#narcolepsy

[short-honey-badger]

Go back to sleep, Ace

Ace has an episode and wakes up with his head in your lap.

First time writing Ace so lemme know how I did! ❤️

Masterlist

Ace doesn't remember passing out, so that must mean that he'd had another one of his episodes. Usually, that wouldn't bother him, but he vaguely recalls speaking to you, his crush, right before his mind goes blank. However, wherever he is, Ace is comfy as hell and really doesn't want to get up.

There are fingers running through his hair that stop and gently scratch his scalp every now and then. Ace doesn't remember the last time someone has played with his hair like this. He kinda likes it. His face is pressed into something soft and squishy, and he is shameless in the way he sighs and presses into it.

The sound of you snickering has Ace opening his eyes, embarrassment, and mortification flooding his system. The first thing he sees are your legs extended in front of him, your sandal covered feet crossed at the ankles. He goes to rise up, apologies bubbling up and spilling out.

"Shit. _, I'm so sorry. I didn't uhm-"

"Shut up, Ace. It's not a big deal," you interrupt Fire Fist and gently push his head back down to your lap, your fingers still tangled in his black locks. His mouth clicks shut, his freckled cheeks so hot they may as well have been on fire.

"Are you sure? I know I'm heavy, I can move?" Ace stresses again but can't help the way he slumps down when you resume your careful petting, and soon his eyes begin to grow heavy.

"I don't mind. Go back to sleep, Ace," You assure him once more and are rewarded with the young man rolling so that he could look up at you, his arms winding around your waist to cuddle you close. Fire Fist is back asleep within moments, feeling safe and comfortable with you keeping him company.

#reader insert #one piece #fluff #portgas ace x reader #ace x reader #portgas d ace #ace #ace one piece #one piece x reader #blorbo #narcolepsy

[kami-kun1003]

Silver’s narcolepsy is so… interesting to me

everyone always talks about it like it’s a silly joke. like “ha ha sleepy boy!!!” which is. fine. but from what we see in the game, it’s undoubtedly a serious physical disability. it literally causes him to fall asleep randomly throughout the day and there’s no way he can fight it. that’s genuinely scary and a cause for concern. what if he fell asleep next to a lake and drowned or something??

i can’t help but think about how much it must affect him mentally. imagine you’re the only human in a fae family, and your whole life you believed that you would be the first to die, and you need to make the most out of the short time you have to repay your loved ones for raising you.

and the universe decides to give you a sleep disorder that completely hindrances your ability to do so. you doze off CONSTANTLY, wasting hours upon hours of precious time that you could’ve used for something more useful.

you can’t control it. once you feel that drowsiness, it’s over. nothing helps; you just can’t stay awake regardless of what you try. no one knows what’s wrong with you so you just assume that it’s your own fault for being so lazy. your father’s done everything he can, bless his kind heart, but even he can’t find a solution.

nobody understands what you’re going through, they all say it’s normal to feel bored or tired from schoolwork every now and then. which isn’t how you feel at all, but you just don’t have the words to describe it.

it gets to the point where you’re failing your classes because your body simply refuses to function the way it’s supposed to. your teachers blame you and they’re right, it’s your fault it’s all your fault isn’t it?

your peers make fun of or look down on you for being unusual. for always falling asleep. for not expressing emotion (doesn’t anyone else find it hard?). you feel ashamed. you try to fix it but you can’t. nothing can ever be fixed.

it’s frustrating to be unable to control your own body. you’ve grown used to it, and so has everybody else, although that doesn’t make it any less of a problem. but at this point it feels like there’s no other choice but to just live with it.

and in the end, you feel guilty. your father has given you everything, and yet you can’t give back. does that not make you a failure? a disappointment of a son? here you are, living, breathing, thinking, and you can’t even do anything to thank the person who gave you the luxury of existence.

wouldn’t you hate sleep? wouldn’t you utterly despise that feeling of drowsiness that overtakes your mind when you so much as stay still for a single minute? would you not cherish the moments in which lethargy did not plague you?

oh, how you wish there was a cure.

