IAmA 18 year old girl with narcolepsy with cataplexy, AMA
Hi, /r/IAmA! I'm /u/akatora and I have narcolepsy with cataplexy (along with all four of the other symptoms, which to my understanding is sort of rare). I did an AMA about two years ago, but I've since had a comment or two explode that were about narcolepsy. Each time I got a request to do another AMA. And I figured that since I've had lots more experiences with the disease since my last AMA (including going through some symptoms that I hadn't had before and finding a treatment that worked), why not do another. I love to spread awareness about this disease, because for the number of people it affects (rougly 1 in 2000), it's not nearly as well-known and well-understood by society as it should be.
 Came home from school early because I was feeling a bit sick. Back to answering questions now!
No question is a dumb question!
I guess the first thing to understand is that Hollywood totally has it wrong. Any movie or TV show that portrays narcolepsy as simply falling asleep at random times for about five minutes and then popping back up totally fine? Nope. I only wish it was that easy. The main symptom is pure exhaustion (called EDS, which means excessive daytime sleepiness). I've read somewhere that what a narcoleptic feels every day is the equivalent of a normal person staying awake for 48 straight hours, and then staying at that level of exhaustion forever. EDS is the only symptom that every narcoleptic has in common. If you don't have EDS, you don't have narcolepsy; however, it is also possible to have other symptoms on top of EDS. Cataplexy is a big one, which about 70% of narcoleptics have. Cataplexy is more or less caused by an emotional trigger. A lot of the time, it's laughter. This trigger can make your brain attempt to force you into REM sleep. During REM sleep, your body paralyzes itself to keep you from acting out your dreams and potentially hurting yourself. So in cataplexy, while you stay awake, you're temporarily unable to move. It can be as mild as your facial muscles slackening a bit, to having your knees give out, to collapsing and being completely unable to move. [edit: cataplexy is, to my knowledge, nonexistent outside of narcolepsy.]
The other symptoms are automatic behavior (falling asleep but continuing to do what you were just doing), hypnagogic hallucinations (visual or auditory hallucinations upon falling asleep or waking up), sleep paralysis (your brain wakes up from sleep, but your body doesn't; you're mentally awake, but physically you can't move or so much as even open your eyes), and fragmented sleep (waking up several times in the night, for me it averaged around 15 times). I've experienced each one of these symptoms.
That sounds like me.
Except I can't fall asleep unless I'm in bed for a very long time.
But nope, I'm not tired 24/7 (more like 20/7), so I'm just "lazy" and "avoiding work."
Hey, ask your doctor. Seriously. Sleep disorders don't get enough attention. Hypersomniac disorders (which is an umbrella term for any sleep disorder with EDS as a symptom) are in about 5% of people. That's one in every 20. And that's only hypersomniac disorders! That means that there's more than that with sleep disorders without EDS.
Sleep studies are somewhat uncomfortable, but most insurance providers will allow one per year. It could change your life to get it checked out.
And I feel ya with that "lazy" quip. It was my undiagnosed narcolepsy that made me appear "lazy" enough to make my boyfriend's mom force him to break up with me.
You apparently seem very smart. What are your plans after school?
I'm planning on attending Ohio University and majoring in Engineering Technology and Management (which is basically just a different name for operations management). I'm also required to get a minor in business if I choose that major.
After I graduate, I'm really hoping to move to Portland, Oregon. But I know that plans change and life doesn't always go how you want, so I'm open to whatever happens. :)
Is there anything that you're prescribed for EDS? By the way you described it, it seems almost unbearable. I mean, if I were to stay up for 48 hours straight, I wouldn't be able to function whatsoever. It seems really debilitating.
