#and 'idiopathic' means 'we don't know the cause'

[haberdashing]

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

[tj-crochets]

This pattern is by CholyKnight and it comes with patterns for four different sizes of poison apples (this one is the smallest)

I tend to forget my follower count is not static and that a lot of y'all weren't here for the frantic month of monster making last year, so explanation! For pretty much the first time in my life I am living in a mostly-walkable neighborhood with a lot of kids in it, so I get a lot of trick-or-treaters on Halloween. As someone with pretty severe food allergies* I want to give kids with allergies or other food restrictions a non-food option (also I enjoy being the weird cryptid of the neighborhood) so I hand out monster plushies for Halloween! This year I am branching out a little and not just doing monsters *I always feel weird saying I have severe food allergies because I don't have the "instant anaphylaxis" kind of food allergies? But my allergies can and have landed me in the hospital more than once because they interact very badly with my heart issues, so I guess they count as severe? Not really relevant here I just always feel like there's a caveat lol

A poison apple plushie for the Halloween plushie stash!

[nark-my-words]

this is very angry, but i really just want to yell somewhere outside of just the narcolepsy tags bc yknow I'm physically disabled!!! it sucks!!!!

another issue with narcolepsy!!! is that the media and mainstream depictions of it are so fucking insultingly simple and do NOTHING to represent the devastation it can cause and how physically disabling it is.

Sleep is something fundamental to health. if your sleep is disordered and impaired and you aren't getting enough good restorative sleep, you are going to suffer long term health impacts and horrible quality of life. you have to be a fucking ambassador with an encyclopedic knowledge of how it's not the funny "fall asleep when emotional disorder" (that's called cataplexy and it isn't falling asleep, it's muscle weakness and a loss of muscle control. it's also only in type 1 narcolepsy) or the "falls asleep anywhere and you're refreshed :) disorder" (for many people, it's not being "refreshed", it's just Not Being As Tired and it doesn't last very long) or the simple "it means you're sleepy all the time"

it's often severe sleep cycle disturbances during both night AND day and feeling tired all. the. time. because your brain can't properly regulate sleep cycles so you can't get enough deep sleep. ever.

imagine never getting enough sleep fucking ever. It doesn't matter how MUCH you sleep, because your brain can't moderate your sleep cycles properly and you can't go into the stages of sleep that your brain and body need. imagine the impact that would have on your brain and body. imagine your own brain literally not physically fucking working right. imagine the full body, unrelenting fatigue.

it's a severe neurological and neuroimmune (at least N1 usually is neuroautoimmune) disorder and it's actually severely underdiagnosed because not enough people have access to the specific kind of sleep studies they (insurance companies tbh) require to diagnosis it

when are people going to realize we are fucking suffering and stop overwhelmingly handwaving or treating narcolepsy like a punchline or funny quirk?

everyone who thinks it's cute or quirky actively contributes to how horribly we are treated and how little we are taken seriously unless we sit there with essays that spoonfeed how critical proper sleep cycling is to longterm health and quality of life.

even then, why should anyone care about us physically? all that matters is that we're considered productive under capitalism. doesn't matter what severe health issues you continue to stack up

stimulants and wakefulness promoting agents are the first line treatment and they do fucking NOTHING to tackle the sleep cycle issues at night. in fact, they often make insomnia even worse. nobody gives a shit about narcoleptics' physical health as long as they're capable of being productive and "awake" and it's utterly repulsive.

(This all also applies a lot to idiopathic hypersonmnia, too, which shares a lot of overlap w narcolepsy type 2)

also ppl w [insert mental illness or neurodevelopmental disorder here] who want to compare it to a neurological sleep disorder: don't you even fucking Start. you know full well I'm talking about different things.

[zealouscanonindeer]

Pregnancy brain.

Synopsis: Aspen suffers from a different sort of pregnancy brain.

Aspen groaned as she tugged her pants up her hips, the material unwilling to move in spite her ferocious force. She resigned, panting as she caught her breath, leaning against her locker before begrudgingly opening it and pulling out Ethan's scrub pants.

She suddenly felt teary eyed, staring down at herself in her husband's scrubs. No matter how much medicine you learn, this feeling would be impossible to evade.

She knew that her body was growing a new life, bringing happiness in their life and while she was grateful she also couldn't escape the weighing scale without feeling a little remorseful.

Already annoyed, she headed to the diagnostic team office. Passing through the corridor she caught a intern late on his hourly reports and for the first time she turned into her namesake: Dr Ramsey.

Cheeks flushing and chest heaving, she slammed open the door to find none other than the man who caused her current situation. She was equally willing but at that point she didn't need logic and reason. Irrational irritation building up inside her, she plopped herself heavily onto the chair.

"Tobias isn't in today, so i thought I'd help out. "

"Thank you. " She responded, her deadpan tone catching his attention.

"Are you in any pain? "

"Just read the cases, Ethan. "

Not pushing her further he picked up the first file, eyebrows furrowing as he highlighted the symptoms.

