I've been diagnosed with narcolepsy for 2 years. I'm only 20 minutes in, and I've already learned more than I have since my diagnosis. Thank you for producing this video and putting it on youtube! There is a serious lack of recent material/information out there about Narcolepsy.

Thanks for doing this! Want to say and/or try an contribute, a few things: First point, personally I consider what Dr. Ruoff described as 'sleep intertia/sleep drunkiness upon awakening, to be a form and/or minimal/moderate extent of sleep paralysis' potentially; it also could occur in combination with a sleep attack (EDS) during the daytime. The way that, and the frequency of how, the tetrad symptoms combine can be very difficult to differentiate, even picking up on one while another is apparent can be tricky for the individual. Second point, I suspect that very many people (including many Type 2 Narcoleptics and even with IH) are living with minimal Cataplexy though aren't getting enough of a proper picture of, understanding of, what Cataplexy is and what it can be. Cataplexy is such a deeply rooted symptom and very much also, like sleep, a super normal experience (feeling of emotions, though overwhelmingly so, though in general people are not so tuned into their emotions 'in the moment') until it becomes impacting, being moderate and/or severe over some duration of time. A suggestion and/or observation on 'where to go from here': Regarding Cataplexy terminology, 'muscle weakness' (terms alone) doesn't describe the actual feeling of the experience well, at all, perhaps using 'muscle interference with overwhelming inner sensations/feelings in the moment/s of stimulated and/or heightened emotion/s (especially laughter),' is a far more thorough and/or comprehend-able way of describing the experience; I digress. Also, regarding Cataplexy in how Dr. Ruoff described as Atypical versus Typical, the symptom absolutely goes both ways, in respect to the triggering being by positive vs negative emotion, though for sure the duration element may be more separate-able. Cataplexy involves a broad range of physical effects (easily broke down to minimal, moderate, severe and can fluctuate gradually or instant like between any, as well as be ongoing especially during minimal), along with what are inner sensations, which can be overwhelming and note able (like an electrical spike and/or short out, in/of the muscular/skeletal systems). Beyond that, there's also very much an element of the many various body functions/energy levels all being at play, tying right back to the hypocretin/orexin 'regulation of such body functions/energy levels' issue in the hypothalamus... Personally, would love to interact with someone like Dr. Ruoff on/into the deep depth of Cataplexy, which is hardly touched upon, that is as someone who has lived with the symptom since childhood and with it being very severe through my 20's, before discovering the term at 28 and getting confirmations soon after, now being a decade+ later; the clinicians I've interacted with, are totally oblivious to the depth and also quite unwilling to begin going into depth on the subject (I understand, very few experience it to such extents but it really can be broken down so so much further). =]

Outstanding thank you!

The problem is that there is a lack of medical knowledge regarding sleep disorders. My VA sleep doctors first diagnosed me with sleep apnea, 2009; then I needed new mask, etc and was asked to reeavulated; VA sleep doctor said my description sounded more like narcolepsy then schedule an mslt; i slept for well over 12 hours within yhe two days before that lab test; i was awake for a long time after lab tecs turned off the lights; i woke needing to urinate and rsnf the bell nut no one showed up for hours but no one caught I was not asleep while holding my urine until morning; regardless sleep apnea was ruled out but had positional sleep apnea when on my back only, has restless legs but 14 movements an hours - one less per hour for a diagnosis; so i was sent to a University sleep clinic where that sleep doctor felt I have slerp epilepsy but then COVID. After COVID, I was sent to another University, epilepsy sleep lab;, there no seizures were recorded but a Loss of Muscle Tone was video recorded. VA sleep doctor would not take me back for my sleep disorder, at minimal falling asleep reading, cant stay awake past 4-6pm typically, at worst have fallen asleep driving over an half hour. That has gone on for decades, three decades since i was a young adult. Neither sleep ir epilepsy clinic will take me. I am still waiting for another University appointment with a specialist who does all types of muscle disorders. The only thing that is acknowledged is that I may have a muscle issue. That specialist i do believe covers Parkinson's, etc. I think she does both seizures and sleep disorders due to all the other disorders that may have those as comorbid. I have been going in circles since 2009 at the VA medical system. Its worse for Medicare patients. Getting lost in a system where no doctor can follow snyoneyover time has created not gaps but sink holes in treating sleep disorders of ant type.

My short and less severe cataplexy is triggered by laughing and being surprised. If I get mad or angry it’s longer and more severe.

Referring to about minute 29:00 I never ever wake up feeling refreshed... I can't remember the last time I ever woke up feeling refreshed. And nearly every morning, wake up abruptly straight out of a dream with severe confusion and panic that lasts often for hours... but I also have extremely vivid dreams, and suffer from paralysis when falling asleep more often than not. & have been told many times during these vivid dreams " I'm like a dog running in its dream" while also talking most of the time.. I can't tell the difference between what was a dream and what actually happened in waking life. I feel like I'm losing it. I've also been completely fatigued for the past several years which can't be helping. I don't even know where to turn or how to been seen by a sleep specialist.. and also fear that if i have to do a sleep study away from home I will not have the same symptoms and won't get the help I need. Any help or advice would be so appreciated thank you

Ontario, Canada Neyaashiinigmiing First Nation

But if I wake up in 2-3 hours I can be wide awake for days

And lost 50 lbs within one month of symptoms. I’m just lost on what kind of specialist to go towards. The more I eat the more weight I loose and and I oversleep at least half the time. It’s such an issue. I’m just so frustrated

Is I common for my type of narcolepsy be associated withsfhd

So I was diagnosed with the type of narcolepsy that enters rem too fast. Then he quit the medical group before I got any sort of direction on treatments, I’m just lost now on what direction to go in?? Like just let it go by or is it worth working on???

What if you are on multiple medications, and cannot go off of them for the MSLT testing? (e.g. I have SEVERE neuropathy and cannot stop taking Gabapentin for weeks or months to get a MSLT study done without meds [I take several medications - that is one example])

Something is really wrong with my sleep and both are not normal

Yeah I sleep at least 28 hrs on my nights off

Sweden

Nc

ummm, ummm, ummm!