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#vasovagal syncope
nerdyenby · 6 months
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Late Diagnosis (tm) starter pack
My pain doesn’t start or stop, I just remember/forget about it
Tf you mean you guys aren’t tired 24/7
“Close enough” to normal to go under the radar
Can’t decide what to bring up to your pcp first so you just never bring up That One Thing that you’ve always dealt with and keep forgetting isn’t normal
“Have you tried working out?”
“Maybe you wouldn’t get dizzy when you stand up if you left your room more often”
Thinking a mobility aid would help you but being afraid to voice that because people will think you’re exaggerating or start treating you differently
Being too drained to call and schedule an appointment even when you remember (and most of the time you forget)
“It’s not that bad… except when it is”
Flare ups that leave you in tears and unable to move but it’s only happened a handful of times so it’s “probably fine”
Being so used to being tired that that one time you woke up well rested 4 months ago is still on your mind
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honeyed-lemonade · 2 months
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chronic illness posting
ow
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webkinzpossum · 1 year
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i’m a medical mystery
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aelianated-star · 11 months
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Buckle up folks because this is a long post -
Tips for newly diagnosed dysautonomia patients:
- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)
- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.
- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain
- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!
- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!
- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).
- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!
- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.
- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS
- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!
- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.
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azucar-skull · 2 months
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Research articles: Here are high sodium foods to avoid!!
Me on a high sodium diet: Perfect.
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painsandconfusion · 1 month
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I have a question about pain and fainting. Some people say that passing out from pain isn't instant, but I've heard stories of really bad injuries and they pass out almost instantly so we know its not blood loss. Who's right?
Vasovagal syncope is your buzzword to google. Fun topic.
Long story short: yes and no
Your body can pass out from shock or stress nearly instantly, but pain itself tends to creep up more slowly, often leaving the person awake just unmoving. It's entirely dependent on the person and the situation, but you're more likely to pass out instantaneously from the panic of seeing your femur sticking out your abdomen than you are from the buildup of pain from that, if that makes sense.
Remember that bodies and minds are weird and unique. If anyone tells you 'thats not how bodies work', that that with a grain of salt. Some people are born with like 10 kidneys. Some have two hearts. Some sleep with their eyes open and focused. Bodies are weird and how or when you pass out is so incredibly varied, I'm not gonna tell you what is or isn't possible.
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cookinguptales · 11 months
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time to shill for Big Salt!!!
Okay, so like I said in my last post, I recently became a ~Vitassium Ambassador~, which is a fancy way of saying that I shilled for this company for free for so long that now they're paying me to do it.
In salt. Much like a deer.
Anyway.
Vitassium is SaltStick's line of products specifically for POTS, EDS, Cystic Fibrosis, Vasovagal Syncope, and other forms of autonomic dysfunction. Essentially speaking, SaltStick has been making electrolyte products for years, and when they realized that a lot of their patients buying them were doing it for medical reasons, they started doing research into creating products specifically for that purpose. And that's how the Vitassium line was born.
Vitassium generally has more salt and less magnesium/calcium/potassium than SaltStick's other electrolyte products, which is good if you need a lot of salt and you don't want to take too high a dose of the rest. Personally, I tend to use a mixture of both of their lines so I can get a little calcium/magnesium boost sometimes but more salt other times. (The amount of potassium is fairly similar in both lines, with a little more in the SaltStick line.)
Either way, it has a lot less sugar than Liquid IV, which I get sick off of due to sugar sensitivities. Like... *googles* 11g of sugar in Liquid IV vs. 2g of sugar in Vitassium, with the same amount of salt in each serving. I have to be pretty careful about my sugar intake, and I suppose I can't speak for everyone, but my stomach handles Vitassium a lot better than most of the other alternatives on the market.
So I've been using it for several years now and I'm really happy with their products! Like -- I may now officially be a shill for Big Salt, but I don't plan on lying or exaggerating anything here. I use their products every day, and sometimes that's the only way I can manage to take a shower.