I spent around two and a half years unmedicated. You're not born with narcolepsy, it usually develops in your adolescent years (slightly less common is development after head trauma, which is why it's mentioned in the sleep study results I posted). For me, it developed around age 13, and I didn't receive a proper diagnosis until I was almost 16 and a half. Lucky me, because most narcoleptics don't get a diagnosis until about age 30. After the diagnosis, I went on several different medications for it. Concerta, Vyvanse, and Modafinil are the most notable. Concerta didn't do anything. Vyvanse was awful, it made me so wired that I couldn't sleep even at nighttime. I was on it for two weeks exactly, and I got around 10 hours of sleep total over those two weeks. I fell asleep for 15 minutes during a car trip and was so excited when I woke up that I almost cried. Modafinil, unfortunately, didn't do anything at all. It's supposed to be the miracle drug of narcolepsy, and it's so horrendously expensive that we had to fight the insurance company tooth and nail to let me try it. It was so disappointing and discouraging when I was on it for three months and nothing happened.
Currently, and this is gonna sound weird but bear with me, I'm self-treating with nicotine patches. I haven't felt this good since before middle school. I'm not back to 100% by any means. I'd say closer to 80%. I'm still somewhat tired every now and again, and I need a nap nearly every day. But it's completely changed my life. After I heard of the benefits nicotine can have with narcolepsy, I did a little research. As it turns out, nicotine stimulates the same nerve receptor as hypocretin, which is the chemical that regulates sleep cycles, which is absent in the narcoleptic's brain. Some studies with it were done on rats and the nicotine caused the narcoleptic rat to be nearly indistinguishable to the normal rat when their attention and wakefulness was tested.
I'm on the smallest dose patch, which is 7mg every 24 hours. I'm not addicted whatsoever. I had to go off of them for about a month before my hip surgery and I felt no withdrawal symptoms at all. I can miss a day and not feel withdrawal, and even better, my narcolepsy symptoms don't come back very strongly. That's more than I can say for any drug I missed, I would have horrible withdrawal. There are also no side effects from the nicotine.
Why can't you take hypocretin in some form then?
If you can find a place where I can buy hypocretin, I'd be all for trying it :P
What you mentioned about fragmented sleep is something I've dealt with my entire life. Or, at least, as far back as I can remember actively thinking about my sleeping. Can you tell me a little bit more about that part, or is it as simple as that concept (waking up a lot)?
For reference, when I wake up multiple times a night, it's always for just a few seconds... Seemingly, anyway. It's long enough to toss and turn and a dream to change either completely or at least substantially. Does that sound like it?
I try to avoid being a hypochondriac, but this is something I've wondered about for a long time. Just thought I'd ask before heading to bed... isn't that funny timing? Haha.
It changed from night to night for me. Some nights I'd do exactly what you described, only being awake for a few minutes and then usually being able to fall back asleep. Other nights I would wake up and be unable to fall back asleep for a half hour to hours at a time.
If it's something you're concerned about, just ask your doctor and maybe get a sleep study. If they happened to find something and got you on a treatment plan for you, it could change your life. Sleep disorders are a lot more common than you would think.
your body paralyzes itself to keep you from acting out your dreams
this sounds really sad
That's actually everybody's body that does that, not just those with sleep disorders! People who sleepwalk have issues with their brains not fully paralyzing themselves during REM sleep.
Another redditor posted this the other day, it's scary. http://youtu.be/1PuvXpv0yDM
I'm extremely grateful that I don't have it nearly that severe. Thanks for sharing that.
How has having narcolepsy affected the relationships in your life? If I ever meet a person with narcolepsy, what should I do to make things easier for them?
Thank you for doing this! It really sheds some light on something the media has been less than truthful about.
I more or less have no friendships left thanks to this disease. When I first got sick, it hit me really hard. It also didn't help that I was coming off an awful breakup that took me like a year and a half to get over.
I had no energy left for anything, including my friends. I stopped hanging out with them, I stopped talking to them. All I could focus on and think about was how tired I was and how hard it was to stay awake. After I got my diagnosis, I became obsessed with studying it and trying to find medical options to help me. And unfortunately I could never shut up about it. Ever seen Mean Girls? It was truly word vomit just like Cady described. I couldn't stop, it took over my life. And it really turned people off from me.
About a year went by before I found a good treatment that I'm still on. But even after I got better, nobody wanted anything to do with me anymore. I don't text anybody or hang out with anybody. I'm just sorta desperately hanging on through my senior year, hoping that graduation comes soon so I can go off to college and finally have some human interaction in my life again.
