IamA 16 year old male that has narcolepsy. Worst sleep disorder!!!! AMA!

Do you know Tyler Durden?

I love Fight Club, one of my favorite movies. He has insomnia though, which is the complete opposite of narcolepsy.

Not necessarily! One of the main symptoms of Narcolepsy is disrupted nighttime sleep which can keep a Narc awake for hours at a time when they are trying to sleep!

Im a narcoleptic myself. I dont really have a question, just happy to hear you're doing well in school. I've had it since my young teen years, but I was never even close to diagnosed until last year at age 25. I was told by doctors and people of authority that I was too lazy and that I just needed to try harder, but I was having so much trouble that I began to think I was incapable of succeeding. At the Narcolepsy Network Conference, I met numerous teenagers who knew of their ailment throughout school, and each one of them was driven to succeed and armed with knowledge of who they are, and no shame associated with it. It was the most wonderful thing to witness. I have no doubt that if I had known then, my life would be significantly different. I hope you keep doing as well as you are doing; it is incredible what you are doing with what you are working with. You are a role model, and are evidence of the power of awareness.

Thanks alot dude, this made my day.

How much does this impact your relationships with friends at school? I can imagine high schoolers can be pretty big dicks about something like this. I hope they aren't.

It doesn't impact relationships that bad. It depends on how I'm feeling. Some days are worse then others. There has been times where I didn't want to go out because I was feeling too tired. Also, I missed a party because I feel asleep. I have a good group of friends though that I hang out with a lot. I definitely have a good social life, and try to meet as much people as I can.

That's good to hear you have a good group of friends. I'm sure they understand if you don't meet up because you fell asleep. I could see that being a bummer missing out on stuff though.

Yeah they are defiantly good people. My school is pretty chill with everyone too, so ive never been made fun of for it.

If someone without narcolepsy were to take the meds you take to stay awake, would it act as like the ultimate energy pill?

My friend was on the verge of not graduating, and asked for a couple pills. He stayed awake for 3 days and finished a whole school years worth of homework. Just for the two classes he was failing, which is still impressive. He said that it felt like adderall.

Would you mind telling me what the name of the drug is?

Provigil.

How often does it occur? Also are you not allowed to have a drivers license? Ever randomly happen in public?

Narcolepsy is for life. Scientists say the feeling you have after staying awake for two days is equivalent to the a normal day of a narcoleptic. I do have my drivers license, thankfully! Just as long as I take my medication. I choose not to drive if im feeling drowsy or if its nighttime.

This is interesting... I met someone at work who also had narcolepsy and she was not allowed to drive at all. She also carried a disability permit, which gave her a discount on bus fares and such. I suppose this a UK thing, and perhaps there is no agreement among the general scientific community on best practice?

To follow up with a question of my own. Are you involved in research in any way (participating in trials, PPI etc), or do you keep up with it at all?

Depending on how bad your narcolepsy is, they won't give you a license. Also if you get into a wreck because of it, they will take it away.

I'm not involved in any studies, I would though if I was asked. I defiantly would sense it's not that common.

How fast does a SP come on? Is it like a light switch (like falling over?) or do you just have the urge to lie down and take a nap?

Sleep paralysis only happens when I'm going to sleep. My cousin has cataplexy and that's when you brain goes in REM even when your awake. I can feel it coming on. My ears will start humming, when I hear that I blink my eyes and that sends a message to my brain that I'm awake and I'll snap out immediately.

It's really strange what your describing, I have that happen to me, and I usually feel like I have to force through it to start moving again, like I have to burst through a barrier or something...

In fact, I can induce mine deliberately by closing my eyes and focusing on a ring I have in one of my ears due to nerve damage.

It's just so strange to hear someone describe something with such accuracy that I thought was a personal experience.

However, I suffer from insomnia fairly badly, sometimes staying awake for 14 to 16 hours and only sleeping 3 to 5...weird we should have the same experience.

