I just got diagnosed with Narcolepsy With Cataplexy. I’m 46 and for my whole life I had no idea that your muscles going weak from laughing is not normal. Sleep paralysis since I was 12-13, I thought that was normal too. Vivid dreams, thought it was normal. Hallucinations started when I was 27 but I thought I was having weird spiritual experiences. Now I know better. Thank you science.
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@dawnr7798 ok I will explain. Narcolepsy is not a sickness, disease, phobia or disorder. Narcolepsy is a One of alkaline deficiencie. As per Ayurveda that alkaline rich in paarijatha tree leaves and eatable lime stone powder. This powder is more available than leaves so I suggested you. It will work for you
I was recently diagnosed with narcolepsy. The only symptom that I have is excessive tiredness no matter how much sleep I get. The diagnosis came about because I went for a sleep study to test for sleep apnea. They said I do not have apnea but they asked me to return for additional testing and confirmation of narcolepsy. This was last week so very new to me. They started me on Modafinil and today is day 4 of taking the medication. Causes intense headaches but I am not tired all day. Hope this will settle out and return me to normal sleep cycles.
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I've been diagnosed with narcolepsy since I was a kid. I'm really sorry for the people in the comments who have been pushed aside because they don't show all of the " required " symptoms. Myself I hallucinate when I am especially tired and every now and then experience catoplexy....and obviously I am tired and look like a tim burton character.
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I experience all of these symptoms. My dr doesn’t listen he just said I’m psychotic as I said I hallucinate at night. I can’t cope anymore I’m so tired all the time I nod off walking
Hm, same here. I knew it wasn't just because I needed more sleep.. When I actually read about the symptoms majority of them are spot on. And it's like finding the final piece to the puzzle, it all made sense. I get that the doctors don't want to jump the gun since this type of disability comes with a few consequenses. But they should at least give us more to work with, telling me I should sleep more when I already sleep 8-9h and not give me an option to follow up, is not good enough.
I was told that I was crazy and depressed by doctors for almost 20 years. I finally had to pay out of pocket to see a narcolepsy specialist because my symptoms dramatically worsened into my mid 30’s and I could barely function. I believe this condition is more common than we know thanks to doctors who simply don’t give a damn.
Thank you for producing this video! I have narcolepsy with cataplexy, which leads me to constantly review information relating to my condition. This is the best presentation and explanations of the diverse symptoms of narcolepsy that I have encountered in my ongoing research. I am very pleased that you explained how narcolepsy affects nighttime sleep, as this topic is rarely spoken about.
I think I have narcolepsy because its describing most of my symptoms. Especially the hallucinations in dream state. I have a lot of auditory hallucinations either right before or after I try to fall asleep. Sleeping at night is a major issue. It's like I take short naps. This video was very helpful. My psychiatrist wanted me to go for a sleep study but didn't have me go to one yet.
I just experience this, when I woke up or I thing I woke up I felt something jumping at my neck and attacking me. It felt so real. Never thought hallucination could feel this way.
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@lovelife3209 ok this is eatable lime stone powder not lemon. Daily mix a pinch of lime stone powder in a water or butter milk and drink Just one or two months it's completely gone.do you know this lime stone powder?
I have every single one of these symptoms. I go into REM sleep within three minutes. It has taken me ages. I have the last test where they wake me up after every hour. I can't wait to get this nightmare fixed.
I hear auditory hallucinations when I am falling asleep and I have EDS and insomnia as well as I dream during short naps. but i don't have sleep paralysis. I still feel strongly that I should get it checked out
For the past three months been getting about 4-5 hours sleep. I have been needing to nap throughout the day. Have moments where head gets really heavy and I can fall asleep instantly. Just wanted to check I haven’t developed narcolepsy and just sleep deprived. I have all of these symptoms pretty much but I sleep soundly at night (when not restricted by work and other social commitments) so from that I can deduce I probably just need to catch up on sleep. I’ve booked three weeks off to rest. If symptoms persist after this I will see a GP.
You are liable if you have an accident due to these conditions. I would make an appointment with the GP, then rest up for the week and simply cancel if it solves the issue. If it doesn’t you will likely will get a sleep study for sleep apnea.. then if applicable you will need a cpap for 6 months ( they report statistics wirelessly) and if your still sleepy during daytime another study that will transition from a night time to day time study. It’s important in either case the “ball” starts rolling. With the long wait times for a medical diagnosis regarding daytime sleepiness, get evaluated as soon as results from weeks rest are in. I’m not a doctor, just an experienced sufferer of narcolepsy. Also be aware that in Europe a flu vaccine delivered in 2010? has caused narcolepsy in some folk. I say this because narcolepsy is a rare disease but “GP” sounds across the pond, .. I’m not an anti-vaxxer.
