Purpose(fully) Living With Narcolepsy | Angie Collins | TEDxYouth@TCS
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- Опубликовано: 28 май 2015
- Ever find yourself feeling tired? Angie knows how you feel. In this talk, Angie explores how she has come to lead a satisfying and successful life while living with narcolepsy.
On Angie’s kindergarten report card, it was suggested that she had difficulty accepting defeat. Her first teacher likely brought forth this observation in an attempt to bring attention to something that needed to be tamed or eliminated - not a chance! Thankfully, this innate and deeply cherished character flaw, coupled with the strong belief that social norms are to be challenged, not followed, has provided Angie with a strong foundation upon which to navigate a life with narcolepsy. Through this diagnosis, Angie has learned that by "doing it her way" she can have superhero abilities allowing her to teach Health and Physical Education at TCS as well as compete internationally in two different sports. She is committed to self-care and models it for her son - her favourite person in the whole wide world. Angie strives to redefine success in our society through who she is and her belief that it is our contributions, in spite of adversity, that make us who we are.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx
my experience of narcolepsy is like having a brain that is like that flickering light in the hallway between being asleep and awake. i quite often don't know where my dreams end and my awakened state begins. and am constantly tired. it's like living on the borderlands of consciousness, almost getting to sleep and almost waking up...i typically feel like i'm waking up at 10pm after having felt 3/4 asleep all day at work...
As a person who has narcolepsy who has been misunderstood, thank you for your inspiring words.
I live with narcolepsy and I was feeling down, thank you for the words, it’s so difficult not being hard on myself and comparing to my classmates and blaming me
Thank you for providing this TED talk. As a person with narcolepsy, it is hard to explain the symptoms and how it impacts my life to others. So much of what you shared resonated with me.
thank you elizabeth hickey for all the help you have you have given me as a fellow narcoleptic and keep up the good work at nodss
as a narcoleptic i can understand this. as a normal person, i'm not sure the channel surfing explanation is the best analogy.
Adarsh Narayanan yeah I think she tried to hard to sound smart. I would of just said look mother effers imagine walking through the store and out of nowhere you start yawning over and over and your eyes water so bad you can't see and all you want to do is go to sleep. Boom that's nar. Or imagine before you go to bed and how tired you are, but that's how you feel waking up and having to go on with your day. Drop mike walks off and goes and buys a ice cream cone.
Is that really how it's supposed to feel like? If so I might just need to consult a doctor
Super gnar
@@BeeBopGaming lol! More like you feel you are going to go insane if you don't go to sleep.
"thank you for staying awake, and for those who did not? I've got your back." Made me tear up a little bit.
Also, I don't think I would have noticed this had I not been struggling with cataplexy myself, but you can hear it in her voice at times, the slight barely noticeable muscle weakness when she gets a little excited about her speech. It's midly interesting to me, is all.
Same 🙏🏽🥲
Born in 2006, I first started showing signs of Narcolepsy at the age of 3 (caused by the swine flu vaccine) and was only diagnosed with Narcolepsy without Cataplexy 4 years ago (I am now 15).
Hearing other people’s experiences with Narcolepsy is something that has really helped me come to terms with my condition. I can relate to pretty much everything you talked about and it really helped to know that I’m not alone.
Thanks for brightening up my day.
Did the doctor tell you it was the vaccine that caused it?
How do you know it was caused by a vaccine? I’ve researched and it seems like the Medical Establishment does not know exactly what causes narcolepsy…
This was nice, very good. I’ve been aware of having/living with narcolepsy since about 2010. I gave up on managing it shortly after diagnosis. I viewed it as “not being a real problem” or “oh well I guess I’m just tired all the time.” I tried harder to live life like everyone else. I thought I was doing great until a friend yelled at me, begging that I see a doctor and get help. That was about 2 years ago. Even after that, it’s only until recently that I’ve taken the time to understand narcolepsy for myself and realize that I’m not normal, and that it is okay. Most importantly I’ve learned to add narcolepsy to the list of things I need to be kinder to myself about. 💜
Great to think positive! Although I do advise to see a dr. The meds help me tremendously and sometimes you never know when you need a dr note to keep you out of trouble at work or school. Goodluck :)
@@gigilove1721 so true! I did end up getting a dr note too, very helpful indeed!