(tagging: @fruixtii )

#these are just my personal thoughts so pls be nice if u disagree— #twisted wonderland #disney twisted wonderland #twst silver #lilia vanrouge #diasomnia #malleus draconia #sebek zigvolt #twst headcanons #twst analysis #twst angst #narcolepsy

[arisatohamuko]

a lot of people think narcolepsy is just ‘being sleepy’ or even ‘being lazy’ but it’s so much more than that. symptoms of narcolepsy include:

extremely intense, vivid dreams/nightmares. narcolepsy is defined as a disorder in which most of, if not all of your sleep is REM sleep. this is what causes daytime sleepiness; your body is NOT RESTING CORRECTLY and is physically incapable of doing so. we have little, if any deep sleep.

sleep paralysis and hallucinations.

cataplexy, found in type 1 narcoleptics. cataplexy is very similar to a seizure, though it is not classified as one. episodes of cataplexy are usually (but not always) brought on by strong emotions, and cause you to lose control of different parts of your body, ranging from muscle limpness to full on collapse.

EDS, or excessive daytime sleepiness. often times, narcoleptics will suffer from something called a sleep attack, where they fall asleep uncontrollably. this can happen while working, driving, or doing hobbies.

increased risk of all cancers and other (yes, narcolepsy is suspected to be an autoimmune disease!) autoimmune diseases, as well as an increased rate of mental health issues. ADHD, diabetes, heart disease, and depression are often co-morbid with narcolepsy. tying in with this, we have an increased rate of suicide.

insomnia due to the nature of extremely fragmented and disrupted sleep. intense and vivid nightmares can often make WANTING to go to sleep difficult as well. pretty much any other sleep disorder can be co-morbid with narcolepsy.

decreased cognitive function. memory issues are common in people with narcolepsy; even a mild case of narcolepsy can be compared to going 48-72 hours without sleep in a normal person...except its every day.

extremely poor quality of life. [1] [2]

not a symptom, but it often takes narcoleptics several years to be diagnosed w this disability; it is EXTREMELY under-diagnosed, and testing and treatment are very expensive even with insurance.

there is no cure for narcolepsy, only treatments. the only treatments we currently have are various stimulants (adderall, modafinil, ritalin, etc) or just straight up GHB. many people cannot tolerate these medicines, making treatment even more difficult.

(keep in mind that i am writing this post from an american perspective; i know treatment is often more accessible in some ways in other countries, though i also know it can be worse/harder in different ways too.)

#ok to reblog #narcolepsy #invisible disability #sleep disorder #psa #i guess

[spoonie-isms]

#spoonie #chronic illness #narcolepsy #fibromyalgia #chronic pain #chronic fatigue #adhd #ehlers danlos syndrome

[newhologram]

The love/hate relationship with naptime as a disabled person could fuel the galaxy for millennia

#narcolepsy #fibromyalgia #spoonie #chronic illness #chronic fatigue #teku

[catsnuggie]

#my art #seepy cosy #pic of me irl #borzoi #silken windhound #dogblr #narcolepsy

[emocowboylvr]

hii! would you be interested in doing a fic or headcanons about carl x narcoleptic!reader? it's just i never see it anywhere and i really struggle sometimes. you don't have to --just asking, but thank you. <3

Hi!! Yes of course. To do this i definitely had to educate myself a little further due to the fact that I only know the super basic information about narcolepsy. I'm happy to learn more and to do this for you!! (Also sorry it took so long.)

Thank you for requesting this and feel free to give me feedback and send more requests if you like this one.

CARL GRIMES X NARCOLEPTIC READER

Narcolepsy is tough to have during the apocalypse.

It’s important to be constantly alert and awake, but that’s just not something you could do. You often felt drowsy, if not completely exhausted or drained, and the consistent moving, running, and fighting definitely didn’t help.

When Rick and Daryl, while out on a run, found you alone in the woods one day, they brought you back to Alexandria, where you met Carl.

Since Carl was your age, the two of you became friends very easily.

At first, it worried Carl that you were so tired during the day and he suspected that there were further problems, such as you not being able to fall asleep at Alexandria for some reason, or even the possibility of you being sick.

