#dysautonomic disorder

[crippy-tangerine]

“I don’t think my dysautonomic disorder is that bad!!”

*misses beta blocker dosage by 6 hours*

“… I stand corrected, it is that bad!”

[crippy-tangerine]

We’ve reached the limit in the tags, but have added a few conditions we know of that affect the digestive system to some degree.

Also, just a shoutout to the disabled folk who:

- Experience incontinence; whether that’s because of interoceptive issues, neurological disorders, bowel disorders, or many other reasons

- Have had and/or will have accidents related to gastrointestinal issues in public (love u guys, sorry that people are so weird and mean about this)

- Have had their gastrointestinal issues ignored/not properly treated and now have worse symptoms/complications as a result

- Have missed out on events, trips, meet-ups or other fun things you wanted to go to because of gastrointestinal symptoms

- Need help with managing things like toileting, colostomy bags, nutrition, or specific symptoms/treatments

- Have developed anxiety as a result of gastrointestinal symptoms

- Cannot keep down/digest/tolerate a lot of different foods and as a result can’t eat at restaurants/other people’s houses

- Honestly just. Shoutout to all of you. Sorry people can’t consistently behave with compassion towards u.

Also extra things to look up if you want to do some learning (not everything will fit in tags sorry!):

-> Gastro-Esophageal Reflux Disease (GERD)

-> Short Bowel Syndrome

-> Gastrointestinal symptoms in Multiple Sclerosis (key words to look for: nausea, incontinence, heartburn, constipation, dysphagia)

-> Colorectal (Bowel) Cancer

-> Gastrointestinal symptoms in Dysautonomic Disorders (key words for most results will likely be: POTS + gastrointestinal symptoms, there are way more dysautonomic disorders than just POTS but they are less well known!)

-> Crohn’s Disease

-> Irritable Bowel Syndrome

-> Coeliac Disease

-> Connective Tissue Disorders and gastrointestinal symptoms/associated gastrointestinal disorders (key words here could be: hEDS + digestive issues + comorbid conditions)

-> Hypermobility Spectrum Disorders and associated gastrointestinal symptoms/disorders

-> Mast Cell Activation Syndrome

-> Disorders involving chronic fatigue and/or generalised chronic pain and their associated GI issues (key words to start you off: Fibromyalgia + Chronic Fatigue Syndrome + digestive system symptoms)

-> Gastroparesis (delayed gastric emptying/gastric stasis, or if there’s no known cause for it, it may be called Idiopathic Gastroparesis)

+ so so many more!! Hopefully this is a little helpful though 💖

just a kind reminder to please be kind to the people you know with gastrointestinal disorders/conditions! they're embarassing, often very painful - sometimes debilitating - and very hard to talk about without oversharing a lot more than most are comfortable with.

if someone you know:

- spends a lot/long time in the restroom

- has a colostomy bag

- requires diapers or similar implements

- experiences a lot of gas and/or bloating

- requires tube feeding or other alternative methods of nutrition

- has food restrictions (e.g. cannot handle a lot of spices, certain proteins, etc.)

- eats a lot, or only a little

or other similar factors of their life...

please be patient and understanding, it's hard having guts that really like disagreeing with you!

[weathernerdmando]

My sleepy fiance getting up after lying down so she can get properly ready for bed: why are you so warm??? I'm sweating!

Me, generating a shitton of body heat for some reason having been lying down doing nothing, despite being in long sleeves and should in theory be cooling myself down: I think maybe it's the POTS.

My sleepy fiancee: well take it off the stove burner then.

[b-blushes]

why do i have goosebumps when it is apparently 27.5 degrees c in my house. temperature machine broke :(

[3liza]

every time I knock back a slug of pickle juice for my dysautonomic disorder I toast every trans girl on spiro. my comrades

[succubi-tch]

Their (the anon's) argument being that cancer "is the worst disease in the world" as if THAT sort of language isn't more harmful to people with people with chronic illness (including cancer) than it is beneficial to people with cancer. Comparing "who's disease is the worst" benefits no one and is incredibly trivializing to people with uncommon or not well-known dysautonomic disorders. If you do that, you're just being a fucking dick.

Still thinking abt the prick who called me an ass or whatever for taking issue with the reductionistic (and frankly, harmful) language a cis woman breast cancer survivor used after having a double mastectomy in which she said while crying she "no longer felt like a woman"....

Cis people don't even realize their idea of what gender is is so incredibly harmful to even themselves. It's sad

[dazzlinglybitter]

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!

