Scientists struggle to ‘awaken’ patients from rare sleep disorders
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- Опубликовано: 16 ноя 2021
- The waning light of autumn and the rewinding of clocks can throw just about anyone’s sleep out of whack, at least for a little while. But for people with rare sleeping disorders, the struggle never ceases. Patients with idiopathic hypersomnia (IH)-like Victoria Kirby York of Ft. Washington, Maryland-never feel rested, despite sleeping as many as 11 hours in one day. The disorder is a struggle for patient and doctor alike: Researchers are still trying to uncover IH’s most basic biological mechanisms.
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When I was younger almost every morning I would dream I was getting ready for school only to wake up late... it was really lucid.
That happens to me too!
I’m 45 and I’m only now realizing I’m suffering from some sort of sleep disorder. I have never ever woken up feeling refreshed, I don’t even know what that’s supposed to feel like! I blamed myself for decades - ‘you’re lazy, you’re not a morning person, you don’t want to go to school/work, you are even too lazy to consider having children’. Yes, I never even had the option to consider having children because i couldn’t even imagine a life with a child who needed care that starts early every single morning. When I worked full time, every Thursday morning, I’d be in tears telling myself ‘hang in there, a few more years, then you can end it’. I lived for the weekends and days off, days on sick leave (even when i had a job I loved!) so I could stay in bed, and sleep. And always always I told myself I must simply be the laziest human on the planet 😢 it’s also the outside world telling me ‘yes waking up is so difficult’ ‘everyone goes through that’ that’s not normal’ No it is not and I’m mourning all those years, decades I did not seek help. 😢
I’m 23 and going through this now. Been dealing w/ it my whole life but worked nights most of my teenage and early adult years, so I didn’t look into it much because I could still usually manage to be awake by 5pm to get to work. The last few years I’ve been working mornings and can’t get to work on time to save my life. Set alarms every 5 mins starting 30 mins before I need to be awake and 4 hours after I’m supposed to be at work because there’s many days that I’m supposed to work at 7am and will sleep through all my alarms until 10 or 11am. Haven’t wanted to even entertain the idea of having a child because I’m so terrified of having to try to get up throughout the night to care for another human and then still try to get to work on time. My alarms cause problems in my relationship because they constantly go off and wake my gf up way before she needs to be up for work and I just sleep through all of em most of the time but I’m still scared to not set them and end up waking up even later for work or something. My department manager and me are pretty close at work so he’s kind of just covered for me with my job, getting mad at me still depending on his mood, but not firing me or bringing this problem to the higher up bosses in our workplace. But he just told me today that our stores HR manager has been noticing my time clock and looking into my schedule noticing I’ve been late so many times and is now talking to my department manager about it so I desperately need to find a solution or I’m gonna lose my job. Like you said, everyone you talk to tries to make it seem normal or as if you’re just exaggerating how much of a problem it is and how UN normal our sleep is. Or they treat me like I’m some lazy highschooler that stays up too late eating chips and playing video games and that’s why I’m always oversleeping or miserably tired in the mornings. And I also feel physically sick in the mornings when I’m too tired, idk if anyone else has this problem or not?
@@zanerussell5519 Please please go see a doctor - save up money for it, borrow money whatever but please see a doctor and tell him how serious your situation is. The key to getting a doctor to take your complaints seriously is to tell them how intensely your life is impacted by it - socially, work/school, life at home, daily chores, relationships, your mood (not too long cos they’ll blame depression for ALL your symptoms, I mean you might be but lets explore all options) The medical science behind sleep has really improved - I never had anything done even when I wet the bed into adulthood. Right now a kid is sent to a sleep lab right away. If I were you I’d write it all down, talk to your girlfriend, get her support (or some other family/friebd) and go see an expert until you find the doctor who says ‘let’s figure this out and solve it together’ . Please seek help for a better future!
I was diagnosed with Narcolepsy but my neurologist says at the last appointment that it could be idiopathic hypersomnia because I didn’t dream in my MSLT, despite having a MSL of 3 minutes. This is so confusing, yet utterly horrible. Getting people to understand is nearly impossible.
IH twinzies
@@calliecarter1645 YES TWIN! Well, we shall actually see about that! LOL I had another sleep test done and it's leaning towards narcolepsy! I did a true test this time and had REM sleeps in my daytime naps. Oh, the human brain is so strange.
I am going through this. I don’t have a diagnosis. I did the sleep study where I stayed overnight and the next day. Did the scheduled naps and they said it was narcolepsy and to buy a UV light to shine on myself when I wake up. The problem is I can’t wake up and sunlight makes me more tired. Going to the beach is exhausting for me. Everyone around me thinks it’s all in my head and that I can control it. If I could control it I wouldn’t be doing it. Like I would try to sleep for 3 days on purpose. I really thought there was something seriously wrong with me and that I was never going to find out what it was. Then I found this video. And researched the symptoms. When I sleep it’s like I’m in a coma I don’t dream and I’m still tired after 24 hours of sleep. I can’t drive more than an hour without having to get out and do jumping jacks on the side of the road. And then that only gets me another 15 to 20 mins down the road. My boyfriend has been with me for 4 years now and knows the severity of it. I have gotten pregnant in my sleep because my ex took advantage of my problem. I didn’t even wake up. When I found out what my ex did I swore I was done trusting anyone and I would lock myself in my room with my kids. Then I met this man. He is truly amazing to me and my kids. He is just getting frustrated with the sleep problem because he doesn’t understand it. We had to stay with his mom for a little while and tell me why this woman only had to say my name one time and I would pop up but can’t wake up to 15 alarms or anything else. So now he thinks it’s all in my head because she was able to wake me up. And I have no idea why she could. I’m so lost and confused on where to turn. I feel like everyone has turned their backs on me and I can’t do anything about it because I need their help to get my kids to school on time. I’m so sorry for the rant and maybe too much info but I finally found people who sleep like me!!!