Sleep paralysis can be be triggered by multiple things. One of them being sleep deprivation. People with insomnia report having it too, so its completely normal.

Are you awake right now?

I am actually hahaha. I'm drinking coffee and finishing up my summer assignment for AP Language Arts.

Drinking coffee. So, did your condition directly contribute to you abandoning your Mormon faith? (I'm not a Mormon, no judgment here, just curious).

I've always thought Mormonism was a little odd. The teaching of becoming gods after you die, magic underwear, polygamy, weird stories, and no science to back it up. Im kind of agnostic right now, I haven't completely shut off Mormonism from my life. I still go to church with my family and go to seminary (parents make me).

Fair enough. They probably wouldn't let a narcoleptic serve a mission anyways. ;)

Hahaha I dont see myself going on one. They let just about anyone go, they keep medicated people in the states though.

what is this magic underwear you speak of?

This chick explains Mormon underwear pretty good lol.

https://www.youtube.com/watch?v=5BurvEt_y1k&list=UU12W2GUsz4t6iM0qN3hESQQ

I'm assuming you have tried using modafinil?

Modafinil is generic Provigil. I was on the regular Provigil for a couple months but it was way to expensive, so I went generic lol.

How do the teachers deal with this?

In middle school I would actually get into trouble for falling asleep. The teachers would write me up for it because I did it so much. They discipline system is like a ladder. Each punishment would be worse then the pervious one. I was at point I would get suspended for sleeping. So stupid. Now, I'll tell my teachers that I'm a narcoleptic and they are chill with it. I don't sleep much at school because that's when the medicine is working best. I still do though. Most of them are pretty intrigued by it and ask me all kinds of questions.

Are you always the first person to get drawn on when you fall asleep at parties?

Surprisingly, I've never been drawn on hahaha.

Thanks for doing this--I find this all very interesting!

What was the diagnosis process like/what sort of tests did they run on you? Did you ever have SP during the diagnosis process?

My family has been on me to join a sleep study so I'm very curious about your experiences. I had very similar EDS symptoms in high school-college (couldn't stay awake in class for the life of me even with normal sleep hours and my notes would turn to jibberish...it was embarrassing) although it's not as bad now days. I do, however, have consistent SP episodes (especially if I try to sleep in) but unlike you, I freak out every time--I hallucinate occasionally but just the fact that I'm locked inside my immobilized body is enough to panic me.

Glad you're doing well now and great job in school!

The tests weren't that bad surprisingly! They stick you in a room that is way nicer then a normal hotel room. They hook you up to a bunch of electrodes to measure brain activity while you sleep. You stay in that overnight, then the next day take 5 naps separated by an hour. It was just like a mini vacation of just chilling out hahaha. A couple weeks after, we went over the test results and it showed my sleep cycle and how abnormal it was. I didn't get SP during the study, but it did show how off my sleep cycle was. Also showed how quickly I fell asleep and going into REM instantly which isn't normal. Overall, pretty smooth and glad I did it (:

I would say that if you have EDS and frequent SP I would get a sleep study done. Only if you think it would help you! You might have narcolepsy with those symptoms! They will give you meds that keep you awake and alert all day, but nothing for SP.

How effective is the medicine? And how often do you fall asleep when you shouldn't? Ever pretended to fall asleep to get out of something you didn't want to do and blamed the narcolepsy?

Its pretty good! Keeps me wired for the whole school day. By the time I come home, it has worn off. I usually take a nap, then do my homework. If I have work or activities to do, Ill drink coffee.

I try not to fall asleep at inappropriate times. Still happens though, usually when im not doing anything with myself.

I try not doing that because I don't want to be looked on as lazy potato or something. I try my hardest not to. I do however tell my parents I feel asleep at my friends house, when I was out partying or doing something just to stay out later.

Have you ever fallen asleep during a test and nobody noticed it?

I did that quite frequently in middle school before I started self medicating with coffee. Now, I rarely do that. During assignments sometimes. I have once on a test, but the person next to me woke me up.

