Narcolepsy with Cataplexy (Version 2.0)

nololtoday's webcam video July 29, 2010, 07:25 PM

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[TheDailyfiber]

It sounds like you have a very good understanding of the way that narcolepsy affects the body, particularly the brain. I have suffered from narcolepsy (and cataplexy) since I was about your age (I'm now 37); I was not diagnosed with narcolepsy, however, until I was thirty one.

Through my own experience, I have found that there are two ways (excluding medication) to help combat the 'sleep attacks' associated with narcolepsy: scheduled naps and diet (light meals).

Medication (provi

[nololtoday]

@TheDailyfiber

I was incredibly lucky to be diagnosed in my early twenties. I was brought up with a heavy denial complex so without having joined the military and been discharged with direction to seek diagnosis I would have continued to believe the accusation that I was just a hypochondriac.

I've definitely seen the benefits of light meals. I tend to snack throughout the day when I've actually gone to the store for groceries. I try not to nap too much, though, as it diminishes my night sleep

[JuiceBoxLoveX]

I myself have cataplexy. When I was little it was horrible because it just happened even if my dad pointed his finger at me .. while I find it funny I hated not being able to control it. But now that I'm older I can control it until I'm extremely tired.

[nololtoday]

@JuiceBoxLoveX

Things weren't so bad when I was young - I din't have a lot of attacks. The handful I remember were pretty bad, though. Controlling them can be tough. I usually need a nap afterward ... but sometimes the nap takes me :P

[Budmewizer]

Wow you did great, thank you, it's hard to explain to others what it's like and u nailed it. And your pain is felt. I will ask friends and family to watch this because u just told my story, thanks again.

[mucksavage2]

@nololtoday Hi there, just watched your videos about cataplexy as I've been getting similar attacks. I've always had a problem with sleeping, just thought I'd let you know your vids have been very informative and helpful to me tonight. I'll definitely be seeing a doctor to examine whether i have narcelepsy now. I also empathised with a lot of your experiences. You seem like a really nice girl, I hope you manage to cope with it all sucessfully and lead a happy life. Neil

[TheDailyfiber]

@nololtoday

I guess every case of narcolepsy is different in relation to severity, and overall physiological effects. But most people with narcolepsy, however, do have interrupted nighttime sleep; it's part of what makes the initial diagnosis difficult and also part of what makes the EDS so overwhelming. Try experimenting with two scheduled forty five minute naps, one in early to mid afternoon and the other late afternoon/early evening. This schedule helps me tremendously!

[mollydog2626]

@DanFrederiksen its the stimulation that can bring it on, maybe a kill switch that you have to push and if the person falls asleep and the switch is let go it shuts off and the brakes are put on

[ThompsonInternation]

@nololtoday well w/o actually talking to you about details of your narcoleptic situation the only thing I can do is generalize. I have practiced martial arts most of my life and when I was little my teacher showed me that meditation could help and over the years through sheer will and determination I have become hyper aware of the things that trigger my attacks. Biggest thing is strive for a goal that is SOO important to you and bigger then you.

[XoBleedingHeartoX]

@nololtoday they dont see it through bcuz of all the bs disability tries to put them thru....thank god my aunt is so smart when it comes to these things shes been guiding mom thru it and they ve tried to outsmart us so many times and have lied and my aunt would confront them bout lying and they wouldnt know what to say so they would avoid the question by changing the subject