LIVING WITH NARCOLEPSY: My Experience Having An Auto-Immune Disorder

hey everybody its lo and welcome back to my channel love without limits today I want to share with you a little bit more about narcolepsy so if you want to see that and just keep watching [Music] all right so if you follow me on instagram you'll see that I've been posting a lot about narcolepsy especially since its March and it's autoimmune disease Awareness Month and today the day that I'm shooting this is Saturday March 9th so it's actually narcolepsy Awareness Day also known as suddenly sleepy Saturday so I figured today would be a good day to shoot it but of course I upload every Wednesday so you're seeing this a few days later but I just wanted to take this opportunity in this time of the year to share a little bit more about narcolepsy and since I do have it I've been living with it and just kind of spread awareness and share that there are actually a lot more people out there with it than you may think so I just want to start off by saying the narcolepsy isn't like you see and like comedies and everything I think mr. bean who would just like fall and like fall asleep and get super tired so when people think of narcolepsy and tell them like oh well it's because I have narcolepsy then they think oh my god you just like fall asleep anywhere I think are you gonna fall asleep right now no because I'm on a medication that just keeps me awake but I have had a lot of kind of close calls with that and I have been driving and I do get into sleep paralysis so just a really quick and background I was diagnosed with narcolepsy in 2015 the end of 2015 when I was 20 years old I'm 23 now so that wasn't too long ago and I actually don't know how long I've been living with it beforehand some people say that it could be something that you're born with or it's something that comes on later in life nobody knows what triggers it and nobody knows what really causes it some people say that it could be from a strep infection or some type of infection that gets to the brain and just like throw something off and I did get strep a lot growing up I was pretty clean but for some reason every few months I'd always just get a really bad case of strep so it could have been something that I was born with or something that came on as I was getting to say or just growing up so I as a baby my mom thought she was super super lucky because I would sleep through everything my parents were taking me to the Hollywood Bowl I'm passed out my mom was like I have a great child she doesn't cry she was all mine at all all that changed with my sister who cried and whined a lot that was a great shot and she thought I'm so lucky and then in elementary school when I would be dozing off and I would be super tired all the time my mom was like you know it she's a kid she's growing kids need their rest same with in middle school and in high school I was doing International Baccalaureate classes I was playing volleyball you around so I'd come home and I'd be tired and I want to fall asleep all the time I'd be dozing off in my classes to wear my Spanish teacher one year that called my mom was like hey like she's falling asleep a lot maybe get it looked at through mom just thought she's taking a hard classes she has to take classes after school she's playing volleyball like it's just she's growing she's tired like she's really spreading herself then and I hated that I would just take naps and I would come home and try to do my homework and I would be sitting on my bedroom floor doing my homework and I would pass out and I'm a very tightly person and I'm very like go go go get all these things done I can make all this list I'm gonna get it done and then to be doing all that and then just feel so tired and like fall asleep and then wake up an hour or so later I would be so upset with myself and like my anxiety would just be even stronger because all these things that I want to get done all all these lists that I had oh I just wasted an hour of it nothing like who wanted like to me that's such a waste of time and then in college it kept happening and I actually started getting really busy paralysis going into college and at that point my mom was like okay you're not playing sports you're taking classes whenever you really want like your schedule isn't jam-packed something's an issue here so I talked to my doctor about it I did a sleep apnea test because they have to rule everything out beforehand don't have sleep apnea which they were like could have figured but you never know and then I had to go to a sleep study and I slept there all night and I had to take five knots throughout the day and that is when they discovered that I have narcolepsy so narcolepsy your brain goes into REM sleep super super fast in REM sleep is a rapid eye movement and it's a lot of the times when you dream so that's the only part of the night when you're sleeping that you're actually dreaming and your body is paralyzed but your brain is wide awake just work in dreaming doing its thing all the other sleep cycles I'll show a graph like a normal sleep cycle here all these other ones are when your body you might be tossing and turning a bit but your brain is out so for me I after taking these studies they saw that I went into REM sleep after 15 minutes should take someone 90 minutes they're in there for a few minutes they have a nice little dream go back and do all the other ones I got in there so fast and I finished stayed there a bit longer than I should have so some symptoms of narcolepsy is that I would experience we're just a lot of sleeping that's where I want to take naps but I also get a lot of sleep paralysis and sometimes that would come on to me at very inconvenient times one time when I was driving and I had someone else in the car and they realized that it was kind of suburban so I was on the carpool lane in here that Detective going over the bumps and they're like Lauren get it like wake up they drove the rest of the way so it happened then and it would happen in class I would be sitting in class and I remember I went with one like so vividly that my teacher he was just like drawing like the marks on the board he wasn't like drawing anything specific or writing on anything specifically he was kind of