My short bio: This is me. I've been getting so many questions about my condition that I'm having trouble answering them all separately, so I thought it might be helpful to try to answer them all in a single location. Ask me anything.

My Proof: Look! It's my face!

Comments: 284 • Responses: 87  • Date: 

8236423 karma

No question just an internet-hug from a sympathetic stranger. hug

On second thought, I do have a question: What's your favorite Miyazaki film and why?

sewingsarahelizabeth33 karma

This is so silly, but I'm actually really happy you asked that! Howl's Moving Castle. I found that movie when my health was starting to deteriorate. It gave me hope in a really dark place because in my mind, "If he could fall in love with her without having the slightest idea what she looked like as her real age, and only knew that she was cursed to be old, maybe it's possible for someone to love me for who I really am too and see past all my flaws." By far, my ultimate feel good movie.

BA-ZINGG9 karma

Stop it sewingsarahelizabeth, im welling up over here!

sewingsarahelizabeth12 karma

I win! XD

charcoil2319 karma

Are there any triggers to an episode, or are they totally random?

sewingsarahelizabeth27 karma

They are usually triggered by strong emotions- anger, fear, shock, laughter, anxiety. It's worse when I'm tired though.

FredWampy11 karma


Are there ever any "good" (relative term, I realize) episodes, as in where you're laughing so incredibly hard at something, you have an episode, and then you come back and say something like "good one"? Or are they all awful, awful things?

sewingsarahelizabeth27 karma

Sometimes someone will make me laugh so hard I collapse and can't get back up, so I end up literally rolling on the floor laughing. My friends felt really bad and tried to stop making me laugh, which just made me even more miserable, so I started giving them bonus points if they could make me laugh hard enough to cataplexy.

wipeuntilitbleeds17 karma

Are you permitted to operate a motor vehicle?

sewingsarahelizabeth23 karma

I am, but I chose not to for over a year because it scared the fire out of me after I had a brief incident. I didn't get in a wreck. No one was hurt. I was able to pull over safely, but it was still crazy scary.

diabolix171 karma

Why on earth would someone with narcolepsy be allowed to drive?

qwop6597 karma

I think you could probably have said that more tactfully...however, given that the OP still has uncontrolled episodes of narcolepsy I don't think the OP would meet the criteria in my country for driving with a narcolepsy diagnosis. If your GP can prove that you have narcolepsy controlled by treatment then you would be allowed to drive here.

sewingsarahelizabeth10 karma

Close answer. My state does not have laws that require you to report your narcolepsy in order to get your driver's licence. That is a state regulation, not a federal one. Also, statistically, people who have narcolepsy that is well controlled do not have a higher rate of driving related accidents than people who who don't have narcolepsy. I choose when to drive and when I don't think it's safe for me to drive. That is my choice. Personally, I have only ever been in one vehicular accident in which I was the one driving, and it was not my fault. I was rear-ended while trying to turn left. I am a very cautious driver to begin with.

qwop6592 karma

Ah - we have mandatory reporting of narcolepsy diagnosis for drivers. You are told to notify the agency that issues driving licences, and if you don't do it your doctor is allowed to do it on your behalf.

Is your cataplexy triggered by stressful events at all? If so, would it be a problem if you were to be involved in a usually minor incident, eg someone rear-ending you?

sewingsarahelizabeth3 karma

It would probably be an issue, but I'm pretty sure that would stress anyone out. (The accident I mentioned was before my symptoms manifested.) Usually, though, if you get in a wreck of any kind, you reaction is to stop driving anyway, so at that point I would probably just call a family member to come pick me up.

sewingsarahelizabeth16 karma

Alright, guys. It looks like things are quieting down for the night, so I'm going to try to get some shut eye. I'll be back as soon as I'm able tomorrow, so keep the questions coming while I'm gone, k?

PointyWombat16 karma

Do you wear one of those Medical Alert bracelet things to inform people who stumble upon your sleeping body that you're narcoleptic?

sewingsarahelizabeth24 karma

I have one, but I don't wear it all the time. I have a service dog, though, and she goes everywhere I go. I also carry wallet cards with me that have my medical information on them in case something were to happen.

hyyt6 karma

What kind of dog is it?

sewingsarahelizabeth12 karma

Australian shepherd.

dahistoryteacher14 karma

[Serious] do you enjoy sleeping at night? Or does your condition cause you to dislike sleeping all together? I have not known anyone with narcolepsy to ask but I've always wondered this.

sewingsarahelizabeth28 karma

I really don't like to sleep anymore. I'm plagued by really horrible nightmares, and I feel like all of my time is being robbed from me by sleep. I can't remember the last time I was able to stay awake for 12 hours straight like most people do.

Halostar8 karma

:( I really hope things get better for you in this regard

sewingsarahelizabeth21 karma

So do I, to be honest. Some of my nightmares could rival a topnotch horror film, and I'm really tired of watching terrible things happen to my loved ones.

guavajuicebox13 karma

I really want to give you a hug buffet.

sewingsarahelizabeth22 karma

So many funny mental images....

Hillbillyjacob4 karma

As someone who was plagued with really freaking awful dreams for years due to childhood trauma I learned lucid dreaming. I never fully mastered it but most the time I'm aware of of the fact I'm in a dream and I have control over my choices. Have you researched lucid dreaming?

sewingsarahelizabeth5 karma

I have, but I've never been able to do it.

