find any info at all- anywhere... primary doc is currently looking for comorbidities. Any ideas? Thanks for your work Doc!

This explains so much. Thank you.

13:29 obesity is correlated to sleep deprivation: "Studies showed that experimental sleep restriction was associated with increased levels of ghrelin, salt retention and inflammatory markers as well as decreased levels of leptin and insulin sensitivity." Sleep deprivation and obesity in adults: a brief narrative review, 2018 Sleep deprivation is also associated with hypertension 16:20 Sleep Loss and Hypertension: A Systematic Review, 2018 Sleep debt (cumulative loss of sleep) results in same symptoms as sleep deprivation. 20:42 children with less than 8h sleep were 14 times more likely to develop adhd. Early sleep deprivation and attention-deficit/hyperactivity disorder, 2019 23:26 low vitamin D has been linked to sleep disorders, early puberty, and adhd. In other words, narcolepsy has the exact same comorbidities as sleep deprivation.

Why not just take coffee? Fewest side effects, and might be as effective from what research I read.

I feel so much better after starting xyrem, but now a couple of months ago my parasomnia activities went into hyper drive and I never know where I will wake up, Kansas City Mo

Considering Narcolepsy is essentially a REM sleep disorder, I wonder if you could ask patients if they experience Maladaptive Daydreaming as well. I’m willing to bet most of them do. I know I do. It would make sense if the two are correlated, that the excessive sleepiness and daydreaming are linked. Daydreaming could be REM sleep creeping into waking hours? If you happen to find this interesting and do ask several patients this, I’d be happy to hear back from you. If you end up publishing studies, just toss my name in there 😜

Dr Scammell is a talented science communicator. This was very informative. Thank you.

Thank you!

Dr. Stevens was my sleep doc

Informative presentation with easy-to-understand language for even a non-medical professional :)

23:35 what meds you on? It was hard to understand, sorry. Sinergy??! Xyrem?!!

I have narcolepsy with cataplexy and I don't take any medicine but a herbal medicine I found that works great to keep me awake.

very interactive and informative session. Thanks Anne from Kenya you are our voice .Needless to say, unprecedented challenges faced by narcoleptics.

I want to listen but the audio is terrible

I've had Narcolepsy and Cataplexy since I can remember I'm 45 years old I don't wish it on anyone. Especially my children. When realities become a day dream a day dream becomes a night mare a night mare becomes your everyday life knowing all you want is to see life normal like everyone else. When you don't want to be embarrassed for falling asleep in public or made fun of by your family at a family function Or just to have a friend that understands how hard your trying.... Narcolepsy is no joke Educate the world the teachers our families. Life gets better with the strength of who you are and what you can do. Live

Hello, if you have re-broadcast rights to this video, I can facilitate it showing our network of 120-140 PBS stations, we produce 2-6-minute sponsored educational videos that will air on PBS affiliate stations nationwide + + + we share existing PSAs, such as this video for a highly reasonable CPM while reaching a minimum 1st quarter PBS audience of 3 million viewers + 500 airings of your PSA, it's a simple process + we've been on public television for over 30 years. if you want info, please reach out. Thank you.

So good to see there are others such as myself who suffer through this. It is lonely and frustrating to prove to others who misunderstand my symptoms. .So much ❤ to all my narcoleptic family!

Beautifully said ❤

Are there any predictions on how long it will take for it to be semi-curable/curable?

Never know when it's going to happen. Can't drive iam always fatigued. Iam not obese. Very thin.

And the Braun fog I feel so stupid.

When you can't work because you are sleeping . It is embarrassing. Yes

I'm gonna add it to my new compilation of things to present to anybody i want to understand. I can't do that with bumpin my gums (I'm a lazy ass psycho aka genuine narcoleptic)