like reenacting something was this these lines on the board and in this classroom there were doors on each side of the whiteboard and then the chairs kind of like face the whole at wall and I was sitting in the front row and I saw what he was writing on the board I was listening I was taking notes to the super-intense class and all of a sudden the things on the board were just kind of like moving just like these red lines moving and I saw people like walking in and out of the classroom and just all these crazy things and I was just sitting that like in shock I was like what's real what's happening why are these things on the board moving car people are really coming in and that's what's really hard about sleep paralysis especially just during the day is that you don't know what's real and what's not especially when it seems so realistic so thankfully guys say next to me I knew him I really well he was like hey oh my god and I was nervous like kind of drilling a bit and but my body was just frozen and I just like was freaking out internally like is this real what's going on what's happening and it also happens a lot at night so even if you don't have narcolepsy you may have experienced sleep paralysis at night where you're asleep in you're literally paralyzed and you can't move but you think someone's in there there's something on top of you I mean you can't breathe so I've also experienced that a lot so it's just kind of like you're frozen or my brain that's like our aliens real or is this a dream trick question okay I was just like freaking out in US so this is happening during the day a lot and basically what sleep paralysis is is when you're awake but a REM asleep kind of comes on into you so you're a paralyzing you're awake but that your brain is also like going into this dreamlike state that is a REM sleep so when those two things just collide you really have no idea what's going on and it's terrifying now into the sciency part of it over what is narcolepsy and what kind of causes it and how does it happen so there's no real reason or no known reason of what causes it they don't know if its genetic again if it's something that comes on with a disease or if it's just something that you're born with and it starts to show itself either early in life or later in life so there's not enough research on it of what causes narcolepsy and because they don't know the cause they can't really find a cure so the medication I take is literally just to keep me awake throughout the day it's not to cure it or to reduce the narcolepsy in any way and now I'm no doctor or scientist I didn't study that but I do like to look at different research papers especially on narcolepsy and different autoimmune diseases and disorders and so I know a little bit through that but again not a doctor this is just stuff that I research and that I know through the interwebs not there any schooling I studied television broadcast journalism quite the opposite thing but I did take a few notes just so I can explain what narcolepsy is without screwing it up completely what they've discovered is that it's caused by the lack of the brain chemical hypocrite in I write that out for you they're also known as orexin which is the chemical that regulates sleep in your brain I believe between the hypothalamus this deficiency is thought to result from the immune system mistakenly attacking parts of the brain brain that produce those chemicals so basically my brain will produce the chemicals that will regulate my sleep-wake cycle that it's like oh I'm awake during the day at night I sleep at night when I sleep I have normal brain happenings and why half that my brain automatically just like kills it off don't know why it's just like yeah we don't need you know Mike it kind of do I would like it but you know to each their own I suppose so because of this because the brain is attacking these chemicals that's right as classified as an autoimmune disorder so people kind of go back and forth on that because they're like oh it's not really since we don't entirely know but if research and studies are saying that your brain is literally producing a chemical that's to help you and your immune system swimming in your brain is like I like to think that's a automate disease or disorder so because of that I do a lot of research on my free time on that as well also be as my mom and her sister both have rheumatoid arthritis which is also an autoimmune disease so I know that if it is something genetic maybe I'm genetically inclined to have an autoimmune disease and that this is how it showed up in my body versus rheumatoid arthritis just living with it today again like I said I take a medication to keep me awake so I take one as soon as I wake up and one around lunchtime but I can't take it 30-minute like I can't eat thirty minutes before and after taking it which makes lunchtime a little bit hard because I snack a lot so from snacking is 12:15 I'm like okay I got a hold off till 12:45 didn't even listen and then I can't eat like again until 1:15 and I like to eat so it's kind of an issue and I do try to take like a little drug called is what they call them where I just don't take it - so my body doesn't become um used to it and I don't want to build up a tolerance to it so today is the suddenly sleepy Saturday I did take my went this morning so I can be a productive human being but makeup on shoot a video or two and then I'm not going to take my afternoon one and I'm just gonna kind of live my life and I want to pass out at 6 p.m. so be it I'm trying to do everything now while I have the energy to it and another thing with this medication is that when I do decide to have children I can't be on it so speaking in the future obviously I don't plan on having children anytime soon but as soon as I start thinking about children I need to come off of it so it's out of my system and it can't be on it while I'm pregnant and probably not well and breastfeeding either so that is maybe like a year and a half almost two years of just not being on my narcolepsy medication and honestly when I don't take it for a day or so just it's actually like really hard just to like function because everything I do is just like slower that my brain like doesn't pick up on things and it's just