If you ever meet someone with narcolepsy, the best thing you can do is not laugh or think it's funny. I can assure you that it is really not any fun at all and everyone who laughs is really hurting the victim. It's embarrassing and demoralizing. Depending on the person, waking them up is sometimes appreciated. For me, I just like when people let me sleep it out. Otherwise I'm stuck feeling sick from the attack again.
Hi! If Cataplexy is triggered by various emotional responses, one would think it could be decreased with the aid of therapy. Could it?
Not really, because it's common, everyday emotions that everyone feels regularly. Like laughter (the most common one), happiness, sadness, anger. For me, it's panic and anger.
What were the "lots more experiences since my last AMA"?
Did your last AMA teach you anything or change your mindset at all?
Basically just a clearer understanding of my symptoms and the disease, and going through lots of different medications (all of which either had no effect or bad effects) to finally arrive to what I'm on now.
Hmm... nothing I can remember about the AMA changed my mindset or anything like that. I've always tried my best to be positive about what I go through, although I'm not nearly as obsessive about it as I used to be. For the first few months after my diagnosis, I did nothing but research it.
what kind of music do you listen to?
Alternative and indie rock for the most part, but pretty much any kind of rock except screamo. I also really like acoustic and classical. Anberlin is my favorite band.
Killer! saw Anberlin on their acoustic tour but bummed I won't get to on their last one :(
Ooh, lucky! I'm going to Philadelphia next month to see them. I've never been to a concert before so I'm a little nervous but I'm sure it'll be a blast. I'm about to get an Anberlin tattoo as well. :)
That's awesome, you'll definitely love them live though. lol you seem super cool though, keep it up and I hope you get to doing better!
Thank you very much :)
Oh my goodness. A fellow fan. They throw one hell of a performance.
They'd better, because I'm driving 8 hours to see them next month!
the most awkward moment you feeld sleep??
Have a nice day!
At the vet's office with my dog.
Is there anything you wish you could do, but won't because you fear what would happen if you had an attack during that activity?
Yes, but not an attack as much as it is EDS that prevents me from doing it. I wish I could exercise more. But most of the time, I just physically can't do it. Not enough energy, even when I'm in shape. Although I'm hoping the medicine I'm on now can change that...
I'm also still recovering from a hip surgery that I had in May. The injury I had also prevented me from physical activity, and I'd had the injury for about two and a half years before the surgery. My school just got a soccer team this year, my senior year, and of course I had just had hip surgery so I couldn't play. Thankfully my recovery was speedier than expected and I was cleared just in time to play the last game. It was the first strenuous physical activity I'd had since going on this medicine in December, and it went well energy-wise from what I could tell. So I'm hopeful I can get back to it soon. I'm not fully recovered from surgery yet so I'm afraid to push it until I know I am.
Have you met anyone else in real life who has these same issues? If so, what was that like?
Something like 8-12% of narcolepsy cases are hereditary from a close relative, and for me, it was my aunt. It's great to know I have someone that will relate to what I'm going through at any given time.
Ever fall asleep during sex? Lol
Virgin loser checking in :D
You're not a loser for being a virgin, and you're not a loser for not being a virgin.
That was just my attempt at a witty response :) I'm not insecure at all about it.
Since the effects are much less than what they used to be thanks to my treatment, I'll describe what a day was like when it was at its peak.
My alarm would go off in the morning to wake me up. I would experience horrible sleep inertia, which is basically when your body is still too exhausted to wake up and get up. I still have a little bit of that, but not as badly. Still hate mornings though. Anyway, I would go to school and attempt to focus on my work. Most of the time my brain was way too fuzzy to process anything my teachers said, and yeah right, like I'd be damned to write any of it down. The first two classes weren't too bad for the most part, but 3rd and 4th period hit me hard, especially 4th period. I slept almost every day in that class, for the entire class. Looking back, with the kind of guy my teacher was, I'm shocked he didn't do anything about it, especially before I got my diagnosis. The classes that I was more involved in, like being able to speak and be involved in the lesson, I did better in those. The best class was ceramics, because I was up and doing things. I think that 4th period class hit me so hard because it was nothing but listening to the teacher talk and being expected to take notes and do nothing else.