When you became closer, he asked questions, and you told him that you were narcoleptic, which led to a long discussion and a learning opportunity for him because he was uneducated on the topic.

Since the apocalypse started when he was so young, he is uneducated on a lot of topics concerning disorders or anything medical.

When you started dating, he tried to understand more about it, but at first was a little confused. He would recommend things that you know wouldn’t help, but you still thought it was cute that he was trying.

He never got annoyed when you’d fall asleep during the day, not even a little bit. He’d just use it as an excuse to hold you.

Carl is definitely a physical touch kind of guy, though he doesn’t like to show it in front of other people.

When he’s near the group he’ll do very subtle things, like put the side of his foot against yours or his pinky finger through your belt loop. If he’s feeling touchy that day he might hold your hand in front of everyone. But in the seclusion of the two of you he’s all over you.

But his favorite form of physical contact: getting away from everyone else and finding a comfortable spot for the two of you two lay down, where he would allow you to fall asleep on top of him, while he flips through the pages of a comic book he’s already read a thousand times.

The sound of his thumping heartbeat could be heard in one ear and the faint sound of his breathing could be heard in your other. You had always thought that it helped you sleep easier. You felt like it kept you asleep and from waking up during the night so often and you didn't have as many nightmares.

Maybe you just told yourself that because you liked when he held you.

Carl also loves to have “sleepovers”, although he hardly sleeps. He isn’t an insomniac or anything, but he often has a hard time falling asleep. He keeps himself up with his thoughts. But the weight of your body on his, and your soft skin that he would very gently caress in order to not wake you, would help him relax.

Sometimes you’d wake up after a nightmare, very visibly upset. Being narcoleptic, you had them often, and the apocalypse and your traumas from it really made it worse.

Your sudden stirring in bed would wake him from his sleep, and every time he would pull you closer to him, lazily tracing circles over your back or running his hands through your hair. He would place soft, loving kisses on your forehead or the bridge of your nose, and very groggily he’d mumble something like “Come here, it’s okay” or “Go back to sleep, I’ve got you.” Before he’d fall back asleep himself, probably before you did.

Of course, like every other capable member in Alexandria, you had to pitch in, which you didn’t mind, but you had night watch, and god was it hard to keep yourself from drifting off. It was only for half the night once a week, but still torture nonetheless. The moonlit sky and the faint wind in your ears almost lulled you to sleep. Your eyelids would feel like they weighed ten pounds and your body would just beg you to let it rest. But you fought it.

You’d force yourself to pace around or sing a song you used to love to keep yourself from falling into the drowsy temptation.

Sometimes, when Carl couldn’t sleep he’d come out there with you and talk to you, and every once in a while, you couldn’t help but lean on his shoulder and shut your eyes.

Every now and then he’d come out there to talk to you and he'd have to watch you struggle to keep yourself awake. He just couldn’t let you fight yourself to keep your eyes open so he’d sneak you inside really quickly, tuck you in, and take your shift for you, even though he’s already done his.

I really hope this is good enough, and honestly, like I said, I'm still learning about narcolepsy, so feel free to tell me anything I could do differently!!

#carl grimes #carl x reader #carl grimes x reader #carl grimes x y/n #carl grimes imagine #twd #carl grimes fanfiction #narcolepsy #narcoleptic #carl grimes x narcoleptic reader

[betmagic]

Random Headcanons

This time about Ace and his narcolepsy.

I’m no expert and while there’s probably a proper name for his sleep attacks , I’ve always called them drops in my head .

I’ve noticed that his narcolepsy never acts up during fights or dangerous/ serious situations.

In albasta he drops before smoker shows up. As for buggy … well comparative wise buggy isn’t much of threat to ace power wise.

So My headcanon is that Ace’s narcolepsy only acts up when he’s safe and is a very accurate indicator for when things are safe.

