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#idiopathic Hypersomnia
rosesandthorns44 · 5 months
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That chronic illness feeling where you don't want to die soon, but the idea of spending another 60 or so years in this body makes you want to scream.
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g0refield · 22 days
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a thing with being chronically ill is i don’t know what’s a symptom anymore. i learned last year it’s not normal to pass out from standing still, i learned recently it’s not normal to get dizzy from wearing a beanie. i don’t know what heart palpitations feel like because i have them all the time. i don’t notice my own pain tics. i haven’t felt not tired since i was a child. i have no idea what it’s like to be 100% able bodied and neurotypical etc because i’ve never tried, so i have nothing to compare with.
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wishkhh · 7 months
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chronically eepy and that's ok
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heysawbones · 4 months
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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.
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starlight-nocte · 10 months
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when i think of sleeping,
i think of dying.
i think of oblivion,
of drowning in the Nile
after baking brown in the 
desert sun…
when i think of sleeping,
i am afraid
because sleep has been 
such a part of me,
has taken too much–
more than its due.
i have lost centuries to this thing,
this disease of
shut-eyed nothingness. 
in truth,
i don’t think it’s possible to be 
safe from sleep.
because this kind of sleep
sticks to your bones,
mouths at the ridges of your throat.
this kind of sleep
eats you alive.
 - Safe From Sleep, after Iman Mersal
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absentlyabbie · 10 months
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still shaking my head about that time my doctor and i were discussing how my Exhausted All the Fucking Time chronic illness had been getting gradually worse and i never had energy to do things
and he asked me "have you considered exercising more? that can increase energy"
to which i replied deadass staring him in the face "cool, sounds great, love to, but hey, doc. one question: with what energy do i do that"
and he just cringe-shrugged and changed the subject
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born to be an eepy sleeper
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eleftherian · 6 months
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*stops the movie in the middle to take a nap*
*stops dinner in the middle to take a nap*
*stops showering in the middle to take a nap*
*stops the chapter in the middle to take a nap*
*stops talking in the middle to tak
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haberdashing · 9 months
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upsides to having idiopathic hypersomnia: i can tell people that a doctor diagnosed me with a case of the sleepytireds and i am, essentially, telling the truth
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fun with narcolepsy
If you're not narcoleptic but you're curious how it feels, this is a summary of the kind of attack I had today. It's not always like this, but this is a fairly normal example.
this is tiredness/fatigue rather than sleepiness but i cba to check whether someone's put out a better sleepiness scale than the fucking epworth in the last few years
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Imagine, metaphorically speaking, that you're in that blue-green bit at the bottom when you suddenly notice an amber-coloured flash out of the corner of your eye. It does not approach; it remains in the distance, like an amateur paparazzo trying to scope out a potential celebrity subject. You're relatively secure in your greenness, though, so maybe it'll be fine.
Spoiler: it is not fine.
At first, you are still physically capable of behaving as though you're near the bottom of the chart; you're just still seeing that threatening glow in the distance. Then, all of a sudden, a switch flips to black.
Maybe some little glimmers of deep red. Mostly black.
Time passes. It could be seconds or hours. The only emotion you have is somewhere in the range of fear or embarrassment at having fallen asleep in public again, but you're too exhausted to actually process that feeling. You may or may not be hallucinating at this point.
The switch flips unceremoniously back, and you're thrown straight to the greens without any time spent ascending through orange or yellow. Maybe somebody noticed; maybe they didn't.
Your notes look like a cat walked over your keyboard.
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xxhypersomnia · 6 months
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Today and everyday, I am representing those with the rare disorder - Idiopathic Hypersomnia.
IH causes one to be very sleepy during the day regardless of the amount of sleep received. Unfortunately, we have yet to figure out what causes IH or how to treat it. I have participated in numerous medical trials, taken trial medications in every form imaginable, and I have even been injured by medical tests gone wrong (induced sleep paralysis = broken toe). I have spent countless weekends in a hospital bed, forced to stay awake for 25+ hours in order to conduct testing so perhaps others can find relief.
How does it affect my life?