Anyway, the rest of the school day would go by pretty similarly. I would get home at 3, lay down at 4, sleep until about 6 or 7. For the first hour after waking up from a nap, I would feel amazing. Completely rested and (sorry, I know reddit hates this word) euphoric. Ready to take on anything. But after that first hour, I would crash again. I would lay down for the night at 9 PM and fall asleep by 9:30. I would wake up at least 10 times through the night, usually 15, sometimes as many as 25 times. Every now and again I'd wake up at 3 AM or so and be unable to fall back asleep.
And then I'd get up at 7 for school and repeat the cycle.
Some people I've seen on /r/Narcolepsy are helped with caffeine, but not too many. Personally I don't drink any soda, coffee, tea, or energy drinks, so I wouldn't know.
Although one time I was feeling particularly tired on my way to a sports event, so I stopped by McDonalds and got the most powerful coffee they had, but it didn't do anything for me.
What are your thoughts on Breaking Bad?
Never seen it :( I'm not very well versed in TV shows and movies. Seriously, name any classic movie and I've never seen it. With the exception of A Christmas Story. Be sure to drink your Ovaltine.
I have been completely unaware of this disease so far.
The sleep study reports all mention a head injury with loss of consciousness in your past. Is that related to the disease or does it even originate from that?
Is that condition of EDS actually dangerous when you force to stay awake, given the fact that people who really stay awake for 48+ hours are in a life-threatening situation?
Yup, some studies suggest that head trauma can actually cause the onset of narcolepsy. In my case, the symptoms started about a year after the head injury, but I also have a family member with it and it can be genetic. I think that the head injury may have caused it to develop early, but that I would have developed it later in life anyway without the head injury.
As for the EDS question, I'm not entirely sure. The exhaustion isn't caused by a lack of sleep, it's caused by not getting the right kind of sleep. So it's not exactly the same circumstances as it would be if someone just stayed up for 48 hours straight. I'm not sure what the physical differences are and what that entails for the dangerousness of it.
May i ask what has happened? I have also had a head injury with loc when i front-hugged a car with my bike, but without any consequences.
Check out my response to /u/benofepmn, I explained exactly how I got the head injury :)
Do you feel as if you're permanently fatigued or is it randomly triggered? If it happens randomly, is there anything in particular that might make it worse (such as being in a warm/cold area, listening to music, going to class, etc.)?
Before this medication, it was a permanent thing. I was never anything less than exhausted. I would take every possible opportunity to sleep. So anything that makes a normal person sleepy, like being warm, full, and in a dark place, was absolutely unbearable if I was trying to stay awake.
where are you from?
I live almost right at the intersection of Ohio, Kentucky, and West Virginia.
When was the worst time that you have ever fallen asleep?
I didn't quite fall asleep, but I almost fell asleep during a standardized test that I had to pass to graduate high school.
I'm looking into getting a test. I can identify with all symtoms of narcolepsy (without cataplexy). I never really thought too much about not being able to stay awake during 50% of my lectures in college because it was so easy to get away with....I didn't even need to be there after all!
It's only now that I'm in work that it's started to affect me. Sleep attacks are the worst, it's like im in this fog that's impossible to get out off, I never let myself fall fully asleep in work. During sleep attacks I just spend the whole time fighting and fighting to stay awake, niether winning nor losing, all whilst pretending to my manager that I'm listening to what they're saying (I'm in a grad job, where I just sit with office managers all day).
Can you explain to me about the test process? I'm kind of worried that actually being in the senario of having a test done, I wont be able to sleep.
If you choose to get tested, I wish you all the best. It can be a bit of an awkward process for some people. My first time I barely slept at all. The second time I slept a little better but still poorly.