[seven-oomen]

A few of the potential physical effects of PTSD on the body:

Chronic pain (like fibromyalgia, crps, myofascial pain syndrome)

Chronic fatigue

Autoimmune diseases

Diabetes

Arthritis

Neurological disorders like FND (Paralysation is a possibility with FND, so yes, PTSD could potentially mean you would need a wheelchair).

Non epileptic seizures in the form of dissociations.

Gastrointestinal disorders like IBS

Dysautonomic disorders like POTS

That's not to say that PTSD always cause these problems, or these issues can only be caused by PTSD. It is however a potential.

(Still a good doctor should rule out other physical causes first before jumping on the PTSD/ "psychosomatic" bandwagon).

Also note, that just because PTSD might be causing your problems, that doesn't mean that they're not real. They are. But instead of a hardware problem, it's a software problem. Still very real, still not something that you're making up. The cause of it, is a sick brain in that case.

[maxarat]

Lore dump for Ariel Brown!

His mom is a Jewish American nurse who works for the army, and his dad is Apollo. Ariel is transmasc and uses he/him pronouns, along with being asexual and gay. He has the standard ADHD and dyslexia of demigods, as well as autism and a dysautonomic disorder. Ariel tries his best to be helpful and feels horrible when he can't be for whatever reason. He loves fiercely and though he's not a great fighter he's very protective. Ariel's main weapon is a cane sword that has plot relevance. His special interest is in the Disney Renaissance.

Ariel is Nico's love interest (he was half created out of spite ngl) and has found siblinghood with Lacy, Meg, and Rachel. He's also best friends with Malcolm and Clovis! Here's him in Lemon Maker

Ariel arrived at Camp Half-Blood just a little bit after Nico, by a matter of hours. They near instantly became best friends while in the Hermes cabin

Ariel didn't stay in the Hermes cabin long and was claimed in the infirmary after a training accident. Ariel loves his siblings very much and wishes he could do everything for them

Ariel was devastated when Nico ran away. He spent every break from school at camp, and Malcolm helped with his worry quite a bit, which led to Ariel developing a crush on him between Labyrinth and the Last Olympian that doesn't go anywhere

When Nico gets captured by the giants , Ariel has a lot of dreams about it, and got a prophecy to save Nico. He was by Nico's side for most of House of Hades, including the Cupid scene, though Ariel didn't hear what Nico had to say due to passing out after trying to attack Cupid. I think this is the moment Nico realizes he likes Ariel

Ariel goes with Nico, Reyna, and Hedge in Blood of Olympus. After the battle with Gaea, Ariel has to spend almost all his time in the infirmary, but Nico often comes to visit often, which helps Ariel to realize his feelings

The infirmary on the Argo was Ariel's de facto room since he specializes in healing. He's a good archer and plays several stringed instruments, but with his disability and mom's job he's always lent towards the healing aspects of his father's powers

Ariel is scared to tell Nico how he feels because all of Apollo's lovers seem to turn into plants and Nico's surrounded by Demeter's children (Persephone, Lex, and I imagine he's friendly with the rest too). Lacy manages to convince Ariel to tell Nico, though, which he does at the beginning of ToA

Speaking of ToA, they're the Trials of Ariel Brown now. Nico lives with the Jacksons, and Ariel finds Meg McCaffrey on his way to see Nico and takes her back to camp, where Apollo, still a god, is visting Rachel. Ariel yells at him a bit for being a bad dad, so he has Ariel go save the oracles. He also goes to the Underworld along with Nico and Will in TSaTS

Nico and Ariel call each other moth and butterfly respectively, and Ariel learns Italian to talk to Nico when he's stressed

@jasontoddssuper @honeysgalaxy @insomniac-jay @theautisticcentre

[trans-axolotl]

i'm sorry if this isn't helpful/warranted, but i was wondering - are you having full fainting episodes, like a total loss of consciousness? or are you feeling faint but still somewhat aware of your surroundings? as i understand it, pots is a *near*-syncope disorder. you feel faint, but you don't actually lose consciousness. when people with pots do tilt table tests, they're supposed to become dizzy and tachycardic without losing consciousness. there are a lot of dysautonomic disorders similar to pots that cause full loss of consciousness, and a lot of the solutions are the same (eat large amounts of salt, electrolyte drinks, compression garments for lower extremeties, etc.). regardless of what's causing it, i'm really sorry you're dealing with all these symptoms and i hope you can find a diagnosis and treatment!!