" 24 year old male, recent development of peripheral neuropathy, nephropathy... and cataract?... Cataract so early.. "

"Ethan.. it's sorbitol dulcitol retention in the tissues. Why are you being so slow? " She snapped, annoyed that he even had to ask her.

"Of course. "

He simply raised his eyebrow, impressed at how fast she diagnosed.

"Next. Ethan, we don't have all day. " She pouted, her eyes closing, waiting for him to continue. He bit back his laughter, knowing it wouldn't end well for him.

" Next is patient with bruises. Low platelet levels. Previous physician was unable to diagnose the cause. "

"Cause their is none. What an idiot! Classic thrombocytopenic purpura, commonly idiopathic. Just start blood transfusion therapy. "

Ethan paused, surprised by his wife's unusual outburst. He had never seen her so... well like him.

" Male individual, 7 , dilated cardiac myopathy, skeletal myopathy and neutropenia. "

Before he could finish his sentence.

"Barths syndrome. "

" 2 year old baby, with vision loss, startle response exaggerated and milestone regression with 3 recent seizures. "

"GM2 Gangliosidosis. "

" Also known as Tay - Sachs disease. "

"Refer to pediatrician, I mean Sienna obviously for further treatment. "

"Hmm, I wonder how we'll break it to them. "

"What? "

"That there is no cure and the life expectancy is no more than a few years. "

"Oh." Her eyes snapped up to meet his gaze, her ire vapourizing as she cradled her 7 month baby bump lovingly, sadness descending in her eyes.

"Hey, it's ok. "

He reached out to her, pulling her onto the sofa beside him as she rested her head against his shoulder, a tear running down her cheek. He quickly wiped it away.

"These pregnancy hormones are really getting to me. " She chuckled, willing her eyes, staring up at him as best she could without moving from her comfortable position.

"That was really something by the way. Your diagnosis skills are off the charts. "

"I have two brains, so figures. " She shrugged as Ethan laughed at her words.

"Then I'm convinced our daughter is a genius."

"Give me some credit, I didn't see you coming up with anything right now. My shoulders feel like they'll break from carrying this team singlehandedly. "

"If our daughter has your humility....

"Don't even think about finishing that sentence. "

She felt a kick against her abdomen, her hands flying to her belly, she hummed, pulling her legs up, she cuddled against her husband as they sat together in companionable silence.

Ethan placed a kiss on her head, hand covering hers, resting on her belly. His perfect little family, his home. He smiled as his heart burst with love. So much love.

[normal-with-adhd-is-a-joke]

I know we meme on the internet that cats are assholes but as I recently saw someone using that meme-gone-wild to defend a person surrendering an aggressive cat to a shelter without the owner's permission, I feel a clarification needs to be made.

True "meanness", aggressive behavior with no identifiable source, is rare in cats.

This type of behavior, called idiopathic aggression, is often extreme and may result in euthanasia. The "meanness" we see in most cats is not idiopathic and is the result of some kind of stressor or stimulation in the environment. All of these types of aggression are listed in detail on the ASPCA's website but I wanted to cover them briefly here.

Fearful aggression is the most obvious. If you corner a cat, hold them while a loud noise is happening, etc you're going to get scratched. Back off and let the cat hide and calm down. If your cat is totally freaked out by something necessary like vet visits a lot of vets will be happy to provide you with a mild sedative like gabapentin.

Territorial aggression is another obvious one. If a new cat or other pet or a new human steps on a cat's turf it can cause a spike in aggression. Stray or feral cats passing near the outside of the pet cat's home can trigger this as well.

Play aggression is one that you'll know if you're a cat owner, but might not if you've never had a cat. Cats get really excited with their toys, so if you're playing with them with your hand or foot, be prepared to get beaten up. Some cats will also pounce on moving body parts when they're in play mode.

Redirected aggression is also a less known about one. A cat who's tracking a prey item or potential threat outside the home via a window, or playing with a toy inside the home, might instinctively react aggressively to movement or touch because they're in an excited state. If a cat is tense and focused, it's best to not disturb them.

Petting-induced aggression is a big one that people cite as a reason cats are assholes. In reality, the cat is frustrated by the repeated movement, it's even hypothesized to become painful over time. Try varying your petting motions and spots, and maybe mix in some scratches.

Pain-induced aggression is sadly common and often overlooked as normal cat behavior. If a cat always reacts badly when a certain spot is touched, that's a reason for a vet visit. There are plenty of pain management option available to keep cats with chronic pain happy, healthy, and not biting their owners.

Cats are sensitive animals. They're predators, but also prey, which makes them both powerful and anxious. Getting told "you're annoying me, fuck off!" is a normal part of cat ownership and the best way to avoid injury is to learn to read scared and aggressive cat body language. Cats aren't rude, you just don't speak their language so you don't understand when they clearly state their boundaries.

