Taking Charge of Your Health

[MACHINE WHIRRING] [LAUGHTER] When I was in high school, I
didn’t want to take medication. I realized that I have to. See for me, I like just
having natural sleep. It’s just that– There’s a dramatic difference. Since diagnosis, it
took a little bit to really know which
drugs work best. If I don’t go to bed early,
I’m more sleepy during the day. And no matter how
tired or groggy I feel, I drag myself out of bed and
I go for a run for at least 20 to 25 minutes. It changed my life. [BIRDS TWEETING] I’m Audrey Cross. And I have narcolepsy
and cataplexy. I love plants or
really pretty trees. That’s made me cataplectic. Because I get excited
about plants a lot. And it’s kind of weird. And people don’t know what
the trigger is sometimes. Because other people aren’t
as excited about that tree as I am. Getting the diagnosis meant
that there was something that could be done about it. My mom found a
great doctor for me. And it’s been helpful. Hi. I have an appointment
Dr. Kirsch. Come in, Audrey. Have a seat. Thank you. Audrey is a
college-aged student who presented with
sleepiness and episodes of falling that weren’t
really well understood. And she underwent sleep testing. And that demonstrated
that she had narcolepsy. It’s really
important for anybody with a sleep
disorder, particularly people who have narcolepsy, to
get enough sleep at night time. OK. A person with
narcolepsy should aim for at least eight hours
of sleep every night and on the same schedule. Number two is
napping when you can. Because at some basic level, we
know you’re going to be sleepy. But a lot of caffeine– Generally, good
health is important. Trying to minimize
the amount of alcohol. Keep in a good exercise pattern. Limiting smoking and drugs. Leading that healthy
lifestyle will lead to potentially
improvement in sleepiness. Even with a good
behavioral program, they’re going to require
some amount of medication to be well controlled in
terms of their sleepiness and/or their cataplexy. OK. There are two problems
that people with narcolepsy typically have. One is the sleepiness
during the daytime. And the other is the falling
episodes, the cataplexy. So let’s talk about
the sleepiness first. OK. There are two medication
classes that are typically used to help people stay awake. One are kind of
standard stimulants. The problems with the stimulants
are that people sometimes get some side effects. They get a little jittery. They get some palpitations
in their heart. We also have a
second class which is modafinil and armodafinil. And these are stimulant
medications which work a little bit differently. But they do tend to
have less side effects. And often that’s where
I might start with using that kind of medication first. And if it’s not effective,
coming back to this older classification of medications. On a personal level, I try
to find a medication that works in a long-acting way
as a baseline for alertness during the daytime
and then spot treat with short-acting
stimulants if I need to. Then we have the cataplexy. If cataplexy is happening
a couple times a day– which it sounds
like it is– to me, that sort of defines
that we should think about trying to
treat you for cataplexy. And there are a couple kinds
of treatments for that. When you’re talking
about cataplexy, you’re often talking
about using either an antidepressant medication,
tricyclic antidepressants, or SSRIs or SNRIs. The newer ones tend to have
less side effects than the older ones. The last medication that we have
to potentially try and get you under treatment is a medication
called sodium oxybate. It’s a very specific
medication that we only use for narcolepsy. It also seems to make
people’s cataplexy much better controlled. And it makes their sleepiness
a little bit better. It knocks you out so that you
can get a really deep sleep that narcoleptics
don’t tend to get. With any of these
medications, it really is an individual treatment. It’s something that you
would start as low as you can and slowly move up, trying to
manage the symptoms as best you can. Do I have to take a
medication forever? You’re going to need to have
probably some medication. Yeah. What I would say is these
medications, not necessarily. Remember that we
constantly evolve in terms of our
understanding of disorders. And things change over time. So I never tell
anybody that you’re going to do anything for
the rest of your life because medicine continues
to evolve over time. With medication and
better sleep habits, is there a way that– am I
going to be normal again? You’re going to have
to adapt your living a little bit to having a
diagnosis of narcolepsy. But what I would
say is many people with narcolepsy, when
adequately treated, can live fairly normal lives. The doctors that
I’ve had have really tried to help me be able to live
my life the way that I want to. I need to get eight hours
of sleep at night minimum. And I need to have a
regular sleep schedule. And I need to have a 20 to
30 minute nap every day. I’m just in sync now with
carrying medication with me. I have a keychain container. And I keep it in my wallet. And it has backups of whatever
medication I might need. And that has managed my
sleepiness really well. I’ve been able to stay
awake through some classes that the average person
falls asleep through. And that feels really good. Because I look around and
all my peers are asleep. But I’m able to stay awake.

25 thoughts on “Treatment of Narcolepsy

  1. 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.

  2. 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.

  3. 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.

  4. I've heard that Modafinil is very effective for Narcolepsy. I've got an impression that it's one of the most decorated medications ever.

  5. 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.

  6. 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.

  7. Hello fellow narcolepsy patients.

    Unfortunately science don't know much about narcolepsy yet. There are no proven cure for it. To help with the symptoms, drugs are the best option.

    Modafinil is the most stable and safe drug you can get. However it is known to cause severe anxiety after some time of use. The next option would be Methylphenidate. Its side effects are much more vague than modafinil and the experience really varies from person to person. Other options would be adderall, xanax, xylem, GHB or effexor. I personally don't recommend adderall since it is known to cause brain damages. Most people just go for Modafinil or Methylphenidate.

    Other treatments than medications would be exercising/healthy diet and good mental health. Depression is known to cause fatigue.. but honestly you shouldn't expect much from simply exercising/eating healthy.

  8. 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…

  9. I actually had Dr. Kirsh as my sleep doctor hes at CHS (Carolina's Healthcare System) very smart guy but he told me I had to go to rehab and didn't prescribe me my stims damnit

  10. 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!

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

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