IAmA 16 year old girl with narcolepsy and cataplexy, as well as other various sleep and miscellaneous disorders. AMA

When you wake up, do you feel like you've taken a long nap (so relaxed) or do you feel like you were woken up by someone abruptly?

I always feel refreshed, even if it's just a 10 minute nap. After 2 or 3 hours though, I'll feel exhausted again like always.

That sounds really hard to live with. :/

Does this also mean that you're often up at night?

Yeah. Every now and then, I'll have nights where it feels like I don't fall asleep at all. I probably do get some sleep, but I know it's not much. That actually happened about a month ago, but for two nights in a row. More often, I'll wake up a few times throughout the night and not be able to fall asleep for another hour or so.

Last question, what's your favorite television show as of right now?

South Park. I actually don't watch any other TV, besides the NFL when it's in season. [edit] Actually, I take that back. I watch Avatar: TLAB every now and then (I made the mistake of having my mom watch it with me and now she's hooked) and I'll be watching the second season of The Legend of Korra when that comes out.

So what are your hobbies?

I love to play soccer, but unfortunately I'm not able to anymore. I used to play through the YMCA, but the age cutoff is 14. My school doesn't have a soccer team, and it's against state law for me to play for a different school.

Video editing is a lot of fun too. I make things called AMVs, which is short for "animated music video" if you don't know what they are. You take a song as well as footage from a TV show/movie/anime series and make a music video with it. I've been doing that since the 5th grade.

I have a dog and a cockatiel for pets. My family also runs a very small dogsitting business, where we watch dogs (and sometimes other pets) for friends and family when they're on vacation or something.

And the only other one I can think of is Spanish. It's my best subject in school and even when I'm at home I practice and try to learn new stuff as often as I can.

Suck-y about the soccer team :/ would the narcolepsy affect your ability to play at all? Although I guess its kind of a non-issue now.

The video editing sounds awesome!! I'm not very creative so people who can do artsy things blow my mind away. That could also be a really cool career path in your future.

Stick with your Spanish though! I'm in college now and my adviser is always trying to get me to take Spanish courses. Some companies will offer HUGE salaries to people who are fluent.

Hopefully soccer won't be an issue for much longer. My school's football stadium is in really horrible condition. I mean, it's 40+ years old and literally dangerous. We haven't been allowed to have a track meet there for two years. It's about to be rebuilt, and to get turf we had to have two teams practicing on the field, so we're getting a soccer team in the future. Only problem is, it may or may not be before I graduate.

I would definitely love to do something with my editing for a career. My absolute first choice DREAM job would be to edit movie trailers. I can't imagine my chances of getting something like that are good though, so I'm not really sure yet. If you're interested in looking though, my Youtube channel is Aravias101010 :P

And trust me, I will! Spanish is the first thing I've ever found that I have a natural talent for. It fascinates me and I just love learning it.

Thanks for the questions :)

Is your cockatiel winking? Hahaha!

Haha no, if you look really closely you can see that his right eye is open too. He looks like he has beady black eyes, but they're actually just dark brown. :)

Got a link to your youtube channel for your AMVs?

http://www.youtube.com/Aravias101010

Try out Adventure Time, it has an underlying adult humor to it and a great story.

My best friend loves that show.. I've never gotten around to watching it. I really should, because children's shows that are secretly for older audiences are my favorite lol.

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That really touched me. I'm very grateful that my narcolepsy isn't quite that extreme. My aunt is the one who passed it down to me, and she sounds a lot like your ex-girlfriend. She even falls asleep while she's driving sometimes.

My ex-boyfriend has the same attitude that you do, too. He never minded all of my problems, and I'm confident that we'd still be together if I was normal. Even our friends' parents thought we'd be together at least until the end of high school. But his mom thought I was just lazy and weird, when in reality I have all of these problems. She ended up banning me from their house, meaning we could never get together, and things got worse and worse until we eventually had to break up.

I hope your ex-girlfriend doesn't have that happen to her, too. Having people think that about you when you honestly can't help it is crushing.

Looks like this thread is over, but may I just say:

Your ex-bf's mom is an insensitive bitch.

She's actually really nice to most people... she just had a problem with me, for some reason. I tried as hard as I could to always say thanks for the meal, thanks for letting me come over, thanks for taking me with you, etc. and to be as nice as possible. I don't really know what I did wrong.

Nothing. Plus you were dating her son, and some mothers feel very threatened by that. I remember the terrible shitfest which was high school dating, and my mom ALWAYS hated my girlfriends. ALWAYS.

Later (like, recently, because I'm getting married and moving out) I realized it's because she just doesn't want anyone to take her little boy away from her. It's kind of touching actually. At any rate, it isn't you I'm sure.

Well, she flipped out when she found out I'm an atheist. That was when she stopped letting him see me, so maybe it's a little of both. I don't condemn her for acting the way she did, I just wish she had given me more of a chance.

I've been on both sides of that shit before.

Ultimately it sucks, but life moves on. She'll probably be a bitch to every girl he brings home, and some day he'll be old enough / wise enough not to give a shit about it and date her anyways. Maybe in 2, 4, 10 years time that girl will be you again, who knows.

