Treatment of Narcolepsy
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- Опубликовано: 20 фев 2014
- In this video, Dr. Douglas Kirsch, Instructor of Neurology at Harvard Medical School and a Sleep Medicine specialist discuss treatment options for narcolepsy. Included are both non-medication and medication strategies that can be helpful.
Learn more at healthysleep.med.harvard.edu/n...
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Website: hms.harvard.edu
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Imagine telling your employer you need to take naps during the day as an adult good luck 👍. Most people don’t even take us seriously.
Hello, I have seizure disorder, take AED medication and am of very erratic sleep patterns. I believe sleep patterns are induced by said medications.
I HAVE NARCOLEPSY CATAPLEXY 71 WISH I COULD CONVERSATE WITH A NARK: DOCTOR REALLY CONCERNED ABOUT PEOPLE OF THIS KIND.
A LOT CAN BE SAID . I KNOW BACK IN THE 50'S IT WAS CONSIDERED TO BE A MENTAL DISORDER TILL THEY REALIZED IT HAD NOTHING TO DO WITH NARCALESPY
By law they have to accommodate you actually
It is now a law as Narcolepsy is recognized as a disability. Denying this would be no different than Denying accessibility to a physically disabled person in the workplace. Meaning the company could get sued up the wahzoo. It is important to get diagnosed absolutely to have stuff like this in the corner pocket
Come in with diagnosis on paper. That will help your case.
I am so sick of the "live healthy" message.
I never drink, never smoke, eat more vegetables and fruit than anyone I know, never eat junk food or sweets, force myself to go to the gym while most of my friends drink every weekend and under the week, smoke and eat trash.
it's NOT about a healthy lifestyle. fuck that.
I think you're missing the point. If you smoked and drank and ate like crap, your narcolepsy would be MUCH WORSE
I suffer from this,I started with medication for some months, then I stopped, now I drink 2 cups of coffee per day, one as soon as I wake up or preferably around 10-11 AM which is a good time to take full advantage of the caffeine (based on recent studies for cortisol levels and etc.), and one in the evening before 7 pm, because caffeine needs 6 hours to be fully processed in our body, so I can sleep with no caffeine circulating in my body and making my sleep difficult; caffeine might cause hallucinations, which I experienced more than once in sleep paralysis... It isn't the least funny or pleasant; 1 minute feels like hours of struggle.
And that's just the tip of the iceberg, cataplexy is mesmerizing; I was the kind of person that does things full; I laugh loudly, I appreciate things and love them as they come and easily get excited. Now that I suffer from cataplexy, I'm refraining from such emotions, because they could make me fall, and that's without taking into consideration; stress, confusion, and what not.
I'm the best kind of customer the media wants, if I'm at home, I got to play interesting games, watch interesting movies etc. All while ( sometimes ) still getting sleep episodes on my desktop.
If I'm out and alone, I got to put on my headset, whether be it listening to music or youtube videos, or I would fall asleep on public transport, and miss my stop.
I just wrote this where people can relate and know they're not alone; I'm male, 23, it isn't the least easy on me, even though I consider myself being a tough man, but, I had my own personnal issues which started this vicious cycle of sleep disorder.
I hope you all well, I hope that no more people will suffer from this, but more importantly, be happy that you are whole, if not, be happy that you have a mind of your own, appreciate little things in life, there are people out there who are having it much worse...
I end this with love and compassion for all.
no Caffine they say. yep, i get my 2 cups of Caffeine tea a day. cant tell but it does not seem to matter at night with this for me
Just coffee keeps you awake? Hahaha LUCKY YOU
This is incorrect. The half life of caffeine is 6 hours. For most people, drinking caffeine even in the morning is going to mess with sleep.
😏💕😀😏😏😀😀😏😏😏😏😏😏
@Mary Austin is Yes, I would appreciate it if you could give me his contact info
Unlike this video, those of us with Narcolepsy & Cataplexy..we aren't able to sleep for 6 or 8 hours.We have to take medication in order to sleep like that.