(My fellow POTS/EDS-sufferers know, the shower struggle is real. lmao)
Anyway, they just sent me one of everything in their Vitassium line. They didn't actually ask me to show it off, but I'm doing it anyway because this is my blog and I cannot be stopped.
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From left to right, we have a bottle of their electrolyte capsules (these are sugar-free extended-release salt pills with a bit of potassium added), both flavors of their electrolyte fastchews (chewable electrolyte candies that provide quick relief... think salty sweettarts), a cute bottle full of packets of their electrolyte drink mix, sample packs of the fastchews, and some stickers.
Personally, I mostly use the fastchews. I've tried salt capsules in the past and had some stomach upset, but now that they sent these to me for free, I guess I'll try them out again. The fastchews are basically sour candy full of salt lmao. (They also have about 2g of sugar per serving, just like the drink mix.) They really are effective, though, so I tend to take them as needed throughout the day.
I usually just keep a bottle of them in my purse, but the sample size bags are resealable and fit well in pockets, bags, etc. I'm happy that they sent me some little sample bags because now I can refill them, haha.
I used to just buy the normal SaltStick fastchews, and my go-to flavors in that line are orange, wild berry, and lemon-lime! I haven't tried the mango because I'm allergic, the peach is okay if very sour, the coconut pineapple is a nice piña colada taste but a little sweet for me, and I really hate the watermelon ones!
(Look, I promised to be honest with you. lmao)
The Vitassium fastchews are newer, and they only come in two flavors so far. I always buy the fruit punch because I despise artificial grape flavor. They just gave me a bunch of grape ones, so I tried them. Good for what they are, but I still hate grape.
(Do any of my chronically ill followers want these? lmk)
The drink mix is the newest Vitassium product! I like it quite a bit; the relief is quicker when you drink it vs. eat it, and speaking as someone who generally hates drink mixes, the flavor is pretty good.
I've tried both the fruit punch and the pink lemonade, and I think I prefer the pink lemonade. The flavor suits the salt a little better, imo, and I think weirdly it mixes a little better?
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I usually buy the drink mix in the canisters because it's cheaper that way and produces less waste (the canister pictured there is one I already had) but the packets are very handy to keep in your bag. They're easy to tear open and even when you tear off the whole top, the opening is small enough that it pours smoothly into small-necked bottles. I like to put some ice in mine and shake it up.
(Side note: Vitassium has specifically designed all their packaging to be as easy to open and use as possible because they know that so many of their customers have arthritis, EDS, and other connective tissue disorders. Which, as someone with EDS, I truly appreciate.)
Finally, one thing I genuinely like about Vitassium is that they try to make their products as accessible as possible for their customers who use them for medical reasons. They have something called the Vitassium Club, which allows registered users who have a medical condition to get 25% off all their electrolyte products. You don't have to get a doctor's note or anything like that, just send in a quick online form and wait for them to change the status of your account.
That brings the cost of the product down considerably for the people who need it most, which is good because honestly? Electrolyte boosters add up fast when you need to consume that much salt every day.
Uhhhh, I think that's everything for now! If you have any questions, lmk! I'm fairly passionate about this kind of thing because when I was first diagnosed with POTS/EDS like... god, 15 years ago now, they didn't have anything like this. I remember struggling to develop a diet that worked for me with no one to teach me and honestly? That fucking sucked. I don't want anyone to be in that position.
So now here in 2023, I'm happy to pass on any chronic illness-related tips I have. Like drink Vitassium! And add salt while you're cooking, not at the end! The flavor will be less strong that way! And a packet of sugar-free hot cocoa mix will often have as much sodium in it as a bag of chips!