Why? Ace grew up exploring what’s probably one the most dangerous Forrest’s in the east blue( like the gaint animals are what you normally see in the grandline) and fighting adults in place like grey terminal. So maybe his bodies survival instincts developed as an unconscious self-defense mechanism that wards off his narcolepsy until it’s deemed safe. Even when he’s eating he stays awake and alert.—- because eating can induces a narcoleptic attack/ drop ,( yes I did do some research and it’s when he’s eating that we see Ace actually drops in the anime)

As to How the body knows when it’s safe or not , probably an unconscious use of observation haki. Again ace is basically a feral jungle child I wouldn’t be surprised if he unlocked a little bit of haki while in survival mode. If unlocked conquers haki at ten it might not be far of stretch he unconsciously unlocked and used observation haki.

It doesn’t take long for he’s brothers , specifically Sabo, to notice. He starts using it to gauge situations or whether they’re in the clear or not. Like after hunting a tiger or stealing from a bunch of thugs.

Sabo calls it the drop gauge.

The drop gauge is effective enough that his brothers (and later his crew) trust it implicitly.

Seriously they could be captured or and held at gun point by someone like a yanko ,warlord, or admiral but if Ace drops they instantly relax.

because if it’s safe enough that Ace dropped it probably means that whatever the situation is isn’t dangerous so there’s not a lot a lot to worry about.(and usually means that they can get out of the situation easily).

( whether or not ace aware that he’s used as a gauge is up to interpretation)

:::::::::::::::::::::

Bonus Scene: The spades also use the drop gauge especially for after a big fight or a rough storm, everyone keeps their guard up until Ace drops , meaning they’re in the clear , then they can relax.

Spade pirates just finished raiding a marine base or rival pirate crew.

Despite being over an hour since they’ve seen any enemies and probably a safe distance away The whole crew are on alert. Weapons ready and everyone is in position to defend or to get the ship ready to make a quick getaway.

Deuce who’s going over a map with A newer member of the crew.

Deuce: We can head towards this island here if they catch up us.

New crew members: um deuce do we really need to make another escape route? think we can relax now.

Deuce glancing at their captain ,who was talking with skull: no not yet.

Newer crew member: But it’s been an hour already and we haven’t seen anything. I think we’re pretty safe now.

Deuce, knowing that the other more senior members were keeping subtle eye on their captain turns back to the map in his hands:Not until the captain shows us it’s safe. Until then stay vigilant and be ready for anything.

And few minutes later is when the captain ‘shows’ it’s safe.

Ace drops mid conversation, skull catching him before he face plants on the deck.

None of the crew panic when their captain suddenly slumps over ,They’re all to used to the logia suddenly dropping out of nowhere, that they’d normally continue with what they were doing like nothing happened. Unless it it was after a battle.

Anytime Ace drops after a fight he’s always properly checked over.(there have been false drops before like when ace lost to much blood or that one time he got poisoned).

Deuce a little concerned ( because his captains an idiot who doesn’t tell him when he’s injured until he passes out from his wounds) :Well?

Skull looks up after evaluating the logia , who’s already starting to snore, giving the first mate a thumps up.

Deuce smiles and turns back to the rest of the crew. They were all waiting, had been the moment bone and ace stopped talking. they all look in direction waiting for the verdict.

Deuce:Alright captain dropped we’re all clear!

There’s a cheer as the crew finally relaxes.some even start making they’re way to retrieve the booze they managed to steal along with lots treasure.

Ace wakes up: Why is everyone Cheering?

If i got something wrong about narcolepsy and how it works please let me know.

#BETMAGIC #one piece #portgas d ace #headcanon #asl brothers #spade pirates #Sabo #monkey d. luffy #drop gauge #narcolepsy

[tmgstudios]

[long post, sorry, theres a tldr at the end but i really recommend reading the full thing if you can]

i really wish there was more like. narcolepsy awareness stuff in the world. that teaches people the actual symptoms and not just the stereotype. the amount of people i have talked to both online and in person about my experiences with narcolepsy who have been shocked at how much they related to my experiences is staggering. 