I've been narcoleptic with severe cataplexy (known as status cataplecticus) since I was 7 years old. Diagnosed at 12. Now 36. On bin loads of medication but for me it's a small price to pay in exchange for being able to sit up and walk without collapsing constantly and be able to boil an egg without waking up to the sound of an eggs-plosion, a burnt pan and a foul smell that lasts for hours. (happened many times) When people ask me what sort of places I have fallen asleep, I tell them, there is almost nowhere that I have been and nothing I have done where I didn't fall asleep at least once. Contrary to popular belief, medication is in no way like having some sort of cure. It makes the symptoms slightly more bearable to live with and thankfully for me, prevents my cataplexy for most of the time but a lifetime of having to take hardcore drugs every few hours and the effects of that on the body and mind really isn't like occasionally taking a tablet for a headache.
(although it must be noted that not all narcoleptics have all these symptoms and not all narcoleptics take medications, it varies massively from person to person)
Lucky for me though, I am an expert at doing stuff in my sleep. Even Belly Dancing, which is my job :)
FYI: Things you should avoid saying to me. "You look tired, have you taken your meds?", "I am tired all the time, I probably have what you have"
"If you are feeling sleepy, why don't you take a nap?"
"If you slept better at night, maybe you would feel better during the day", "Have you tried >Insert essential oil here
LOL. Great humor- yes, absolutely please don’t tell me that if I’d just go to sleep on a schedule, take naps, cut out caffeine from my diet, drink warm milk (yuk), your dark circles look like someone punched you,
I relate to the section of “things not to say to me.” Sleep disorders are so misunderstood, and it leaves lots of room for unsolicited medical advice. Yes, gym bro Kyle, I have tried exercising, no it doesn’t give me more energy, it actually leaves me more exhausted the next day. I do try to eat healthy, I do go to bed around the same time every night, no I don’t wake up through the night- I sleep like a rock. So what’s the problem? Oh yeah, that thing called narcolepsy that I told you I have that you completely ignored and then proceeded to recite the top google results for “how to get a better night’s sleep” at me.
It’s also a little disheartening as a relatively newly diagnosed narcoleptic to realize that 99% of the medicine used today is to manage symptoms of sleepiness and there’s no actual remedy for the quality of sleep we’re getting really. I’m hoping continued research can help come up with a better solution.
Loved this. 3 months after my narcolepsy diagnosis I was diagnosed with rheumatoid arthritis, combine that with chronic migraines left from the sickness that triggered my narcolepsy and I’m here to say life IS hard! It’s a daily struggle to get meds, doctors appointments and manage flares of pain that knock me out. Co-morbidities are more common than people realize.
At 10.08 she is struggling, but manages to keep going, brave girl.
I looked up "narcolepsy" and only this _eight_ result was from someone with it, instead of an outsider's perpective, susceptive to missrepresenting.
Wow
Keep up the good work.
Ive had sleep disorders since i was 5( sleep walking & sleep eating) , a week short of my 20th birthday i was diagnosed with Narcolepsy, it finally started to makes sense. The hallucinations and sleep paralysis that cause panic attacks, the fact that i would wake up multiple times a night aside from sleep walking, having to take insane amounts of caffeine to function. Now I'm on Provigili to keep me awake and clanazopan to put me to sleep. I have never felt so normal in my life, i didnt realize that it wasn't normal to feel the way i was feeling every night. I love this
Right there with ya! Especially the automatic behavior and food. Not to mention making my roommate hide my car keys at night so I can’t drive my car. I never live alone because of that and my hypocognic dreams. Need help from time to time.
Wow Angie! You make me proud to be a narcoleptic! I have suffered undiagnosed for 18 years before my diagnosis in December of 2015. I really believed I was crazy mentally unstable. I was labeled a hypochondriac! I did not even fully disclose all of my symptoms with family and friends for fear of having ne committed. I was very successful in business and I hope to be again. For now before diagnosis narcolepsy took my success from me. I could not explain my behavior and since being around people was what I needed to do I just quit! I have returned since diagnosis to my business however I started xyrem this month. Xyrem is another challenge that is difficult to explain to normal people! You inspire me and give me hope! Great TED talk!!