[brckensocietyarch]

so i've decided to make this post as like a long explanation for what's going on with me at the moment. those who've known me a while might know bits and pieces or all of it but i'm sure many people don't know. now, don't feel like you have to read this, but if you want to have some understanding about what's going on with me this'll explain it. (if you ask what's wrong with me, etc, I'll probably link you to this post so i don't have to explain it over and over again. reminder: this is a long post.

so, for starters before i get to the big issue, before it started playing up again i was dealing with random fatigue and drops in blood pressure, so i did a halter monitor and am finding out next week if it's post-spicy cough pots or something else. (this was why i was worn down at the start of the year and still had some fatigue before this.)

now, backstory, back in 2015 i was diagnosed with a disorder called iih (intracranial idiopathic hypertension), a brain disorder that means i overproduce cerebral spinal fluid, (along with a lot of other things - it can legit mimic a brain tumor- fun). at that time i was put on a medication called diamox which pretty much helped keep the iih down to a point, (i had to up it multiple times because for some reason my iih liked getting worse at random times). in 2020 we worked out one of the reasons for the random increase, tss (transverse sinus stenosis) meaning the big veins at the back of my head had a weak spot which caused fluid to build up which then in turn caused the vein to be crushed shut. by this time diamox had fucked with my body a lot (it's likely the cause of my fibro and is the reason my teeth have turned to shit). so, to fix the issue i was given a stent to help with the tss. this was meant to be my hail mary and make life easier. a side note: iih has caused be to have chronic migraines(which i'm now taking injections for), a chronic daily headache that doesn't respond to treatment and a slew of other things. if left untreated? it can cause blindness and even death (fun). the reason i got diagnosed in 2015 was because i went to an eye doctor with vision issues and it turned out my optic was swelling. so, fast forward to last year, we found out that my pressure where going up, again, and causing the vein my stent was in to occlude(close) around the stent, we also found that the second transverse vein was also closing. now, a fun little thing that can help for a very short period is having an lp (lumbar puncture), i've had many (and many have failed, sigh), last year they got 40ml from my back and thankfully the vein reopened. we know that I'll need to extend my stent and get one in the other vein but there are complications that we need to fix before i can get that surgery (which after a year have only gotten worse, not better). they knew we had to work something out but i'm a VERY complicated case. so for the past year it's kind of just been "we'll monitor and go from there". welp, the monitoring appointments i had this month showed my optic nerve is swelling again and the pressure is up. so, i've got to do the one thing i didn't want to do, return to taking diamox. to list a few of the side effects i'm already getting after three days of taking them: extreme fatigue, tingling in my feet, dehydration and making carbonated beverages taste like drinking literal acid... (that's legit just the starter ones). so yeah, fun.... that's what i've been dealing with (and that's just based around this disorder, not all my other bullshit, lol.)

[little-pissbaby]

we're whining again! tw: semi-graphic descriptions of bodily functions, medical trauma/PTSD

I have had three appointments this week, one of which I had to cancel on the way there because a NASTY car accident happened in front of my partner and I and it backed up traffic for several miles. my appointment time would've over by the time I got to the hospital.

unfortunately, the one that was cancelled was supposed to be my EEG lab appointment to test for epilepsy. I had to reschedule it for mid-october instead and now I have to message my neurologist because I'm having worsening symptoms of the other thing he's treating me for: idiopathic intracranial hypertension. I don't know if worsening symptoms means I'll need another brain MRI to make sure I still don't have a brain tumor or if we're gonna wait on the results of both the in-office and ambulatory EEGs before we start looking in my head again. either way, I may be looking at brain surgery, either to remove a mass or to place a shunt to drain the excess fluid off my brain since diuretics aren't working well enough on their own.

speaking of surgeries, the other two appointments I had were with my orthopedist yesterday about my carpal tunnel and my urogynecologist today about the potential need for both a suprapubic catheter and bowel diversion (an ostomy bag without any removal of organs).

the ortho appointment was pretty straightforward, it's the only surgery I'll need that isn't weird for my age or anything, it's just a super routine procedure. first we're getting an EMG/NCS done to determine if the cause of my carpal tunnel is nerve damage or inflammation, and if it's just inflammation I can get cortisone shots in my wrists and (hopefully) avoid surgery.

the urogyne, however, is where things get more serious. I have a neurogenic bladder, which was diagnosed in February and still doesn't actually have a known cause, although I am a neurological disaster from head to toe so it could be one of any number of things. the issue with the neurogenic bladder is once I knew I had that, I also knew based on symptoms that I have a neurogenic colon as well. my urogyne agreed with me on that and asserted that they do usually go hand-in-hand, especially in patients with both Ehlers-Danlos syndrome and significant neurological deficits in other areas. I have piss poor (pun intended) fine motor skills and they're only gonna get worse from here so CIC isn't sustainable and I will be having an ICD fitted, so no sacral nerve stimulator either. I was referred to a urological surgeon, a colorectal surgeon, and a neurourologist just for his expert insight.

I will also be letting my endometriosis specialist and my GI know about the planned course of action regarding surgery so they can let me know their thoughts and if they have any questions they think I should ask at the surgical consultations.