Basically, you sleep with wires attached all over your body. Two on each leg, some on your arms, and your chest, and like 10 on your head. It's really not as uncomfortable as it sounds - I would have slept so much better if not for the goddamn wire they stuck up my nose. You know those two-pronged plastic things that people with oxygen tanks have to stick up their nose? It's just like that, except it's metal wire instead of plastic. And my head was too small for the band that goes around your head to hold it in place. So it kept getting knocked loose and moving around, it itched so bad and kept me awake.
You can avoid that god forsaken thing by getting a strip instead (hopefully). I was not informed of the strip until both of my sleep studies were already over -_-. It's like a strip of tape that goes under your nose and above your lip. It's supposed to read your oxygen levels.
There's also a thing that goes on your finger to read your pulse but it isn't unbearable either.
If the lab techs find evidence in your nighttime study that suggests narcolepsy, you'll stay for a daytime study. You'll be woken at 5 AM and asked to stay up until 7. At 7, they'll tell you to lay down for a nap for 30 minutes. At 7:30, they'll wake you up and ask you to stay up for another 2 hours. They'll do this 5 times. There are significantly less wires to wear during the daytime study so it's much easier to fall asleep for those.
Can you please tell us how you banged your head and lost consciousness?
Sure. It's a pretty good one.
This happened in the 7th grade. My friend H always brought a soccer ball for recess that my friends could play with, every day throughout all three middle school years. One day, though, she forgot the soccer ball, so H and I decided we wanted to play tag instead. My other friends decided they weren't interested.
So I'm it and I'm chasing H when she runs up onto the school porch and down the wheelchair ramp. I go to follow her but there were a lot of people on the ramp and I didn't feel like going around them all. So I got the bright idea to climb the handrail instead. It looked a bit like this, with the two levels of horizontal bars. So I go over it like a ladder, step on the lower one and then go to jump over when my foot got caught, I flipped completely upside down, and fell the five feet down to the concrete below, directly on my head. I was unconscious for about a minute.
I had classic concussion symptoms for the rest of the day, but I was never formally diagnosed.
Can you tell when you are falling asleep? I understand that Hollywood portrays it as falling asleep suddenly and frequently. Is there any truth to falling asleep standing up? Also is there anything in particular you do to keep yourself awake?
Oh for sure. Sleep attacks are miserable. Check out my response to /u/-rabid-, it has details on what they feel like.
Falling asleep standing up would be a very severe case, but not impossible.
When an attack hits, there's really not anything extra I can do to fend it off. For the everyday tiredness though, being up and moving around doing something helps a lot.
what's the worst situation Narcolepsy has gotten you into ?
Does losing all my friends count?
I was recently diagnosed with sleep rem disorder and "a mild case of narcolepsy". Been put on meds to keep me awake/alert during the day but I feel like I can take a nap right afterwards. I am finding out that if I break away from my schedule or sleep hygiene I can suffer for a week. Depending on how tired I am the sleep walking can get a bit crazy. Do you have any tips on dealing with the exhaustion?
For all the meds I tried, and I tried a LOT of meds, the only thing to ever work for me was nicotine patches, and they work really well. I wrote a comment about it somewhere in this thread. I've never heard of someone who tried nicotine patches for their narcolepsy and had a bad experience with it.
If you go unmedicated, the only thing you can really do is try to keep a regular sleep schedule and eat a good diet. :/
Are there any times where you can have a cataplexic episode directly following a narcoleptic one, or vise versa?
I actually don't have cataplexy very severely, and on the rare occasions I have a cataplexy attack, they're pretty mild. So I've never had a narcolepsy and cataplexy attack close together.
Absolutely. I play wussy games though. I don't like stuff that raises my blood pressure.
Nah, I'm not too into online gaming. I'm more of a console person, and older consoles at that. My favorite is Gamecube, but I like PS1 a lot too.
I've fallen asleep while playing a game before, but the game I was playing was more of an RPG so my character just stood there for a hell of a long time lol.
My friends have nagged me forever to play it, but I haven't yet. It's on my list though!
Not much of a question about your condition, but just wanted to know if your conition made any impacts on your life goals / if youre comftarble answering this, what are your life goals, at the moment ( long term or short term)?