+Elizabeth Lines Thanks for the message Elizabeth. You are too kind. Tell me, how is the Xyrem going? I wish you all the best.
After 14 years with no diagnosis I have been taking Wakix for two weeks now and I do feel it helps a looooot during the day. I was wondering if anyone had experience with it, so far only side effect is a a feeling of paralysis and hallucination while falling asleep but it seems like a small price to pay so far considering the improvement during the day.
I can relate to almost all of your comment. Wow. Thank you for sharing this❤
How are you doing now?
just got diagnosed... for all these years, doctors have shoved antidepressants down my throat... they have blamed it on my fatness... or literally accused me of being a hypochondriac. this disease perfectly encompasses my symptoms. all the googling in the world never would have found it.
ChelseaRae Weaver I just got mine too. It's so easy to look back and want it different...
ChelseaRae Weaver
Me to.
It's heartening to hear others tribulations.
My way of explaining it is:
_I'm handicapped. If I didn't give this handicap you wouldn't be able keep up!_ 😎
My doctor is starting the process of testing me for narcolepsy. What type of symptoms did you have? I've been told I was always exhausted because my life is busy, been told to fix my diet, been told to work on my sleep schedule. Exhaustion is the primary feature of whatever I've got, plus some odd physical sensations that may or may not be the same cause. I don't have hallucinations visually- as far as I know- but very likely do have auditory hallucinations. I've literally been seeking an answer to this exhaustion for four years (and now that I think back, even before that I'd be so tired I'd skip school 1 day a week, or fall asleep hanging out with friends). Now generally I can get through the work day without taking a nap, but I never quite feel awake and sleep like 30 hours on weekends.
I ignored symptômes for years, convincing myself it was normal and developing strategies. I was told multiple times it was hormones and or asked if I had depression. After 14 years of symptômes I have a diagnosis and taking the right meds. Knowledge is power.
@@530Paradise Hey, I would say she explains most of the symptômes quite well in the video but it can be different for everyone. In my case I do not faint when I laugh but loose muscular strength so it gets harder to stay up straight loosing strength on my knees and facial muscles. I have ups and downs during the day on energy levels, when I don't move like class, a meeting or public transport I will fall asleep, what she calls automatization is real you can sometimes eat and walk without truly being there. The waking up several times a night. Only a good neurologist and a EEG test can help you get the right diagnosis. All the best.
When I was diagnosed at 19, it made sense for my whole adolescent life. I am 26 and still learning how to live my best life with this. I try to not do work sitting down, I have struggled with a lot and I I hope to learn more this TED Talk
LOVED THIS!!! Thank you so much! - Diagnosed with narcolepsy at 17, almost 14 years ago. Felt like you were describing me with a lot of what you said! So cool! :) Wishing you as much encouragement as you just gave me!
I maybe an oddball, but I actually embrace my narcolepsy.
Sure, it's debilitating and I really miss working (kinda!) but I needed the time out to find myself and heal my mind.
I'm a totally different person now and in a strange way, I've made the most of it.
I have narcolepsy but I’m thankful it’s way less incapacitating that what is described here!! You’re a rockstar!!
I was diagnosed with. severe Narcolepsy w/ Cataplexy in 2014-15. I had it so bad that falling asleep in the middle of football practice and while riding a mower. I had those hallucinates while mowing I thought I was going to hit a car then realized I was in the middle of a field... it truly is terrifying when it first happens... and unfortunately I love laughing but I was forced to keep myself from laughing cause I have actually given myself concussions from Cataplexy making me collapse and hit my head. The struggle is insane.
Major_D_56
But u Fight to the best of Your abilities And God helps Us! I love doing are Editing I find it keeps me AWAKE doing the Things I Enjoy But if I Fall asleep I'm With Good Company they make sure I'm okay!
You're good at this! Great ambassador. Upbeat, positive and living your life in the way that it works. Keep spreading this message. It's difficult, but living positive vs. as a victim makes life a terrific adventure doesn't it? You have to laugh, it's what gets us through this crazy existence. Gives us our unique perspective that only we "get". Your message gives other PWN hope. Consider more videos. And we all know how hard it is to get up and do it. Applause to you!