__soitgoes13 karma

When was the first time that you ever had an episode? (Not sure if that's how you call it) How old were you when it first happened? Can you recall/tell the story of it?

sewingsarahelizabeth32 karma

The first time I remember it happening and knowing something was really wrong, I was in early high school. I was supposed to be getting ready for church, and we were about to leave. I was in the living room waiting for my dad. He was upset with me because I had tried to tell him I was too tired to go that day, and he thought I was just making up excuses. I felt myself starting to fall, and reached out to catch myself on the table, but even though I felt it under my hand, I wasn't able to grasp it. I was semi-conscious, but I couldn't move, couldn't open my eyes, couldn't do anything but just lay on the ground. I kept wondering where my dad was and why he wouldn't come to help me. When I finally came out of it, I saw that I had knocked one of my mom's favorite glass lamps off of the table. I was so scared that I broke it. I thought that I had fainted, but I couldn't figure out why I remembered some of it if I had fainted completely. It scared me so badly that I never even said anything to my parents. I think I just wanted the whole incident to go away.

__soitgoes7 karma

Wow, thank you so much for the detailed response. This paints such a vivid image in my mind that I feel like I was there. This definitely gives a better insight into what you must feel/experience on a day to day basis.

I can definitely relate to this part,

It scared me so badly that I never even said anything to my parents. I think I just wanted the whole incident to go away.

Sometimes it's difficult to face some of the harsher realities in our lives but it seems you've come full circle, to embrace that you have this condition, but to make the most of it (helping us better understand narcolepsy through your AMA).

Second Question: What Music have you been listening to lately?

sewingsarahelizabeth10 karma

Uh... lots of music? Haha! Detailed answer to dumb answer. I listen to a huge variety, so it's hard to pin down what I drift from from one day to the next.

BA-ZINGG12 karma

Hello! You seem like an incredibly nice person with a golden heart and a bucketful of courage. You have expressed grief because of your condition, but I cant imagine that it will hold you down forever. Keep smiling, internet stranger! oh yea, question:

Do you usually get hit with a sleep attack and cataplexy in the same episode, or do they generally come as separate incidents?

sewingsarahelizabeth11 karma

Thanks. They can happen at the same time, or they can be separate. It really just depends.

kalel198011 karma

Do you feel an episode about to come on so you can better prepare for it, (like lay down quickly) or is it just random, 110% instant lights out?

sewingsarahelizabeth17 karma

It depends on how off guard the emotion that triggers it catches me. Most of the time I will feel it coming on. Laughter doesn't trigger me very often, but when it does, I don't usually fall asleep all the way- I just fall down and laugh myself stupid. Shock and fear usually catch me off guard and I'll collapse and pass out too. Things like anger and anxiety usually come on gradually, so an episode will come on gradually as well.

kalel19807 karma

1 last question, how long does an episode last?

sewingsarahelizabeth13 karma

It kind of depends on the trigger and other circumstances. Sometimes it will only be a few seconds. Other times it has been up to an hour when someone came to wake me up.

VaginaAdjuster10 karma

What has been the worst injury you have sustained from your condition? I can only imagine that doing certain tasks could be dangerous like riding a bike, driving or swimming/taking a bath. But you probably dont risk doing those things do you?

sewingsarahelizabeth23 karma

By the grace of God, the only injury I have received to date is a couple of bruises that I didn't even know where there until I saw them in the mirror later. I was very lucky in that I was taught how to fall safely before by symptoms fully manifested. I try to avoid doing potentially hazardous things when I'm really tired or emotional, but I'm usually able to live my life fairly normally. I've fallen asleep in the bathtub before. It was no big deal. I've never fallen asleep while swimming, but I don't go swimming very often anymore either.

talia-vin8 karma

I saw you dance video yesterday, and it was both terrifying and heart breaking, especially when you were trying to argue with your own body. Props for continuing to dance and teach, even if you can't perform- that takes a lot of willpower.

  1. Before you were diagnosed, during testing, and during the actual diagnosis, were you afraid of what you might hear? Are you ever ashamed of having narcolepsy? Like, does it ever feel like it would be easier if you had something else, something "less funny" so people would be more serious regarding your condition?
  2. Do you have anything else that exacerbates it, like depression?
  3. Do you notice more/less episodes depending on seasons, or is it fairly consistent?

Hope nothing was offensive, and thanks for the AMA!

sewingsarahelizabeth7 karma

No offence here! 1. My diagnosis was caught really early before my symptoms even fully manifested, so I didn't have much of the "Why is this happening? What is wrong with me?" phase. I was just stupid tired, mostly, so I went in for a sleep study. The results came back saying that I could possibly have narcolepsy, and it caught my mother and I completely off guard. Once all of the testing was complete and we had an answer though, it was more of a relief than anything. Suddenly all of my problems had a name, and once it had a name, we could start making it better. 1.5? Yes. I wish for that alot, actually. People think I'm faking it ALL THE TIME. Why would I fake something like this? It has ruined my life and is completely debilitating. Why would I want that? Even if I had something like epilepsy, which is also an invisible illness, people would be more understanding. If I had something visibly wrong with me, like if I had lost my legs or I was blind, at least people wouldn't accuse me of faking and refuse to help me when I actually need it (not to make light of people who have lost their legs or are blind). 2. I have some problems with anxiety that makes things really difficult. Panic attack trigger cataplexy. The meds to help me stay awake can give me panic attacks. The meds to calm the panic put me to sleep. It's a difficult cycle. 3. Time changes are pretty bad, but that's about all I've noticed.

talia-vin2 karma

It's got to be the worst feeling in the world, trying to ask for help or understanding and being written off as a fake. I am truly sorry you have to deal with that :/ I think most people underestimate how bad it can be because they don't see the parts where you're fighting just to make it through a sentence or not to fall on the ground, they just see things like the dude from Rat Race or think you get to take naps all day, like a cat.

