If you’re reading this, chances are you’ve been feeling off for a while—and you’re still searching for answers. Maybe your heart races when you stand up. Maybe you’re dizzy, nauseous, constantly fatigued, or your brain feels like it’s stuck in fog. You’ve bounced from doctor to doctor, taken every lab test under the sun, and still no one can quite put the pieces together.
You’re not alone.
Getting diagnosed with dysautonomia is often a long, frustrating road. Many patients go years without answers, sometimes being told it’s “just anxiety,” sometimes being misdiagnosed entirely. But knowing what you’re dealing with—and how to advocate for yourself—is a powerful first step.
Let’s break down what dysautonomia is, why it’s so often misunderstood, and how you can get the right diagnosis and care.
1. Understanding Dysautonomia and Its Symptoms
Before you can get diagnosed, you need to know what you’re actually dealing with—and that’s not always easy when it comes to dysautonomia. This condition doesn’t fit neatly into one box. It shows up in different ways for different people, and it often overlaps with other medical issues, which makes the road to diagnosis a winding one.
What Is Dysautonomia?
At its core, dysautonomia is a dysfunction of the autonomic nervous system (ANS)—the system that controls things your body does automatically, like regulating blood pressure, heart rate, digestion, and temperature. When the ANS isn’t working right, your body can struggle to maintain balance during normal activities, especially when moving from lying down to standing up.
But here’s where it gets tricky: dysautonomia isn’t a single diagnosis. It’s more like an umbrella term, and under that umbrella are several different conditions.
Types of Dysautonomia
Let’s break down a few of the most common types:
- POTS (Postural Orthostatic Tachycardia Syndrome):
This is the one many people have heard of. In POTS, your heart rate jumps up significantly (usually by 30+ beats per minute) when you stand up, but your blood pressure often stays stable. - NCS (Neurocardiogenic Syncope):
This type causes sudden drops in heart rate and blood pressure, which can lead to fainting. It’s often triggered by things like standing for too long or intense emotional stress. - Orthostatic Hypotension:
Here, the issue is a drop in blood pressure—not just a heart rate spike—when standing up. It’s more common in older adults but can happen at any age, especially in people with autonomic dysfunction.
Now, here’s where the confusion sets in.
“I have all the POTS symptoms, but my blood pressure drops when I stand up, so my doctor says that means I have orthostatic hypotension and not POTS. It’s all very confusing to me.”
If this sounds familiar, you’re not alone. A lot of patients struggle to figure out where they “fit,” because symptoms often overlap. In fact, it’s possible to have more than one form of dysautonomia—or to be misdiagnosed because the differences between these types aren’t well explained by general practitioners.
Common Dysautonomia Symptoms
No matter the type, many dysautonomia symptoms look and feel the same. Some of the most common include:
- Dizziness or lightheadedness, especially when standing
- Fainting or near-fainting episodes
- Heart palpitations or feeling like your heart is racing
- Chronic fatigue
- Nausea or gastrointestinal issues
- Brain fog or trouble concentrating
- Shakiness
- Shortness of breath
- Cold or discolored hands and feet
These symptoms can fluctuate throughout the day and may not always be visible to others. That’s part of the emotional challenge too—dysautonomia is largely invisible, and yet it can completely disrupt your life.
2. The Diagnostic Process: Step-by-Step Breakdown
If you’re dealing with symptoms like dizziness, brain fog, rapid heartbeat when standing, or sudden fatigue, you might already suspect something is off—but getting to a clear diagnosis? That’s where things can get frustrating. Dysautonomia, including subtypes like POTS (Postural Orthostatic Tachycardia Syndrome), often flies under the radar, especially because symptoms can seem vague or overlap with other conditions. Here’s how the diagnostic process typically works, step by step.
Step 1: Initial Consultation – Don’t Ignore Vague Symptoms
The journey usually starts with your primary care provider (PCP). Maybe you’ve mentioned that you feel faint when you stand up or that you’re constantly tired, but your blood work comes back normal. It’s easy for these symptoms to be brushed off as anxiety, dehydration, or just stress.
And here’s the thing—many dysautonomia patients have a story like this.
“I was misdiagnosed with vertigo for years,” one patient shared. “Then my rheumatologist mentioned POTS after several doctors didn’t find anything. Eventually, a cardiologist confirmed the diagnosis with a 48-hour heart monitor.”
The key here? Keep pushing if your symptoms persist. Your body knows something is off. Listen to it, and find a provider who will too.
Step 2: Getting Referred to the Right Specialist
If your symptoms point to possible autonomic dysfunction, your PCP might refer you to a neurologist or cardiologist—ideally, someone with experience in dysautonomia. These specialists can evaluate your nervous system’s ability to regulate heart rate, blood pressure, temperature, and more.
Not all specialists are familiar with dysautonomia, so it’s okay to ask questions like:
- “Do you treat patients with POTS or autonomic disorders?”
- “Are you familiar with the tilt table test?”