And if not you'll find someone whose mom thinks you are the absolute shit, and at the end of the day everyone gets what they want (except your exes mom, because she's an insensitive bitch).

Interesting AMA by the way, narcolepsy is one of those things that is common enough that everyone knows it exists, but uncommon enough that nobody knows anyone with narcolepsy. Really interesting topic, thanks! :)

Well, about that... he's dating one of my friends. And they both tried to hide it from me. There's more to the story than that, but I won't go into detail because I'll go off on a rant and I doubt anyone wants to suffer through that haha. I'm a very angry person on the rare occasions that I'm actually angry about something. I'm pretty sure his mom LOVES her... she went out and bought her a Christmas gift, without even asking my ex to go with her. May also be because my ex's family is rich, and his new girlfriend's family is rich, and I'm like... lower middle class. Very lower middle class.

Well thank you for the questions! An AMA wouldn't be an AMA without the questions. :)

Ouch! Been there too, like the time when my best friend (at the time) convinced me to break up with my girlfriend of 2 years, and then later that day when I went over to her house to pick up some of my shit, they were makin' out on the front porch. That was a good day.

Then her best friend was like well, that sucks...but I've always liked you, so we can go out now right? Except apparently my ex threw down an ultimatum saying that she wasn't allowed to date me (even though my ex was dating my best friend). WTF! High school man, high school. That shit blows.

Good luck with everything anyways. High school gets more and more terrible until you graduate, then you hit college (or real life, if you aren't going to college) and suddenly everyone is mature and not an asshole and life is awesome.

And there is more time for mid-day naps :)

Yeah seriously, whoever decided it would be a good idea to invent high school was a total dipshit. I'm really excited to get out of here. High school, this town, and this country. Here I come Canada, get ready! >:)

How is it at school ?

This is the first school year that I've had to deal with my narcolepsy on a major scale. In previous years, I could feel myself getting tired and losing focus, but it's a lot worse this year. I used to have almost all A's with a B+ or two in there somewhere. Looking at my grades right now, I have 3 A's, a B+ and two C's. There are two other classes with no grades recorded yet. The classes that I fall asleep in most often are the ones with the C's.

The teachers aren't allowed to wake me up because I have a doctor's note on file. I'm thankful for that, but at the same time, I wish I could be awake to take the notes that I'll need later to study.

Which classes do you fall asleep in the most?

History, which is at 10:25 AM through 11:10 AM. Not really sure why for that one. Algebra, which is at 11:45 AM through 12:30 PM. That's most likely because it's right after lunch. Some narcoleptics tend to need a nap after they eat.

Those are just the two that are most common. I've fallen asleep in all of my classes before at least once each.

History is a very chill class. It's like story time. Math is the most boring subject to me. Those two classes are understandable. I think most people get drowsy after lunch.

I have two history classes though, and I only fall asleep frequently in one of them. That makes me doubt that it's because the class is slow-paced... but I could be wrong.

I realize teachers may have a problem with this, but one easy solution is to buy a voice recorder (a good quality one, used for researchers to record interview - they can suppress background noise automatically) and record the courses in which you usually fall asleep. This way, you can just listen back to what you missed later, and take notes out of that. You can even purchase electronic pens that allow you to take note while you are recording and that can then synchronize the recording with the note taking, letting you know what the teacher was saying at the moment you took a given note. My Girlfriend has narco, by the way - which lead me to this thread. She has 2 wonderful kids and a good job now, so hang in there, you can go through this :)

I'd have to check the school handbook, but I don't think that we're allowed to have any kind of electronic devices, not even for the purpose I'd be using it for. My school can be really weird with their rules.

[edit] Hearing that about your girlfriend is reassuring. Luckily, I have one less obstacle to overcome than she did.. I don't want kids haha. I'd rather have birds and dogs.

Can't your teachers write notes for you? If you can't help falling asleep and they aren't allowed to wake you up then it seems silly to me that they wouldn't try to help you. It's really not fair that your grades are slipping a little due to this. :/

Sometimes I borrow notes from friends to copy into my own notebook, but even then it's not the same as hearing the lecture.

Are you allowed to record the lecture? I have trouble paying attention in class because I'm usually so tired during the day. I get energy spurts at night and can't sleep well. So I end up recording my lectures with my phone and listen to them when I do have the energy.

Edit: Nevermind. I saw your answer to the same question a little too late.

That's okay :) I appreciate the thought.

Couldn't you get a tape recorder? Most (all?) smartphones have a recording app or are able to find one in the app stores. Then you can relisten at less tiring time.

Lol, the thought of my school allowing cell phones is hilarious. They don't even let us use them on school property. It's ridiculous.

I just want to second angelica's comment - if your grades are suffering, you should ask for more accommodations. Narcolepsy is a real disorder that causes real impairment of functioning, and you shouldn't have to suffer academic consequences over it. Speak up for what you need. A tape recorder for lectures is a very reasonable accommodation (and no one would bat an eye if a student with, say, a muscular or skeletal impairment who was unable to take notes on their own used a recorder). There are plenty of them out there that aren't part of phones and don't have any distracting abilities - all they do is record. Talk to your guidance counselor or advocate or whoever deals with special education services at your school, let them know that falling asleep in class is hindering your ability to get good notes/absorb the lecture. Narcolepsy is a recognized disability, meaning you're covered by the ADA and IDEA - your school is legally required to provide reasonable accommodations to help you keep your narcolepsy from adversely affecting your education.