narcolepsy is so under-diagnosed and also very often misdiagnosed as something else because so many people, even within the medical field, don’t know the actual symptoms of narcolepsy (i am not pulling this out of my ass, my sleep specialist has told me this several times. its a real issue that sleep specialists continue to battle to this day). up until relatively recently, the past 5-10 years or so, narcolepsy and other similar sleep disorders weren’t even considered real by a lot of the medical field!!

narcolepsy is not “falls asleep at random” disorder. narcolepsy is a disorder of sleep cycles, causing the brain to enter rem sleep much quicker and more frequently then it should. 

this causes things like excessive daytime tiredness/chronic fatigue, extremely vivid dreams, sleep paralysis, hallucinations while waking up/falling asleep, and in the case of those with narcolepsy type-1, cataplexy (aka, while feeling intense emotions the brain will enter rem sleep while awake, causing muscles to lock up. this is where the “falls asleep at random” stereotype comes from, but the person experiencing it is not actually asleep, just unable to move their muscles. i can’t really speak more on this specific part of narcolepsy, since i have type-2, aka narcolepsy without cataplexy, this is just the basics i was told by my sleep doctors. EDIT: someone who experiences cataplexy has added their experiences in a reblog, if youd like to learn more please go take a look!!) [note: these are not the only symptoms of narcolepsy. not all people with narcolepsy will experience all of these symptoms, and everyone will experience them at different frequencies. for example, i only get sleep paralysis once every month or so, and my hallucinations tend to be limited to auditory] according to my sleep doctor, narcolepsy also has links to both adhd and chronic strep throat as a child (i have no idea how that last one works. but. thats what my doctor said and hey. she was right. i had chronic strep throat as a child and look at me now.) EDIT because i forgot to add: narcolepsy can not only co-exist with insomnia, but cause insomnia as well! excessive daytime tiredness --> more naps during the day --> harder time falling asleep at night

so yeah. i guess this is me doing awareness. if you relate to any of these symptoms, please talk to a sleep specialist if you’re able to. it might not be narcolepsy, but chances are it’s something, since none of these things are normal (to repeat, excessive daytime tiredness is not normal. that means there is something wrong). theres nothing wrong with asking a sleep specialist about narcolepsy and getting tested for it, even if you come back negative. 

my dms and askbox are open anytime for any kind of questions about narcolepsy, the diagnostic process, treatments, etc. while i am not a doctor, i have learned a lot through my own experiences, talking with my sleep specialist, and also my own research, since i’m currently studying to hopefully make narcolepsy research my career! whether you are questioning having narcolepsy or not, you are not bothering me with questions, i promise, you asking will probably make my day

TLDR; narcolepsy is a very misunderstood and underdiagnosed sleep disorder, and i highly recommend everyone learn about what it actually is and what the symptoms actually are, and if you relate to any of them, talk to a sleep specialist

[other narcoleptics feel free to add on to this post with your own experiences(and also to message me i always want to talk to other narcoleptics ASJDKHJ), and non-narcoleptics please please feel free to reblog! i really want to start spreading awareness for this disorder, since again, severally under/misdiagnosed and most of the world is still under the impression that the narcolepsy stereotype is true]

#GIRL HELP I KEEP FINDING TYPOS/GRAMMER ERRORS AFTER IT ALREADY HAS SO MANY REBLOGS #narcolepsy #narcoleptic #sleep disorder #chronic fatigue #disabilty awareness #narcolepsy awareness #disability #disabled #please reblog. i really dont want this to flop lol i am So Passionate about this stuff

[theecrybaby]

Bringing back my F*CK Chronic Illness stickers on a made to order basis so that I can keep making new ones every day, for everybody. They have a graphic relating to the illness and the outline is the color of the awareness ribbon. (I also have POTS and Diabetes, which I had manufactured)

polkadotphantom(.)com

#disability #disabled #chronic illness #eds #elhers danlos syndrome #narcolepsy #sleep apnea #Lyme disease #fibromyalgia #PCOS #PMDD #endometriosis

[crimson-kas]

Sometimes when you’re out of narcolepsy meds, sleep deprived, and PMSing, what you need is a good rant.