I hate how much time I take up. a friend of mine has wanted to come down and visit for months now, and now I have to plan that around not just appointments, but potentially major surgeries too. I'd hate for him to get down here only for him to get to see the hospital I have most of my doctor's appointments at and nothing else. I hate that I can't be the one to travel up for a week instead because I'd have to lug around medications and equipment. I just wish I could be less of a burden for once. I miss travelling so much.

anyway. that's all I've got for now. more whining to come, I'm sure.

goodnight besties <3

[journalofsorts2]

okay i don't actually remember a lot from when i had iih (idiopathic intercranial hypertension, basically too much spinal fluid), cause it's like a brain issue and also depression and blah blah perfect storm for memory issues. but i do remember how i felt. not specifically the pain, but the way the mental fog felt. and i've been feeling eeriely similarly lately. and my head hurts a lot lately. and i know it's probably not iih again because that was like a once in a lifetime thing given the circumstances. but i really feel like somethings wrong. another time i had this type of mental fog is when i was in the psych ward and was given fluoxetine. and then i got off it cause it fucked me up, and we did testing to see what antidepressant would work with my body chemistry and it turns out fluoxetine was a big no no. idk, all i know is this fog usually doesn't mean good. but hey idk i've been wrong before

[eatember]

An example would be idiopathic hypersomnia. It's a general diagnosis encompassing a variety of presentations. It's diagnosed when someone has some kind of sleep disorder going on that meets criteria for hypersomnia, but we don't know what causes it, so within the community you see a variety of slightly different symptoms. Probably because there's a variety of causes creating slightly different kinds of idiopathic hypersomnia.

For some people, it's similar to narcolepsy with cataplexy in the sense that it can knock you out. For me, it different from narcolepsy with cataplexy because I get warning symptoms ahead of actually being knocked out- well enough ahead that I'm still medically allowed to drive, which people with uncontrolled cataplexy are not allowed to do.

IH can be comorbid with a lot of things. For example it can be comorbid with POTS, which can prevent people from walking distances. There are other autoimmune disorders it can be comorbid with, but I don't know them all. For some people the immune system attacks the brain and we think that's what causes some people's IH. But any autoimmune disorder with the capacity to attack the body like that could cause it.

I hope I don't sound like I'm trying to argue with you, I genuinely don't disagree. The internet can be a hostile place, I just wanted to clear up that I wasn't trying to make a bad faith argument. I know people tend to throw "what about disabled people?" into an argument like a dodgeball even when they don't understand us lol. You were probably getting a lot of that, I didn't mean to make it look like I was dog-piling.

I think all busses and trains should be free and all parking should cost money and I’m not joking

[tj-crochets]

Hey y’all! It occurred to me this morning I should probably be wearing a medical alert bracelet, given that I am A. very allergic to some things, including some medications B. EXTREMELY contraindicated for other common meds (not allergic, they just interact very very badly with my health problems) C. have some medical issues that could require emergency treatment and D. every single one of my medical issues *could* make me pass out So, uh, do any of you have any advice about medical alert bracelets? What to put on them, what not to put on them, brand/style/material recommendations, etc? Also, any advice on those epipen inside/inhaler inside keychain things to put on purses/backpacks?

[theivorybilledwoodpecker]

A 14-year-old girl in Tucson, Arizona, was denied refill of a lifesaving drug—methotrexate (MTX)—she had been taking for years over fears that she would use the medication for abortion purposes. For years, Emma Thompson has been relying on low, weekly doses of MTX to treat her juvenile idiopathic arthritis, a form of the condition in children that can cause serious complications, including growth problems and joint damage, which MTX slows down.

But at higher doses, MTX can be used to end ectopic pregnancies, where a fertilized egg implants outside the uterus.

This is why the girl's doctor, Deborah Jane Power, thinks Thompson was denied her prescribed medication, only three days after Arizona's new abortion law had taken into effect." We think she was denied by the pharmacist because, three days before, a judge in Pima County, Arizona, lifted the injunction on a law from 1864 when Arizona was a territory, which bans all abortions unless the mother is dying and makes it a crime to perform/assist," Power told Newsweek. "The pharmacist said the patient is 14, so we feel she was worried the patient could be pregnant and using methotrexate for abortion purposes."

Forced birthers, you forfeit the right to be considered human. I don't give a fuck if you didn't mean for this to happen. You knew it would because you saw what happened everywhere abortion bans were enacted. When I say, "Go to hell," I mean it in the biblical sense. Be separated from your God and every good thing for all eternity. There is nothing good in sick little fucks who hurt children.

Edit to add more info:

The girl’s doctor, Deborah Jane Power, took to Twitter in a post that has since gone viral, saying the teen was denied the drug on the grounds of her gender. “Welcome to AZ. Today a pharmacist denied the MTX refill for my adolescent patient. She’s on 5 mg/wk to prevent AHCA Ab production. MTX denied purely because she’s a female, barely a teenager. Livid! No discussion, just a denial. Now to fight for what’s best for this pt (sic),” Dr Power wrote on Twitter. She added that the girl was her first paediatric patient to be denied her medication on these grounds, according to a report by KOLD news. The doctor told the local TV station that the teenager had worked a lot over years to get her pain to a “totally manageable” stage and she was now able to attend school as a result. The teenager’s mother also spoke to KOLD TV about the improvements her daughter had seen with the drug, and how the family is now worried about having to look for alternative medication. “It’s her first year and she’s in high school and it feels like a dream. She’s not in a wheelchair, she has a social life and friends for the first time and a life all young people should have,” the mother said. She said that even a wait of 24 hours between the drug being denied and a new prescription getting approved was a source of anxiety for the family. “I was scared, I was really scared,” she said. “I’m like if they deny this then we’ll have to find a different medication and we don’t know if it’s going to work.” The teenager’s doctor said that her concern lies with pharmacist who did not want to risk finding themselves in a battle between the state and people seeking the drug. She added that the pharmacist chose to not refill the drug because it can be used for an abortion. The report added that the pharmacy which denied the drug said that their focus lies in providing medicines in compliance with applicable pharmacy laws and regulations.