I have epilepsy and I have sleep paralysis episodes somewhat similar to yourself in regards to sleep hallucinations. Do you ever have sleep hallucinations and are able to move, talk or walk around and more like see your dream? I can and I wondered if your sleep disorder would give you similar sleeping issues. And if so what are your experiences with them like?

When I get SP, I cant talk or move. However I have projected some vivid and realistic dreams in it. Ive seen the moon over my roof with a bunch of flying stars shooting all over the place, that was pretty cool. Angels flying through my window. Just a bunch of random stuff that only your dream mind would make up. Ive never felt myself walk around, however I have felt myself floating. I wouldn't be surprised that you feel you can do those things though, everyone's brain works differently. It just shows your creative dreamer.

Thanks for doing this, it's super interesting. Is physical activity hard for you? It seems like the less sleep I get, the more hard it is to work out.

Only if I haven't took medicine. Ill feel to tired that I wont even work out hahaha. But when I have took my meds, then no. Its super easy, just like working out normal.

Do you ever use it as an excuse?

Like Narcoluke, didn't say we would meet at the library at 4 pm?

Sorry bro, I fell asleep.

I try not to. I have a couple times if I'm really not feeling something. Usually I use it on my parents. Like if I'm out all night and was supposed to be home at 12 I'll say I just fell asleep.

Homer is also narcoleptic. So you've got that going for you, which is nice :) Seriously, thanks for doing the AMA. I have personally experienced SP and it is not a very pleasant experience. Fortunately, I just wake up paralyzed and unable to shout --- just a silent scream for help, that's it --- and don't see any "people" watching me.

Anyway, does SP mean narcolepsy is likely in the cards for me in the future?

No problem (: yeah SP can be pretty terrifying.

And no don't worry!! 50% of people of experienced SP at least once in their life. Your body paralyzes itself every time you sleep in REM to prevent yourself from running out your window, or hurting the person you sleep with. Narcoleptics REM almost instantly, so sometimes they go into REM even when they are still awake. Dreaming, paralyzed and awake... Pretty weird. It's not uncommon to get it a couple times. A lot of different things can trigger it like stress, abnormal sleep patterns, etc. But if it's repetitive, then maybe.

Hey man, so sorry to hear your condition. I had a sleep disorder as well and the only thing we wished was 'I hope it is not brain related' (turns out it wasn't). People do not understand the effect of not sleeping well for a long time on a person, telling you to 'brush it off'.

So my questions: 1) Did you have trouble explaining the situation to your girlfriend/friends/some family members? Before you got 'used to it', of course. 2) Are you worried about work life? I had the disorder when I was finishing my school and starting to work, and I had to quit because not enough sleep - errors at work - I quit the job. I would have been fired anyway. Yours is a more severe disorder, how do you think it can affect your work life?

Thank you for doing this, and hope everything goes well for you!

They all know that I have it, so it's not that bad. Sometimes if I'm extremely tired and not enthusiastic to do anything I gotta tell them why.

I think that if I worked at a place that was sitting down, and not getting exercise it would be a problem. I work at McDonalds right now (shitty job, but your constantly doing something) and your always walking around and doing stuff so it's never a problem. Meds and coffee help too :)

What was your sleep disorder?

How accurate is the portrayal of narcolepsy in the movie "My Own Private Idaho"?

I didn't know what movie that was so I watched the intro to it. The part where the guy fell over is accurate. Thats cataplexy though, which is something I don't have. 70% of narco's do though, so im super glad I dont because that would suck.

When you fall asleep do you still have dreams? or nightmares etc?

Im not OP, but I can answer your question...

Depends on what stage you fall into. From his posted sleep study, his first "nap" he spends lots of time in REM. In REM sleep you experience "dreams" , which may or may not be "nightmarish" in nature. Things like that are characteristic to each individual. If you fall into a deeper sleep, you are less likely to dream.. not saying you cant, but less likely, and even more less likely to recall any of the dreams once you awake.