I was 19 when my narcolepsy was diagnosed, and I sometimes wonder about a few classes I had in high school - if I'd been diagnosed then, and had some accommodations, there are a few classes I expect I would have learned a lot more in (my physics class comes most to mind...I'd regularly fall asleep during the lectures, and missed a lot. The only reason I managed a B- in the class was a lot of tutoring from my friends).

Ditto this comment! If you are in the US your school must comply with ADA. Look into it and demand your rights! Your education is too impotent to take this lightly! If you go to the online forum on Narcolepsy Network's web page you can get a lot more info. on this. Accommodations your school should provide you with include a place and time to take needed naps, recording of classes, and extra time to take tests. I was diagnosed with narcolepsy without cateplexy in 2006. I am in my mid 40s but through narcolepsy sloppy groups and national Narcolepsy Network conferences I've gotten to know many young people with narcolepsy, at the elementary, high school, and college level and have learned a lot about dealing with narcolepsy in school through them. You are welcome to PM me about it if you want more information/places to get more information. Edit: narcolepsy support groups, not sloppy groups!

Impotent education and sloppy groups... you're really good at making funny typos haha. Thanks for the laugh.

Anyway, the school year will be over next month, so I probably won't look into it until next year. We've gotten through the bulk of learning, we just have to finish up a few chapters and then take finals. I don't feel like it's necessary to get all that stuff on file until next year, because by the time everything's arranged, the school year will already be over.

I'll see if I can do something. Any idea where I can buy a tape recorder? Do they sell them at places like Walmart or will I have to order one online?

Then a simple tape recorder with no other features? There are ways to get accomedations, like the doctors note you have already. If you're graduating soon though, college should be better about allowing electronics. You'd at least be able to have a phone set to record sitting on your desk, as long as you're not playing on it. I've done that for long classes where I end up bored, restless and distracted. Hopefully you're able to find something that works for you.

I have the rest of this year to go (5 or 6 weeks) and then junior and senior year. If I have as much trouble in the next two years as I did this year, I'll look into a way to record the lectures.

Doctors note. You could get an MP3 voice recorder that isn't a cell phone as well.

I could look into it, but I don't think my school would allow it. They don't allow any kind of electronics. Not even before or after school hours.

Have you ever fell asleep while you were bowling?

No. My narcolepsy isn't so bad that I just fall asleep at the drop of a pin. It's more like I'll feel violently sick and I have no choice but to go to sleep to make it go away.

The teachers aren't allowed to wake you up? What happens when the next class comes in an you're sleepin in someone seat? Haha

I got the doctor's note mainly because one of my teachers takes points off your grade if your head is on the desk at all. I didn't feel like it was fair for my grade to go down because of something I can't help. But I also asked that the teachers couldn't wake me up because of the sickness I feel if I don't sleep. If they wake me up, then I just get to sit there and feel sick.

The bell to go to the next class always wakes me up, so I don't have to worry about being tardy or taking up someone's seat lol.

You sound Awesome.

Aww, you're sweet :) I'd return the compliment, but it's hard to judge someone's character based on a three-word comment haha.

i've read that your aunt fell asleep when she was driving isn't it quite dangerous?

Yes, it's very concerning when that happens. A month or two ago, she fell asleep while driving, ended up in the wrong lane, made a U-turn while she was still asleep (automatic behavior), woke up, then pulled into a parking lot and slept for two hours. She got back on the road, made it to the next exit, and needed to sleep again. So she pulled into another parking lot and slept for another two hours.

She's on medicine now and hasn't had an incident like that since.

not to sound rude, but why driving license is given to her? she is creating danger for others and her self. i dont think in my country it would be posible to get premision to drive with condition like that.

Not rude at all, I understand your concern. I can't remember the entire story, I'd have to ask her. She's on medicine now though, and there hasn't been another incident like that.

that is good to hear, i wish you good luck in your life my fellow human

Its definitely great to see her feeling better. Thank you :)

Are you more tired when boring or it is just random ?

It's random as far as I can tell, but one of the classes I fall asleep in all the time is really boring... so maybe a little of both lol.

Do you lucid dream often?

Actually, no. I can't recall ever being able to lucid dream. However, if this counts, if I wake up in the middle of a dream, I can make myself continue the dream from where it left off if I think about it while I'm trying to go back to sleep. Even if the dream continues, I still have no control over what's happening.

...What about OBEs? You say you encounter yourself frequently in sleep paralysis and "hypnagogic hallucinations"... Have you ever felt like detaching from your body?

No, I can't say I've ever had one of those. I've read about them though, and they're pretty interesting.

What drugs do you take?