I’m exhausted all the time. I honestly don’t know what “being refreshed” feels like. I haven’t felt that since I was a child. I sometimes sleep whole days away and it affects my relationships. I can’t drink with friends because the alcohol will make me fall asleep at the bar. I have been bruised from too much time in my bed or couch. It makes it extremely hard to stay motivated at the gym. I have fallen asleep on a treadmill and while recieving tattoos. Worst of all, it affects my memory (along with another neurological disorder). Sleep is so important to our brains, it’s a time for it to recover. And my particular version of IH causes my brain to float in light sleep, hardly ever reaching REM. So my brain is never healing. I forget things, I get anxious that I’m forgetting things, and I have a hard time formulating words that I want. It hurts to know I’m smart but can’t always present myself that way.
I could go on and on about the affects it has on me, but honestly the hardest part is people who don’t think you have a disorder. “I’m tired a lot too!”
I will always and forever support invisible disabilities. It is a backwards way of thinking to think disability means wheelchair, or some other physical ailment. Just because you can’t see a disorder, doesn’t mean it’s any less real. “You’re too young to be forgetting things..” that’s one I hear A LOT. Yea, thanks for the reminder than I’m on my way to early memory loss way before my time. I can’t even remember vacations with my family. Memories that I know I love but can’t reach.
Be kind, be cautious with your words, be supportive even if you don’t know the whole story, don’t deny someone else’s reality just because it’s different than your own.
To all my loves with narcolepsy or any other invisible disability, I see you ♥️
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rosesandthorns44 · 6 months
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I can't help but feel like it is somehow my fault any time I have a pain flare up.
I drive myself bonkers trying to figure out the cause:
Not exercising enough?
Inadequate nutrition?
IDK. Sitting wrong???
I've had chronic pain since the age of 7. That's over 20 years now. I have a progressive illness. Logically, I know none of this is my fault. My brain still tells me it is.
Possibly has something to do with my mom peppering me with questions if I mention feeling worse than usual.
"Have you been eating enough protein?"
"Are you doing your PT exercises?"
"Going for walks?"
"How much sugar are you eating? You know that's bad for inflammation."
For some reason, she's also always telling me to eat blueberries???
I know she means well. I know it must be hard to see her kid in pain. She's not blaming me for being sick. She probably just wishes there was some quick fix to make it better.
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g0refield · 3 months
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being a person who sleeps a lot and can fall asleep in pretty much any situation makes you super vulnerable, and it’s terrifying. even just being very tired/sleepy without actually falling asleep is a very vulnerable position. be nice to sleepy people.
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tanzdoesthings · 11 months
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wake me up (wake me up inside)
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kittendoomed · 5 months
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Hypersomnia made me, a feline therian, sleep as much as my cat
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absentlyabbie · 5 months
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i am so tired it hurts
i am so tired i can only feel it as physical pain
every day and at all times i am a level of exhausted that is akin to walking around and doing chores and a job and grocery shopping and personal maintenance and hobbies all while wearing three layers of weighted lead-lined blankets soaked in chilled water and it's never easier than that
and on the special, awful days the tiredness feels as though i have been stripped raw and bloody with sandpaper down to sinew and bone and left exposed to dry, gritty desert air, at every inch, with dust in my mouth and eyes and loose shards of glass rattling in my skull
i am so tired it hurts, it hurts, it's painful
couch it in poetic prose and analogy and it's so easy to squint and call it a costume of hyperbole, a pantomime of overemphasized exaggeration, but it's as real as the persistent little crick in my neck and the ache of my knees and the tickling nag of an oncoming sneeze
i am
so tired
it
hurts
and if you are too, you are not okay, and it's time to stop gritting your teeth and knuckling the exhaustion-tears out of your gritty eyes and blaming it on yourself for not somehow overcoming the building someone collapsed on you and insisted you should wear like a cape
this isn't how it should be, this isn't how it is for everyone else, it's not the same thing the rest of humanity goes through but somehow with more grace and success and productivity and less difficulty than you
if you are so tired that it hurts, then you are in pain, the oldest signal in human history that something is wrong, and it's time to make room for your own emergency to disrupt the performance of "fine"
this is too much to ask of you, or of anyone
aren't you tired of being so tired it hurts?
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