Yeah I didn't get the 6 hours needed to do my mslt because they took me off all of my medication beforehand. I woke up all night which is one of the symptoms.
Tortilla Chips so you are not able to sleep because you wake up all the time?
I sleep way too much. I don’t struggle to sleep ever. I sleep tons at night and still sleep during the day.
Megan Simpson you also have joints pain?
Christine Dehner hey i am from india i am a cabin crew how should i deal with it please help me
i have diagnosed with narcolepsy and catblexy since 2000 during these years i have noticed that
Yawning before the attacks of narcolepsy starts prvented me from both falling to sleep and also delay the cataplexy attacks.....anybody couls try that...
Your life will never be the same. I've had it since I was 22 and I will be 50 in October. I wouldn't wish it on an enemy.
I've had it for about 6 years but only just got a diagnosis at 16, a month before my final A level exams- I feel like my life is just down hill from here :(
It looks like I suffer from it my self. I worked shift's in my young years and thought maybe that was my problem.
In a way Ella you are lucky that you have discovered it at 16. I am in my forties now and I will need to go and have a diagnosis.
You can help to manage Narcolepsy by life style choices such as diet, exercise and getting a good nights sleep.
Do not worry it is not the end of the world.
16? A month before your final A level exams? You don't finish your A Levels until you're 18...
This is not a disease. One slips into theta and downloads information from other dimensions. These are gifted, psychic individuals. Science is WAY behind on this. There is more to this world. Always listen to your intuition. Took over 50 med combinations. Gave up. Started having visions and dreams that would come true a day or two later. Humanity is not ready for this information.
Musa Issa what is it called then?
This video is so basic it's almost harmful. Saying a person is just sleepy is misleading. It would have been better to explore what happens when people go decades not getting adequate sleep. I wish he would have discussed memory loss, brain fog, immune system breakdown, etc. Normal lifestyles? For one, Narcolepsy affects people at varying degrees, where some need to work jobs that involve constant movement and others can't keep a job and are on disability.
Also, our medical field is so dependent on drugs, that they spend little time discussing the important lifestyle changes Narcoleptics need to take, depending on the severity of their disorder.
I'm really disappointed in Harvard for this video.
yep & I have narcolepsy!
cmanbrazil I agree. I have just been diagnosed and I am trying my hardest to find answers that don't include medication. Can you recommend anywhere to read or watch videos please? Interestingly, the only person on our sleep study that was happy with medication was American. They had nicknames for 'meds' and 'scripts' for prescriptions. Cause and effect capitalism has really got its hands on health and big pharma.
vanderrhuc I suggest the many Narcolepsy groups on facebook and Narcolepsy Network's forum. On those sites you will find people who take a variety of medicines and those who do not. You will find people who struggle with Narcolepsy - with or without cataplexy- and how they work through life' challenges. Narcolepsy doesn't affect everyone equally, and some who have it suffer from other illnesses as well. I particularly like the Facebook groups I am a part of because I can find people who understand what I am dealing with even if it doesn't affect them exactly the same way.
Great points. For some reason N. is often talked about as a mere annoyance to be perfectly solved with pills. I think counseling and the grieving process should be the first step for a new diagnosis. What happens instead, is a movement towards denial of reality. It's a life altering and long suffering diagnosis. If grieving doesn't come first it will come after years of denial and struggle with confusion as to gravity of illness.
God create plants for every disease but they popping us with chemicals.
"am I going to be normal again?" : NO lol
When I’m in rem sleep during the day, about six to eight times a day. I don’t nod off to sleep, but rather, I keep doing my activities in a robot mode. Funny, I’m not aware of what I’m doing, I find my purse in the oven , my glasses in the freezer, my keys in a drawer. I can’t find things if I’ve put them away whilst I was in rem sleeps. Some are only a few minutes others only a few seconds.