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I think it was great to see these medical professionals share their finding. And can support all the pts with this. I think all the gps should be watching these informative utubes on neurology conditions. I haven't not seen a neurologist , a sleep Dr . Why isn't pts in Australia getting treated by neurological. Not just sleep drs. 😰
Good news for all of you I have this problem previously I lost my friends, family about this problem But one day a great person gives solution for this That is eatable lime Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I was diagnosed of NARCOLEPSY in 2020 and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including NARCOLEPSY, at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepare NARCOLEPSY herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from NARCOLEPSY,all thanks to Dr Nda . you can also reach this great herbal doctor for help via email: dr.nda621@gmail.com or contact Dr Nda via his whats-app: +2348055870593. He Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND LUPUS etc.
There is too much misinformation about narcolepsy, because the doctors keep passing on the same old discriptions of symptoms - they're too rigid, because I've met many people like myself, who have cataplexy for much longer than one minute, and people who also have myoclonic jerking before they have an attack or when they try to force themselves out of a cataplexy attack too quickly.
I was diagnosed of NARCOLEPSY in 2020 and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including NARCOLEPSY, at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepare NARCOLEPSY herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from NARCOLEPSY,all thanks to Dr Nda . you can also reach this great herbal doctor for help via email: dr.nda621@gmail.com or contact Dr Nda via his whats-app: +2348055870593. He Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND LUPUS etc.
I was diagnosed with narcolepsy at age 7 and would lump if listening to a funny joke I don’t halustinate but i dream a lot. I don’t even have to be sleep five minutes and I start dreaming ; the strangest and weirdest dreams
One time when I was 4 I was literally In a weird rainbow room thing and for some reason the bathroom was a trap then the weird duck guy went in there and then he screamed "I'M ABOUT TO SNEEZE A THOUSAND BANANAS!!!!!!!!" Now I think back to It saying what the fuck
For anyone else who stumbles upon this, my cataplexy is induced by nostalgia rather than just "haha a joke" or angry feelings. This narrow view of the trigger delayed my diagnosis for a while. Any emotion, even those others may find mundane, can be a trigger. For me, if I have a distant memory I haven't thought of in a while, something from childhood that is neither a happy or sad memory, just one that makes you go "Oh yeah, that thing/place", My vision blurs slightly, things go a little dark, and my peripheral vision collapses and everything looks like I'm looking at a picture (hard to explain, but imagine looking at a picture of a tree and leaning to the side to look behind the tree in the picture). On top of that, a sorta pull in my chest, or more like my center of gravity, and one or both of my knees buckle. The knees just give out, no sensation, no tingling, no numbness; they just turn off for a split second, like a gap in the signal to the brain of just dead air. Those are my symptoms that only started up at about 26-27 years old. Before that, since 2006 I had excessive daytime sleepiness. My doctor at the time thought it was mononucleosis. Only in the last couple years did I get an Epstein-Barr test and find out I never had it. The only explanation now is that narcolepsy started when I was 13 or so. I've been on Xyrem for a couple years now. It works well, but the cost is astronomical. I'm on a very low dose, but it does stop the cataplexy. Nuvigil was like sugar pills. Vyvanse is good until you get used to it, then you have all the jitters with none of the wakefulness. Hope this helps.
I have status cataplecticus (SC) which is another form of cataplexy with narcolepsy. SC is an extremely rare and severe form of rebound cataplexy. Meaning, rather than having one cataplexy attack that lasts from a few seconds to several minutes followed by the rapid return of normal muscle tone and function. The sufferer instead has a string of continuous overlapping cataplexy attacks, attacks that look like one considerably long cataplexy attack, which can last as long as several hours. Also in the most severe of cases like mine, if the trigger causing the attacks isn't addressed and/or removed like perfume or hand sanitizer, or if my pain is too severe my paralysis can last as long as even days. We are all different, and the medical community is still discovering that everyone’s symptoms don't fit neatly into the narrow discription they're currently using.