Do you think the anxiety is caused by the constant threat of narcolepsy? Like you're anxious that it's a daily possibility that something could happen, so you trigger an attack, which builds future anxiety, repeat? That has to be so frustrating :(

Thanks for taking the time to respond! I'm pretty interested in sleep disorders, and your video was posted the day after I'd read up on some stuff regarding delayed sleep phase disorder so I was excited to see you were doing an AMA. It's crazy how something as basic as sleep can be so complicated and hard to regulate.

sewingsarahelizabeth3 karma

I actually have ptsd as well, so I have to fight that too, but the narcolepsy and the anxiety to build on each other sometimes like you mentioned. And sleep is the most complicated thing in my life, I think. And the most frustrating. I envy the people that have a real sleep cycle. I've always wanted one of those...

CompMolNeuro8 karma

I have medically resistant, intractable epilepsy. A few months ago, after 12 years of growing out of medicines, I had a Vagus Nerve Stimulator implanted. In short, it is a pacemaker for my brain. Are there any similar treatments for narcolepsy?

sewingsarahelizabeth9 karma

I've never heard of that.

GhostifiedMark8 karma

Do you bother with driving or are there ways you can do it?

sewingsarahelizabeth10 karma

I live in a city almost completely lacking in public transportation. I avoid driving when possible, but it's kind of a necessary evil.

GhostifiedMark4 karma

wow..i hope you haven't suffered any car related damages.

sewingsarahelizabeth7 karma

I have not, actually. I've been very, very lucky.

kazuri854 karma

How hard is it to wake yourself up after an episode? How quickly can it be done? If you can be woken up again almost immediately you might be able to rig some buzzer or something to your steering wheel.. Sounds crazy, but if it works..

sewingsarahelizabeth3 karma

It can be really hard to wake me up again if I'm in a really deep sleep. If I've just barely nodded off, even something as simple as saying my name will snap me out of it. I had a boyfriend that liked to blow in my ears. I HATED it, but it worked every time. I've heard of an invention that people are using that is kind of like a hearing aide that reads your brain waves and will buzz when it thinks you are starting to fall asleep. My problem is, once I get used to a sound, it doesn't wake me up anymore. I have to cycle through my alarm tones regularly.

BloodQueef_McOral8 karma

What does the ship rocking on the waves represent? Can't you go straight into an action-hero pose without the transition?

sewingsarahelizabeth11 karma

Oh. That choreography is an old, Japanese fisherman's dance. I didn't write it.

cec-says7 karma

First off I just wanted to tell you that you are awesome, and I hope you find a way of getting back into performing.

I recognise a lot of your symptoms from myself - this is how I feel every day. I will fall asleep every time I sit down. I have missed so many classes because I just couldn't stay awake and the struggle to do so meant I wasn't paying attention. Have to set all alarms to minimum 30 minutes before I need to get up because I won't get out of bed otherwise. The only symptoms I'm missing are the sudden onset sleep and the cataplexy. Although I get weird moments where my main muscles in my arm or thigh just give up. That and the lovely mixture of sleep issues (nightmares, terrors, sleep walking, talking and paralysis) means all I ever think about is napping. I even once, in my sleep, had a dream about finding time in the busy day ahead of me to take a nap. That's right, I dream of sleeping.

So how did you convince them to do the second sleep study? I had one done two years ago now, but nothing came of it. They told me I did not have narcolepsy or sleep apnea. I'm still as tired and all they say is "try taking a nap," which, incidentally, is the issue here...

Also, are you on any medication?

Big hugs!

sewingsarahelizabeth6 karma

Ug. face palm I get so sick of hearing that. Sometimes I just want to grab people by the shoulders and yell, "I do take naps! I wouldn't survive without them!" Anyway, if you were not seeing a sleep specialist, they really might not have known that to look for specifically. And I'm not an expert, but what you are describing does actually sound like a minor form of cataplexy, which is defined by a sudden loss of muscle control or strength usually brought on by strong emotions. That fits the definition. It feels like someone walked up behind me and hit them just right so that they give out. Mine hits my knees more. That's why I actually collapse all the way.

cec-says2 karma

I know!!haha "have you tried having a nap?" Yes they last minimum of 90 minutes mm top of the 11 hours sleep i had last night, and they make me wake up feeling even more tired!

I did go to hospital and they did ask me about cataplexy but she sorta dismissed it cause it wasn't in my face? They also didn't really ask about all my weird stuff that happens when I actually sleep. I'm tempted to try again but because I'm going back to the country I'm from, I know i will only be sent to the same hospital as we don't have that many places that do the study. So what's he point really! Mine is the big thigh muscle on the front. Quad? It just sorta disappears for a second when I'm walking, like it forgot it was meant to be doing something haha! It's the same in mwwapm. It just sorta bucks then gets on with life.

Do you get microsleeps and go straight to rem sleep? I'm always wondering if that's what happens cause i can fall asleep for like three seconds and have this incredibly vivid dreams while I'm out. Same with snoozing in the morning, alarm goes, I punch snooze, go back into my dream, repeat until I'm late for work ha!

PS do you actually sew? Me too! And I'm a performer too! And always tired too! What.. are you me? Haha!

sewingsarahelizabeth2 karma

I don't know. Are you secretly me???? Lol! And yes, I do sew. I love it. I do dream really quickly. It can be annoying because it's so exhausting. I will have just wanted to rest my eyes a bit and the next thing I know I will have fallen asleep and scaled a mountain in 5 minutes. That would be exhausting for anyone!

cec-says2 karma

Well, my name isn't Sarah Elizabeth. I feel like there's a clue in there somewhere.