Currently I'm on Viibryd for depression/anxiety. I've tried three other antidepressants in the past, and this is the only one I've gotten positive results from. Unfortunately, Viibryd has a tendency to suppress REM sleep so it doesn't help with my narcolepsy. I was just taken off Gabapentin, because it wasn't giving results either. I was taking that in attempt to keep my legs from trying to run a marathon in my sleep. In its place, I'm now on Concerta. Concerta is really inconsistent. The first week I took it, I didn't have to nap at all. Then I had to take a nap one day. Then a few more days without naps. Then a few days with multiple naps. I'm not sure what to think of it yet.

Why hasn't your doctor prescribed you modafinil/provigil? It's a medicine for.. narcolepsy!! If healthy people take it they can stay awake for a day or longer without feeling tired. The US Military uses it for their pilots on long (48h) missions so they stay alert.

http://www.gizmag.com/go/3574/ http://www.provigil.com/ http://en.wikipedia.org/wiki/Modafinil

Seriously, look into it! It could be what you need!

The names of those sound familiar. It's likely that we discussed that medicine as an option, but it was ruled out for one reason or another.

It can take a while to figure out what medication and what dose works best for you. Hang in there! I started with Provigil, but it gave me horrible headaches. Then I tried Concerta for a few months before switching to Ritalin and Dexedrine. Narcolepsy Network's online forum has a whole section on medication if you are interested in reading about other people's experiences and asking them questions. But it really comes down to the fact that every person is different and there is going to be trial and error involved in finding what works best for you.

I'll have to look into that website. Have you found a medicine that works for you yet?

I don't know if you're state allows this, but have you considered medical cannabis? It's known to help with a lot of your symptoms.

Even if my state allows it (which I don't know if it does, I'd have to look into it) I doubt my parents would let me use it anyway.

What are your hypnagogic hallucinations like? Shapes and colors? Sounds? Do they ever progress into dreams or actual scenarios?

Do you ever lucid dream?

You must be very familiar with sleep paralysis at this point. Do you know what's happening when it occurs? When I first experienced SP I was terrified and now I know what it is but find myself still getting very scared.

Thanks for the AMA!

The hallucinations are a lot like dreams, but I think that they're real, even after I wake up. For example, I spent a week thinking that the Atlanta Falcons had won the Superbowl this year. I know I've had some involving feeling things that aren't there, but I can't remember any specific examples. I also sometimes imagine things happening near me.

No, I've never had a lucid dream before. However, if I wake up in the middle of a dream, I can make it pick up from where it left off by thinking about it while I try to go back to sleep. Even then, I still don't have control over what's happening.

I never realize that I'm going through sleep paralysis, but when I am, it's not a scary thing. I just kinda think "I must still be tired" and eventually doze off again. I only realize that I was having sleep paralysis after I'm able to fully wake up.

That's very interesting. It is possible to focus on the hallucinations and try to turn them into dreams. Also, next time you wake up from your dream do the thing where you think about it but also repeat to yourself "I'm dreaming, I'm dreaming." You have the potential to have a lot of lucid dreams!!! SP for me is really scary and I always sense a menacing presence near me and start breathing really fast trying to call out or scream and then I break out of it and realize what was happening.

One more question, how often do you dream? During your naps? Only at night? I am obviously a dream enthusiast...

Haha I've tried, my brain just doesn't want me to lucid dream for whatever reason.

The first episode of SP I ever had was very scary. I felt like there was a man trying to break into my house, and I couldn't get up to run or try to stop him.

I dream all the time, during naps as well as at night. They're very vivid, but also strange dreams. Interestingly enough, I haven't had a nightmare in years. I've had bad dreams, but not the kind where you jolt awake in cold sweat.

Was your first narcoleptic attack (is that the right term? No offence intended) in January when you were diagnosed or had you been having a few previously? What was your first reaction when you woke up? Did you realise, were you freaked out, or did you just blame it on lack of sleep/over-tiredness and carry on as normal? And, if you don't mind sharing, what is your emotional trigger for your cataplexy? Thanks for doing this AMA!

Haha that's the right term, no worries. I can't put my finger on a first attack, but I'd been having them since way before January. The first few I can remember happened when I would watch Youtube videos or Netflix on my phone. I'd start to feel nauseous for no reason and out of nowhere. I'd try and fight it because I thought it would just stop after a minute, but they got worse and worse. When fighting it didn't work, I'd try to lay down. Eventually, I'd either pause the video and close my eyes and wake up around two hours later, or I'd fall asleep while watching the video. Also, last school year, there was a period of a few months where I'd come home from school (3 PM), lay right down on the sofa, and sleep until 7:30 that night.

I can't really remember what I would think when I woke up. I've always been excessively tired during the day so napping was normal for me. It slowly progressed to the point where it is now, so it wasn't noticeable until I stopped and looked back and thought "something's wrong here."

My cataplexy trigger is being disturbed or disgusted, especially when dealing with things like anatomy. I'll feel like my limbs, especially my legs, are filled with lead and I can't move them. It's really weird though... some days I can look at the gory posts on /r/WTF and be fine. Maybe a little affected, but otherwise fine. And then there was last October, when I passed out at school from a gory scene in a book. I have no idea why it varies so much.

Are there times when you want to sleep but can't?

