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When Autopilot Fails: Dysautonomia and EDS

By Antonia @ Unremarkable MePublished June 2025

When Your Body Forgets the Basics: EDS and Dysautonomia

Living with Ehlers-Danlos Syndrome (EDS) is a bit like managing a team of wildly underqualified interns. One’s trying to quit, one’s having a breakdown in the stairwell, and the rest are mostly googling “how to function.” Your joints are forever attempting an escape act, your heart rate spikes from brushing your teeth, and your body? It’s running a high-stakes simulation on winging it.

Welcome to dysautonomia: where your body's autopilot system behaves like a satnav on too much caffeine and not enough therapy.

But make no mistake—this isn’t just about “feeling a bit dizzy.” Dysautonomia is a whole spectrum of disorders that affect how your body controls the things you’re not supposed to think about: heart rate, blood pressure, temperature, digestion, bladder control—the background noise of survival. And if you’ve got EDS? There’s a very real chance you’ve already been ghosted by your own nervous system.


What Is Dysautonomia?

Your autonomic nervous system (ANS) handles all the behind-the-scenes magic: breathing, circulation, temperature control, digestion, pupil dilation… basically, the autopilot that keeps you alive without needing an instruction manual.

Dysautonomia means that system is glitching. Badly.

And because it runs through nearly everything, the symptoms are often wide-ranging, wildly inconsistent, and confusing as hell. One minute, you’re fine-ish. The next? You’re horizontal, drenched in sweat, with a heart rate that belongs in a techno remix.


Types of Dysautonomia (and Why EDS Makes It Worse)

Here’s your no-nonsense guide to the usual suspects—plus why they love showing up to the EDS party uninvited:

1. POTS (Postural Orthostatic Tachycardia Syndrome)

⭐️⭐️⭐️⭐️⭐️ Extremely common with EDS

What it is: When you stand up, your heart rate jumps 30+ bpm. Your blood pools in your legs, your brain panics, and everything starts to tilt.

Symptoms: Dizziness, nausea, fatigue, shaking, brain fog, palpitations, feeling like you might faint—or combust.

Why it hits EDS: Those bendy connective tissues mean floppy veins. Your circulation struggles, and your heart overcompensates with every step.


2. Neurocardiogenic Syncope (NCS) / Vasovagal Syncope

⭐️⭐️⭐️⭐️ Very relevant to EDS

What it is: Your body drops your heart rate and blood pressure in response to triggers like heat, standing too long, or stress—often with no warning.

Symptoms: Sweating, nausea, tunnel vision, lightheadedness… followed by a face-first date with the floor.

The EDS link: Hypersensitive nerves + poor vascular tone = drama. And sometimes, unconsciousness.


3. Orthostatic Hypotension (OH)

⭐️⭐️⭐️ Sometimes crops up

What it is: Blood pressure plummets when you stand, unlike POTS where the focus is on heart rate.

Symptoms: Dizziness, blurry vision, unsteadiness—especially first thing in the morning or after meals.

Why it shows up: Often secondary to things like small fiber neuropathy or medication. More likely in complex EDS or hEDS with additional complications.


4. Inappropriate Sinus Tachycardia (IST)

⭐️⭐️⭐️ Sneaky but present

What it is: Your heart rate is high all the time, for no good reason. Like your body thinks it’s always late for something.

Symptoms: Palpitations, shortness of breath, exercise intolerance, internal buzzing.

The EDS angle: Often overlaps with POTS. Another symptom of a nervous system that’s gone rogue.


5. Autoimmune Autonomic Ganglionopathy (AAG)

⭐️ Rare, but not impossible

What it is: An autoimmune condition that directly attacks the nerves responsible for autonomic function.

Symptoms: Extreme blood pressure swings, dry eyes/mouth, severe digestive issues, bladder dysfunction.

Worth noting: Rare in EDS but often misdiagnosed as POTS. If your symptoms are off-the-charts intense, this one’s worth investigating.


6. Secondary Dysautonomia

⭐️⭐️⭐️⭐️⭐️ A major EDS villain

What it is: Dysautonomia caused by another issue—like a cerebrospinal fluid (CSF) leak, Chiari malformation, or craniocervical instability.

Why it’s huge: EDS often causes structural instability in the spine and skull. When your brainstem is squashed or your CSF is leaking out, your ANS goes haywire.


Can You Have More Than One?

Yes. And it’s maddening. Most of us with EDS aren’t dealing with just POTS or just OH—we’re juggling multiple dysfunctions like a circus act with faulty safety nets. Which one’s playing up today? That depends. Could be the weather. Could be your hormones. Could be Mercury in retrograde.


The Emotional Toll

Being dismissed with “It’s just anxiety” or “That’s just part of EDS” isn’t just lazy—it’s dangerous.

Dysautonomia can derail your education, your job, your relationships, and your independence. But with the right diagnosis and targeted treatment? You can reclaim parts of yourself you thought were gone forever.

This isn’t a personality quirk. It’s a medical condition. And it deserves more than a yoga class voucher and a patronising smile.


Final Thoughts

Living with dysautonomia when you have EDS isn’t quirky. It’s not a TikTok trend. It’s not “just a bit dizzy.”

It’s waking up every day and having to manually run systems your body was supposed to handle without asking. It’s learning to read your own vital signs like a weather forecast. It’s second-guessing every meal, every movement, every plan—because at any moment, your nervous system might just… glitch.

And the worst part?It’s not even the symptoms. It’s the silence.

The endless parade of medical professionals who tell you, “It’s probably just anxiety.” The friends who drift away because you “cancel too often.”The family who mean well—but don’t understand how terrifying it is to stand up and not know if your body will follow through.

This condition steals things slowly. Energy. Confidence. Autonomy. Until you start to wonder if you’re just overreacting. You’re not.

You’re adapting to a broken operating system—without a manual, without a reset button, and far too often, without the support you deserve.

But here’s the truth:You are not lazy. You are not weak. You are not imagining it.

You are managing a body that misfires in the most inconvenient, invisible ways. And the fact that you’re still here, still asking questions, still trying to make sense of it all? That’s not just survival. That’s resilience.

So if today is a lie-flat-and-sip-electrolytes kind of day, honour it. If standing feels like Everest in stilettos, don’t climb it alone. And if someone tells you it’s “just EDS,” remind them: EDS is a full-time job. Dysautonomia is its chaotic side hustle. Together? They’re exhausting.

But you? You’re still showing up.

That counts for everything.

Support, Tools & Resources

Information & Research

Symptom Tools

  • Compression wear: Skinnies, Jobst, Sigvaris

  • Electrolytes: Nuun, Liquid I.V., SaltStick

  • Medical ID bracelets, symptom trackers

  • Apps: Manage My Pain, Bearable, CareClinic

Emotional Support

  • Mind UK – 0300 123 3393

  • Samaritans UK – 116 123

  • NHS 111 – For non-emergency advice


Because when your body forgets how to regulate itself, it’s not “quirky.”It’s not “interesting.”It’s a system failure.

And it deserves solutions—not silence.

💛 Special thanks to @WriterStace over on Bluesky, who accidentally shoved me headfirst into this particular rabbit hole. A glitchy, eye-opening, slightly empowering descent. Thanks for being part of the reason we keep asking better questions.

— Love, Antonia @ Unremarkable Me


 
 
 

© 2025  Unremarkable Me

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