My microsleep dreams are different to my normal dreams in that while I'm in them i think I'm still awake and it feels like it's really happening, it's usually some absurd continuation of whatever i was thinking about after drifting away. There's one thing though, if it's while I'm on transport (ALWAYS fall asleep on transport haha! ) i will find something in my dream super funny and sleep giggle! Then I always wake up and find it super embarrassing for that split second before i wake up properly:)

sewingsarahelizabeth2 karma

Ah! I've had those sorts of things happen too! It's so embarrassing!!! "What are you laughing at?" "I.... I have no idea.... Please just ignore me."

IWannaLolly7 karma

How frequent are your episodes? Do they tend to occur in clusters or are they spaced out?

sewingsarahelizabeth10 karma

My doctor and I have gotten them down to a couple of times a week. If I have more emotional nonsense going on it my life, they will happen more often. So sometimes they end up happening in clusters until I can get my emotions under control.

Mexicantdie6 karma

What kind of process went into identifying your narcolepsy? Which symptoms do you remember having before you knew it was narcolepsy?

sewingsarahelizabeth18 karma

I was just stupid tired. I would be in tears because I kept missing my classes no matter how badly I wanted to go-even the fun ones-and I couldn't wake up in time no matter how hard I tried. I went to a sleep specialist to have the second sleep study I'd had since I was about 10 years old, and he said my results look really suspicious. I was caught completely off guard. There was another long series of tests, but I was actually very lucky. They caught it in me before my symptoms even fully manifested.

AnarchyDGAF6 karma

Does your condition often frighten people in public that may be unaware of it? What is the worst place your condition has affected you?

sewingsarahelizabeth15 karma

Haha! Yes! I fell asleep at the table at a church lunch once and a little old lady woke up freaking out because she thought I was going into a diabetic coma.

AnarchyDGAF9 karma

Being a diabetic myself that is my number one fear. That old lady probably almost had a heart attack lol

sewingsarahelizabeth2 karma

Ya... She was embarrassed afterwards, but we all got a good laugh out of it later. I would rather someone be overly concerned than be ignored when I really need help.

PointyWombat6 karma

Are the nightmares you mentioned a common thing among narcoleptic people?

sewingsarahelizabeth14 karma

Yup. We all get it pretty bad. Well, I take that back. Some people just have dream sagas, but they're not always nightmares. Most of us have pretty bad nightmares, though.

cayal36 karma

Does it ever stop you doing something you've always wanted to do?

sewingsarahelizabeth11 karma

Only all the time. I was going to school for theatre and music. It was my life. I haven't set foot on a stage in... 2 years now?

cayal35 karma

damn, sorry to hear that.

I know nothing about the affliction so forgive me but medically speaking are the reasons for it known and are there any advancements on prevention/cure?

sewingsarahelizabeth11 karma

They think they figured out the cause less than 10 years ago, and it involves alot of medical, technical jargon, so please forgive me while I dumb this down big time. Basically the gist is that there is a certain chemical in your brain that regulate your sleep wake cycle, and only one type of cell the produces it. For some crazy reason, your body decides it's evil and eats it, so you don't have that chemical anymore. It's basically both an autoimmune disorder and a neurological disorder. The current theory is that there is a genetic aspect that is triggered by an extreme illness as a child.

hugh_wanstenau3 karma

I believe the chemical you are referring to is Melatonin. I take a few every night with a couple fingers of Crown Royal to fall asleep.

Good luck with your fight. You are a strong women.

sewingsarahelizabeth7 karma

No, I looked it up again because I couldn't remember it at the time. It's hypocretin. Melatonin can be purchased over the counter. They haven't found a way to replace the body's hypocretin levels yet.

CaLoChe6 karma

Has this ever affected during intimate moments??

sewingsarahelizabeth17 karma

snickers Actually, the first time a boy kissed me, I passed out on top of him. He knew I was narcoleptic, but I was still sooooo embarrassed when I came to. He just smiled at me and said, "Are you kidding? I got to sit here and cuddle you as much as I wanted! It was adorable!"

Kurtuozan5 karma

How do you cope with it,since there is no cure?

sewingsarahelizabeth22 karma

Very slowly, lol. What other choice do I have other than to just keep trying to move forward?

PM_ANY_PICS5 karma

Where is the strangest place that the disease(is that the right word?) has affected you?

sewingsarahelizabeth15 karma

Hm...... I've been found sleeping on the stairs before, but that was at home. Falling asleep in restaurants is always fun. I'm always really happy when I wake up and don't find food all over my face. Passing out on the floor of Walmart is always exciting too.

PixelLight5 karma

What things do you wish you could do that your narcolepsy doesn't allow you to do? Is there something you'd like to share about how your condition affects you that would surprise people?

It's hard to know what to ask. Wish you the best of luck in the future though.

sewingsarahelizabeth16 karma

I miss performing like the sun misses the flower in winter. I was originally going to school for theatre and music before my diagnosis. 3 days before my first opera was to open I cataplexied back stage and no one would help me stand up again. I was removed from the show and told that I was a safety hazard.

SirCharlesV4 karma

Have you ever used someone's knowledge of your condition to your advantage? Let say for example to get out of an awful conversation about religion?

sewingsarahelizabeth14 karma

Uh...... Well, I can't say that I've done it twice......

DazBlintze4 karma

Do you ever fake it because you can?

sewingsarahelizabeth7 karma

Full blown cataplexy, sleep attack, everything? No. It's already hard enough that I have to deal with it for real. Just not being awake because I don't want to deal with something? I can't say that I've done it twice....


Are prescribed methamphetamine?

sewingsarahelizabeth9 karma

No. No I'm not. I'm really sensitive to any kind of stimulant. I can't even drink coffee, but then again, I don't even like the way it smells.

bigtcm3 karma

One of my ex girlfriends suffers from narcolepsy.