I'm having both! So I have a lot of presyncope episodes pretty regularly, and also have lost consciousness and had suspected convulsive syncope multiple times this week. So far I've only been diagnosed with POTS, and my doctors have said that it can cause fainting as well as presyncope, which also seems to be what i've read online (NIH and dysautonomia international both list fainting as a symptom of POTS, although they mention that not everyone with POTS faints.)

i still definitely need to learn more about other dysautonomic disorders but right now it seems like POTS is still one option for something that's causing my fainting, even the convulsive fainting.

[dismember-cisgenders]

Gender affirming dysautonomic disorder 🩷

[kjsadd]

Your brain develops based on sensory input—sight, hearing, sight, touch, etc. Eg, as a child you learn the language spoken around you, regardless of your genetic background. The EDS population moves “a little funky” due to joint instability. Gives them different input than the non-EDS population, which affects how the brain is formed and how it functions. 

Connective tissue disorders, the input you get from joints moving funny / inappropriately rewires the brain differently than someone who doesn’t have a CTD. Eg, for all people, if you put your arm in a cast, parts of your brain literally shut down because you don’t  activate it enough and don’t get feedback from your arm. We function in a feedback loop from sensory input to motor output, and your whole system, including autonomic and gut, is connected in that cycle. The biggest and most constant input is from resisting gravity and moving your body. We’re always doing both those things, so if your feedback loop is funky, your system is never working quite the way it should. And movement / gravity feedback “kisses” autonomic systems on the way to the brain, hence gut issues, hand mottling, POTS, etc. Do what you can to counteract that, get that feedback loop to improve via other systems. 

DMX (digital motion x-ray) scans can help see what the impact of your daily activities are, eg if you always sleep on one side. Shows what cervical spine does in 9-12 planes of motion. Upright MRIs or CTS may be less clear. Can tell what the neck is doing when they move. 

Romberg’s test. https://en.m.wikipedia.org/wiki/Romberg's_test

A body with EDS is like a house built with weak mortar. 

Dysautonomic issues with raised heart rate. 90, 100 beats a minute. If you take a beta blocker, you’ve altered the beta receptors on your heart and slowed the heart down, but that doesn’t stop the brain from telling the heart to beat at 100 beats a minute. All your sensory input is still sending odd readings 

At night, most people don’t taste or smell very well; shut them down. (Some are hyper sensitive.) But the proprioceptive is still active—if your arm is at a weird angle, it’s sending that message back to your brain. 

If you’re on a treadmill, and blood isn’t being delivered because you’re “biased toward higher sympathetic tone,” and you’re asking biggest muscles to work, but have vasal constriction going on in your peripheral veins, you’re going to fatigue pretty quickly. You go into anaerobic metabolism: your cells don’t have enough oxygen to work correctly, so you start to break muscle down to get a little fuel—that’s anaerobic. You start firing pain fibers, mostly C fibers, which is what your sympathetic nervous system uses to transmit. So you’re putting lighter fluid on the embers you’re trying to calm. That’s why when you hit your thumb with your hammer, your heart rate goes up; pain fires sympathetic. So we look at the autonomic first and get that under control, then try easy exercises. 

EDSers are often “cut down in their prime”—lots of drive when young, almost superhuman, but that eventually fails, then steep decline. 

[abrahamshipwreck]

Sooo how does one get tested for dysautonomic disorders because I have had very similar symptoms (anhydrosis, heat/cold intollerance, heart issues, low blood pressure, syncope, vertigo on standing etc) but dont want to self diagnose and not sure how to bring it up to a medical professional

[maxarat]

Starting this off by saying DNI if you ship Solangelo, Perico, or Jasico. This is not optional, I will block you. Other Nico shippers and Nico self-shippers are ok to interact!

Ariel Brown is one of Apollo's children, and one of the few that survived the Second Titan War. Ariel grew up with a single mother, a nurse at a hospital in New Jersey. He grew up going to Camp Half-Blood whenever there wasn't school since he was 11, starting the same winter Nico first went to camp. Soon into his teenhood, Ariel was diagnosed with a dysautonomic disorder and autism, on top of the ADHD and dyslexia he'd been getting care for since he was little. Ariel was always a cheery, adventurous, and friendly kid, and that didn't change when he learned that the most he could do to fight was be a sniper. He was a little disappointed at not being able to go on quests, but poured his energy into being a medic since that he could do. Ariel's a few months younger than Will and had no interest in leadership, so after the war there was no fight for who would be counselor. When Ariel and Nico first met, they were fairly close, and when Nico ran away Ariel was sad at loosing his first friend from camp. They met again at the Battle of the Labyrinth and everytime after that, no matter how dire the circumstances, Ariel was overjoyed to see Nico. In the battle against Gaia, Ariel encouraged Nico to do what he thought he could do and had a long talk with Will afterward about his infrantilization. They spent most of the time afterward together, reconnecting, and are very close by the Burning Maze, getting together on the down-low in the middle of that book. Also Ariel keeps his hair tied with a thick red ribbon as a nod to the Disney Princess.