I wonder about myself. I easily sleep for 12 hours and am still exhausted, sometimes fighting off falling asleep sitting up.
You should get a sleep test
Get a sleep study.
My whole life I’ve felt sleepy. I zone out easily, sleep for excessive amount of hours, fallen asleep past nap time as a kid, in class throughout grade school, in clubs with music blasting in college, woken up late for work too many times to count bc of lucid dreams in the morning. My father also displays these sleepy tendencies and has sleep apnea. Think it’s time for me to do a sleep study.
Yes! Get a sleep study. I have ideopathic hypersomina. With a CPAP machine, I do not need any less sleep, but when I'm awake I feel better.
"Sleep Studies" - "polysomnography" are all but worthless, so don't get your hopes up too high. As this is ideopathic - that means by definition no sleep study could confirm it. If you have an issue with sleep that is obvious, it's highly unlikely a PSG would be needed. Better question is - how often IS a PSG useful? 3 in a 1000? Less? Ask your doctor in advance what they will DO based on the PSG - then just do that and see if it helps.
I had cataplexy as a child. When having attacks of hypersomnia it is not unusual for me to sleep 20 to 22 hours a day. The most was 30 hours straight...mood changes, extreme cravings for sweet food. Diagnosed with Klein Levin Syndrome.
Great video.
I know I personally feel more active at night and sleep like a baby during the daytime hours. I also have the rare green eyes and can easily see in the dark but get really bad headaches in the sun even with sunglasses
that is not IH.
I've had idiopathic hypersomnia with delayed sleep phase since birth
Amen 🙏 she said everything I’m going through
Ty.. New info for me..other side we came to knw...it might be a disorder if ur kid sleeps alot.
Just like dyslexia...where we think..kid is not intrested in studies...here we can assume kid doesn't want to wakeup ..or nt ready for his/her daily routine...
But actually there is some problem with them they can't understand or tell.
This is such an important point!
thats me! i black out a lot and i have no idea what day or time of day it is can take up to 90 mins or more to "recover" what's the drug they mention???!!!
What is that medication which the speaker referred to?
Zywav, by Jazz Pharmacy
@@meman6964 gracias
Also these people probably have no fear of the dark either.
no relationship to IH whatsoever - and no chronobiology is specific to IH.
universe
Wonder if the Drs researching and studying this have considered that these people may be Nocturnal. Meaning their bodies feel more ready for activity during the night time. Humans are naturally NOT nocturnal but that doesn't mean NO humans are. There are alot of humans who are naturally nocturnal and this may be the case here. To them waking up at 7am feels like a normal person's 7pm.
I have IH and yes we have tired that to see if it would help. It doesn't
After researching everywhere for as much info as I had time for I GUESSING that this may be the body forcing these sufferers to sleep in order to heal. Like a naturally induced coma to heal itself by removing stimulation. It could be a simple injury to lung damage or even from a 5 year old concussion. Or from that time accidentally poured bleach in the toilet to clean it but forgot to flush the Rust remover toilet bowl cleaner and this created a CLOUD of deadly gas in a bathroom with NO windows and you hit the flushing handle so hard the chain popped off so you had to remove the toilet tank lid and manually flush it because you had 2 kids in the very next room and didn't want them to die. So you held your breath as long as you could but when your on the verge of a total freak out you can't hold your breath and I took in a few drags of pure poison gas. Then opened the door and grabbed the kids and took them next door to Grandaddy while I aired out the house. Took a week for left lung to finally fully expand and allow air in. The right just hurt to breath in for a day or so.
So damage like that may be a reason the body says sleep. BUT then the old a body in motion stays in motion is reversed and sleeping too long caused more fatigue and you sleep more and more until they don't wake up.
The body is a miracle and it acts in mysterious ways we will NEVER know the answers to. Maybe we are not suppose to know the answers.
Oh yes I did know that mixing chemicals is highly dangerous I just thought I had already flushed and didn't double check before creating a lung eating gas cloud to breath.. was many many years ago and have never mixed any chemicals together without doing my homework first since that day!
That's called shift work sleep disorder (SWSD). It's different from IH. I have IH and I've tried pretty much every kind of sleep schedule, trust me, none of them have worked.
There is some research validating certain cultures that don’t sleep 8 hours at night. Some cultures (maybe like in Spain) actually have about two 4 hour sleep sessions and may stay up later (bed at midnight) or even get up in the middle of the night for an hour or more. It’s important I think to normalize variability in sleep. We don’t know everything. Humans are still mostly diurnal as you pointed out, but we also as a species are not strangers to being up in the evening hours. Evolutionarily speaking when we lived in jungles it would have made sense for one person in a pack to be semialert at all times for safety. I hope more research helps more people find what is best for their lifestyle.
I get this way after smoking a fat blunt
As a person with IH, no it isn't. It is much worse
@@neverloseyourvoice5263 as a person who’s smoked many fat blunts I can tell you I know what it feels like to sleep for 14 hours
@@kurocrow-chan8880 hell
Carnivore helps me so much, it put alot of symptoms in remission, we should lover inflammation