A few years back there apparently was a Ritalin shortage and she was prescribed something else for a few months until Ritalin was available again. Even with her Ritalin, it was pretty obvious when she was hyped up on the amphetamines, and when they finally would start to wear off.

Man those first weeks were crazy before they got the dosing on the alternative amphetamines figured out. She went from super sleepy all the time to hyped up awake all day and all night. At the beginning, she hated how that medication made her feel, so sometimes she just wouldn't take it at all and would kind of be a mess for the entire day.

Luckily she could feel a sleep attack coming and there was no cataplexy, so she'd just lie down or rest her head if she felt sleepy.

I can't even imagine what you must go through without any medication at all.

sewingsarahelizabeth5 karma

Oh, sorry to miscommunicate. I am medicated. Sorry. I just have to be really careful what I take and how much. Sorry! I saw methamphetamine and my brain went straight to meth. Sorry!

Tdavis894 karma

Thank you for doing this AMA. This is a very interesting topic and it's nice to have the opportunity to understand an alternate living experience from my own.

My question is with regards to interpersonal relationships. You alluded to the topic when talking about Howls Moving Castle as your favourite Miyazaki film. Do you feel that your conditions affect your intimate relationships in any way? Dating and relationships can also be emotionally intense; do you feel that you have episodes more when with someone?

Again, thank you for sharing.

sewingsarahelizabeth3 karma

Yes, actually. During the relationship, and after it ends are always very emotional times. Sometimes I will get so excited to see someone that I'll go down. Other times I'll remember something about them and miss them so much that it will cause me to go down as well.

LordNapoleonComplex3 karma

You're so cool, thanks for doing the AMA. What's the most common misconception you encounter regarding narcolepsy?

sewingsarahelizabeth7 karma

The most common? People think it's something funny to just laugh about. They never think about it being something serious that can actually interfere with my life. Or they think that I'm lucky because I "sleep all the time." My quality of sleep is actually really horrible.

doomofmen3 karma

As someone whose girlfriend also has narcolepsy, are there some things you would like to tell me? We have been together for a while now, so I know how to deal with the cataplexy and the increased need for sleep. But perhaps there are some other things that I can do that will help her, that I'm not necessarily aware of? Or helpful tips?

sewingsarahelizabeth4 karma

That is so sweet of you to ask! I'm a little envious! More than anything, I think, is don't ever make her feel guilty for her symptoms. If she says she's too tired to do something, anything, she means it. If she forgets important things from time to time, it's not her fault. She'll never be able to do as much as she wants to, and you have to let her know that that's ok. Think about how you felt when you were the most exhausted you have ever been in your life, and that's what she is fighting every day. It wears down your spirit.

doomofmen3 karma

I've watched the video now, and I see you 'fighting cataplexy' on several occasions. I don't think my girlfriend does this/knows how to do this, could you elaborate a bit on how you (try to) do it? How effective is it - as opposed to giving in and letting it happen in a controlled manner (which seems to be how my girl handles it)?

sewingsarahelizabeth4 karma

I fight it because it makes me mad that it is controlling me. Eventually, it will win every time, and it is usually better if I just let it go, but I don't like to. For me, I usually get a little bit of a warning- like a dizzy spell or something like that. It's usually just enough time to grab on to the wall or something. I also know that I have an easier time staying on my feet if I'm moving as opposed to standing still, so if I can't sit down, I'll try to walk if I feel something coming on.

TrustyTapir3 karma

Question: How did you end up choosing that Bleach music as the soundtrack for your video? It really made the video amazingly hypnotic and creepy (in a good way). Are you a Bleach fan? Did you chose the music randomly or intentionally for the effect?

sewingsarahelizabeth6 karma

I liked Bleach for a long time until they started trying to redo everything after the incident with the arancar. It felt too forced, and I didn't like it. I'm a big fan of sound tracks anyway, and I think they are a powerful way to convey emotion, so I looked for a long time for something to use before I chose that. I really wanted to convey how what I was going through wasn't something to laugh at like most of the media would lead you to believe.

amw1573 karma

You said that the symptoms often come during emotional periods.

The video that is now viral ... do you remember what you were feeling right before, which may have triggered your symptoms during the video?

Have there been any suggestions toward maybe cognitive therapy (better controlling emotions) so that the moods don't bring on the cataplexy symptoms?

sewingsarahelizabeth3 karma

I control my emotions more than I should now, actually. I end up bottling them up until I'm in an environment that is safer if I were to have an episode, which usually ends up meaning that I explode when I'm at home. I always feel really terrible when my emotions go haywire in my family's general direction. :(

lisabauer583 karma

Have you ever did something like sleep walking where you thought what you were doing was normal but when you wake up find it wasnt? Like preparing a roast and putting it the refrigerator to cook only to lose where the roast was when you checked the oven? Kinda like sleep walking?

sewingsarahelizabeth4 karma

Haha! Yes! That happens all the time, actually. I swear my keys and my shoes just go on tropical vacations periodically. I'm constantly losing them. Every time something weird happens in our house, like clean dishes appearing in the fridge, we just blame the narcolepsy monkeys.

lisabauer582 karma

I do this all the time myself so I know what its like to be on that end of the families jokes but, like you, I just join in the fun. Cant change it anyway, right? :)

I also have a sleep disorder but instead of emotions or sudden noises that put me to sleep, its after a certain amount of time being awake when a veil of sleep takes over. I can feel it coming on so I know when to sleep. Many times I have fainted but knowing when that feeling comes I know how to slip down gently.