Thank you kindly Susan! Yes laughing is key!!
I only recently got diagnosed with narcolepsy. I’ve had signs since I was younger, but it hasn’t significantly affected my life until the past year. I always did well in school, but it has been harder to pay attention, partially due to ADHD which I had also been diagnosed with, and have had sleep attacks at work. I’ve never actually fallen asleep mid-task… or so I have thought.
The scariest thing that has happened recently is actually pretty minor on face value. I have a plant stand that has a little spray bottle I use, and it had been empty. My nephew had been playing with it, so I remember putting it back on the stand still empty. A couple days later my sister-in-law said she moved it so he wouldn’t touch it, and I mentioned it wouldn’t matter much since it was empty anyway, but she showed it to me and it was full. I had filled the spray bottle and had zero recollection of it. I didn’t even realized I was missing time in my memories. No one else in the house takes care of the plants, and even when I asked if they had filled the bottle they said “no.”
When I wake up first thing in the morning, I’m so exhausted that my eyes rapidly vibrate to the point I can’t keep my eyes open. Once my eyes close from the discomfort of my eyes vibrating, I start to nod off. Perhaps even worse than the symptoms of my narcolepsy is the judgement of my family. With the way my narcolepsy presents I’m able to sleep through the entire night, like a brick, but the quality of sleep is abysmal. I could sleep forever. From the outside it looks like I’m lazy, but I’m craving any ounce of energy I can absorb from the lack-luster sleep I’m capable of.
Before my diagnosis I thought to myself “there’s no way I have narcolepsy, I haven’t fallen asleep randomly,” and that is why representation and education on the matter is so important. Media portrays the extreme of what narcolepsy is, and had my therapist not recommended I get a sleep study done I’d still be frustrated without answers.
I was just diagnosed with Narcolepsy with cataplexy this year at 41. I've been living with it for nearly all my life and gradually getting worse. At least, now I have a diagnosis for it. Thank you, for speaking out on this and best of luck to you.
+Tommy Walker All the best to you. That is a long time to have to struggle without a diagnosis. I was diagnosed in my first year of university but knew something wasn't quite right in grade 11. I used meds for university otherwise I would have slept through the entire experience... University was kinda boring unfortunately, so I needed the meds. I haven't used meds since getting well established into my profession. Now, had I chose a less engaging profession, I would likely need the meds. It takes time to learn what works for you. Just be okay with doing things differently and you will be golden.
+Angie Collins Thanks, I'm now on 600mg/day of Provigil and I'm doing much better. also, I try to stay on a regular sleep schedule. Best, of luck to you as well.
Update: I maxed out on Provigil, then went to Ritalin, and finally to Adderall and I'm maxed out on that now. Adderall stopped working, but I finally found an adjunct that seems to be working synergistically with the Adderall. I take. Pure Indo White Kratom powder 3-4 times a day and that seems to act as a booster for the Adderall. I'm currently looking into having my gut microbiome studied at a lab to see where else I might improve.
Angie Collins hi l wanted to ask about how you cope with Narcolepsy
Hope you’re doing well ❤
@@AGoodHairDay Thanks, same to you
Thank you for putting a smile on my face ! I’m a fellow narcoleptic and I so enjoyed your entertaining way of explaining our symptoms to those who never knew our daily challenges. 😊
WoW what an inspiration! You are now one of my personal hero's!
THANK YOU! For first putting yourself out there to discuss a very personal condition. A personal, invisible, yet truly real and debilitating condition. Many people, after hearing your description of Narcolepsy will think you are insane! I know I have Narcolepsy with Cataplexy and the responses I get from some (not all) of those I tell of my condition either look at me strangely and I can tell they don't believe a word I have said. Others, well they are the type that have a solution for everything. Even a chronic, non-curable neurological disorder!! Silly people how ignorant they make themselves appear when they say try a gluten free diet, or quit drinking caffeine, exercise more, or turn in a circle three times click.your heels and say "I don't have Narcolepsy anymore"! That's all I can do is laugh at their chosen ignorance. But then there are the few that actually "get it". They want to.learn more, ask how they can help and they don't cast you aside as another friend gone insane. But anyway, what I mostly appreciate is your honesty. Your descriptions of each symptom is not exaggerated and stated in such a way that all can understand. You don't all of a sudden have a cataplexy attack caught on video while on stage or fall asleep mid sentence and start acting out your dreams. (Have you seen some of these videos people post, Egads no matter narcolepsy isn't taken seriously by most.) You make a great advocate for people with Narcolepsy. You keep it relatable through your analogies. You keep it real.
