Narcolepsy Network's lead Youth Ambassador Caroline describes what cataplexy feels like to her and how she adjusts her life to her narcolepsy. #Narcolepsy #Cataplexy #NarcolepsyNetwork
You are saying all the things I thought when I first learned about cataplexy. I thought it was normal for the exact same reasons. Glad you were diagnosed at 14. When I was 14, my doctor said it was a normal part of being a teenager. It wasn’t till I almost lost my first real job at age 22 that I went to a doctor about it again. I was part of the Xyrem study when it first became an option. I felt like it had a positive effect on my cataplexy but also with the EDS. Note to parents who suspect their kid has narcolepsy: press for testing or get a second opinion
Very well explained! I too thought my cataplexy symptoms were “normal” and that everyone did the same. For me I can laugh with no issues. But anger is another issue. Being suddenly scared/surprised. Not so much some one jumping out and saying boo, but more of witnessing a car accident, or two dogs at the dog park getting into a fight. Scared that way will buckle my knees or not allow my legs to hold me up. Being very tired. Also causes issues of not being able to hold onto things, tripping over my own feet. The only emotion that causes full body issues or closest to fill body collapse is orgasm. 😳 arms and legs will not work! Totally dead and take several seconds to a full minute to regain use! These symptoms occurred long before my Narcolepsy symptoms became disabling enough to seek out a Drs help. I thought everyone had this experience! It doesn’t happen every time. Nor with every partner I’ve had. ( I’m in my 50’s) but it wasn’t until I was 50 that I found out that it was cataplexy! Luckily with learning management techniques, knowing it could happen and luckily mine rarely happens. You can get on well . There are meds that help ease the severity. I have learned to sleep when my body says to. That way I have much less of the fumbling or tripping over my own feet symptoms. Understanding that my “timer” on when I sleep and wake is not working normally and my body will say “ time to sleep!” At random times and that I need to listen to that is important for me. If I push to keep going and I don’t lay down for a nap, that’s when I start dropping things, tripping and falling. Slurring words. Having sleep attacks where I will suddenly just be out cold where ever I am. Could be chatting with friends, driving, or walking somewhere. Out I go and don’t feel it coming on! Only waking up several minutes later lets me know I’ve had an episode. Sometimes cataplexy has a sleep attack like that follow the cataplexy attack. Well I’ve prattled on long enough about me. Great ambassador for teens!
I’m the same way! I was in complete denial about my diagnosis because I never had the head droop, full body collapse, and can laugh without issue. But fear always caused an odd issue with my legs and like you it wasn’t little fears stemming from anxiety, but real terror like when I was in a car accident. Anything that caused a surge in adrenaline would leave me in a weak or paralyzed state below my waist. But because it’s always temporary I thought that was normal! My doctor explained that what I was going through, THAT was cataplexy and what we see in movies or even UA-cam videos isn’t what we all experience and that no, what I have been going through is not the norm.
My cataplexy is severe as well. It took a long time for my doctor and I to figure out the right medication that works best for me. I've taken clomipramine successfully for many years. I haven't had a cataplectic attack for a long time.
I've had this along with narcolepsy since I was a child and apparently if you have narcolepsy with cataplexy you most likely have sleep which I've also had since I was a child they've just progressively gotten worse as an adult, unfortunately I did not get a diagnosis until I was 45 yrs old, I'm now on strong medications to both keep me awake and help me sleep, but believe it or not some days the medication does not work and I will still have an episode's my doctor has increase my daytime medication and at this point on one I'm at the highest level you can take he also has me off for a few days and then restart, it's horrible thinking I will have to be on medications all my life I'm tired of feeling this way and having these episodes, cataplexy for me is usually brought on by being in large crowds or groups like lots of excitement around me and also if I'm upset or angry I tend to start to slur my words and also feel a shift in my brain like I know it's coming.