Yes. Sometimes I feel absolutely exhausted and want nothing more than sleep, but can't fall asleep for whatever reason. Over the past few months, though, I've actually found ways to induce a narcolepsy attack if that happens.

Also if you go to college how will you plan your classes?

If I have the choice, I'll probably take classes in the afternoon, maybe around 3-5 PM. I find that I'm more alert later in the day.

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Obviously I'm not able to diagnose you or anything, but you definitely sound like you have narcolepsy based on how you've described your symptoms. Falling asleep but still being able to do things is called automatic behavior, which is another symptom of narcolepsy.

I would recommend finding a sleep lab in your area if you want a diagnosis. You'll have to sleep there overnight and then do the nap study during the day. If you're diagnosed, going on medication will definitely help you. My aunt has narcolepsy at about the level you've described, and she's found medicine to be tremendously helpful.

The first time I ever experienced sleep paralysis was in middle school. I stayed home from school because I was sick and took a nap on the couch. When I woke up, I was stuck in sleep paralysis. I had no idea what was happening and I was having these weird almost-dreams that a man was trying to break into my house. Now, I have sleep paralysis once every few months. It's always when I go to wake up, and sometimes it takes me multiple attempts to snap out of it, as in, I'll wake up in sleep paralysis, fall back asleep, and that'll happen a few times before I can get up. As far as I can remember, it hasn't been a scary experience since that first time. I don't even realize it's happened until I can get up. I haven't noticed a link between sleep paralysis and where I sleep.

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I'm not sure how much medicine can help when it comes to sleep paralysis... I've never really looked into that. Either way, there's definitely medicine out there that can help you with the other symptoms you have. I wish you the best of luck.

Have you ever had your life put in danger as a direct result of your narcolepsy, like falling asleep while driving?

Actually, are you allowed to drive?

No, I can't think of a time that my life was in danger... the worst thing that's happened had to do with my cataplexy. I passed out and could've very well landed on my face when I collapsed, but I didn't.

And yes, I'm allowed to drive. I've never had a problem with having an attack while driving. If that happens though, I've been instructed by my sleep doctor to put my hair out the window and then roll the window back up. That way my hair will tug on my head and wake me up if I fall asleep lol.

Are there any other techniques you have like that to keep from falling asleep at a bad moment?

Also, having read that, is narcolepsy or cataplexy a more difficult condition for you to work with on a day to day basis?

I've found ways to induce an attack if I really need sleep (but that only works around half the time) but I've yet to find a way to stop an attack.

Definitely narcolepsy. I've had worse incidents from cataplexy than narcolepsy, but narcolepsy is a much more persistent problem for me.

last set of questions (and thank you for responding to me!)

Are any of your questions related medically (that you know of?) and what was the sleep test you participated in trying to find/did it find anything noteworthy?

I'm afraid I don't know what you mean with that first part.

The sleep test was just looking for causes of my EDS. I've been tired all day every day for as long as I can remember. When the results showed that narcolepsy was possible, they tested me for that too and it turned out that I indeed have it.

How has this effected your social life? For instance if you have ever had a relationship, how has it effected you?

As of right now, I only have one friend that is what I define as a true friend. It's hard for me to make friends in the first place, but when I'm spending a lot of time sleeping and I'm always crabby from lack of sleep, it's just as hard for me to keep friends as it is to make them.

I've only had one real relationship, and my narcolepsy is basically what ended it. My boyfriend didn't mind it at all and he did a superb job at dealing with all of my problems. His mom on the other hand thought I was really lazy and just a freak in general. She ended up banning me from their house and not letting him come over to mine. We hadn't had a single fight until his mom started acting like that. But eventually it became too much to deal with, and we had to break up.

Thats really sad, I hope it turns out for you alright in the end. I'm guessing your problems have made you more aware and thoughtful of others and the problems they face as well.

It could've been worse. I'm still young and I have plenty of time to find someone new. It's just really a shame because we got along so well.

And yes, they have. I love to help people whenever I can. You never know who needs a smile or someone to listen, and you never know how much even the smallest gesture like that can help someone.

(Intended in the most non creepy way possible) you're very pretty! (I'm 17, so hopefully that tones down the creepy)

Haha, thank you! x)

What is the weirdest situation you've fallen asleep during. Also, do you often fall asleep and have no idea where you are?

Hmmm... I can't think of any extremely weird time I've fallen asleep, but I did almost fall asleep during a test that I have to pass to be allowed to graduate. That would've been bad.

And no, I always know where I am and what's happened after I wake up.

Interesting. I am sorry for your conditions, however I find it very interesting. I aspire to be a psychologist someday and I can't help but geek out over stuff like this. Have you done a lot of research on your disorders?

Yeah, I like to read up on my disorders so I can learn more stuff about them and try out ways to help myself.

I hope you can become a psychologist! I wanted to be a psychologist at one point too.

Wow, thats awesome! Thank you for doing this AMA. I'm not sure people understand fully how these disorders really affect people. They are taken very lightly in society, kinda like the joke of disorders. Anyways, you've inspired me to look deeper into Narcolepsy. Thank you!