#own post #narcolepsy #notebooks #commonplace book #journal #rant #Hobonichi weeks notebook

[wishkhh]

chronically eepy and that's ok

#narcolepsy #chronic disability #idiopathic hypersomnia #invisible disability #disabled #disability #i'm diagnosed with narcolepsy! #invisible illness #neisvoid #sleep deprivation #sleep #sleepy #sleep disorder

[sleepy-spoonie]

tired of being in pain. tired of being nauseous from the pain. tired of flaring when I have stuff to do. tired of having a rare disease that doctors don't know how to treat. tired.

#chronic illness #spoonie #chronic pain #narcolepsy #disability #chiari malformation #occipital neuralgia

[heysawbones]

Let's Talk about Xyrem.

Xyrem ("oral sodium oxybate" or the sodium salt of gamma-hydroxybutyrate) is used in the treatment of narcolepsy, as well as (sometimes) idiopathic hypersomnia. Even if you don't have narcolepsy or any related conditions, you may find this run-down interesting. Here's why:

Gamma-hydroxybutyrate is roofies. That's right. Date rape drug. Right here.

The drug is so tightly controlled that there is one pharmacy in all of the United States that can fill it. Doctors must be approved and participate in a special program to even prescribe it.

Nobody really knows how it works in the treatment of narcolepsy.

I was prescribed Xyrem quite some time ago - at this point, nearly a year back. It took six-plus months of insurance, doctor's office, and central pharmacy wrangling to get the drug to my door. The whole time, I wondered: what should I expect from Xyrem? How do I know if it's working? How do I know if it's not working? What's it like? Lists of side effects and contraindications are readily available online, but I couldn't find a single detailed testimonial. This bothered me.

I've been on Xyrem for about a month and a half now. Here's what I can tell you about it.

You have to wake up at night to take a drug that's meant to improve your sleep. Everybody I explained this to found it funny. The standard practice is to split your dose in two - to take one half at bed, and the other half two to four hours later. If you're on Jazz Pharmaceuticals brand Xyrem and not the generic, they send you a tiny little alarm clock with a light on it to facilitate this. I have never needed it.

It takes 3 weeks to titrate up to the "full" dose, which is also the maximum dose. From there, you can titrate back down to a lower dose if you're experiencing unpleasant side effects. I'm in the process of doing this myself.

It doesn't necessarily knock you out. From the way the drug is described, one might get the impression that the moment it kicks in, you're going to be unconscious. I didn't find this to be the case. Your mileage may vary; I don't always fall asleep at all on the first dose, but it does at least get me sleepy enough to fall asleep on the second.

You have an unusual amount of agency in how you take Xyrem. This surprised me, especially given how tightly controlled possession of this drug is. For example, I metabolize Xyrem really fast. If I take it in two doses, I will sleep a maximum of 6 hours. I take the same amount of medicine and split it into three doses instead to compensate for how fast I metabolize it. That way, I'm more likely to sleep about 8 hours. This isn't just accepted, it's encouraged. You can even take a bigger dose first and a smaller one second, or vice-versa. The only hard and fast rule is: do not go over the max dose.

If you take it with alcohol, or within 4-6 hours of alcohol, it could kill you. A lot of drugs warn you not to take them with alcohol. I cannot stress enough that if you have ignored that warning in the past: do not ignore it here. Do not. Xyrem is a powerful CNS depressant. Alcohol is a CNS depressant. It really can kill you.

It works(?) Like many drugs that act on the brain, nobody is really sure how Xyrem works. It doesn't affect the most common (known) cause of narcolepsy (a lack of orexin/hypocretin). It's theorized that the drug acts on GABA receptors in a way that "consolidates" the fragmented sleep architecture of narcolepsy.

Narcolepsy can be thought of as an autoimmune disorder of sleep architecture. The sleep architecture of a narcoleptic is irregular, both within itself and from night to night. People with narcolepsy tend to have less of the deep sleep stages than they should. Narcoleptics also have a high percentage of stage 1 (light) and REM sleep. It's theorized that excessive REM occurs because it is of poor quality/does not serve its intended function, so the brain spams REM in an attempt to compensate. A diagnostic trait of narcolepsy is the ability to enter REM within 8 minutes of falling asleep - if sleep architecture is normal, this does not occur. While not all people with narcolepsy have cataplexy, cataplexy itself is actually REM intrusion into waking life. The narcoleptic brain is that screwed up about REM. Xyrem appears to regulate shifts between sleep stages and reduce the nightly percentage of REM sleep. I used to dream nightly. Subjectively, I do not dream at all on Xyrem.