[lucysweatslove]

1/18/2022: Am I Another Prey You Feast on Everyday Until I Lose My Strength?

I've been here once before I’ve seen the open door Soul don't belong to me If it's still fucking yours

Unholy - September Mourning

TW: talk of eating disorders, talk about bodies, etc.

I feel like I'm word vomiting now, but I am definitely crying and just... I don't even know. I'm just sick of everything being related to my appearance and my body and my eating and feeling so fragile and like nobody really cares or respects what I've had to go through. It's like I fought SO HARD to see myself in a positive way and to have that internal confidence, and now I ALSO have to fight to have others see me as competent as I am.ng that any easier to stomach.

Part of the issue is finances. It just cuts into disposable income that I use for fun stuff, which is selfish, but also, everybody should be able to have disposable income for fun stuff sometimes.

But another issue is that having this time off means I will inevitably spend more time thinking, which today means thinking about the marriage therapy session I had yesterday. I'm happy to talk about our reasons for therapy more if anybody is actually interested, but until then I feel like it's just oversharing. Suffice it to say that now, we spend a lot of time talking about me going to med school and everything holding me back and how Husband can be better supportive.

Which ofc I don't even know.

And at the end of the session, our therapist suggested some individual sessions for me r/t my anxiety which I understand entirely, but I also am sitting here wondering if it will even be fruitful in the slightest. It's not that I doubt therapy works, it's that if there isn't a source of anxiety- eg, a cognition or pattern of thinking, or a Deep Seated Trauma to heal from- like the anxiety is totally idiopathic- what is there to do?

So I started to shift my thoughts from "what is stopping me from Doing The Thing?" to "what do I picture when I try to visualize Doing The Thing successfully?"And the answer to that is really that I see myself as somebody different- like, confident, yes, which I am not, but physically, I look different. Like, my teeth are straighter (I did have braces, but I can't wear my retainer and my top teeth have shifted and I'm very self conscious about it), I don't have rosacea or any of my acne problems, and my body is conventionally attractive and socially acceptable.

Yeah that last one.

Honestly, as I look back to every time I've been able to Successfully Do A Thing (eg, even applying to grad school), it's been while I've been in a period of actively restricting and/or exercise-purging to try to control my body shape and size (ie, viewing exercise as a means to burn calories to lose weight or maintain a current weight instead of just something good I do for my body, if that makes sense). This time around, I feel like I can only Do The Thing if my body looks a certain way, and honestly, I think the fact that I'm NOT actively monitoring that and trying to make it look that certain way is causing more anxiety.

And it's not that I'm scared to talk about or bring it up in therapy, really, because I am open and honest about it and I know it needs to get resolved. I'm just... well, two things. First, it's hard to know how it's going to go. I've seen a lot of therapists, counselors, and social workers, and in general every time my issues with eating have been brought up, they've been shoved aside for something else that to me, isn't as big of a deal. It's so hard for people to acknowledge restrictive eating disorders for those in average-size or larger-sized bodies.

Second... So, I've done a lot of work to be comfortable in myself and my body shape and size personally. My current PCP is better than most docs I've talked with and seems to understand my history and doesn't make use a lot of weight-stigma language or assume my health problems are linked to my weight (probably why it took until seeing her to get that cyst out of my wrist that was causing problems). But I still worry constantly about how my body is judged and perceived by others. Husband is so wonderful, and my best friend has been in many body sizes and gets it, but it seems like everybody else has something to say.

I feel like I'm word vomitting now, but I am definitely crying and just... I don't even know. I'm just sick of everything being related to my appearance and my body and my eating and feeling so fragile and like nobody really cares or respects what I've had to go through. It's like I fought SO HARD to see myself in a positive way and to have that internal confidence, and now I ALSO have to fight to have others see me as competent as I am. Do people actually care about my weight or body fat? I mean, I can tell myself no, but I know that whether I consume it or not, there is media out there that says yes. And I just. I hate that.

[lastoneout]

@virtual-particle Yay a distraction!!

So I got diagnosed with Idiopathic Intracranial Hypertension in 2021. I'd noticed some really weird vision changes that seemed concerning and so I went to an eye doctor who did a scan of my optical nerves, which showed swelling, and they said it could either be a brain tumor, MS, or IIH.

Them I got an MRI, and since they didn't find a brain tumor or any signs of MS I got sent to a neurologist with a presumptive diagnosis of IIH. They then performed a lumbar puncture to test the internal pressure of my cerebrospinal fluid, which was VERY high, and thus confirmed the IIH.