Hello I got my results But I have to wait till Friday for a straight answer They say I have Excessive Daytime Sleepiness And they caught cataplexy on video But they haven't outright said it and its really stressing me I just called and left a message
Great explanation and advice 💗
You are saying all the things I thought when I first learned about cataplexy. I thought it was normal for the exact same reasons. Glad you were diagnosed at 14. When I was 14, my doctor said it was a normal part of being a teenager. It wasn’t till I almost lost my first real job at age 22 that I went to a doctor about it again.
I was part of the Xyrem study when it first became an option. I felt like it had a positive effect on my cataplexy but also with the EDS.
Note to parents who suspect their kid has narcolepsy: press for testing or get a second opinion
Very well explained! I too thought my cataplexy symptoms were “normal” and that everyone did the same. For me I can laugh with no issues. But anger is another issue. Being suddenly scared/surprised. Not so much some one jumping out and saying boo, but more of witnessing a car accident, or two dogs at the dog park getting into a fight. Scared that way will buckle my knees or not allow my legs to hold me up.
Being very tired. Also causes issues of not being able to hold onto things, tripping over my own feet.
The only emotion that causes full body issues or closest to fill body collapse is orgasm. 😳 arms and legs will not work! Totally dead and take several seconds to a full minute to regain use! These symptoms occurred long before my Narcolepsy symptoms became disabling enough to seek out a Drs help. I thought everyone had this experience! It doesn’t happen every time. Nor with every partner I’ve had. ( I’m in my 50’s) but it wasn’t until I was 50 that I found out that it was cataplexy!
Luckily with learning management techniques, knowing it could happen and luckily mine rarely happens. You can get on well . There are meds that help ease the severity. I have learned to sleep when my body says to. That way I have much less of the fumbling or tripping over my own feet symptoms. Understanding that my “timer” on when I sleep and wake is not working normally and my body will say “ time to sleep!” At random times and that I need to listen to that is important for me. If I push to keep going and I don’t lay down for a nap, that’s when I start dropping things, tripping and falling. Slurring words. Having sleep attacks where I will suddenly just be out cold where ever I am. Could be chatting with friends, driving, or walking somewhere. Out I go and don’t feel it coming on! Only waking up several minutes later lets me know I’ve had an episode. Sometimes cataplexy has a sleep attack like that follow the cataplexy attack.
Well I’ve prattled on long enough about me.
Great ambassador for teens!
I’m the same way! I was in complete denial about my diagnosis because I never had the head droop, full body collapse, and can laugh without issue. But fear always caused an odd issue with my legs and like you it wasn’t little fears stemming from anxiety, but real terror like when I was in a car accident. Anything that caused a surge in adrenaline would leave me in a weak or paralyzed state below my waist. But because it’s always temporary I thought that was normal! My doctor explained that what I was going through, THAT was cataplexy and what we see in movies or even UA-cam videos isn’t what we all experience and that no, what I have been going through is not the norm.
My cataplexy is severe as well. It took a long time for my doctor and I to figure out the right medication that works best for me. I've taken clomipramine successfully for many years. I haven't had a cataplectic attack for a long time.
I've had this along with narcolepsy since I was a child and apparently if you have narcolepsy with cataplexy you most likely have sleep which I've also had since I was a child they've just progressively gotten worse as an adult, unfortunately I did not get a diagnosis until I was 45 yrs old, I'm now on strong medications to both keep me awake and help me sleep, but believe it or not some days the medication does not work and I will still have an episode's my doctor has increase my daytime medication and at this point on one I'm at the highest level you can take he also has me off for a few days and then restart, it's horrible thinking I will have to be on medications all my life I'm tired of feeling this way and having these episodes, cataplexy for me is usually brought on by being in large crowds or groups like lots of excitement around me and also if I'm upset or angry I tend to start to slur my words and also feel a shift in my brain like I know it's coming.
Hello I got my results
But I have to wait till Friday for a straight answer
They say I have Excessive Daytime Sleepiness
And they caught cataplexy on video
But they haven't outright said it and its really stressing me
I just called and left a message
Any updates?
@@rebeccahenderson2983 yes I have narcolepsy with Cataplexy