We are not lazy, nor crazy and far from being ignorant. You presented to the people without Narcolepsy a very educational, positive, energetic, honest insight of the disease we wake up with many times each day! I am going to post your video on a support group that I belong to, PWN4PWN. It's a Facebook support group and I hope if you have a moment you can take a look at it. They are doing great things for those who share our disease. Maybe you can join and introduce yourself. I know many of the members would be delighted to hear your story, especially since it is given with so much positive attitude!
Keep shining! JuDee Janowitz
Thank you so much for your kind words. Thanks for sharing too. If it can make someone laugh or educated someone who doesn't quite get it - great. Stay strong.
Gosh 6 years later and I stumbled across your video again on RUclips. Today I was supposed to take an 8 hour bus ride (5 hour car ride) down to Salt Lake City to visit with my daughter, her family and also my best friend. I didn’t go. I am 56 years old and have been living with Narcolepsy since 1996. You would think I would have become accepting and more comfortable with my condition. This morning wasn’t the first time I postponed this specific trip. This is the 3rd time. I told my husband “I am done. I am not going to feel bad for not going. I am not going to reschedule. And I am surely not going to try to explain to the people I know best and love with all my heart why I couldn’t get myself together to go”. He responded with “I love you”. But here I am stressed and feeling guilty. Heck I haven’t even told my best friend I am not coming and she is the one I was going to be staying with. I was all packed and just needed to shower and get dressed. I started worrying. What if I fall asleep and wake up yelling or talk in my sleep. What if, what if, what if. I decided not to go. Now I am sad and angry with myself. Disappointed in the person I am. Which isn’t much of a person really at all. I am just an existing entity. A nuisance to the few I know. How pathetic I sound. But this is my reality. I am tired of making up excuses and lies and missing out and not being a part of LIFE! And yes I know I am so fortunate to have the life I do. I realize it could be so much worse. It’s a difficult day already. Today is a winner for Narcolepsy. Tomorrow I pray will be better.
Thank you, Thank you!!! My 16 year old son was just diagnosed with narcolepsy. The more info that's out there the better. He's been told by a teacher "he's a joke" because he fell asleep in class and this is a kid who's a National Merit Scholar
+Annie That makes me very sad to hear that a teacher said that to your son. Ignorance does not discriminate I guess. He's got a tough road ahead with hormones raging AND learning the ins and outs of his disorder. If you haven't checked out the Narcolepsy Network I suggest doing so: narcolepsynetwork.org/
They run annual conferences & they do lots for teens and young adults. There is much to learn about the accommodations that might benefit your son at school (high school and beyond). There are resources on the site.
I wish your son all the best. Make sure he works out. I do know that getting a really good workout in does help me get a wee bit longer of a sleep at night before the multiple nighttime awakenings begin. That makes a big difference in how I feel the next day if I can sleep for almost 2 hours before the awakenings start. Also being physically fit just helps overall with food cravings & feeling good. Narcoleptics need every opportunity to "feel good" about themselves as possible. When you realize your greatest struggle in your day is simply to stay awake... that can sometimes weigh negatively on one's self esteem.
He's lucky to have a mom who is clearly invested in helping him :-) Keep up the good work & be sure you have sources of support for yourself - we aren't easy people to deal with, especially while we are still trying to figure ourselves out and find ways to be successful.
@@angiecollins8977 thank you...
I have to share a strong testimonial. I was too excited yesterday. God previously cured my bipolar, I had another chronic condition WHICH IS narcolepsy, I can fall asleep in 1 minute and has previously need like 10 hour sleep to feel like normal people
Yesterday I sincerely prayed God to also cure my narcolepsy, so I could have more energy to do his calling, from yesterday to today with no medication, I didn't feel any sleepiness
I have never felt this in my whole life.