Sometimes people dont know what is happening to me. If they are talking to me when the sleep begins, I just stare at them with a blank look on my face. This makes them think I am ignoring them or making them feel stupid but its something I cant stop and hard to explain to them because I will not be wholely awake for over two hours. I think I am in those zones when I do those odd things. Is this similar to your infliction?.

sewingsarahelizabeth3 karma

Ya, it can be. I'll have moments when I'll be talking to someone and I'll realize I haven't heard a word they just said because of a micro sleep. It's like the cd to the sound track of my life has a scratch and keeps skipping.

lisabauer582 karma

You should write a book. Your descriptions are beautifully illustrated by your choice of metaphors and makes peoples mind race into a greater understanding of your life. Its delightful to read.

sewingsarahelizabeth2 karma

Oh! Thank you! That's such a nice thing to say!

PrincessPenn3 karma

At what age did this start happening and like how did your parents react?

sewingsarahelizabeth4 karma

The first time I had an episode, I was in early high school, but I was alone and never told anyone. Looking back, I had more after that, but I was always so athletic that I was able to catch myself. I didn't have full blown cataplexy that I was able to recognize what it was/could be until I was in college. My parents have always been very supportive, especially my mother.

ilonzo3 karma

I wish I had a good question to ask but I can't think of any..

How does it feel having your video go viral? Gotta imagine it's weird. How did you find out it went viral?

sewingsarahelizabeth9 karma

Weird. Weird is the right word. And I found out because my inbox started exploding. XD

mrslipple3 karma

Can you explain the episodes of "micro-sleep" and how exactly they come on, what you are feeling and how you fight them off? Do they happen more often than full narcoleptic episodes?

sewingsarahelizabeth4 karma

The best way that I can explain a micro sleep is that part of your brain will go to sleep for a few seconds while the rest stays awake. It's kind of like zoning out times 20. They do happen more often (for me anyway, everyone is a little different) that full sleep attacks or full body cataplexy.

blakeman13 karma

Does it hurt when you are confused or trying to fight it?

sewingsarahelizabeth7 karma

No, it doesn't cause me pain unless I fall on something. It's really just more of a bother than anything.

dr_vermhat3 karma

Have you ever had an episode while driving? I imagine that'd be terrifying.

sewingsarahelizabeth6 karma

I have, but I was able to pull over safely and let my friend take over the driving.

thekeemoman3 karma

This comment has been overwritten to protect this user's privacy.

sewingsarahelizabeth3 karma

Is that the same thing as provigil or nuvigil? If so, yes, I have, and it has helped.

Revisional_Sin3 karma

Is there anything I can do for you? Maybe a favourite charity I can donate to? Happy to send it to you if you'd prefer.

sewingsarahelizabeth3 karma

REALLY??? YOU'D DO THAT????? OH MY GOODNESS, YES! This is an organization that helps feed children in Colombia. I've been there before. I've worked with them in person. I'm still doing work to support them, and I've become good friends with the people who run it. I'm seriously so happy right now that I feel like I'm going to cry... I'm trying to find the link to the English website again, but here is the Spanish one for now. I'll post the English one as soon as I find it.

sewingsarahelizabeth3 karma

Ok, here is a link explaining how this ministry came to be. And here is the English link to OASIS. They do such wonderful work there. I want to go back so badly one day. Those children are so beautiful, and they all have such impossibly huge dreams.

EasternEuropeSlave3 karma

Hey there, thanks for doing this AMA :)

I have insomnia, would you like to trade?

sewingsarahelizabeth3 karma

Actually, no. Most narcoleptics are misdiagnosed as having insomnia at first because their nighttime sleep quality is so poor that they do experience insomnia as well. I was one of them.

justfnpeachy3 karma

I have a serious question, as I think I may be experiencing this on a mild level. Its been happening for a few months now. I can never get a full nights sleep, constantly tossing and turning throughout the night and no matter how much sleep I get I am still exhausted all day, every day. In the morning I feel like hell, but I shower go to school and I feel fine. Then, I'll be sitting in class and of a sudden I get dizzy, get an ill feeling in my stomach and get dizzy and start getting cold and sweats like I am going to faint right there on the spot. It happens probably once or twice an hour all day. I can be in the middle of a conversation then all of a sudden I will stop and can't move, talk, and sometimes breathe for a few seconds and I fight "it" (not sure what "it" is, that is why I am asking). I have trouble focusing and remembering a lot of things. For instance, I can sit through an entire lecture and only remember some of what was said. Did any of these apply to you? Thanks, and I hope this reaches you.

sewingsarahelizabeth3 karma

Actually, yes. I experience the same sorts of things on a regular basis. It's entirely possible that that is what you are experiencing, but there are alot of other conditions that could cause similar symptoms. If you are concerned, you should see your health care professional. I'm not an expert. Don't ever be afraid to go to your doctor if you think something is wrong. It's better to be safe than sorry.

thejoshuawest3 karma

  • Hey, How do stimulants like caffeine effect your narcolepsy? I saw your other note saying you're really sensitive to stimulants, but does that mean they keep you from having "an episode" (is that right)?

  • Side note, I really like the word "narcolepsy" just for how it sounds, not the meaning or messaging behind it, just the.. aestherics of the word. Any thoughts on that?

  • Edit: More thoughts and questions! -- Have you ever tried finding a narcoleptic dog or cat as a pet? Sounds extra therapeutic. :)

  • Do you consider it offensive if someone calls you "a narcoleptic"? (I see lots of redditors saying "your condition" like calling it what it is should be avoided, almost like it has a negative social stigma.)

  • How do you feel about having narcolepsy? Like do you consider it an enemy to triumph over, a part of who you are for now, something you hate and are just waiting for a cure, etc?