like very like sluggish or tired it's almost like if you haven't slept for like two days you employment all-nighter or something and it's been like two or three days without sleep because that's how people with narcolepsy feel it's not like their brain is in this constant state of just like exhaustion and you know when you can't you don't sleep for two or three days you're just like brain power it's not there it's just like things come to you and it's just like off off it goes whoo right over so the thought of one day wanting to have kids and like I want multiple kids I'm gonna have to do this multiple times and not take my medication to just like live my day-to-day life like I should not legally drive without my medication because I can't stay awake long enough and there have been times like I'm driving and I just like hot I couldn't do it and when I first got my diagnosis for narcolepsy they put me on a different medication at first which at the time I was also stolen birth control and for the two months I was on that I had a two minutes long period TMI but it was annoying and I was still exhausted like I would get to my internship and I would like be so exhausted I was at ABC 7 and across the street was Disney's Grand Central creative campus and on that campus they had a Starbucks those block away and were one morning I got there early I was like I'm gonna go watch the Starbucks get myself a coffee and then walk back and on the walk back I like my body was just so fatigued I couldn't do I had to sit on a bench for like ten minutes before I could get enough energy to get back to our office and then take another medication even though it wasn't time to take that yet and there have been times even just like at work a few weeks ago we have to go on a target run I didn't bring my medication with me to take for the afternoon so and I didn't know that except the run was gonna take as long as it was and I was like I have to sit down like I'm gonna go sit over by the elevators anything you guys are done like let me know because I can't physically walk around a target anymore like I'm dying and like my whole body it just feels really heavy it's like that feeling when your eyes get really heavy when you're so exhausted at night except for my whole body's just gets so so happy and I was like I can't do it but it is good that I'm aware of it and I just do like listen to my body like if I can't do something if I'm exhausted like I just need know to go sit down to not drive anywhere or do anything and at the time when I was on the old medication and I would be driving back home to Orange County from decent Disney and abc7 in Glendale I would have to call my mom and talk to her for the POE like two and a half hour drive just because like talking her like kind of kept my brain awake and just like kept my brain a little bit more stimulated and enough to get myself back to my house which was just like craziness and the thought that for a few years like in the future that I won't be able to have any of that is it's kind of like hard to think about so that's just where I'm at right now is trying to hopefully build a career to where I can work from home and I can just like live without any medication just live with narcolepsy even though it is really hard and like it's hard on work even on those days when I do have to like post like I ate a snack something okay I do have to postpone a little bit before taking my second medication but in that time they'll like my body like if it's 2 p.m. and I haven't yeah and then like my body is just exhausted I'm like thank God I just sit at a desk so it is really hard and like I am so young and I don't want to have to rely on it every single day for the rest of my life so that is also why I like looking into autoimmune research to find the ways of eating and changing my life and changing my lifestyle habits in a way to reverse any type of like autoimmune thing and hopefully ideally reverse what my brain is doing that is creating an art love see and if I can do that then it would be great and it would be amazing to be able to live my life normally without having to rely on medications and to be able to one day have a child and be pregnant and not feel like my whole life is just like lying in bed because that's also what I'm scared of it's like kids like take all the energy away from you and you're pregnant and then not having any of that and like already being exhausted it is just kind of a bit worrisome for me so I don't know it's just something I have to deal with some they have to think about but I just want to share my experience with narcolepsy and just kind of how I got diagnosed and how my life has been since then and how my life is looking in the future and it is hard but I do hope to just continue to do research to expand what I know and share what I know and hopefully eventually help out the rest of the narcoleptic community and you know when I do pass on this is anything that please donate my brain for research thank you so if you like this video please give it a thumbs up comment down below if you also have narcolepsy or any other type of autoimmune disorder and if lifestyle changes or diet changes have helped you out oh I would love to know that also leave any other like links I love looking at different studies I love looking like PubMed and like searching for different like narcoleptic research and stuff so I love that so if you have any of that please please please leave it down below I'll also leave a few that I really like looking at linked in the description box and while you're down there be sure to subscribe because I do upload a new video every Wednesday till the next one thanks for watching

Channel: Lo Without Limits

Views: 27,295

Rating: 4.9276018 out of 5

Keywords: LIVING WITH NARCOLEPSY: My Experience Having An Auto-Immune Disorder, narcolepsy, narcoleptic, sleep, sleep disorder, suddenly sleepy saturday, narcolepsy awareness, auto immune, auto immune disease, auto immune disorder, lifestyle, diet, los angeles, california, mr bean, sleep study, research, nap, anxiety, mental health, health, healthy, healthy lifestyle, strep, virus, brain, brain research, sleep paralysis, dream

Id: 2EVvHEkXEPc

Length: 17min 54sec (1074 seconds)

Published: Wed Mar 13 2019