This is where Dr. Sarah Diekman stands out. She’s a physician who not only treats dysautonomia but lives with it herself, so she understands how symptoms can evolve and how to advocate for the right tests. Whether you’re starting from scratch or looking for a second opinion, she can help guide you through the maze of referrals, testing, and diagnosis.
Step 3: The Diagnostic Tests – What They Are and What They Tell You
Once you’ve found a provider who takes your symptoms seriously, they’ll likely recommend a few specialized tests to confirm dysautonomia:
Tilt Table Test (TTT)
This is one of the most common tools used to diagnose POTS and other forms of dysautonomia. You’ll lie flat on a table that tilts upright, while your heart rate and blood pressure are monitored.
If your heart rate spikes abnormally when standing, that’s a clue your autonomic nervous system isn’t working right.
Sweat Test
This measures how well your body sweats in response to heat or stimulation—a key indicator of autonomic nerve function. Abnormal sweat patterns can help diagnose certain forms of dysautonomia, especially those linked to small fiber neuropathy.
Valsalva Maneuver
During this test, you’ll breathe out forcefully through your mouth while keeping your nose pinched shut—basically mimicking what it feels like to blow up a balloon with your mouth closed. Your heart’s response to the pressure helps doctors assess your autonomic control.
Each of these tests gives providers a more complete picture of how your body’s automatic systems are working—or not working.
Types of Doctors and Specialists to Consult — Who Can Diagnose Dysautonomia?
Who Can Diagnose Dysautonomia?
The Short Answer: Not just any doctor.
Getting an accurate dysautonomia diagnosis often takes time—not because it’s rare, but because it mimics a lot of other conditions and spans multiple body systems. You might experience heart palpitations and get referred to a cardiologist, then develop brain fog and end up with a neurologist, all while still feeling like no one is connecting the dots.
So who can diagnose dysautonomia?
Let’s break it down.
Neurologists
Neurologists often get involved when symptoms include fainting, dizziness, numbness, or brain fog. Some specialize in autonomic disorders specifically, and they’re trained to interpret tests like the tilt table test, QSART, and autonomic reflex screen. Not all neurologists have this focus, so make sure you ask directly if they’re experienced in treating dysautonomia or conditions like POTS.
Cardiologists (Especially Electrophysiologists)
Because dysautonomia frequently affects heart rate and blood pressure, many patients first see a cardiologist—especially those experiencing tachycardia, chest discomfort, or episodes that feel like panic attacks but aren’t. Electrophysiologists, a subspecialty of cardiology, are often the ones who identify POTS (Postural Orthostatic Tachycardia Syndrome) and related issues.
Autonomic Dysfunction Specialists
These are the unicorns of the medical world—hard to find but incredibly valuable. Some larger medical centers or academic hospitals have autonomic clinics where care is multidisciplinary, and the specialists are trained specifically in autonomic nervous system disorders. This is where you’ll likely find the most comprehensive care, though access can be limited by geography or referral requirements.
A Real-Life Diagnosis: From Back Surgery to POTS
Sometimes dysautonomia shows up when you least expect it.
“I had emergency back surgery after a collapsed disc. While I was recovering in the hospital, my heart rate was all over the place—crazy high just from standing up. The doctors thought it was just from the pain or stress. But a cardiologist noticed something wasn’t adding up. He referred me to a specialist who worked closely with electrophysiologists, and that’s when I got the diagnosis: POTS.”
Stories like this are more common than you might think. Dysautonomia symptoms often get chalked up to anxiety, dehydration, or recovery-related fatigue. It takes someone with the right training—and curiosity—to dig deeper.
When Should You Seek a Second Opinion?
If your doctor brushes off your symptoms, says “everything looks normal,” or insists it’s just anxiety without further testing, it’s time to seek a second opinion.
You are not overreacting. Dysautonomia is often misdiagnosed, or not diagnosed at all, simply because it doesn’t show up clearly on routine tests. If you know something’s off, trust your gut and keep pushing for answers.
Here are some signs it might be time to get another perspective:
- You’ve seen multiple providers but still don’t have a diagnosis.
- Your symptoms are worsening or evolving without explanation.
- You’ve been given vague labels like “stress” or “deconditioning” but no treatment plan.
Second opinions can lead to first breakthroughs. Keep asking questions. Keep looking for doctors who listen—and know what to look for.
Common Diagnostic Tests Explained
So, you’re feeling dizzy when you stand up, your heart races out of nowhere, or you’re constantly exhausted—and now your doctor is mentioning dysautonomia. But how do they actually diagnose something that’s often invisible and varies so widely from person to person?
Let’s break down a few of the most common diagnostic tests doctors use to confirm dysautonomia and related conditions like POTS (Postural Orthostatic Tachycardia Syndrome). Don’t worry—this won’t be overly technical. Just the need-to-know stuff, in plain language.
Tilt Table Test: The Gold Standard for Diagnosing POTS
If your doctor suspects POTS or another form of dysautonomia, there’s a good chance they’ll recommend a tilt table test. This is one of the most direct ways to measure how your body responds to changes in position—especially from lying down to standing up.
Here’s how it works:
- You lie on a motorized table, comfortably strapped in.
- The table tilts you upward (usually to about a 60–80 degree angle), simulating standing.