Aww, I'm touched :) Narcolepsy is very interesting to read about, at least, it is to me. Hopefully you enjoy your research on it.

Favorite Color?

Minty green.

Have you ever fallen asleep during something really important? Like a date or hospital visit or funeral or something of that sort?

I very nearly fell asleep during a test that's required for me to graduate. I had an attack, put my head down, but then realized what would happen and forced myself to get through it.

Oh man. Well it's good that you realized and woke yourself up and got to it. I bet you had a great nap afterwards

Yeah, seriously. That could've turned out really bad. And yes, since it was testing week, we did literally nothing in all of my classes. Free naptime :D

On the bright side of life, what is the sweetest thing some one has gone out of there way to do to make you feel better?

The first thing to come to mind is my parakeet. I got her two days after me and my ex broke up, and she was my rock through the entire thing. She was probably the goofiest animal I've ever seen. She could sense when I was upset, and would go out of her way to act as stupid as possible to make me laugh. That includes hanging from the top of her cage like a bat, climbing up her cage bars butt-first, sticking her head into her toy bell and ringing it by swinging her head around. Etc etc. She was crazy. But then she had a stroke and died. That wasn't a fun night for me.

Thanks for reminding me of the term hypnagogic hallucinations. I'm on a new drug regime for depression and anxiety and had some very vivid hallucinations while waking up. My psychiatrist was explaining what it could be and that was the term she used. It kinda went over my head and when I tried to relay the info to my therapist, the best I could do was hypogenic or something.

Can you describe a little how you experience that symptom?

They're somewhat like dreams, but they happen either as I'm falling asleep or as I'm waking up. I don't just remember them when I'm awake later. I think they're real. I spent an entire week thinking the Atlanta Falcons had won the Superbowl this year. When I saw that the AFC Championship game was coming on when it did, I was like "...huh?"

One of the most interesting things about the hallucinations is that I have really creative ones. A few weeks ago I had one that led to me developing my own series to animate. I have all the characters and plot details developed, I just need a storyline now. So the hallucinations aren't all bad. Just weird.

Interesting. Mine woke me up. It wasn't like a dream; it was tactile and auditory. I felt a cat jumping on me and purring, only I don't have a cat. I jumped out of bed, figured I was dreaming, and laid back down. Soon as my head hit the pillow, the cat was back. Happened one more time, and I freaked out and decided to get out of bed. It felt absolutely real.

Thanks for answering.

I get extremely vivid dreams from my medications, so I find this kind of thing fascinating.

Huh. That's really strange. Sometimes I imagine things happening right beside me, but it never involves feeling things like that.

How do you find the sleep disorders affect your depression and anxiety?

I frequently get insomnia, or else I wake up after only 3-4 hours of sleep and can't fall back asleep. I tend to get extremely low and almost completely incapacitated when I can't sleep properly.

Do you ever have problems getting to sleep or staying asleep through the night?

My sleep doctor as well as my therapist suspect that my depression may come from the sleep problems. Then again, depression and anxiety both run in my family, and my dad has them both especially bad. Even though I'm on meds for it right now, I still get very anxious about stuff. Like this AMA, it took me weeks to gather the nerve to post it because I was so nervous.

Sometimes there are nights when I feel like I don't fall asleep at all. I know I get a little bit of sleep, but it isn't much. About a month ago, that happened two nights in a row. I also wake up frequently through the night and sometimes have trouble falling back asleep. Last night I actually slept for 12 hours without waking up once, but I'm still as exhausted as I always am.

You're doing a great job with the AMA.

Constant exhaustion sucks. Depression and anxiety suck. Restless and interrupted sleep sucks. Sleeping too much and feeling like shit sucks. I can relate and am really sorry you have to suffer through this. Stay strong.

Ps. How in the world did you ever sleep with all that gear on? I took a sleep apnea test once and I think I managed to doze for about 20 minutes. The doctor wasn't too impressed.

Thank you. I'm just thankful that my life isn't nearly as bad as it could be.

You know, I really didn't mind the gear. It was the oxygen monitor that bothered me. It's pretty much like the plastic nose things that old people have to wear to get oxygen, except it had two thin little metal rods that go up your nose instead of plastic tubes. It kept knocking itself loose, and it itched and tickled the inside of my nose. That thing kept me up and woke me up and ugh. I would've slept even better if it wasn't for that thing.

Sounds unpleasant.

Well, you've got an amazing attitude. Very inspiring. I wish you all the best.

You don't know the half of it, lol.

Thank you, I really appreciate it :)

Do you also have sleep apnea ?

No, but I think my dad has it. His sister is the one that passed down narcolepsy to me.

the longest time your not been able to sleep?

Since the symptoms started showing themselves, about a week. [edit] Oh wait... do you mean the longest time I've gone without sleep? If so, two days.

/what do you find helps you stay awake ?

I haven't really found a method (other than medicine) to reduce attacks. And when an attack happens, I have no choice but to sleep. I can try to fight it all I want, but I always lose in the end.

