I hope that Mignot finally gets awarded for a Nobelprize for his groundbreaking discoveries around Orexin, and finally put related effects like Narcolepsy in the spotlight.
I have Narcolepsy and ADHD. Knowing that certain viruses can cause narcolepsy is such a relief to me! Everyone including my doctor lectures me about my “refusal to sleep” at night so that I don’t “choose to sleep in the day”- nobody understands it. But here’s a timeline for me: Jan 2011 - Meningioencephalitis by HSV at 22 weeks pregnant. Had a PIC line for remainder of pregnancy to administer anti-viral drug. March 2011 - second daughter is born via cesarean section. April 2011 - contracted Swine Flu (H1N1) so did my older child. I’ve had sleep paralysis my whole life but it was worse when I was sick in 2011 and it’s worse now due to extreme chronic stress and other conditions or factors that contribute. I also have insomnia and absent seizures. I have the Hypnagogic hallucinations but never had the hallucinations upon waking up. I do experience cataplexy from time to time but not often is it severe unless I’ve been scared like when you think you’re going to get into a car accident or going thru a haunted house. Other than that I can control it. And I get somewhat “confused” when I’m walking up the steps (never when walking down), but by the time I get 3/4 of the way up the steps, I always feel this brief moment of confusion and I’ll misstep and trip up the steps or if I just stop and wait about 2 seconds, then I can take the steps correctly and not trip. Very weird. My EEG shows that I do enter REM sleep very fast but I can’t stay asleep. And with the sleep paralysis I’m sure some of it is psychological out of a fear to go to sleep bc I’m terrified of the paralysis and then seeing that shadow man. I don’t even like talking about it. Also- my younger daughter had surgery at 2 years old due to sleep apnea and now I’m here wondering if my conditions have led to her apnea?
I feel you. I consider it an insult to science, that physicians do not grasp the concept of Orexin and the irreparable damage of the sleep wake mechanism in Narcoleptic patients. This is so demeaning to them, to tell them “Yeah, just take a good night’s sleep and chill.” This is like telling a Type 1 diabetes patient that their very problem is the insulin shot or wheelchair users to just stand up and have a walk. Ignorance is bliss.
I hope that Mignot finally gets awarded for a Nobelprize for his groundbreaking discoveries around Orexin, and finally put related effects like Narcolepsy in the spotlight.
Thank you for giving me hope.
Magnifique présentation
Passionnée et passionnante
I have Narcolepsy and ADHD. Knowing that certain viruses can cause narcolepsy is such a relief to me! Everyone including my doctor lectures me about my “refusal to sleep” at night so that I don’t “choose to sleep in the day”- nobody understands it. But here’s a timeline for me:
Jan 2011 - Meningioencephalitis by HSV at 22 weeks pregnant. Had a PIC line for remainder of pregnancy to administer anti-viral drug.
March 2011 - second daughter is born via cesarean section.
April 2011 - contracted Swine Flu (H1N1) so did my older child.
I’ve had sleep paralysis my whole life but it was worse when I was sick in 2011 and it’s worse now due to extreme chronic stress and other conditions or factors that contribute.
I also have insomnia and absent seizures. I have the Hypnagogic hallucinations but never had the hallucinations upon waking up.
I do experience cataplexy from time to time but not often is it severe unless I’ve been scared like when you think you’re going to get into a car accident or going thru a haunted house. Other than that I can control it. And I get somewhat “confused” when I’m walking up the steps (never when walking down), but by the time I get 3/4 of the way up the steps, I always feel this brief moment of confusion and I’ll misstep and trip up the steps or if I just stop and wait about 2 seconds, then I can take the steps correctly and not trip. Very weird. My EEG shows that I do enter REM sleep very fast but I can’t stay asleep. And with the sleep paralysis I’m sure some of it is psychological out of a fear to go to sleep bc I’m terrified of the paralysis and then seeing that shadow man. I don’t even like talking about it.
Also- my younger daughter had surgery at 2 years old due to sleep apnea and now I’m here wondering if my conditions have led to her apnea?
I feel you. I consider it an insult to science, that physicians do not grasp the concept of Orexin and the irreparable damage of the sleep wake mechanism in Narcoleptic patients.
This is so demeaning to them, to tell them “Yeah, just take a good night’s sleep and chill.”
This is like telling a Type 1 diabetes patient that their very problem is the insulin shot or wheelchair users to just stand up and have a walk. Ignorance is bliss.
A fabulous, informative and fascinating talk.
Excellent info thank you!
Elementary AT BEST... And I will not apologize
I got through this by listening on 2.0x playback speed.. only had to go back once or twice to catch something.
THIS IS A EXTREMELY SERIOUS DISEASE... ABSOLUTELY UNIMPRESSIVE
I, I, I,
CATAPLEXY...... NO CATAPLEXY... YOU WANT TO ASK ME HOW ???
WOW... MUST HURT HIMSELF PATTING Himself on the back