Michael J. Thorpy, MBChB: The Subtle Manifestations of Cataplexy
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- Опубліковано 7 вер 2024
- The director of the Sleep-Wake Disorders Center at Montefiore Medical Center spoke about one of the major symptoms of narcolepsy and how to identify it during diagnosis.
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I like to describe it like having butterflies in every single muscle,
Like a weak feeling? Can this happen without a connection to an emotion do you know?
I wish mine was that subtle. Mine's full-on paralysis, blindness, collapse, unable to talk or move for minutes at a time, several times a day.
I didn’t even realize I had cataplexy until the sleep doctor asked me if I ever had muscle weakness with a positive emotion. For me, if I laugh my knees get weak and I have to eventually sit down. If I keep laughing I would eventually fall off the chair and the muscle weakness would just keep spreading. I never had it go that far because I would stop laughing. Once I was diagnosed with N1 I couldn’t believe I really had this thing called cataplexy.
I let my family know that was gonna do an experiment and if I start laughing then don’t distract me. So one night I did. I laughed and didn’t stop, eventually fell off the couch because I couldn’t hold myself up, my face muscles felt paralyzed but I could still see and breath. Once I hit the floor I stopped laughing because it kinda scared me. Then my muscle strength came back.
As a person with severe Narcolepsy with Cataplexy I agree.
Without my medications I fall down and collapse more than 20 times a day. With them, I still have these mild forms of cataplexy such as slurring and small twitches/spasms.
I have severe idiopathic hypersomnia. Dx about ten years ago but Dr thought had Narcolepsy except the daytime test didn’t quite show it, however on a medication that suppresses rem sleep (anti-depressants). I fall a lot, and get weird “melty face” and lots of twitching and spasms, lots sudden slurry voice and weird spells where suddenly not able to move really, like heavy body except breathing and my eyes can move very few times (slow, like gapped out wide eye, can’t snap out of it). The only thing I can liken it to is sleep paralysis like what I used to get a lot but since on adhd medication in daytime, it helps my sleep paralysis during nighttime (coincidence maybe). I just saw your comment and never thought the twitching (also facial twitching) might be related to cataplexy.
Also have type 1 bro, feel ur pains
Very intelligent Dr. I believe family physicians especially need to be educated on how to recognize subtle signs of cataplexy.
I agree. I had a general doctor think I was making up the word cataplexy. He made me type it into his database and see what shows up. They didn't have it in their system. That was back in the early 2000's and I hope he's more educated now.
Agreed!
I've had Nacrolepsy/Cataplexy since a kid (now 23), I've experienced the more extreme cases like falling over and feeling paralyzed for up to minutes at a time but also the small side effects like weird facial twitching and my knees feeling weak.
I have narcolepsy 1 and cataplexy was always one trigger (laughing) then when I turned 50ish all hell broke loose. My dog was nearing a boundary with no gate, I went to call out for her when it hit me like a ton of bricks sending me to the ground immediately and now if I even try to swat a fly, I am on the ground. EVERYTHING is a trigger now and I am exhausted, truly exhausted
My hands go really weak that I can’t wright and I start laughing
Yesssss! I lose all strength in my hands when I laugh. I thought this happened to everyone my entire life I can’t hold or grip ANYTHING when I feel to or actually start to laugh. I’ve absolutely no grip. My legs become very weak and it’s as of all my muscle strength disappears accept stomach muscles!
@@teebellerina8783 I experience that as well! I only experience it in my hands when laughing. I've noticed it since I was little but thought it was normal. I've only just recently been diagnosed at 18.
I have cataplexy and its not fun anymore... i often fall to the ground🤕
Proptriptylin 20mgs a day keeps my cataplexy at bay and i live a normal life i had severe cataplexy and narcolepsy
I notice this would happen to me after I force a sneeze out. Hence I think it got something to do with brain getting shocked or vibrated.
Also isn’t it true that cataplexy can present very infrequently?
Ok so i want to confirm, I don't fall asleep or fall on the ground but my left leg and left hand and left part of the head stats to bend sometimes. Sometimes if i focus i am able to actually prevent them and sometimes it happens. So is it cataplexy
Mine is like this.
Hmmmm. I was only diagnosed with cataplexy , not narc.
Same. My mother has narcolepsy and my doctor said there is a chance I will develop sleepiness over time. All of this stuff is so fascinating and frightening.