How does school work out for you ?

copy and paste from another reply because I'm lazy

This is the first school year that I've had to deal with my narcolepsy on a major scale. In previous years, I could feel myself getting tired and losing focus, but it's a lot worse this year. I used to have almost all A's with a B+ or two in there somewhere. Looking at my grades right now, I have 3 A's, a B+ and two C's. There are two other classes with no grades recorded yet. The classes that I fall asleep in most often are the ones with the C's. The teachers aren't allowed to wake me up because I have a doctor's note on file. I'm thankful for that, but at the same time, I wish I could be awake to take the notes that I'll need later to study.

Why not become homeschooled?

My parents both have full time jobs, and we don't have the money to hire someone to teach me. I'm not sure I'd want to be homeschooled anyway... that would mean giving up ceramics and Spanish.

So is narcolepsy very different than it is portrayed on tv? For example would you be walking down the hallway and just fall over asleep? By the way as someone who may have asbergers as well (i show signs, never confirmed i beleive) dont let labels rule your life and dont let it define you :).

It honestly just depends on the person. For me, that would be an extremely overexaggerated portrayal. For someone with severe narcolepsy, on the other hand, that may not be very far from reality.

And thanks. I try to make the most of it, but Asperger's is one of the hardest things that I have to deal with.

I just want to say you are absolutely beautiful! Remember to keep your spirits high!

One of my close friends has narcolepsy too, and I was more scared than she was when I heard about it! I remember when she was first diagnosed, and we all were worried something would happen during school! We were all sitting at a lunch table, and talking. She was sitting on a guys lap, and then a second later, she was on the ground! Luckily he caught her before she hit her head, haha! But she slept for twenty minutes after that, and she was so confused when she woke up! But you said your condition isn't like this, so that's good!

Just wanted to share that story! Thanks for doing this AMA!

Thank you :)

Wow, it's a good thing he caught her. I'm no stranger to head injury... I've knocked myself out twice, one time resulting in a concussion. If she landed at just the wrong angle, she could've been hurt really bad.

Oh hey, I also have narcolepsy with cataplexy (and a diagnosis of Asperger's syndrome, coincidentally). I don't have any questions about the disease proper, since I have to put up with it myself and so know quite a lot about it.

You said that your aunt also has it. In a large majority of people with narcolepsy, there doesn't seem to be a familial link--myself being an exception, being that I directly inherited it from my mom (thanks, mom!). Apparently I also have (or had) a half-uncle somewhere in the world who had narcolepsy. I'm curious if you know of any other relatives with it besides your aunt; in the people I know with it, it seems to be either very strongly familial or completely isolated.

I am also curious when you started getting cataplexy, and what your emotional triggers are. I've actually had cataplexy for as long as I can remember, which is unusual; I remember sitting on my bed at the age of four or five thinking "huh, weird, I guess EVERYONE's wrists must get paralyzed when they laugh." Turns out that no, no they don't. The rest of my symptoms started to come on when I was nineteen or so, which is when I was diagnosed, and they've been getting gradually worse since.

Otherwise, I can only offer commiseration; being a student with narcolepsy is really damn hard.

Are you me? Lol, kidding. Ummm let's see. My aunt definitely has narcolepsy. My dad had narcoleptic symptoms for a while - such as falling asleep while driving. Turns out he has sleep apnea, and ever since he was put on a CPAP machine, his narcoleptic symptoms have gone away. He definitely has sleep apnea, but I doubt he has narcolepsy.

My trigger for cataplexy is being disturbed or disgusted. Especially for things like anatomy. Dissecting things in science class is my worst nightmare, and the anatomy teacher says he doesn't want me to take anatomy, because he knows how sensitive I am to it. I'll be taking astronomy instead... a much safer bet for me lol.

I hope you've been doing better. I can agree that being a narcoleptic student is no easy task :/

Yeah, sleep apnea is much more likely to cause the stereotypical "narcolepsy" symptoms than narcolepsy is; as you almost certainly know, basically nobody with narcolepsy actually falls asleep randomly, we are merely beset by sleep attacks that make you feel like your brain is melting and we get cataplexy (which I suspect is the source of the stereotypes).

Whoa, I've never met anyone else with the same disgust trigger! That's the worst one for me; I once "fainted" as a child (I was awake the whole time, just paralyzed) when my mom had to have her blood drawn, and I can never take notes in my classes when we're covering brain functions (I'm a linguistics student) because I can't even move my hands to pick up my pen. I've taken to referring to the specific emotional state that causes that kind of cataplexy as 'squeamishness', since, like you, it is specifically triggered by anatomical stuff and not other varieties of disgust.

School is still a struggle for me, I'm afraid, but I have so far managed to maintain a relatively high GPA and grad school is still in my sights, so I guess it is at least not so overwhelming as to interfere with my goals.

I've never met anyone with the same trigger either. I try to refrain from calling it "squeamishness" because a lot of times my classmates say "you're faking" or "you just have a weak stomach". I got tired of that, so I just call it disgust.

