Living with Dysautonomia: Understanding the Condition That’s Hard to Explain but Impossible to Ignore
Dysautonomia affects the body's autopilot—like blood pressure, heart rate, and temperature control. It's hard to explain, often misunderstood, but very real. For millions of Americans living with chronic conditions like ME/CFS, long COVID, and dysautonomia, this isn't a hypothetical. It's daily life.
In March 2025, we hosted an "Ask the Expert" session on dysautonomia with Dr. Mark Zinn, a neurocognitive researcher exploring a vital but overlooked truth: in many chronic illnesses, the brain isn't just reacting to disease—it's deeply involved in driving it. Dr. Zinn, also the co-founder of the Neuro Cognitive Research Institute, addressed the relationship between symptoms and brain activities across conditions including ME/CFS, POTS, Sjögren's Syndrome, Long COVID, and Fibromyalgia.
Decoding the Breakdown in the Body’s Control Center
Dr. Zinn uses quantitative EEG (qEEG) and 3D brain imaging (eLORETA) to look beyond standard brain scans. These non-invasive tools map real-time brain activity across networks responsible for attention, movement, autonomic regulation, and energy use. In his words, "all roads lead to the brain."
These tools can detect changes in brain activity that traditional scans miss by pinpointing where activity originates in deeper brain structures. This research focuses on three key networks:
Central Autonomic Network (CAN) – tied to dysautonomia symptoms
Default Mode Network (DMN) – tied to cognition and rest states
Salience and Executive Networks – related to attention and task switching
Key Themes from Patient Experiences
Post-Exertional Collapse
“I crash after just a few hours…” - A Smart Patient
Many participants described crushing exhaustion that arrives after simple activities like folding laundry. Their oxygen levels and blood tests look fine, but Dr. Zinn's scans suggest a failure in the circuits that help the body maintain equilibrium. Instead of rest and recovery, the body is stuck in a constant state of misfiring and overcompensation, interfering with normal cognitive functions.
Hormones and Menopause
One community member navigating perimenopause shared her confusion over flushing, palpitations, and fainting spells. Dr. Zinn explained that estrogen plays a direct role in autonomic regulation, so menopause can worsen symptoms like arrhythmias and blood pressure instability. Another member spoke about being dismissed as anxious—a common experience among women despite having symptoms that reflect real, measurable brain changes.
Reframing "Brain Fog"
"Brain fog" is far more complex than simple forgetfulness, and there are different kinds—it is not one-size-fits-all. As one participant noted: "Mine is more like cognitive shutdown after doing too much. Not just forgetfulness."
Dr. Zinn confirmed that symptoms like slow processing, attention failure, and post-exertional cognitive collapse are neurologically real. The brain lacks energy to process and respond normally due to reduced cortical excitation and dampened arousal pathways.
Why This Matters Now
COVID-19 left millions with lingering symptoms that resemble ME/CFS and POTS. As these conditions enter mainstream awareness, neuro-focused research provides real-time data about how the brain's control systems break down in chronic illness, and how overlap is common among these illnesses.
Since no two cases are alike, it's important to continuously monitor symptoms to capture fluctuations that inform research and patient-doctor collaboration. As Dr. Zinn noted, "Your symptoms reflect real, measurable brain changes. They're not 'all in your head'—but they do involve your brain...Awareness grows because of your courage to speak."
Moving Forward with Dysautonomia
Understanding the neurological basis of symptoms can help patients advocate for appropriate care. The experiences shared in our community highlight both the challenges of living with invisible symptoms and the importance of connecting with others who understand.
By participating in discussions, tracking symptoms, and staying informed about research developments, patients can play an active role in advancing understanding of these complex conditions. Your experiences matter—both for your own care and for helping others who may be at the beginning of their diagnostic journey.
Resources for Understanding Dysautonomia
The NCRI: Dr. Zinn's research institute - TheNCRI.org
Dysautonomia International: Patient advocacy and education - DysautonomiaInternational.org
Dysautonomia Support Network: Provider directory and resources -DysautonomiaSupport.org
Join the conversation in our community to connect with others navigating living with ME/CFS, Long COVID, POTS, dysautonomia, or other similar challenges.