Hey everybody! I'm Billie and I have Narcolepsy. I make videos every once and a while, mostly about narcolepsy. Hope you enjoy them and maybe learn something along the way.
Thank you for this video. My 17 year old son is experiencing this. This weekend was bad. As a mom, it's hard to watch. He fell to the ground while making a joke. It's good to see someone with a positive attitude about the whole thing.I do have one question, do you drive?
Yeah I drive. I live in an area without much public transportation. I have made rules for myself that I've kept for 5 plus years now. 1. I don't drive when I'm tired(I usually take wakefulness meds right before I do much driving) I've been known to even take a nap in my car. I've even turned right back around to nap for a second time because I thought I was ready but was not. 2. I don't drive on my own more than an hour, give or take. As for the whole cataplexy/driving issue. It really helps to abide by the law when driving that way I don't get nervous when I spot a cop car. As I stated in the video, I've had many years of experience in not letting things get to me. This helps when other drivers are tailgating or doing something else crappy. I just try not to get bothered by it and let them pass or I back off them. I know how easy it can be to get startled when driving so I would just caution a young driver or any driver really, to constantly be on the lookout. Know what you'll do in every driving situation. The only time I've had a vehicle/cataplexy issue is when I was a passenger and our vehicle was hit. Hope this helps.
I have ONLY cataplexy, withOut Narcolepsy, It is COMPLETELY different. You have Narcolepsy, cataplexy is part of that! with Cataplexy your muscles go completely Limp and have no strength, paralyzed is when you can not feel anything. there is a difference. I have done my homework, and you should too. i am not trying to be mean, but you are partly wrong on a cataplexy person. I should know. I have that RARE thing called Cataplexy. it sucks too, Im grateful I do Not have narcolepsy. please dont think im being mean, I must make people aware. I just havent found ANYTHING that says what you say cataplexy is. just curious, Is that what your Neurologist told you?
This sounds more like my son. He has a sleep study scheduled this week. I really need correct info. We have just discovered this with him. It's hard not to freak out!
OMG!! I have been struggling with E.D.S. for YEARS. My doctors have no idea what is wrong with me. I just feel this need to sleep whenever the sun is out. But then I get confused because even if I fight to stay awake during the day, at night I am wide awake sometimes and I just don't understand it. People just accuse me of being lazy. I was told I have C.F.S. But I was never sure that was it. AFter seeing this video, it's like bam, that's it!!! I am going to talk to my doctor about all of this and see if I can get him to understand. THANK YOU SO MUCH TALKING ABOUT THIS!!
Ha! It's Christmas Eve Day, and I just watched your vid. Thanks for putting yourself out there! It was a very entertaining and informative vid. I'm on day 5 of Xyrem, and now I know I'll be able to awaken if there's a fire! Definitely a miracle drug so far :D
Great video! Thanks for sharing your thoughts. Its amazing to find out the incredibly affinity of the narcoleptic in just a few experiences. I guess I will have to buy Julie's book tomorrow and read it myself. By the way, you mentioned a Network or something?... I would also like to have the opportunity to talk to other people with the same condition and exchange, comments, other experiences, about treatments, news on medications, not traditional medicine... Would greatly appreciate the help!
Wow your schedule is so different from mine lol. I take my dose, then I wake up 3.5 hours later, take my second dose, then I have to sleep for another 4-5 hours to feel 100%. I've been on it 2.5 years :) it's a lifesaver!
Hey, cool vid. I was quite afraid to take it the first couple of times. Question: can you even get to sleep without Xyrem? I've been taking it for about 3 weeks now and sleep great. But inbetween the doses I'm wide awake. Still on the lowest dose (2.25, 2 times a night), works for like 1,5/2 hours sleep per dose.
I hallucinate ALL the time, and sometimes i dont even know when i do until i confront a situation that i thought happened and it didnt because i had hallucinated the memory... this is the scary thing (though none of them are scary i only seen or hear / have memories of conversations that are real... like a convo with a friend ect...) also i have only seen things like a deer running down the road once, and a cat walking around the room.... I have narcolepsy.
Thanks for making this, it will inform more people about narcolepsy... Very informational, nice to meet more people with it, via internet, though sad to hear you suffer too!
thank you for this video, it is super motivating. I had an attack in english and everyone just sort of thought i was taking a while to answer haha so this video has taught me a lot thank you!
I recently discovered that I might have cataplexy. I have all of the symptoms but I am going to a doctor to be sure. I collapse during the emotions of sadness and anger. I also lose control of the muscles in my neck and become dizzy when I laugh. I have a few of the other symptoms but I wanted to keep my comment short lol
I like your videos! Hope you post one today for Suddenly Sleepy Saturday!! Maybe an overview of Narcolepsy? Thanks for uploading them!! I subscribed to your channel :)
I love your videos and most of them end up being a link in my Facebook group 'Narcolepsy Friends'. Thanks for the videos you do, it helps keep the topic of narcolepsy alive. :) Og and what is your name on Facebook again?
Another good video mate. I was on this for a while but my put on a load of weight and got high blood pressure in the end. But it is a good clean drug and little to no come-down from it...
Oh, Billie, I'm so happy for you and super excited Nuvigil is working for you! For me, Nuvigil is great and I feel motivated. I'm so glad you finally found the caramel for your apple!
also do you know of any support groups or anything? im having a harder time dealing with this then i thought i would, but all these forrums are completely useless, noone will ever get back to me and ive tried all the sites my doctor gave me..none of them help...ive been going everywhere looking for something, which is how i found you lol
i have both types..i got diagnosed because of them too. i dont have cataplexy so it was hard for them. i see people standing over my bed they dont have features at all theyre just black figures. they even touch me and shake the bed...i thought the lucid thing would make it better for me too but it actually made it worse and even triggerd paralysis.
Your welcome mate, I enjoy watching what you have to say about your narcolepsy. They are wonderful videos so I put them up in my facebook group, 'Narcolepsy Friends'. :) Hope you are having a good day today babe :)
I love this video! Thank you so much for posting. I have cataplexy and this video helped me feel more positive about the whole.. "dead cockroach" thing. Your attitude towards it all is great I hope I can learn to accept it as much as you have and laugh about the situations rather than make them worse by stressing.
thanks for this video! its great to hear other narcoleptics talking about this kind of stuff, because i really believe it makes it easier when you know other people are experiencing the same thing! especially since symptoms other than sleepiness and cataplexy get ignored a lot when people talk about narcolepsy...