He is able! I too have Narcolepsy & absolutely believe in our Holy Father God's ability to heal us in an instant & permanently!
But for some reason, Father seems to be saying to me; "Not so fast my faithful one, I have a few more things for you to conquer first"!
Nonetheless, if it be Father's will for me, I know, that I know, that I know!!!!
His will be done!🕊️🙏🕊️
Blessing & Mercy to you always!
Im so keying into this . I'm dealing with narcolepsy and it's affecting my studies. I'm taking this to God in prayer. Thanks ❤️❤️
Amen sister I hope for healing from the Lord.Trying to take each day one step at a time and work on my health.
Amazing, ty for this...I'm als narcoleptic, w cataplexy. Thank you for doing this.
I love TED TALKS! I just stumbled upon this as I'm researching my diagnosis. Diagnosed Jan 2014 but with out cataplexy, I have sleep paralysis & hallucinations and don't sleep 8hrs still with meds (max 3 hrs). Realized the worse time so far was in 2008. I laugh about it now because it could have been worse! Thank you for sharing Angie Collins!! You've opened my eyes to a new adventure!
+blupassion74 Thank you. I could have been better rehearsed, but it is with it is. What do you have planned for your new adventure?
I think you did a wonderful job just getting the message across. The audience seemed to be really engaged & interested. Well the first thing is to prove to Social Security that Narcolepsy NEEDS to be a viable listing within their disability claims (which I'm fighting currently), then to provide more education about the rare disease, how different it is, & lead a profitable life! Although I'm still in the early stages with the meds, I hope that my career goal can still be reached. (Graduated Nov 13' with an AA in Medical Assisting but plan to become a Lic Traveling Phlebotomist). Among the normal woman dreams of marriage & children, I pray I find (or he finds me) the one who is willing to be open to something new & be totally supportive of me!
Well done. You nailed it, in one short talk. That took a lot of doing, as this disorder is so hard to explain. I have had it 26yrs. Again, you nailed it. 👍
I've been living with it since puberty. 56yr now. Need go back rewatch. Reading commenters did not hear what she said
I have been living with it . thank you loved the speak. I feel like you where talking about me
I’m type two. I have a lot of the symptoms she mentioned here but not all of them.
People say type 2 is less severe but I’m not so sure. I’m rarely actually awake. I slip in to day dreams so easy and while I day dream half my consciousness is driving my body.
As a kid I was so scared because I kept day dreaming of cartoon characters and I couldn’t get my mind to focus on the real world. I got in trouble a lot because I would wake up after doing things I didn’t realize I was doing. The weird thing on some level I knew what my body was doing but I had zero consciousness while doing those things.
My grip on reality was something I would fight for in my mind constantly. It scared me for my whole life. I was sleeping 12 hours a day and laying down for 18-20 hours a day before I was diagnosed.
Thankfully the medications I take brought me back to reality and I’m start to live.
I don't think it's less severe, it's just different.
After having major problems for 8 years, doctors running every test blood and scan known, my blood pressure went super high, hey you might have apnea, sleep test results, oh... you need to see a sleep specialist. Get an MLST, you have narcolepsy. By the way 3 months before i was diagnosed with fibro. The day i started taking amphetamines my life improved 90 percent, even pain was almost gone. Looking back this started when i was about 18, im now 32.
My coping strategies....When commutting to work/from work..i got to read books to prevent my brain from drifting off or i would keep myself busy sewing so that i can alight at the right bus station.
You put a smile on my face
Awsome Angie. Just to let ya know, you made me smile and even laugh. Good job⚘very encouraging. God Bless you.
I was diagnosed at 28!!!!!! I complained to the doctors from the age of 6-7. If only I’d got a diagnosis earlier on my whole work-school- life would have been a lot different.
im not sure yet if I have this but I have almost the same experiences she had mentioned. Up until now,Im still fighting this sleepiness. Thanks to this, I know Im not the only one who have this
As a narcoleptic, I could not stay alert to fully complete this talk
As a narcoleptic this made me cry, thank u
today I was diagnosed officially. this made me laugh. thanks for the levity.
i8apoopsicle research is key. Facebook groups are awesome and it's your job not the doctors to deal with this. They are usually not great.