Thanks. My main trigger is social alienation, like suddenly feeling disconnected and apathetic.. hard to describe. I also experience a tunnel vision like hallucination, and my vision contrast goes haywire before I fade out. It's a very complex disorder, highly variable, way too many prior misdiagnoses. Dexedrine works best for me, but requires a lot of responsibility
My mum has Cataplexy and I am showing some symptoms like sleep paralysis, not sleeping at night, sometimes for over 48hrs, needing desperately to sleep during the day unless I keep busy. I have anxiety and panic disorder also so my doctor says I just need to "stress less". I am considering seeking a diagnosis for ADHD as I definitely fit the criteria for it (brother and son diagnosed) and my mum takes ADHD medication as treatment for Cataplexy. Frustrating when you know how you feel isn't normal but you're not taken seriously 😔
Sleep paralysis is common in anxiety disorders. I have cptsd and its seen in that, panic disorder, gad.. I have narcolepsy and they play into each other
So, it's kind of like the fainting goats. Something happens to excite them or scare them and they get stiff and fall over. With humans, they get limber and fall over.
I just saw something about fluid retention in there legs, is this a thing because this last year it’s been happening my onset of narco was after I lost my family so I guess it was an onset with depression
now this is interesting and i'd be very curious to know if there is a link! I too have had leg swelling/fluid retention and the onset of my narco symptoms coincide with grief/loss/trauma aswell.
@@jodicrain4500 just a tip which has changed everything around for me. I first stayed out with a large pillow under my legs, I also started using a grounding sheet. I try to atleast get 4-5 hrs of sleep I’m getting better with that timing. Also every morning I drink lemon water, turmeric,ginger,coconut oil. It’s been about 1-2 months but when I’m asleep my legs are nice and warm zero retention feel great
Please can someone help me out. I have many symptoms of narcolepsy. I know hallucinations are one of them. so during the day or during the night whenever I feel an overwhelming tiredness right before I fall asleep it feel like something shakes my body awake. Right before I fall asleep. It happens all the time. Sometimes I am so tired that I just ignore it and basically pass out from being so tired. But most of the time it scares me so bad I fight everyday not to fall asleep. Please anyone give me an honest opinion. Is this a symptom of narcolepsy or do I have a poltergeist?
@@JS-rx7si I wish it were a jerk. But it's my whole body moving side to side, side to side, side to side, in a really fast motion. Almost like someone is trying to wake me up because there is a fire. Sometimes it feels like someone gets on my bed and makes an impression in the mattress which makes me roll into that area. I don't know wtf is going on! 😢
The only way to know is to have a sleep study. I have Narcolepsy. None of what you have described is unique to Narcolepsy. No one online can help you, you need to see a medical professional who specializes in Narcolepsy & sleep disorders.
@@mrs.cloroxbleach4382 This is not unusual. Hallucinations when you fall asleep can also change your perception of your body, so hypnic jerks for example but you can also for example feel like you're growing bigger or shrinking, all kinds of stuff can happen. I would see a doctor to rule out seizures just to be sure, but otherwise it's most likely to just be strong hallucinations
I was diagnosed of NARCOLEPSY in 2020 and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including NARCOLEPSY, at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepare NARCOLEPSY herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from NARCOLEPSY,all thanks to Dr Nda . you can also reach this great herbal doctor for help via email: dr.nda621@gmail.com or contact Dr Nda via his whats-app: +2348055870593. He Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND LUPUS etc.
narcolepsy is no laughing matter, but it is funny to me how bored that lady in the red looks while that guy next to her talks hahaha. wishing all you fellow narcoleptics good health and orderly sleep 💎
I just got diagnosed with Narcolepsy With Cataplexy. I’m 46 and for my whole life I had no idea that your muscles going weak from laughing is not normal. Sleep paralysis since I was 12-13, I thought that was normal too. Vivid dreams, thought it was normal. Hallucinations started when I was 27 but I thought I was having weird spiritual experiences. Now I know better. Thank you science.
How do you know you weren’t having spiritual experiences though?
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@BC08 tbh I believe some may be spiritual experiences and maybe some aren’t. In all honesty I don’t know but the medication does help a lot.
@@chandrasekhar-jf8fc how does that take away my narcolepsy?