Stay salty, friends. 🧂💜😎
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ineloquent-creature · 3 months
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i hate EDS like what do u mean i am DISLOCATING joints *passes out*
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arctic-hands · 8 months
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Remember when that post went around by that user who had issues with feeling sick when their blood sodium was low and they felt physically ill from it so they would just sprinkle salt into their hand and lick it until they feel better? And it was reblogged by chronic illness/disability circles until it was picked up by nominally healthy people who were commenting that wow this made me feel so much better after feeling like shit constantly, which PROLLY meant they also had low sodium issues. But then health freaks and normies got ahold of it and were reblogging in embiggened letters "NO NO NO! THIS WILL LITERALLY KILL PEOPLE! AMERICA HAS AN EPIDEMIC OF HYPERTENSION DO NOT LISTEN TO OP THEY ARE SO STUPID"?
Anyway my Crohnsy, vasovagal syncopeic, hypotensive ass is out of Lays ☹️
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crowcussion · 4 months
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GUYS GUYS GUYS HOLY SHIT GOOD NEWS
ok SO i have been fainting and my vision blacking out for years, 9 years i think, and i FINALLY GOT DIAGNOSED!!!!!!!!!!
neurocardiogenic syncope!!!!!!
it might also be vasovagal syncope they might be the same thing but i’m not sure but anyways i know what’s wrong with me and can get help!!!!!!!!
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mariliva-mello · 7 months
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Me ajuda nessa nova fase Senhor, em que sou um barro ainda informe. Faz de mim um vaso de honra e que carrega dentro de si o conteúdo de glória que é Jesus.
- Mariliva Mello
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Day 11 - Fainting
I was waffling on what to do for this day until I took not quite enough Nyquil and just let my mind wander for a bit lmao so have something cute
Ping list: @ailesswhumptober, @whumperofworlds, @whump-captain
TWs: another thing where kissing happens and a guy's tits are out but nothing happens, sex gets referenced with a flirty suggestion but its pretty pg-13 still, blood, vampire feeding, alcohol mention, needle mention, fainting
Mariano had decided to go out that Friday. He didn't have work in the morning for once, and Bastian had been getting onto him about being a seventy-year-old in a thirty-three-year-old's body. He'd gone to a place he'd heard good things about--it was loud, and the lights were too much.
The drinks were nice though, and the huge, ruby-horned, golden-eyed bartender was handsome and charming. Maybe he would make this a regular thing. He'd even met a sweet vampire. The blond twink had body glitter on, likely from head to toe, and her green eyes lit up when he'd responded to her flirting.
Brian, her name was. She'd let him text a selfie with her to Bastian, and he'd let her send one of them to her boyfriends. She'd also let him pay for the taxi back to her place.
It was so cozy. He took in the restored, renewed antique cellos and violins hung up on the walls, with flowers and animals carved delicately into the outer layers of the wood and varnished over with love. He saw the worn leather jacket that hung near the doorway, underneath a motorcycle helmet. He saw crutches, and what had to be a backup wheelchair, kept near the couch in a corner.
She'd led him to a bedroom, furnished with string lights and tapestries over the walls and a fluffy bedspread on the queen-sized bed. A teal television sat on a dresser, the perfect height for movie nights. And now her hands cupped Mariano's face as he knelt above her, propped up on his elbows and knees.
Their lips pressed together, hers chilled but tasting like strawberries. It lingered on his own lips when they pulled apart. He'd have to ask her what brand the lip gloss was. Cute, freckled cheeks were flushed. Her sharp indicator teeth were bright in the dim, warm light when she beamed up at him.
"God--don't take this the wrong way, you smell so good right now." Brian said, pulling Mariano down for another kiss. "Like it's not a cologne, and you don't smell afraid. Do you have magic or something?"
"I do." Mariano said, one hand slipping up under Brian's head, his fingers threading into her hair. "It's pretty strong though, it might be off-putting."
"Can I taste?" One of Brian's hands dropped to his neck, and Mariano felt his pulse more strongly. "If it's not my cup of tea, I can always get a different taste of you." Her smile shifted into something more flirtatious. "I'm really good with my mouth."
Mariano laughed, kissing her again, soft and sweet. "That sounds good to me."
Brian brightened up, wiggling to sit up more against the head of the bed. "Okay! Turn around, shirt off if you want. Just lean against me." She tapped his shoulders, looking him over appreciatively. "You don't gotta worry about crushing me either."