Josh Magann I agree - we can not leave it up to doctors who are trained by big pharma to help us with this. I’m looking into alternative solutions
Thank you for sharing! I remember my first episode at 4 and tried to kill myself by jumping out of a 3 story building in 1974. I was first diagnosed in 1992, now I’m tested every 3 to 7 years. The journey has been long. 52 now. Diagnosed as a Narcoleptic Type 1 as well.
Never realized there were more of us. Thank you for being so open.
She was great.
thank u so much for sharing :) it is so nice to hear someone talk about N openly. i want to start educate more people about it.
:) I hope it will be okay to share on n support groups :)
+Sian Lewis please share the support group I so would like to join
+Sian Lewis I had quite a limited time restriction, otherwise I would have talked longer about my adventures with Narcolepsy ;-) Have you checked out Narcolepsy Network? narcolepsynetwork.org/
No I haven't. I'm still new to all the research I'm trying to do but I will check it out. Thanks!
Most certainly - please share.
My story 💯 word for word
I only found out about Narcolepsy today, now I know it's not just Sleep Apnea. Watching from London UK.
so true!
I have type 1 narcolepsy. Wasn't taking the meds because they screwed me up. Ended up falling asleep driving. Became a felon because I "KNEW" better. All the opportunities I've watched pass me by and increasingly so. I'm 27 and I'm having a mid life crisis.
Thank you
Am I the only narcoleptic who didn’t like this explanation?
how so?
My situation is a dangerous one. I need to drive on the freeway
I stopped doing it and I take the streets with my right hand on the manual brake. Just in case I fall asleep , I have done it several times while driving.
The hardest part for me is knowing how much I've tried and suffered to get to where I was only to realize that I desire so much more from my life. My whole adulthood has been a compromise, a hilariously miserable existence, and to think I've got to spend the rest of my life trying to be "happy" with my accomplishments my ambition is untapped. The fear of failure pursuing new things is crippling.
Same feeling here
My experience of narcolepsy is like two parallel worlds going on at the same time, as the unbidden nonsense thoughts intrude into my waking life. If you see me hanging on to the traffic light post as I wait to cross the road, it's just to remind myself that this is real and not a dream.
I've been having symptoms since upper 20s mild enough to be dismissed as other things. Now in my mid 30s I truly believe I have it. I would think hypersomnia but I check every box that is specific to narcolepsy 2. My brain chooses when to sleep and I have no ability to fight it even talking, walking, and drinking energy drinks and don't make sure I stay awake.
Now you got me convinced i need to see a doctor about this but pretty sure an official diagnosis would ruin my career and my life
crkemppainen no go see a doctor you can get medicine
I have been there and no exactly how you are feeling. However, even having N myself there is still hope. First of all ask your doctor for a letter stating the accommodations you may need. Educate your employers on having N while also explaining to them you are still capable of being a productive employee. Are you taking any medicine for it? Does your job have a union? By law they have to offer you reasonable accommodations by the ADA. Practicing good sleep hygiene each night, exercising and taking breaks help too.
It wouldn't, I promise! First off, by law, you don't HAVE to say anything you're uncomfortable with to anyone - in the US at least, under the ADA. Second, OSHA/ADA keep you protected legally in any work place.
In general though, it gives you name to the problems you've been having; a diagnosis helps you feel like it isn't your fault.
I was diagnosed with narcolepsy with cataplexy when i was 20. I noticed the reduction of obisity and whenever i hit my dopomin level can cure sudden sleep attack. Also a balanced diet and daily exercising reduces the cataplexy..
I think undiagnosed Narcolepsy is one of the main reasons why people continue to smoke cigarettes. You can mitigate Narcolepsy symptoms with nicotine. I have seen organic cigarettes for sale, but it would be better to have a cure. Overall there are hardly any cures for any disease. There are plenty of treatments and palliatives, but learning to live with it seems to rule the medical world.
Awesome Angie. Really interesting perspective I learned a lot and enjoyed doing so. I have a couple friends I think could benefit from watching this, is it okay with you if I shared the link with them?
mj collins Of course :-)
U FUNNY! Yup Eating While Sleeping! U Go Girl!