Lol sorry but that is interesting life
I think iam also suffering from this problem
Same
Same
This doc and video is WAY to optimistic lol!!!! Almost making it out to be no big deal. It’s a disease and it’s debilitating!!! Don’t beat around a bush. My stimulants are my lifeblood and I don’t know one narcoleptic that gets by ONLY taking the “vigils.” I take Nuvigil WITH my adderall. It’s depressing as hell and it’s real
I feel you, I went cold turkey because of the side effects and ended up loosing my job because I couldn’t perform. As of right now there is no way out for us and it’s sad. Either take the pills with bad side effects or live a sub human sleepy tired life but sober. I hope future generations will not have to deal with this hell of a disorder that most people in our time don’t even take seriously.
Going through this because of epilepsy diagnosed at 30 have had it since I was 18 months old
I have Narcolepsy with Cataplexy and went through so many stimulants. Armodafinil was the best for me for a while but it did not make me feel better. It kept me awake but not alert and not rested. Cataplexy SSRI/SNRI did not help me whatsoever.
However Xyrem (Sodium Oxybate) changed my life. It was hard to get on, and starting side effects I was warned about were rough and lasted like half a year. But now Ive been on it for over 3 years and I feel amazing. Waking up in the morning I'm still groggy so take a low dose of Vyvanse to get going. Other than that without Xyrem I honestly feel like I would have killed myself at some point from not having my condition managed well and a not supportive family. Xyrem lets me live a mostly normal life and I'm eternally grateful for it.
so happy for you
There's anecdotal evidence that Desoxyn works better than the other amphetamines, but there's a stigma around prescribing it.
@@RedOakCrowwhy is that? I believe my doctor said something about this medicicationnbut wouldn’t tell me why he doesn’t prescribe it
I am also facing with sleep paralysis montly once or twice but no symptoms noticed when I did walk or run rest of the days as usual.
Usually when I’m in a quiet spot for too long that’s when I fall asleep but I can recall as a child falling the sleep while I’m eating
here with a rare form of chronic depression where I feel with low energy and sleepiness during the day, but i don't feel mentally depressed. it's more physical than mental. medications are useless for me. it's not a neurotransmitters problem in my opinion, i have tried everything. the secret is in the sleeping process. it's like we never fully recharge. now so desperate and hopeless that I will just try to solve the sleepiness with sleeping tests and narcolepsy medications or stimulants.
I was glad to recently find a video on narcolepsy by Seeker, as it explained to me what i might be going through. I've got an autoimmune disorder that my public healthcare system denies, I've been falsely diagnosed with psychosis by that system until a private system gave me a second opinion. Basically, i was paralysed and then my CNS went mad after i acquired the human form of swine flu from the first case in my local hospital, and this was one month after getting wisdom teeth removed. I have since noticed that i may be a carrier of it due to multiple tragedies of people dying around me, but of course those people were already vulnerable. Lockdown for covid provided me with some sense of faith in what had been happening and since the covid lockdowns ended I've been a bit less worried about carrying. At one point i was put on histamine control instead of dopamine control to help me get off the antipsychotics i was conned into taking. I only use vaping of cannabis now for what i describe as CFS and CNS dysfunction. My mood isn't alway depressed even though I do feel inclined towards depression due to how badly my situations in life have hurt me and other people I had known.
Good explanation....
Dang, she sure loves trees! That's actually really sweet.
So wholesome!
It was beautiful ♡
I have narcolepsy but cannot take any meds for it because I also have a disintegrating spine with 4 discs in my neck that have herniated and in my thoracic and lumbar regions too as per MRI scans and I have Fibromyalgia also so I am on very high strength slow release Zoomorph 100mg per day plus 300mg of Pregabalin. I wake up every hour on the hour at night because of pain, fibro and the narcolepsy so I have to sleep during the day for a few hours.
I had 2 doubts-
- Can psychostimulants like Modafinil be taken for life?