@@dawnr7798 ok I will explain. Narcolepsy is not a sickness, disease, phobia or disorder. Narcolepsy is a One of alkaline deficiencie. As per Ayurveda that alkaline rich in paarijatha tree leaves and eatable lime stone powder. This powder is more available than leaves so I suggested you. It will work for you
I was recently diagnosed with narcolepsy. The only symptom that I have is excessive tiredness no matter how much sleep I get. The diagnosis came about because I went for a sleep study to test for sleep apnea. They said I do not have apnea but they asked me to return for additional testing and confirmation of narcolepsy. This was last week so very new to me. They started me on Modafinil and today is day 4 of taking the medication. Causes intense headaches but I am not tired all day. Hope this will settle out and return me to normal sleep cycles.
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I've been diagnosed with narcolepsy since I was a kid. I'm really sorry for the people in the comments who have been pushed aside because they don't show all of the " required " symptoms. Myself I hallucinate when I am especially tired and every now and then experience catoplexy....and obviously I am tired and look like a tim burton character.
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@chandrasekhar-jf8fc lime like the fruit? Or Lyme
@@BabyBunch not lemon it's lime stone Powder
It is using in paan in india
@@chandrasekhar-jf8fc plz reply which lime u r talking about?
@@poojarai4228eatable lime powder using in paan(killi) it is available in pan shops
I experience all of these symptoms. My dr doesn’t listen he just said I’m psychotic as I said I hallucinate at night. I can’t cope anymore I’m so tired all the time I nod off walking
Lulu you and I should be friends.. I’ve been told the same..
Hm, same here. I knew it wasn't just because I needed more sleep.. When I actually read about the symptoms majority of them are spot on. And it's like finding the final piece to the puzzle, it all made sense.
I get that the doctors don't want to jump the gun since this type of disability comes with a few consequenses. But they should at least give us more to work with, telling me I should sleep more when I already sleep 8-9h and not give me an option to follow up, is not good enough.
EVERY PERSON WITH PSICOSIS HALLUCINATE BUT NOOOOOOOT EVERY PERSON WITH HALLUCINATIONS HAS PSICOSIS.
I was told that I was crazy and depressed by doctors for almost 20 years. I finally had to pay out of pocket to see a narcolepsy specialist because my symptoms dramatically worsened into my mid 30’s and I could barely function. I believe this condition is more common than we know thanks to doctors who simply don’t give a damn.
Thank you for producing this video! I have narcolepsy with cataplexy, which leads me to constantly review information relating to my condition.
This is the best presentation and explanations of the diverse symptoms of narcolepsy that I have encountered in my ongoing research. I am very pleased that you explained how narcolepsy affects nighttime sleep, as this topic is rarely spoken about.
I think I have narcolepsy because its describing most of my symptoms. Especially the hallucinations in dream state. I have a lot of auditory hallucinations either right before or after I try to fall asleep. Sleeping at night is a major issue. It's like I take short naps. This video was very helpful. My psychiatrist wanted me to go for a sleep study but didn't have me go to one yet.
I just experience this, when I woke up or I thing I woke up I felt something jumping at my neck and attacking me. It felt so real. Never thought hallucination could feel this way.
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
@@chandrasekhar-jf8fc hi can I ask what drik is? I am from the UK
@@lovelife3209 ok this is eatable lime stone powder not lemon. Daily mix a pinch of lime stone powder in a water or butter milk and drink Just one or two months it's completely gone.do you know this lime stone powder?
I have every single one of these symptoms. I go into REM sleep within three minutes. It has taken me ages. I have the last test where they wake me up after every hour. I can't wait to get this nightmare fixed.
I hear auditory hallucinations when I am falling asleep and I have EDS and insomnia as well as I dream during short naps. but i don't have sleep paralysis. I still feel strongly that I should get it checked out
For the past three months been getting about 4-5 hours sleep. I have been needing to nap throughout the day. Have moments where head gets really heavy and I can fall asleep instantly. Just wanted to check I haven’t developed narcolepsy and just sleep deprived. I have all of these symptoms pretty much but I sleep soundly at night (when not restricted by work and other social commitments) so from that I can deduce I probably just need to catch up on sleep. I’ve booked three weeks off to rest. If symptoms persist after this I will see a GP.