Idiopathic Intracranial Hypertension is a rare disease, and as the idiopathic part of the name implys, it's not known what causes it. There are lots of theories, some more solid than others, but overall it just means your body cannot properly regulate the ammount of CFS fluid in your brain, leading to increased pressure, which then causes your optical nerves to swell. It also causes migrane-like pressure headaches which can be disabling and are hard to treat, and on top of that it can cause brain fog, vision changes, pulsate tinnitus, and a whole host of other issues. And, the icing on the cake, if left untreated it can result in permanent vision loss.

The front line treatments for this condition are diamox, a diuretic medication typically used for extreme altitude sickness with loads of unpleasant side effects, and weight loss.

Now, I'm of the opinion, from both personal experience and talking to people on the r/IIH subreddit, that weight has fuck all to do with it and is just used as a convenient excuse to ignore this condition and blame it on the patients. I was already skinny when I got it and have had to deal with SO MANY DOCTORS saying "we don't usually see this in people your size" before telling me to lose weight anyway, because ??? I did lose weight, way more than the recommended 5-10% of my bodyweight, and nothing got better. Also, lots of people on the subreddit were also already skinny when diagnosed or lost weight and had it get way worse or did nothing only for it to magically go into remission on it's own, and on top of that it's fucking idiopathic, so blaming weight is stupid if you don't know for sure what's causing it in the first place. (It's also apparently very common in "women who gain weight during their childbearing years" which uh. that's all women. and humans. almost all humans gain weight in their 20s and 30s, we don't stay what weight we were when we were 16 forever ffs, and it being more common in women is probably another reason why doctors are so shitty about it tbh.)

Diamox also has a lot of really awful side effects and isn't intended as a long-term medication. It makes my IBS worse, gives me random painful tingles all over my body, throws off my electrolyte balance so badly I have to work extra hard to stay hydrated so my blood doesn't turn acidic, it's a nightmare. It can also cause hair loss?? Apparently?? Which fucking sucks, and long term use puts you at risk of osteoarthritis. It does lower my CFS pressure, but it doesn't fix it and the downsides are only balanced by the whole "not suffering severe brain damage or going blind" thing. I cannot WAIT to stop taking it.

Anyway. My shit ass doctor put me on diamox, prescribed a migraine rescue medication that make me feel like complete shit, and told me to lose weight because getting a shunt would ruin my life. Her weight loss advice was to stop eating fruit and skip meals, and she didn't listen when I said I already don't eat much, so I just ignored her. I only lost weight because I found out I'm allergic to wheat and stopped eating it. Even after I lost weight she kept pushing weight loss, insisting another 5lbs would send me into remission even though I was almost as skinny as I was in high school, and refusing to even explain a shunt to me because she was certain it would ruin my life.

But anyway I ended up getting so sick of not being helped by my horrid neurologist(who has also treated me so badly I have honest to god trauma now) thst I dropped her and got in with a neurosurgeon who immediately was like "uh yeah if weight loss was going to help it would have by now, time to explore other options. Either a shunt, or a newer treatment, a stent to open up a specific vein in my head. They just needed to do a couple of tests to figure out which would be better.

So I got a MRV, a special kind of MRI to highlight the veins in my head, and it did show narrowing at a key spot that they see in IIH patients, so next I got a cerebral angiogram, which I won't explain bcs if you're squeamish it's not fun to hear about, look it up at your own risk, but they checked out the vein in my head and despite me having narrowing it was clear that the narrowing was caused by the IIH and it wasn't what was causing it in the first place, so stent wouldn't be helpful in my case, and thus I am now waiting for Jan 6th to get my shunt.

The shunt is actually fine, my old neurologist was being insane about it, it's going to get plugged into my lower spine, and essentially become a spigot for my CFS to drain out of. They can program it, and the fluid will just safely drip out into my abdominal cavity where my body will absorb it, which will relieve the pressure in my head and I'll be able to get off the diamox, I won't be at risk of blindness, and it might even make the headaches go away. I can also still get MRIs, I can get pregnant safely if I want, and while there can be complications it would mostly just be the tube getting clogged which can be fixed with a quick surgery, and if I magically go into remission or something else happens that necessitates removal that can be done no problem.

I'm very excited for the surgery. I know it's def risky, all surgeries are, but if it means not going blind and getting off the diamox I'll do it! I will probably still have to deal with some headaches, but this should help make them less intense or happen less often.

Anyway yeah I hope that helped! I don't really know about other uses for shunts but they really don't seem all that bad! It's honestly pretty interesting all things considered, and I hope this info was helpful or at least interesting to read o7

Stuck in the ER and god I cannot wait until my wheelchair is finished and delivered T-T the regular chairs here are angonizingly uncomfortable and getting around when I'm in this kind of pain sucks. But also the regular hospital wheelchairs are a nightmare and I can't get around on my own in them at all so ajdnfkgkglh

When will my wheelchair return from the manufacturers 😭😩

[best-child-neurology]

DOS AND DON’TS FOR PARENTS HAVING KIDS WITH EPILEPSY

Each parent cherishes and adores their children with the utmost sincerity. Yet, what if their children have a complaint of epilepsy? Then, at that point, the peace disappears from their life. There is always fear in the heart and mind about what will happen if they are absent in that situation with their child.