- Does learning a musical instrument improve narcolepsy?
thank you
I have had narcolepsy and cataplexy every since I was seven and I’m thirtynine I have the strangest dreams I have numerous sleep studies I do drink a lot of caffeine if I’m showing a lot of emotions usually if something is funny my legs wound go out and I would have bad seizures. I think personally I have grown out the seizures but I still nap all through the day and night and have the craziest weirdest dreams
When everybody thinks your lazy but you have tried telling them your always tired and sleepy This disorder is destroying my life. I hope my doctor prescibes me something that works because Armodafinil didnt do anything to improve my situation.
Congrats on making this mate. I'll put a link on my Facebook :)
i can sleep 18 hours..and still be sleepy, antypsihotic make me sleep deeper ❤
The single largest obstacle is the obscene cost of being diagnosed so that action can be taken.
And please tell us how one sleeps for 8 hours at a time without extensive medication????? Oh wait, one must be formally diagnosed first... LMAO!
Yet another pie in the sky video telling us how things should be rather than acknowledging and presenting viable options for what IS.
i use to sleep 18-20 hrs a day and could NOT wake up fully. THAT is narcolepsy.
In my experience of (admittedly low-grade) narcolepsy, Modafinil has it licked. 200mg in the morning, and then another 100mg before lunch. Your body doesn't absorb it so well if you've eaten, so take the additional dose before lunch!
See my comment above. This isn't something that needs to be treated. However, if you must go the treatment route, look into MAOI-A. Serotonin is the key. It is however not a disease. Long story...
Developed tolerance or not how frequently do u take it ??
there are degrees of narcolepsy. I've had it since i was kid and have always been able to get good sleep. for me sleep with narcolepsy is amazing.
Life style and health management are the key. Exercise, diet and good sleep patterns help.
Caffeine can simply make for more vivid dreams and subsequent exhaustion upon waking from a sleep during which the mind was hyperactive.
Thank you soooo much i love you
What I want to know is how many of these people took a flu shot prior to the onset of their narcolepsy diagnosis.
How many received Pandemrix?
Me
Me
@@stillstacy199 Sorry to hear that. Did your narcolepsy ever resolve on its own or do you still suffer with it?
Would taking naps count as sleeping time? I get out of work and usually sleep in the parking lot for 1/2 to 1 hour.
taking naps is a lot better than taking adderal
lol that's me. I'm not alone
Having a sleep disorder is something I hate because I want to do so many things yet I
Am unable to do anything except falling asleep
And Xyrem? Some experiencies?
Rutarca I've been on xyrem since February 2017. It's changed my life for the positive. I was so close to not being able to live in December 2016, it felt like I was shutting down. Once I got the diagnoses and xyrem and Nuvigil it's helped so much. There are still days where you will be tired and need to sleep a lot. But most days are good. It takes a while to recover some.
It's not an easy drug to adjust to and you get a lot of symptoms. It may take several months to find the right dosage but after you've been on it for a while it helps a lot. Felt more awake during the day but I still needed provigil. It's also incredibly expensive. They are coming out with a generic version soon though.
Dexamphetamine or Dexies my childhood
Lab Coats are IMPRESSIVE
desoxyn is the only med that works for me
Oxford Universityy Reеveals: Quick Insomnia Cureee => twitter.com/7b3c9fb14125d6cd5/status/804614583075733505 Treatment оf Naaarcoleeepsy
They took this med away from me.said it was.no longer used for narcolepsy I haven't been the same since.they have increased the drug to a point where I can't afford it.so every day is horrible
Even worse, people keep trying to paint you with all kinds of psychosis. If I'm working two jobs & I ran 12.75 miles in 2.5 hrs, I'm probably not lazy and crazy for being impossible to wake. That force holding down the marathoner must be something fierce. If we're going to blame me and my body, you should be suspecting NARCOLEPSY, you very obvious psychopathic narcissist with a stethoscope. My blood pressure is perfect, I eat reasonably, I don't drink, smoke, nor take any medications and on rare days I wake up fine, so I suspect something external. Doctor me.
C
There must be other ways to treat rather than drug/meds..... I’m so against it and will not take it.....
This illness is so underdignose and not well known. Not a lot of research in sleep studies. I hope there’s a breakthrough one day and we can get cured
Bloody looters