Treatment of Narcolepsy

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.

[Menof]

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.

[Gikarin.Gamemaster]

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.

[Mmksen]

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.

[lilyoh]

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.

[amedeocristiano]

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.

[lemonybasil]

"am I going to be normal again?" : NO lol

[christydeh]

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.

[cLorraine]

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.

[LisaJones-sqym]

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

[cudawantd]

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.

[BeeRich]

"Sleep at night, and nap." OK, that means my life is over. As a biochemist/immunologist, I've done everything, including being vegetarian and lost a lot of weight in a short amount of time. As much as I like that, and has it's served me, let's talk about the genetic factor that's unbeatable. And I'd rather hear about a coffee/stimulant regime before signing up for $500/month on SSRIs. I've already been through loads of this smoke show with my silly CPAP situation, which has proven not only long term annoying, but ineffective. I'm tired of waiting for silly doctors appointments months out, sleep studies that aren't optimized into a single situation, and the frequency I run into 'sleep hygiene' recommendations. I can sleep on a bicycle tour mid-day which forces me to abandon my bike and fall asleep in the grass, but somehow the recommendations are a glass of warm milk.

[slambangwallop]

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.

[agoodsort]

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 couls try that...

[charmaineramjit]

I had it for 2020 years..2023 it as very bad and embarrassing falling asleep every where. But l have not used any medication but drank lots of water and 3 course of Mutrophos nerve and tonic with vit B it helped me very well. I did not even noticed l was not falling asleep any more. It stop

[cmanbrazil]

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.

[stellaancimer]

i can sleep 18 hours..and still be sleepy, antypsihotic make me sleep deeper ❤

[garrettmulchrone]

Dang, she sure loves trees! That's actually really sweet.

[captainroastabotch]

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.

[sassy]

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?

[Belovedc]

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.