I've had two bad incidents within the past year. In my biology class last year, we were going over... I think it was the cardiovascular system? Either that or the respiratory system. I got horribly lightheaded and couldn't move and broke out in a cold sweat and felt really nauseous. Then this year, I was reading "October Sky" (it's a good book, except for this part). The main character falls back on a pile of metal and slashes his wrist open really bad. The details were absolutely horrific. I ended up stumbling out of the room as best as I could until I finally collapsed in the hallway. It felt like I went unconscious, but I'm not all that sure. When a teacher found me, I couldn't respond or get up. Needless to say, panic spread pretty fast lol.

Yeah, I definitely hear you on that. Unfortunately, this is stuff that occasionally makes people faint, and since people are categorically terrible about believing people when they talk about their medical conditions, they assume that our cataplexy, which is a very specific and distinctive thing, is the same thing as fainting even though they're really very different.

Ayup. That about sums it up. It's unfortunate that a lot of times people don't believe or understand. I mean, it's a diagnosed medical condition. What more do they want?

Indeed. Unfortunately, I can tell you that, from extensive experience as someone with a small army of assorted medical conditions, no matter what you have, people will insist that they know more about your own medical history and symptoms than you do. I don't quite get it either, but it is certainly a widely prevailing pattern.

I'm starting to believe more and more that you really are my long lost twin or something haha.

Well, the existence of a seven-year age gap (I'm 23) seems to make twinhood a bit implausible, aside from some weird time travel scenarios. :p

But there are certainly a lot of weird cultural attitudes going on that affect people with similar afflictions similarly, so I am not remotely surprised that you've encountered the same things I have; this just points to the existence of systemic ways in which people with assorted medical conditions are disbelieved, rather than individual quirks on the parts of everyone who thinks they know better than us.

I still think it's time travel. x)

have you read the book series called The Mysterious Benedict Society?

Can't say I have. It sounds familiar, but I can't put my finger on it.

Have you or your parents ever thought about trying marijuana as a potential cure?

I'm not sure if it's legal in my state or not, but even if it is, my parents are fairly conservative and I doubt they'd let me try it. Especially my mom, she's afraid of all kinds of medicines and surgery and all the like.

When you fall asleep do you just drop to the floor or do you feel it coming and jut lie down?

I can feel it coming. It's an unbearable nauseous feeling. I can try to fight it, but I always lose in the end.

Do you have, or will you ever be able to get a driver's license?

I had symptoms similar to narcolepsy due to untreated sleep apnea. I was afraid to have a sleep study done, because someone told be that if you are diagnosed with narcolepsy, they take away your driving privileges. I have a CPAP, now, and not longer fall asleep unless at inappropriate times.

Also, do you fall into REM sleep immediately? I can sleep for 10 seconds and have a dream. I heard that was a symptom of sleep deprivation.

Yes, I have a driver's license. I've never had a problem with staying awake while driving, but my sleep doctor gave me instructions in case I do. I'm supposed to roll down the window, put my hair outside of the car, and roll the window back up. That way if my head starts to fall, my hair will yank it back up.

If you haven't already, you should come join us over at r/narcolepsy!

I'll go take a look when I finish answering my new questions! :)

Could I take you out on a date sometime?

Depends. If you can make the drive to Ohio, have at it. I'm not allowed to drive outside of my town (which is about 5 miles from end to end, my mom is seriously overprotective) so I couldn't come to you :P

I'm late to your AMA, but I do have a question that's stumped me for the longest time, and seeing as you have first-hand experience I thought I'd ask: is there any difference between "loss of muscle control/function" as in your description of cataplexy, and "loss of muscle tone" which is the term I see commonly used elsewhere?

I've kind of imagined loss of muscle tone to be something like a sudden feeling of limpness in your body or limbs that causes you to e.g. lose your balance and collapse or give way (which happens to me when I run in bursts), but I'm not sure if that's a good or accurate description at all seeing as I'm not cataplectic myself; I just happen to be weak in general and emotional episodes don't adversely affect me physically. I do have Asperger's though, not that that'd be entirely relevant here :)

EDIT: I just read through some of the other comments and you mentioned here that you feel as if your limbs get filled up with lead during a cataplectic attack. I realize these things vary by individual, but is it different, or similar?

I would describe it as either. The "filled with lead" thing was just to describe how they feel like I can't move them.

So on average how many hours a day do you sleep? I'm sorry if you mentioned it already I honestly didn't read all the comments.

I go to sleep at 9:30 PM every night most of the time. Sometimes, such as last night, I'll be busy with something and stay up later. I get up at 7 to get ready for school, so that's 9 and a half hours. On weekends, I still go to sleep at 9:30, but I usually sleep in until 10 or later. So over 12 hours on weekends. I also take several naps per week. No matter how much sleep I get though, I'm always really tired.

Oh ok since you go to bed by 9:30 is that just a personal preference or does it help with the narcolepsy?

Sort of both... It is personal preference, but it doesn't help with the narcolepsy. It's more like my narcolepsy rarely lets me stay up any later than that unless I build up to later times by about 10 minutes each night.

Oh I see well that sucks a lot just remember if you go to parties take your shoes off before you sleep then people technically can't draw on you. Most people don't follow that rule though haha

Haha sure thing. I'm not a huge fan of parties, I hardly ever go to them. Loud places really bother me for some reason.

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Just cheese. Sorry for the disappointing answer, lol.