Ariel loves his siblings, except sometimes Will. They bicker often, but if it's for their other siblings they can get along. He isn't a fan of Apollo, but does appreciate his growth during his trials.

It feels important to note that I am not diagnosed with a dysautonomic disorder, but I'm physically disabled without a diagnosis and my friend and I think dysautonomia lines up well (they are diagnosed with a dysautonomic disorder)

Niciel headcanons under the cut :)

T4T, Autistic4Autistic, Disabled4Disabled, Aspec4Aspec, and Jew4Jew

Goth4Grunge also

They paint each other's nails and do each other's hair

Nico's autonomy is respected

Much hand holding

Nico teaches Ariel Italian

Ariel sings to Nico when he's stressed

They don't care if people knkw they're together or not but don't really tell them unless asked or close friends

[cuntess-carmilla]

If you get (what you may think is) seasonal depression but during the summer instead of during winter, check for symptoms of dysautonomia.

For a lot of people with dysautonomic disorders (POTS included) hot environments are hell. This goes x2 if the hot environment you’re in is humid rather than dry and things such as hot showers and saunas make you dizzy or tired (nothing worse for us than humid heat).

This happens because the extra warmth makes our blood vessels dilate even more than they already inadequately do and too dilated blood vessels may make your blood pressure low or unstable, which in turn means your upper body is deprived of enough oxygen (your blood is pooling down in your feet instead of being pushed upwards thanks to more constricted blood vessels). Most worryingly, our brains are being deprived of enough oxygen.

An oxygen deprived brain, especially if deprived of it persistently through time, causes chronic fatigue and brain fog, two symptoms often misdiagnosed as depression, since you have no energy to even think, focus or have good memory (brain fog), much less to be active, experience pleasure/enjoyment, or be motivated. It can also reduce sex drive, among many other things.

On top of that, experiencing chronic fatigue and brain fog is very likely to make you genuinely depressed, because it’s very debilitating, confusing, emotionally miserable and hard to combat.

[horce-divorce]

Holy shit seconding that, i am so so sorry about your grandma. I've heard a lot of people take to calling POTS a salt deficiency when they don't want to explain why they need so much.

My cardiologist told me himself that the normal sodium intake is 2-3g per day and I should shoot for 6-12g. Of sodium. Per day. Just me. 6 to 12 GRAMS. Per DAY.

I usually drink 1-2 liquid IVs per day, plus eating a high sodium diet, adding salt to everything I eat (including my water!), and I still don't get enough salt, and I can FEEL IT, especially during times when I don't have enough (or when I've just woken up and am dehydrated).

But also adding that yeah the tachycardia is not only a staple symptom, dysautonomia can cause your heart to stop. Dysautonomia meaning dysfunction of the autonomic nervous symptom, ie processes that SHOULD be automatic to you- heart rate, breathing, sleep, digestion etc. If you're forced to do a tilt table test, part of the reason they do it is specifically to see how bad they can make you crash to prove its POTS, and if you have a hard enough dysautonomic crash your heart can stop. (TTT is barbaric and unnecessary IMHO but I thought this was worth mentioning.)

I don't say that to alarm anyone, but I've also seen a lot of people who either think it's just 'PoTS' without knowing what that means, or who know the acronym but don't understand that it's multiple autonomic functions that are affected, not merely your heart rate. When I first had it mentioned to me, I dismissed it myself because I thought it was 'just tachycardia' and 'it didn't bother me.' Fast forward 10 years and uncountable medical tests later, I've realized POTS is the main thing that disables me, and not just with having a resting HR of over 100.

And it is NOT rare. Doctors have told me for a decade that it's too rare for them to even bother educating themselves about, and now the numbers have surged thanks to COVID. I got mine from swine flu but as mentioned above, there are other things that can cause it!

Anyway, we need better education about "rare disorders" to begin with, but POTS is becoming so common there's no excuse for Doctors not to familiarize themselves anymore. I admit i dont know which type of POTS i have, but I'm fairly certain that regardless of which type, telling someone with it to go no sodium... That's straight up medical malpractice. I'm so sorry.

I definitely overdid it yesterday. The Exhaustion is real. I forgot just because my heart wasn't bounding out of my ribcage, I'm still a bitch with chronic fatigue.

But I'm a chronically fatigued bitch with a resting heart rate of 68, so I'll take it.