  • If your narcolepsy has you sleeping during the day, for example on the stairs for an hour, do you have nightmares during that time?

  • Is a narcoleptic sleep just like a normal "bed time" sleep?

  • Sorry for the long diatribe, I've just never had the opportunity to ask these questions!

sewingsarahelizabeth3 karma

  • Hey, How do stimulants like caffeine effect your narcolepsy? I saw your other note saying you're really sensitive to stimulants, but does that mean they keep you from having "an episode" (is that right)?

I process caffeine twice as fast, get twice as hyper for half as long, and crash twice as hard. It's down right scary. I drank one of those mountain dew slushies they sell at taco bell in one sitting once thinking it was only mountain dew FLAVORED. We were trying to paint the fresh plywood we had just put in the outside of the shed before a storm hit. In the time it took my dad to walk up to the house, find his drill, decide that he didn't have time to fix the garage door and should come help me, and walk back down to the shed, I had painted two walls, both of which were tall enough that I had to jump to get the paint roller on the pole to the top, and one was over a set of stairs. He said it was like watching a psychotic rabbit. As soon as we finished and the rain started, I fell asleep and woke up about two hours later, and I really don't like thunderstorms.

  • Side note, I really like the word "narcolepsy" just for how it sounds, not the meaning or messaging behind it, just the.. aestherics of the word. Any thoughts on that?

I'm not as fond of it just because it sounds so much like "narcotics" and "necrosis" and "necrophilia." I'm more fond of words that sound smooth like "aeolian," or have interesting etymologies, or are just plain fun to say like "bubble" or "calla-lily."

  • Edit: More thoughts and questions! -- Have you ever tried finding a narcoleptic dog or cat as a pet? Sounds extra therapeutic. :)

Uh... No... I have a real service dog. She's my baby and takes really good care of me, and goes everywhere I go. I hate that I ever needed her, but I wouldn't trade her for the world.

  • Do you consider it offensive if someone calls you "a narcoleptic"? (I see lots of redditors saying "your condition" like calling it what it is should be avoided, almost like it has a negative social stigma.)

Lol, no. I call myself narcoleptic all the time. If there's a social stigma, I'm not aware of it.

  • How do you feel about having narcolepsy? Like do you consider it an enemy to triumph over, a part of who you are for now, something you hate and are just waiting for a cure, etc?

It's annoying as all get out. I hate it. I wish it would just go away. I'm not holding my breath for a cure in my lifetime. I accept it for what it is.

  • If your narcolepsy has you sleeping during the day, for example on the stairs for an hour, do you have nightmares during that time?

Yup. It happens. That's always really disorienting too.

  • Is a narcoleptic sleep just like a normal "bed time" sleep?

No. I've never been able to maintain a proper bedtime in my life. I've always wanted a real sleep cycle. I've tried everything, but I can never keep it up for more than a couple of weeks at a time.

sewingsarahelizabeth2 karma

Well, it looks like things are winding down here, so I guess I'm going to wrap things up. You can still feel free to contact me though. I don't mind at all. :)

mingsaints2 karma

Hey, are you still awake? Lol. Kidding aside, what's it like living with narcolepsy? Do you take amphetamine-based meds to manage your symptoms?

sewingsarahelizabeth3 karma

Narcolepsy is frustrating. That's really the best word for it, maybe with a dash of extra annoying on top. It keeps me from doing alot of things I want to do. There have been times that I've been in tears because I want to go do something so badly, but I can't stay awake long enough to do them. And yes. I've been taking Provigil.

MisterMask2 karma

So, I have to ask... is there anything you really want to try that you are too afraid to? Like swimming or martial arts or something.

P.S. As someone who loves anime soundtracks, Shiki OST is the way to go, lol.

sewingsarahelizabeth2 karma

I've wanted to learn Judo for forever, but everyone else is too afraid I'll hurt myself. Other than that, it's pretty much been my call on what I feel comfortable doing or not. I can't really think of anything else. I go swimming still, just not as often as I did as a kid, but that has more to do with my general dislike of prancing around in a bathing suit in front of the entire world than the narcolepsy.

onlyamonth2 karma

Have you ever seen narcolepsy in a movie and did you agree with the portrayal/how did it make you feel?

Example: there's a character in Moulin Rouge with narcolepsy, it's portrayed humourously.

sewingsarahelizabeth3 karma

Right now I can only think of the Shrek movie that one of the princesses was supposed to be narcoleptic. I really kind of hated it...

SpookySP2 karma

Fellow sleepy head here. My reply to the original thread was

Q: Do you ever get those very mild cataplectic seizures where only the muscles around your neck and tongue go offline? Mine used to be be triggered only by laughter but now it's not a problem anymore but those little snaps of your tendons in your tongue hurt like hell. I hate those.

sewingsarahelizabeth3 karma

Wow. No, I can't say that I've ever had cataplexy in my tongue! I'm so sorry. Mine is more in my knees.

Dovahzyzz2 karma

More internet hugs over here. Quick question too, have you ever or do you ever plan on going to a gym? I don't know why that was the first question that popped in my mind, you just look fit and I'm curious how you maintain it :)

sewingsarahelizabeth3 karma

I don't really like gyms because I get bored easily. I like zumba and archery alot though.

Dovahzyzz1 karma

Oh wow archery that's pretty kickass :) I have the dexterity of a 3 year old so you're more talented than me there. All I can do is pick stuff up good (I have been formally educated at Derek Zoolander's School for Kids who Can't Read Good). That's awesome though. When I saw your video my heart honestly ached for you. But yet you seem like such a happy person. +1 You're amazing

sewingsarahelizabeth5 karma

I try really hard to fight off any negativity about my situation. It's not like it's going to fix it. Sure, I have days that I have to throw a pity party and cry a while out of frustration, but I am usually able to keep my chin up. I'm glad for what I have. I've been extremely blessed. God is still good. Who am I to question where I am?