Love Your Presentation Excellent!
You better Tell Them The Real Deal I Feel Ya!✋😇☕🎂🙌🙌
I'm pretty sure. I'm narcoleptic. I've been having symptoms of it since I was fourteen. I'm twenty now, and might actually go to a specialist about it eventually.
I am also having narcolepsy .and am so happy for your sensitization I hope this will reach to more people especially here in Africa.
Strange..when I was a psych nurse FT...working hospitals and private cases..this Never happened. Now that I'm home 24/7 career over due to leg amputation..this is a daily thing.
It is however occupioned by migraines..severe ones the more waking all night the stronger the migraines.. I do remember falling asleep while driving....often . And waking up to my destination. A few times waking to nearly smashing into something..a tree or car.
Not sure if this is narcolepsy..but it might be.
I am 13 and I have narcolepsy and when was little I got bigger and I have most of these things it Sucks!!
Luna Wolf hope your doing well Luna
I knooow!! 😓
My son would wake up and run around shaking. He never ate at night. All I know is he didn't know what happened after these episodes. also would loose his bladder at these times. please someone tell me something. Dylan died Oct 12 2017. One year already gone so young. this disease he had killed him. he was so tired his body wore out.
Cataplexy cripples me
Her arms are ripped!
I have narcolepsy with cataplexy
being single mom having narcolepsy and depression isn't easy. I have been diagnosed since the age 9 when my mom passed away. I feel so empty minded most of time like my life is just dragging on .. I know I was meant for more to be done in life. But dam ppl do not sympathize nor understand the daily struggle of having narcolepsy along with the other ailments it comes with. anyone who comments on this and has narcolepsy add me on fb @ Meganne castillo to reach out to one other. have a blessed day
I have narcolepsy (type 1). I’m from Italy and I have free access to very effective medicines. How do you deal with it in the US?
I have sleep paralysis, false awakenings, multiple awakenings, and sleep drunkenness in the morning. I have sorted an entire bucket full of nuts and bolts for work in my sleep... Woke up and they were PERFECTLY disassembled and sorted. Hypnogogic hallucinations especially before falling asleep were almost nightly last year. Now it's the naps I don't choose... 11am on the couch having my morning Sunday coffee. Suddenly I awake and it's 2:30 and I'm still sitting there perfectly erect, my Sunday morning gone. I walk around. Feel the sleep coming on. Again I fall asleep, wake up after the 10th false awakening and sleep paralysis where I dream I'm calling 911 because I dream I'm having a seizer during sleep paralysis. Wake up and they phone isn't even in my hand! Wow. Now it's 2AM. My friends would say to just go back to sleep since I have to get up early and work, that I'm just tired. Lol last thing I want to do is sleep when I just spent my day off having three sleeps I did not choose or want.
Makes me think narcolepsy has a big connection to the adrenal glands.
ha ha ha.
N o p e
My son Dylan passed away from they said his heart and him being overweight. he was 17 . Summer of 2017 He started sleeping and having episodes thinking g it was siezures ruled it out he would have 2-5 x a night. He was diagnosed with sleep apnea. sleep Dr said he had parainsomnia. He said it wasn't narclelepsy. He would fall asleep anywhere. can anyone tell me what the heck happened to my sin.? He ended up gaining a lot if weight with this to.. Dr. said he died because of his heart and weight. can anyone explain to me? I'm still clue less I think he had narcalepsy not parainsomnia
deepest condolences, Barb Wojciechowski
some doctors might need to recognize that its called 'practicing' medicine, for the 'vitality' of 'humility'.
when education through exploration *in a field* need be on going.
(through all my waking sleep and sleeping wakes, i only knew of one physician who cracked a book to give a look.)
bless your heart, as a mother of a son.
that which exists in precious wholeness above and beyond a label of a condition.
deepest condolences.
Describes me to a T!
Sleep eating hmmmm....i ensure i only got low sugar fruits or carrots in the kitchen.....
Why do you need a Ted talk for this tf
So people like me can get diagnosed sooner. I’m 37.
I should have been diagnosed 22 years ago. Doctors always blow me off. Think I’m making it up or I’m depressed.
@@RockynCurlsDido