#idiopathic

[monicafting]

#scoliosis #adolescent #idiopathic

[under-same-sky]

There is nothing wrong with my foot via xray and mri.... but it feels like I broke the heel 🤦🏻‍♀️

Story of my life....

#fibromyalgia #myofascal pain #idiopathic

[wmhd]

The relationship between mental well-being and symptoms of mental health condition.

#mental disorders #schizophrenia #depressive disorders #bipolar disorder #Anxiety disorders #Eating disorders #Autism spectrum disorders #Attention-deficit #Hyperactivity disorder #conduct disorder #developmental disorder #idiopathic #Mental illnesses #world mental health report #mental health research #DALYs #Symptoms #mental wellbeing #mental wealth

[rosesandthorns44]

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.

#i don't know if i can take another 60 years of this #chronic illness #idiopathic hypersomnia #gastroparesis #ehlers danlos syndrome #bpd #chronic pain #borderline personality disorder #dysautonomia #p.o.t.s #i hate this #im just having a rough week with my mood #I'll bounce back #tired

[g0refield]

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.

#chronic illness #disability #idiopathic hypersomnia #pots #potsie #hypermobile ehlers danlos #ehlers danlos zebra #ehlers danlos syndrome #adhd #neurodivergent #sleepy tired disorder #chronic pain

[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

[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

[thicc-mothman]

its actually super fucking lonely not knowing anyone else with the same illness i have. ive only met one other person with it irl and were not friends we dont talk. i havent met anyone online with it (to my knowledge) and its so so fuckin ostracizing. ive got my fair share of supportive friends who can understand what i go through but no one who truly gets it. its exhausting.

#:( #vent post #chronically ill #chronic illness #chronic pain #chronic disability #ra #jra #jia #rheumatoid arthritis #juvenile rheumatoid arthritis #juvenile idiopathic arthritis #actually disabled #disabled #disability #disabilities #cane user

[starlight-nocte]

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

#poetry #poem #poems #sleep #sleep disorder #excessive daytime sleepiness #sleepy bitch disease #idiopathic hypersomnia #narcolepsy #spilled ink #spilled words #spilled poetry #spilled poem #spilled writing #iman mersal

[problem-project]

It's official!!! I don't have cancer!!! My biopsy came back negative! Hooray 🥳🎉

#subungual melanoma biopsy #fingernail biopsy #biopsy #biopsy results #actually disabled #cripplepunk #chronic illness #chronic pain #disabled #disabled community #disability #chronic fatigue #idiopathic intracranial hypertension

[under-same-sky]

The graphics is peakflow chart.

What hight and age average peak flow would be in health men and women.

This graphic was hella perspective today.

In 2020 when i become critical and well we didnt know what the problem was i never used a peakflow so i didn't know nor have data to compare

So my hight and age avg is 430 🔵 if i was a normal female 5ft4

Post dilation i blew 520 in march 2022 was my last surgery

Currently my number is below this chart at 280 the red dot 🔴

Thats hella perspective on what normal and what my range looks like.

I have these surgeries to re open my airway from scar tissue every 6-9mths for the rest of my life.

Finding grace means cancling workouts thatbi simply can not do even after modifications.

Finding grace is cancling plans.

Finding grace is mid day names because my body is exhausted from trying to breath thru the equivalent of a straw.

Finding grace is not laughing and not speaking my mind because it makes me short of breath.

The hard part is how do you live life to the fullest when you have to not laugh, minimize speaking and doing.

How to you mange chronic pain and fatigue and stress when JUST BREATH isn't a fucking option.

Mybown mortality feels like a chess clock where the surgeon opens my air way hit the clock and its my turn to run play love grow and live as much as i can in 6mths until i tap the chess clock for my next surgery.

Surgery is scary. Especially full general anesthesia. Where they blow my lungs up like a balloon and do is much work in my air way as possible before my blood oxygen drops pull all the tools out to blow me back up with air and then work fast again.

This chess clock feeling is hard. Its scary, it sucks. But its what i have to live with. But hey at least im living

#chronic illness #treacheal dilation #treacheal stenosis #cant breathe #fibromyalgia #idiopathic #hate my body

[flamingo--ing]

TWENTY FUCKING FIVE

🧑‍🦽💨🩷🎁🎉🔮

bonus:

(i use They/them pronouns)

#the body #pics of the whole event and my friends in seperate post #disabled #cripple #cripplepunk #wheelchair #wheelchair user #ambulatory wheelchair user #mobility aid #arthritis #JIA #juvenile idiopathic arthritis #fibromyalgia #POTS #trans #nonbinary

[wmhd]

The global prevalence of mental disorders in 2019.

#DALYs #mental disorders #schizophrenia #depressive disorders #bipolar disorder #Anxiety disorders #Eating disorders #Autism spectrum disorders #Attention-deficit #Hyperactivity disorder #conduct disorder #developmental disorder #idiopathic #Mental illnesses #world mental health report #mental health research

[rosesandthorns44]

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.

#painsomnia #chronic illness #ehlers danlos syndrome #p.o.t.s #gastroparesis #chronic pain #dysautonomia #idiopathic hypersomnia #sleepy bitch disease

[g0refield]

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.

#hypersomnia #idiopathic hypersomnia #narcolepsy #fatigue #chronic illness

[eleftherian]

*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

#true story #just paused pet sematary bloodlines to nap for 30 minutes! #god this is getting old #my posts #ih tag #sleepy bitch disease #idiopathic hypersomnia #narcolepsy