Dovahzyzz3 karma

Hey, you've been blessed with getting a message across :) All this sudden interest in the conditions that plague you are because of you and your actions. You've done your part and made your mark on the world. Even over here in New Zealand people know who you are. Your attitude is amazing and admirable. I wish more people could be as hard working and determined as yourself. And it's alright to cry once in a while hugs :) The world is lucky to have you.

sewingsarahelizabeth4 karma

Waaa!!! Really!?!?!? You're in New Zealand!?!? That's amazing!!!!

moominsluxyraptor2 karma

What was the worst time you had an episode? Ah man this genuinely fucking sucks! You are so brave! I have had one seizure before and that was bad enough! Internet hug!

sewingsarahelizabeth2 karma

I used to get stuck in the kitchen alot when no one was around. That floor was cold... I've never actually had a full blown seizure, though I've had seizure like symptoms before. I'm very lucky that at least my condition isn't deadly.

edmonton692 karma

What is Narcolepsy to you as an individual? P.S Not looking for a Wikipedia definition :)

sewingsarahelizabeth4 karma

Narcolepsy is a stupid, obnoxious condition that steal all of my time away from me and replaces it with sleep against my will.

Alphite2 karma

I went to college with a guy who had narcolepsy. He worked as a manager at Wendy's and had burns up both of his arms from when he fell asleep and went arms first into a fryer.

I never thought to ask him but I am curious to know. If you hurt yourself when falling asleep (for him his arms going into a fryer with oil, for you maybe hitting a limb off a table or something) does it hurt immediately and wake you back up some, or does the sleep over power and you wake up in a few seconds and then deal with the pain?

Thanks for all your answers, and don't forget to be awesome! :)

sewingsarahelizabeth3 karma

AHH! That's terrifying!!!!! I have actually been very lucky in that to date I have not yet injured myself other than a bruise here and there. I can't imagine waking up to your arms in the deep fryer! shudders

Dwelven2 karma

I love you, where do you live, can we date?

What's your favourite show?

sewingsarahelizabeth5 karma

I'm not really relationship material. Sorry.....

sewingsarahelizabeth2 karma

Ok! I'm back and ready to answer more questions. Sorry for the massive delay!!

shellshark7772 karma

Hi Sarah, I work for a pharmaceutical company in California. Xyrem is probably the major drug that helps our patients with narcolepsy. I was wondering if you ever heard of xyrem or what medication you are taking to help narcolepsy?

sewingsarahelizabeth2 karma

I had a bad reaction to xyrem and had to stop taking it. Sorry, Jazz. :(

WJSidis2 karma


sewingsarahelizabeth7 karma

  1. I am able to drive, but I don't like to.
  2. I have never seen that show before, but the link you shared with me wasn't too far off. They made him look a little bit like he was having a seizure, though once he was actually down.

ErroneousDylan1 karma

If you are having sex with someone and you fall asleep and they don't know and keep going, does it count as rape?

sewingsarahelizabeth10 karma

I don't have the slightest idea. That's not something I've ever had to worry about, and I don't plan to have to worry about until I'm married and then only with my husband.

adrienlatapie1 karma

How long have you been studying japanese? :)

sewingsarahelizabeth1 karma

This is only my first semester officially, but I studied as best I could independently for over a year. I've learned more in my class though. XD

manowarp1 karma

You're off to a great start with your kana! I've been studying Japanese 15 years and my handwriting's still terrible. Fortunately there weren't many times that mattered when I lived in Japan. People were continually amazed I could use chopsticks, so the bar for impressing anyone was very low.

I have to ask about the 'sewing' in your username. If that's one of your hobbies, it sounds like a potentially prickly one with narcolepsy. Have you ever stuck yourself during an episode?

sewingsarahelizabeth2 karma

Haha! Ya, my Japanese friends are pretty easily impressed. I love them to bits though. I do sew. I love it. And everyone who sews sticks themselves once in a while. It just comes with the territory.

manowarp1 karma

Have you ever been to Japan or would you like to go? I know that takes a lot of preparation with a service dog, but you might find it the ideal place for being a narcoleptic if you don't want people to notice too much or make a big deal of it. It's not unusual for residents of bigger cities to have to step over someone sleeping in an odd place, or to have someone sitting next to them on a train conk out on their shoulder or lap. I didn't spend much of my time in the city, but after a few visits I wondered if my body exerted an exhausting gravitational pull on others, given all the times I ended up being slept on. :)

sewingsarahelizabeth2 karma

That's kind of fantastic. I've always wanted to go. I don't know what the laws are regarding service dogs there though. I'm still doing my research.

greenmask0 karma

if every animal was an ice cream flavor, which animal would taste the worst?

sewingsarahelizabeth7 karma

You know, I'm going to be thinking about that for a solid week now. XD Maybe something venomous? Venom can't possibly taste good. Or maybe dung beetles. Or spiders! Ah! Spiders!!

Chattery-1 karma

Do you ever wake up laughing because you have narcolepsy?

It's a funny disorder but I hope it's doesn't interfere too badly with your life :-)

sewingsarahelizabeth13 karma

Anytime something weird happens around the house like finding empty dishes in the fridge, we blame it on the narcolepsy monkeys. I will also cataplexy from laughter sometimes too. Unfortunately, it was caused more grief than humor. Narcolepsy completely changed my life, and not for the better. In fact, it ruined it. I had to leave school. I lost my job. I had to move back home with my parents. My boyfriend broke up with me during the diagnostic process. It's been horrible.