The only difference between Xyrem and Xywav is salt. A full 9g dose of Xyrem contains 1,640mg of sodium. The maximum sodium intake recommended by the American Heart Association is 2,300mg. One of the few things I saw said about Xyrem prior to taking it was that it was disgustingly salty. It is very, very salty. I don't mind it, though. I've seen it said that Xywav tastes much worse, but I can't attest to that.

Subjective experience

Xyrem comes Priority Air Mail in a sizable cardboard box. An adult with ID must be present to sign for it. The first month's prescription comes with a light-up alarm clock. This kit and all subsequent kits come with:

The medicine, in however many bottles are required

A number of syringes, marked with common doses

A number of pill bottles

You put water in the pill bottles. They tell you to put about 60ml, but as far as I can tell, this is to make the saltiness tolerable. I made a little game of this - I try to put the same amount of water in each pill bottle, gauged by nothing but sound. I've gotten pretty good at this. I have my nightly dose split 3 ways. After adding the drug to the water, I close each bottle and swirl it a bit. I don't know if this actually does anything.

Xyrem works best if you're already tired when you take it. Hilariously, I have ADHD in addition to narcolepsy. Nighttime sleepiness isn't a thing I Do naturally. Consequently, the first dose of Xyrem only puts me to sleep about half the time, and it takes a while even when it does. I know myself well enough to know that if I wait until I'm actually "sleep for the night" tired to take it, I might be up until 3 or 4 AM. Instead, I take the first dose at around 11 PM. Even if it doesn't put me to sleep, it DOES make me sleepy enough that the dose I take 2-3 hours later will definitely work.

I was very careful to set alarms the first week or so of taking Xyrem, but I've never needed them. For reasons that are unclear to me, I always wake up when Xyrem is fully metabolized. Without more Xyrem, there is no urge to go back to sleep. When I've run out of doses for the night, I'm up for the rest of the day. There's no napping.

Some people have pretty nasty side effects with Xyrem. Headache and nausea are the most common. I had both of those, once each. The headache lasted all day but was otherwise unremarkable; the nausea was genuinely awful. The only persistent side effect I have, is tremors.

While I was waiting for Xyrem, my sleep specialist put me on Adderall. Nobody would prescribe this for ADHD, but you'll do it for narcolepsy? Sure, whatever I'll take it. I mention this because I thought it was possible that Adderall was causing tremors. I ran a little experiment: I took Xyrem but no Adderall one day and still had tremors. I took Adderall, but no Xyrem the night before, and the tremors subsided. It's definitely the Xyrem. While this is a known possible side effect, I can't find any information on how or why Xyrem, a CNS depressant, would cause something that seems very much the opposite of a depressed central nervous system. I am currently titrating back down from the max dose in an attempt to see if a lower dose will mitigate the tremors. If that doesn't work, I'm not... entirely sure what to do. Xyrem is a weird drug. It's strange not to dream at all; it's strange to wake up twice a night and still get better sleep than I ever have. Executive function has improved considerably, given that both neurological issues that cause executive dysfunction are being treated. Still: the tremors are, I will not lie, distressing. Not as bad as they were on Wellbutrin, which I was forced to discontinue! But - disruptive and distressing, nonetheless. I'm hoping that the tremors will stop eventually, or that dose adjustment will help.

Overall: would recommend if you have narcolepsy. You wouldn't think that a drug that obligates you to wake up multiple times a night could improve your sleep! Well, bucko, if your sleep architecture is already so disordered that you have narcolepsy: it can.

#I said I'd do a writeup on xyrem and here it is #took a long time because xyrem is weird #xyrem #narcolepsy #idiopathic hypersomnia #xywav