You are liable if you have an accident due to these conditions. I would make an appointment with the GP, then rest up for the week and simply cancel if it solves the issue. If it doesn’t you will likely will get a sleep study for sleep apnea.. then if applicable you will need a cpap for 6 months ( they report statistics wirelessly) and if your still sleepy during daytime another study that will transition from a night time to day time study. It’s important in either case the “ball” starts rolling. With the long wait times for a medical diagnosis regarding daytime sleepiness, get evaluated as soon as results from weeks rest are in. I’m not a doctor, just an experienced sufferer of narcolepsy. Also be aware that in Europe a flu vaccine delivered in 2010? has caused narcolepsy in some folk. I say this because narcolepsy is a rare disease but “GP” sounds across the pond, .. I’m not an anti-vaxxer.
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
I think it was great to see these medical professionals share their finding.
And can support all the pts with this.
I think all the gps should be watching these informative utubes on neurology conditions.
I haven't not seen a neurologist , a sleep Dr .
Why isn't pts in Australia getting treated by neurological.
Not just sleep drs.
😰
Good news for all of you
I have this problem previously
I lost my friends, family about this problem
But one day a great person gives solution for this
That is eatable lime
Daily a pinch of lime mix with buttermilk or water and drik then after one month or two months it's gone completely promise it works.
International level co-op is necessary in training Psychiatrists & Neurophysicians to understand & treat that
i have to live with this every day and its very strange
I was diagnosed of NARCOLEPSY in 2020 and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including NARCOLEPSY, at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepare NARCOLEPSY herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from NARCOLEPSY,all thanks to Dr Nda . you can also reach this great herbal doctor for help via email: dr.nda621@gmail.com or contact Dr Nda via his whats-app: +2348055870593. He Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND LUPUS etc.
My buddy’s got that, full on fainting and collapse, then can’t get up. He’s debilitated over it.
There is too much misinformation about narcolepsy, because the doctors keep passing on the same old discriptions of symptoms - they're too rigid, because I've met many people like myself, who have cataplexy for much longer than one minute, and people who also have myoclonic jerking before they have an attack or when they try to force themselves out of a cataplexy attack too quickly.
I was diagnosed of NARCOLEPSY in 2020 and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including NARCOLEPSY, at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepare NARCOLEPSY herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from NARCOLEPSY,all thanks to Dr Nda . you can also reach this great herbal doctor for help via email: dr.nda621@gmail.com or contact Dr Nda via his whats-app: +2348055870593. He Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND LUPUS etc.
I was diagnosed with narcolepsy at age 7 and would lump if listening to a funny joke I don’t halustinate but i dream a lot. I don’t even have to be sleep five minutes and I start dreaming ; the strangest and weirdest dreams
One time when I was 4 I was literally In a weird rainbow room thing and for some reason the bathroom was a trap then the weird duck guy went in there and then he screamed "I'M ABOUT TO SNEEZE A THOUSAND BANANAS!!!!!!!!"
Now I think back to It saying what the fuck
For anyone else who stumbles upon this, my cataplexy is induced by nostalgia rather than just "haha a joke" or angry feelings. This narrow view of the trigger delayed my diagnosis for a while. Any emotion, even those others may find mundane, can be a trigger.
For me, if I have a distant memory I haven't thought of in a while, something from childhood that is neither a happy or sad memory, just one that makes you go "Oh yeah, that thing/place", My vision blurs slightly, things go a little dark, and my peripheral vision collapses and everything looks like I'm looking at a picture (hard to explain, but imagine looking at a picture of a tree and leaning to the side to look behind the tree in the picture).
On top of that, a sorta pull in my chest, or more like my center of gravity, and one or both of my knees buckle. The knees just give out, no sensation, no tingling, no numbness; they just turn off for a split second, like a gap in the signal to the brain of just dead air.
Those are my symptoms that only started up at about 26-27 years old. Before that, since 2006 I had excessive daytime sleepiness. My doctor at the time thought it was mononucleosis. Only in the last couple years did I get an Epstein-Barr test and find out I never had it. The only explanation now is that narcolepsy started when I was 13 or so.
I've been on Xyrem for a couple years now. It works well, but the cost is astronomical. I'm on a very low dose, but it does stop the cataplexy. Nuvigil was like sugar pills. Vyvanse is good until you get used to it, then you have all the jitters with none of the wakefulness.
Hope this helps.