Thanks to my poor school performance while I was really sick, my GPA is just barely too low to receive a full tuition scholarship to the school I'm going to. I can get some based on my ACT score, but not all that much. On the bright side, narcolepsy is considered a disability, so I can schedule my classes before almost everyone else (at university, I mean).
My life goals... Well first I really want to move to Portland, Oregon after college. I'm visiting a friend that lives there this summer so I can see the city and find out if it really is a good fit for me. I'm hoping to be an operations manager. I want to build my own house with a room for my cockatiel (and his future friend, because I want one more cockatiel), a pottery room with three potters wheels, shelf after shelf of glazes, my own personal kiln, and some drying racks, and a room with lots of windows that I can go in to relax and read or something. I also want a matching set of kitchen utensils (pots and pans, a coffee pot, silverware) that's all cherry red.
Like I said, I want one more cockatiel in addition to the one I have now. I also want two Dobermans, brothers from the same litter, and I'm going to train them to be badass guard dogs. I'm going to name them after the moons of Mars, Phobos and Deimos, so they have badass names to match their badass selves. I also want a bearded dragon and a Pembroke Welsh Corgi at some point in my life.
Hopefully someday I'll be married too but I'm not very smooth with the fellas lol. But I'm extremely staunch in my no-kids stance. I have been since I was 9.
Hope you were looking for specific life goals because I felt like typing today :D
Do you have any tattoos?
No, but I'm getting one next Saturday. :P
First thing that came to mind is "are you allowed to drive?"
Also, do you know when an attack (don't know what else to call it) is about to happen or does it just hit you out of the blue? How long after an attack does it take to get back to normal? What's the longest you've ever gone between attacks?
Best of luck to you!
I personally am allowed to drive, but some people's attacks are so severe when they hit that they legally cannot drive. I've been given the advice to roll down the window, stick out some of my hair, and roll it back up when I'm having an attack. That way if my head starts to droop, it'll yank my head back up.
An attack feels like just that, your body is being attacked. You get sick in every way imaginable. You get a stomachache. You get a headache. You get dizzy. You get nauseous. You get lightheaded. All of that at once. But most importantly, it suddenly becomes very hard to stay awake. Not impossible, but extremely difficult. The only way to get it to go away is to wait an hour, or to go to sleep.
I am lucky enough to not get severe attacks anymore. I had the worst ones when I was 15 and 16. Now I just kinda need a two hour nap every day. But when they happened, they happened every single day, usually once or twice, but no more than three or four times per day.
That sounds horrible. I'm glad to hear that you don't get severe attacks anymore. I hope they never come back.
I just hit 10 months on this medicine and it's still working as well as it did on day... well, six or seven, because it didn't work immediately lol. Haven't needed to up the dose yet either. I have hope that it'll keep working its magic for years to come :) Thanks so much for your well wishes.
Sorry if this is a weird question but have you ever tried experimenting with marijuana? or even as far as MDMA/MDA? I really enjoyed reading this ama, i saw you like indie/alt rock, you should check out the song narcolepsy by Third Eye Blind!
Nah, never tried weed.
I'll look up the song when I get a minute, thanks!
That's interesting, do you know if there any potential benefits/disadvantages from it. Second question (if this AMA is still active) what is dreaming like to you, what I mean is, is it something you look forward to or stay away from. I have trouble with nightmares my self and sometimes I don't want to go to bed to get away from them. If that make sense.
I'm not sure how weed would affect narcolepsy, I'd have to research it.
My dreams are actually fairly uneventful. Seems like it's been that way since I developed narcolepsy. I haven't had a nightmare in years, but I also haven't had an awesome dream in years. They're mostly about ordinary, day-to-day things.
What is cataplexy? (Side note OMFG you're adorable. I love your smile!)
Ha, thank you!
I just typed out a full explanation of each symptom in my response to /u/josephtutora, check that out. :)
Why do you suck ass?
I wasn't aware that I did, so you tell me?
Can explain what its like to have that disease? Sorry if that's a dumb question but it's hard to ask others without more knowledge of your situation! Thanks! :)
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