If he had narcolepsy with cataplexy like his cousin, the answer to you question may be "yes", because by definition cataplexy is the sudden loss of muscle tone caused by the onset of sleep paralysis which is brought on the body by the body entering REM.

This guy answered it very good! Thank you! Yes I dream every night. I remember all of them, and have kept a dream journal even before my diagnoses just because I would dream so often. Nightmares are rare.

I also take modafinil, but only to improve my concentration for school. What dosage do you take? I only use the odd 200mg pill in the morning.

I also take 200 mg. I will take a half pill in the afternoon sometimes if it's worn off and I'm feeling sleepy.

I sometimes have a bit of a headache, but I've never felt tired. If anything, I struggle to sleep.

Ate you prescribed the pills? They're difficult to get in England.

When I first started taking them I hated it because I got a headache every time!! I felt nauseous too. My body adjusted though, it only lasted a week.

Since you have been drinking a lot of coffee during your lifetime, do you try different flavors/brands? If so, do you have a favorite?

My favorite is easily caramel or french vanilla. (: but 150 calories a day, 7 days a week adds up. I now drink it black, iced. Cut calories over time hahaha.

How many times have you fallen asleep doing this AMA?

Any sex dream hallucinations?

I wrote this over the course of a day and half. I began to do it and ran out of time because I had to go to work. I came home and slept overnight. Woke up and finished it, then posted it. So only once, which is good hahaha (: and no I've never had sex hallucinations.

Ever had any Lucid Dreams after those SP episodes?

YES! I have once a couple days ago actually! It was crazy! Felt super vivid and real. I think I might write about it on the lucid dreaming page, because it was pretty wild. My friend told me about wake induced lucid dreaming through sleep paralysis and figured I would give it a try. Glad I did, I'm gunna try to do it next time I get SP instead of snapping myself out like usual.

How does caffiene play a role in your life? I noticed in another comment you said that the feeling of being awake for two days is the equivalent to a normal narcoleptic day, and I'm just trying to process that.

It's not often, but when I'm awake longer than 24 hours I find myself relying quite heavily on caffienated beverages despite only really drinking 1-2 cups on a regular day. Are your caffiene habits greater than an average person? Is it strictly coffee, or do you use caffiene pills and/or energy drinks? What keeps you focused, awake, and alert?

I find I'm grumpy when I am sleep deprived, would you say it can affect your mood similarily? How do you cope?

Caffeine defiantly helps a lot! I usually have a 24 oz thermos that I put black, iced coffee in. I drink it when I feel the medicine wearing off. Sometimes a cup later in the day. Yes, probably. I drink a lot of it. I've always felt self conscious about brushing my teeth a bunch just so my teeth don't get yellow from it. I've never tried caffeine pills, actually! I was actually recently looking into that to see if I like them. I hate energy drinks lol. They taste gross plus they give me a weird, fidgeting feeling. Things that I find interesting it can focus in for awhile. I like reading nonfiction books about something interesting. If it's not, I'll probably doze off. Exercise is a must too! Going to the gym in the morning makes me feel more awake the whole day then if I didn't. I do get irritated easily if I'm really tired. I keep it to myself though, I won't snap or be rude to people.

Get any side effects from Provigil?

When I first stared taking it I got headaches and felt nauseous. After a week or so it went away. Now, I don't have any side effects which is good.

When was the most embarrassing time you've fallen asleep?

Funny story. My friend was having a kickback at his house and everyone was having a good time. I smoked some weed (doesnt help narcolepsy lol) and was pretty stoned. This chick started hitting on me, next thing I know we're in a different bedroom naked. We started to have sex without a condom. I shut my eyes to just lay back and enjoy it because she was doing all the work. I then fell asleep (whoops). Then I wake up from the feeling that I'm about to orgasm. I immediately said "get off me! get off me!" I pushed her off me, and jizzed on my stomach. Pretty embarrassing lol.

How do you feel about the song "Let The Bodies Hit The Floor"?

I don't have cataplexy.