Along with the child suffering from epilepsy, the parents are always afraid of social downfall. Because of this situation, neither the child nor their parents are comfortable socialising with others; however this isn't the correct way to push ahead. Knowing about epilepsy, understanding your child needs and knowing Dos and Don'ts for youngsters having epilepsy plays a major job.

What are the causes of epilepsy in children?

So first, how about we understand that the causes of epilepsy can be different in all children, and they can also be different because of age. While certain types of epilepsy are hereditary, many idiopathic epilepsy cases have obscure causes.

Children foster epilepsy because of hereditary reasons. Be that as it may, the exact cause of quality induced epilepsy attack isn't yet known.

Injuries to the head can cause seizures.

A few circumstances that damage the brain, like certain fevers, brain growths, and infections, can also cause epilepsy.

A few developmental diseases, like Angelman condition, neurofibromatosis, Down disorder, and tuberous sclerosis, also increase the chances of epilepsy, epilepsy treatment in gurgaon

Changes in the brain's construction are the cause of epilepsy in 3 to 10% of cases. Babies brought into the world with such structural changes may be at risk of epilepsy.

Children with autism may also encounter epilepsy seizures in 3 to 10% of cases.

Congenital disabilities and chemical imbalances in the body can also cause epilepsy in babies.

How does childhood epilepsy affect a child's life?

Children with epilepsy can participate in various activities and ought to be encouraged to do as such. Be that as it may, in cases where this condition is set off by fervor or stress, there can be challenges. What epilepsy can mean for your baby is given underneath:

If the child's ability to learn isn't affected by epilepsy, then a child with epilepsy has the same abilities and understanding as different children.

Epilepsy can cause behavioural issues in the child, and it is advisable to look for help from an Epilepsy guide to deal with these.

While a child with epilepsy can generally appreciate sports and games, it is ideal to take the necessary precautions and be managed by adults based on the child's epilepsy attack.

What can your child encounter because of epilepsy?

A child whose epilepsy seizures are difficult to control may encounter loss of energy, exhaustion, and issues with attention and behavior. A child's social abilities and ability to learn may also be affected, leading to low confidence.

Children whose epilepsy seizures can also be controlled often experience emotional difficulty and may have behavioral and learning issues. Now and again, the family needs to give their child full help and assist them with coming out of these challenges.

Dos and don'ts if a child has epilepsy?

Epilepsy can be challenging to care for and control. In this manner, you should be prepared to handle the child in case of a seizure. Here are a few points that can help you in the meantime:

Dos:

Assist the child with carefully lying down on the play mat on the floor and eliminate the articles around him to avoid any injury.

Lay the child on his side to avoid choking because of vomiting or saliva.

Release the collar or bind around his neck to assist him with breathing.

Track the duration of the visit.

Call the specialist after the epilepsy attack or on the other hand if the seizure lasts over 3 minutes.

Stay with the child for the whole duration of the epilepsy seizure.

Don'ts:

Try not to panic.

Try not to attempt to restrain from moving the child's body developments during an epilepsy attack. This may damage or cause inconvenience to him.

Put nothing in the youngster's mouth, as this could cause him to stifle.

Try not to give the baby food, medicine, or any fluids to avoid choking during a seizure.

During a tonic-caesar, don't attempt to strongly open the youngster's mouth, as this could injure your child or block his airways.

How to forestall epileptic seizures in a child?

It is crucial to perceive the triggers of epilepsy seizures in your child, and it is imperative to take precautions to avoid these triggers.

Make sure that your child gets sufficient rest, as lack of rest can also set off seizures.

Wear defensive gear, for example, a protective cap while using a skateboard or while riding to forestall head injury.

Remind your child to walk and step carefully to avoid falling.

Avoid brilliant lights and noisy commotions, as these can set off epilepsy seizures.

Remember to give your child anti-seizure medicine at the same time consistently.

Teach your child some pressure management methods, as stress can also set off seizures.

When to counsel a specialist?

Contact your PCP immediately if,

Your child has had an epilepsy seizure that lasts over 3 minutes because the baby may have had a dependable life-threatening seizure called status epilepticus.

If your child can't breathe for over 30 seconds.

Injury to the head during a seizure, similar to an injury and damage to the brain, can happen during this method.

Things to remember-

If your child has epilepsy, remembering the following is necessary:

Epilepsy can be mistaken for another disease, so getting the legitimate diagnosis is essential.

The sort and seriousness of epileptic seizures are different in each child. In this manner, always take into account the characteristics of your child's condition.

Most epilepsy seizures can be controlled with anti-epileptic medications, and the child can carry on with a normal and healthy life.

Epilepsy can be different in each child, and prior to starting any treatment, it is critical to understand the characteristics of your child's condition completely.