I have status cataplecticus (SC) which is another form of cataplexy with narcolepsy. SC is an extremely rare and severe form of rebound cataplexy. Meaning, rather than having one cataplexy attack that lasts from a few seconds to several minutes followed by the rapid return of normal muscle tone and function. The sufferer instead has a string of continuous overlapping cataplexy attacks, attacks that look like one considerably long cataplexy attack, which can last as long as several hours. Also in the most severe of cases like mine, if the trigger causing the attacks isn't addressed and/or removed like perfume or hand sanitizer, or if my pain is too severe my paralysis can last as long as even days. We are all different, and the medical community is still discovering that everyone’s symptoms don't fit neatly into the narrow discription they're currently using.
Thanks. My main trigger is social alienation, like suddenly feeling disconnected and apathetic.. hard to describe. I also experience a tunnel vision like hallucination, and my vision contrast goes haywire before I fade out. It's a very complex disorder, highly variable, way too many prior misdiagnoses. Dexedrine works best for me, but requires a lot of responsibility
Ty I feel like u got in my mind and wrote this , bless u because I don’t have the mind to think straight but all u wrote it’s like is me.💔✊🏻💖
My mum has Cataplexy and I am showing some symptoms like sleep paralysis, not sleeping at night, sometimes for over 48hrs, needing desperately to sleep during the day unless I keep busy. I have anxiety and panic disorder also so my doctor says I just need to "stress less". I am considering seeking a diagnosis for ADHD as I definitely fit the criteria for it (brother and son diagnosed) and my mum takes ADHD medication as treatment for Cataplexy. Frustrating when you know how you feel isn't normal but you're not taken seriously 😔
Sleep paralysis is common in anxiety disorders.
I have cptsd and its seen in that, panic disorder, gad..
I have narcolepsy and they play into each other
I am suffering from this disease whether there is any complete cure or not
Does falling asleep in the middle of this video count?
😂
So, it's kind of like the fainting goats. Something happens to excite them or scare them and they get stiff and fall over. With humans, they get limber and fall over.
Is EDS ever the sole symptom in Narcolepsy, or are additional symptoms necessary?
I just saw something about fluid retention in there legs, is this a thing because this last year it’s been happening my onset of narco was after I lost my family so I guess it was an onset with depression
now this is interesting and i'd be very curious to know if there is a link! I too have had leg swelling/fluid retention and the onset of my narco symptoms coincide with grief/loss/trauma aswell.
@@jodicrain4500 just a tip which has changed everything around for me. I first stayed out with a large pillow under my legs, I also started using a grounding sheet. I try to atleast get 4-5 hrs of sleep I’m getting better with that timing. Also every morning I drink lemon water, turmeric,ginger,coconut oil. It’s been about 1-2 months but when I’m asleep my legs are nice and warm zero retention feel great
What is testing for narcolepsy
A sleep study prescribed by a doctor
Please can someone help me out. I have many symptoms of narcolepsy. I know hallucinations are one of them. so during the day or during the night whenever I feel an overwhelming tiredness right before I fall asleep it feel like something shakes my body awake. Right before I fall asleep. It happens all the time. Sometimes I am so tired that I just ignore it and basically pass out from being so tired. But most of the time it scares me so bad I fight everyday not to fall asleep. Please anyone give me an honest opinion. Is this a symptom of narcolepsy or do I have a poltergeist?
I know what you mean... finding a place or someone and speak about it is like a dream 😊
That is called a Hypnic Jerk.
@@JS-rx7si I wish it were a jerk. But it's my whole body moving side to side, side to side, side to side, in a really fast motion. Almost like someone is trying to wake me up because there is a fire. Sometimes it feels like someone gets on my bed and makes an impression in the mattress which makes me roll into that area. I don't know wtf is going on! 😢
The only way to know is to have a sleep study. I have Narcolepsy. None of what you have described is unique to Narcolepsy. No one online can help you, you need to see a medical professional who specializes in Narcolepsy & sleep disorders.
@@mrs.cloroxbleach4382 This is not unusual. Hallucinations when you fall asleep can also change your perception of your body, so hypnic jerks for example but you can also for example feel like you're growing bigger or shrinking, all kinds of stuff can happen. I would see a doctor to rule out seizures just to be sure, but otherwise it's most likely to just be strong hallucinations
Fell asleep during video 3 times
Lol. Funny but not h joking
Day time sleepiness almost every day, no matter what.
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narcolepsy is no laughing matter, but it is funny to me how bored that lady in the red looks while that guy next to her talks hahaha. wishing all you fellow narcoleptics good health and orderly sleep 💎
Facts 💯💯
2:51 ok[[0[ĺ