"Alright, alright." Mariano said, raising up onto his knees to tug his shirt and binder off over his head. Brian's eyes lit up when she saw him, hands reaching to feel up his sides. He lowered himself down, shifting so that his shoulders met Brian's chest. Cool fingers drifted over his temples and neck, brushing his hair aside. "You don't have to be gentle."
"I think I'll be gentle anyway." Brian whispered, cold lips ghosting over his skin again. Mariano couldn't help the shudder that raced through him. He let out a sigh when Brian opened her mouth and then opened it wider.
He felt the brush of two thin teeth as they were brought forward. One of Brian's arms looped around his front, hand coming to rest affectionately on his cheek. Not a moment later, two sparks of pain erupted from his neck.
Mariano hummed, eyes fluttering closed as Brian's fangs sunk deeper, slow and steady. She'd obviously been doing this for a while. The moment her teeth had pierced the artery, she withdrew and locked her mouth around the wound.
His head started to spin as Brian's thumb began to trace along his cheekbone. She hummed against him, slender hand starting to support his head more and more. Static began to fill Mariano's ears. The soft noises that Brian made started to fade. The warm lighting started to dim. The room began to spin.
The world dropped away and Mariano fell.
"Hey. Open your eyes for me." Brian's voice cut through everything. It was low and steady, and Mariano realized that he wasn't leaning against the sweet vampire anymore. He was lying down and his feet were propped up on some pillows. "Mariano?"
He groaned, managing to open his eyes as Brian's fingers slid through his hair. "I'm...I'm awake." He mumbled, meeting Brian's eyes. She was sitting on the edge of the bed, her hip pressed against his side.
"Good! You had me worried. You fainted, but I didnt take much--do shots give you trouble or something?"
Mariano laughed, quiet and warm. "No, no, needles are fine. I don't mind them." He reached to take her hand, squeezing it when she threaded their fingers together. "Heard it can just happen sometimes, though."
Brian laughed in return, nodding. "Guess it was just a random spell then, huh?" She reached to slide her fingers through his hair, pulling a quiet, relieved sound from him. "Well, you're not in a state to make out or anything now, so how's a movie sound? I can make popcorn, get you a soda. You can stay the night too, if you want."
Mariano brought her hand to his lips, kissing her knuckles. "That...that all sounds very nice, yes."
Brian stood, kissing his temple before fluttering out of the room. "I'll be right back then, 'kay? Text your boyfriend, and I'll let Elliot know he's evicted for the night." A quick text to Bastian updating him on the plan was all he had to do, and then he relaxed as the sounds of playful arguing in the kitchen drifted in.
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I desperately need a vacation from my body and mind. Sleep just doesn't feel the same. I wake up more tired than when I fell asleep, more sore and nauseous. Chronic fatigue is gonna end me. I can't catch up, my brain feels like it's running nonstop. My body still can't tell me what it needs. My CRPS still hasn't ended with amputation. My hEDS is barely treatable. There's so much more too.
Nothing I have can be cured.
Being autistic is hard, being autistic with severely debilitating chronic illnesses makes it feel impossible.
I'm just so damn tired.
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muffin-n-waffle · 21 days
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Just once I would like for my vasovagal syncope to not make me look like a Victorian woman in need of smelling salts while I’m at the doctor
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zhonglilover12 · 4 months
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Trying to be some semblance of active and maintaining a weight that doesn’t exasperate your condition/joints is freaking hard when you pass the fuck out a couple hours later just from walking up six fucking flights of stairs when that used to be easy in the beginning and makes your “unspecified” (fuck you doc) pain condition make you feel like you’ve been shot
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whumpster-dumpster · 1 year
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What about a sympathetic fainter? Automatically makes for two Whumpees! Bonus points if the person who faints in response to Whumpee #1 has never fainted before and has no idea what happened when they come to.
Me? Oh, me 🙋‍♀️ I’d be that sympathetic fainter for sure
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