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[purple-socks-and-sandles]

My Rep Tour Experience

So I think I'm finally okay to post this. It's been 10 days since I went to Tampa Rep Tour and I know eventually I'm going to look back on it fondly and remember how amazing it was, but right now it's discolored by what happened.

I started out the day by waking up and putting finishing touches on my jacket and sign, pictured here:

I was so excited to head off for Tampa, but first my mom and I had to go to Walmart to grab some eye drops for my contacts. We joked on the way there that we should find her a dog toy shaped like a snake or something for her to wear to the concert. We headed off and jammed to Taylor all the way to Tampa, though we had to turn it down sometimes because my mom had to pay attention to bad drivers. Like halfway there we realized we had forgotten to go to the dump before we left so there was a bunch of trashbags in our trunk. We had to find a rest stop to put them in a dumpster because you can NOT leave trash in a car in Florida.

We made it to our hotel in Tampa where we were told there was no WiFi and the doors leading into the hotel didn't lock at night. It was kind of shady, but I was so pumped that I didn't care about any of it. After a lunch/dinner at Chili's we went back to the hotel and I got ready. We had gotten glitter glue and Sharpies at Walmart so after I got ready I drew a 13 on my hand, but the glue was too thick so it never really dried.

I was 100% covered in glitter, including everything I was wearing. We left at 5:50 and got to the Stadium right at 7 even though it was 11 miles away. There was tons of tracking and my mom thought we wouldn't get there in time, but I was so excited I couldn't be stressed. Once we got there, I took some pictures:

I don't know about you guys but to me that last pic radiates happiness. I was smiling so wide I thought it was going to stay on my face permanently. All through Charli and Camila's sets I was dancing and having the time of my life. Eventually, this lady came up to us and told us we were in the wrong seats (Turns out we were directed to the wrong section!) We made our way to the right seats after apologizing and I went right back to dancing. Then, Taylor came on.

There are no words to describe how loud I screamed or what I was feeling when she came out. I was completely beside myself in every way possible. I think I might have even been annoying the people around me! I was dancing and jumping and going completely crazy. At one point, I even got to see Andrea give some people Rep Room I think, and it was so cool to see them get it.

I took some really blurry pics, including when she was singing Invisible, but it was around that time that I realized that I was in a ton of pain. For those of you that don't know (Most of you) there is something wrong with my back and spine. The doctors gave it a tentative diagnosis of juvenile idiopathic arthritis, but they told us that they were only calling it that so that the insurance company would provide coverage for pain control. The truth is, we don't know what's wrong with me. Whatever it is, it means that I am almost always in really bad pain. Most of the time, it is manageable with NSAIDs and IcyHot. However, I regularly go home early from school and spend the rest of the day in bed. It causes me a lot of pain, but I thought I would be able to handle the concert. I was very wrong. After Invisible, I sat for the rest of the concert, trying not to cry. I'm actually going to rush through talking about this because it makes me want to cry right now. I wasn't able to see the second half of Taylor's concert. I sat in my seat trying not to cry for the remainder of the show. After it ended I started sobbing because of what I had missed and how much my back and hips hurt. We waited for the crowds to file out before my mom went and got one of the paramedics. They brought me a wheelchair and wheeled me to the First Aid room, where I took this pic.

I was actually in so much pain that my legs were shaking and spasming. I'm still recovering from the toll it took on me. They brought a golf cart to take my mom and I to our car, and we left the stadium. When my mom turned the car on it started playing Reputation where we left off, and I started to cry. I haven't actually been able to listen to any of Taylor's music since then because it just reminds me of what I missed. I didn't open tumblr for a few days because my dash is like 80% Taylor blogs and it just made me want to cry. It's so hard to not listen to her music because she makes me so happy, but right now it's too raw.

Eventually that concert will be cemented in my memory as a great time, but I can't look at it like that right now. It did help me realize that I'm not really managing my pain as well as I could be though. I'm in the process of talking to my guidance counselor about partial homeschooling so that I don't have to miss a lot of my junior year, and my mom and I are looking into finding a support group for people my age with chronic pain.

Despite what happened, @taylorswift was amazing as always. Her speech for Invisible was so sweet, and when she talked about her sexual assault trial it brought me to tears in a bittersweet way. She's such an amazing woman and I'm so glad I got to see her, even if it ended in pain. I've loved her since I was 5, and I'll love her til I'm 105 ❤

[splend-42]

I'd have died at 3, if not sooner, because that's when I had ITP: https://en.wikipedia.org/wiki/Immune_thrombocytopenic_purpura

Minimal blood platelets, lots of internal bleeding and basically if I'd been cut I'd have bled to death like a haemophiliac.

Dad reckons it was caused by a cough medicine with an adult-sized dose of aspirin in it, but the I in ITP used to stand for 'Idiopathic' which means 'fucked if we know what causes this' so I'm sceptical of his claim.

I got better! I just had to have NO strawberries for years afterwards because they contain anti-coagulants. And I don't take aspirin unless there's absolutely nothing else available.

Lol, here's a fun one: if you had been born in the medieval era and without access to modern medicine, how long would you have lived? If I managed to survive being born (unlikely) I would have died at age 22 from appendicitis :) hbu?