- Meanwhile, your heart rate, blood pressure, and symptoms are carefully monitored.
The whole idea is to see how your autonomic nervous system handles gravity. For people with POTS, the heart rate may jump by 30 beats per minute or more within 10 minutes of tilting. You might also feel dizzy, lightheaded, or unwell—symptoms that mimic your everyday experience.
Why it matters:
This test gives doctors measurable data to support what you’re feeling. It’s one of the clearest tools we have for confirming autonomic dysfunction.
Blood Tests: Ruling Out Other Causes
Blood tests aren’t specific to dysautonomia, but they’re still a critical part of the diagnostic process. They help your doctor rule out other conditions that might be causing similar symptoms—like thyroid issues, anemia, or autoimmune disorders.
Common labs might include:
- Thyroid function tests
- Electrolyte panels
- Vitamin levels (especially B12 and D)
- Cortisol or adrenal function
- Inflammatory markers (like CRP or ANA)
Why it matters:
Dysautonomia is a diagnosis that often comes after other possibilities have been ruled out. Think of these tests as the groundwork—it’s how your care team makes sure they’re not missing anything else that could be treated more directly.
Autonomic Testing: Looking at Your Nervous System in Action
Autonomic testing is a broader category that goes beyond the tilt table. It includes a series of tests that check how your autonomic nervous system is handling various bodily functions—like heart rate, blood pressure, sweating, and breathing.
Some types of autonomic tests include:
- Valsalva maneuver: Measures how your heart and blood pressure respond when you forcefully exhale against resistance.
- Deep breathing tests: Assesses how your heart rate changes with each breath.
- Sweat tests: Evaluates whether your sweat glands respond normally to stimulation (yes, sweating is part of your autonomic system!).
These tests are typically done in specialized labs or autonomic centers with equipment designed to detect even subtle irregularities.
Why it matters:
Autonomic testing can help identify which parts of the system are affected, and whether the dysfunction is consistent with conditions like POTS, NCS, or more complex forms of dysautonomia.
What to Do if You Suspect Dysautonomia: Initial Steps
If you’re reading this, chances are something feels off—and it’s not going away. Maybe you’re lightheaded every time you stand. Maybe your heart races after climbing a single flight of stairs. Maybe you’ve been told it’s “just anxiety,” but that doesn’t sit right with you. Trust that instinct. The first step toward getting a diagnosis starts with believing your body and being ready to speak up for it.
Start a Symptom Journal
One of the most powerful tools you can bring into a doctor’s office isn’t a blood test or a specialist’s referral—it’s your own data. Keeping a symptom journal helps make the invisible, visible.
Document things like:
- What symptoms you’re experiencing
- When they occur (time of day, during activity, after eating, etc.)
- How long they last
- What seems to make them better or worse
- Your heart rate and blood pressure, if you can measure them (smartwatches, blood pressure cuffs, etc.)
Here’s a real-life example from someone who finally got through to their doctors:
“I’m a data analyst, so I tracked EVERYTHING. Doctors didn’t believe me until I showed them heart rate spikes using my Apple Watch, ranging from 20 to 220 bpm daily. Using apps to log symptoms, food intake, exercise, and even mood helped me make a case for my condition.”
Apps like Symptom Tracker, Bearable, or even just Notes and spreadsheets can help you stay organized. Over time, patterns may emerge—and they’ll give your healthcare provider something concrete to work with, especially when tests come back “normal.”
Be Persistent and Advocate for Yourself
Unfortunately, many people with dysautonomia spend months or even years trying to get a proper diagnosis. Why? Because the symptoms are often brushed off, misunderstood, or mistaken for anxiety or panic attacks.
You might hear things like:
- “Your labs look fine.”
- “It’s probably stress.”
- “You’re just deconditioned.”
This is where persistence matters. If a doctor doesn’t take your symptoms seriously, it’s okay to get a second opinion. Or a third. Or to find a specialist who knows what dysautonomia even is. You are not being difficult—you’re being proactive.
Print your symptom journal. Ask questions. Bring someone with you to appointments if that helps. You’re allowed to expect answers, and you’re allowed to keep looking until you get them.
Getting diagnosed with dysautonomia isn’t always a straight line. But every step you take—tracking symptoms, speaking up, and refusing to settle—is a step closer to understanding what’s really going on with your body.
Unique Elements to Add Value
Getting diagnosed with dysautonomia isn’t always a straight path—it’s often winding, frustrating, and filled with more questions than answers. That’s why it’s important not just to understand the clinical process, but also to hear what it actually looks like for real people who’ve been through it. And to make your own journey smoother, we’ve included a practical tool you can take with you to your next appointment.
“My Diagnosis Journey” – A Patient’s Story
“I saw five doctors in two years. Cardiologist, neurologist, even a rheumatologist. Each one ran tests, shrugged, and said, ‘Everything looks fine.’ Meanwhile, I couldn’t stand up without my heart racing. I was exhausted all the time. One doctor actually told me it was anxiety and suggested meditation. I left that appointment in tears.
It wasn’t until I found a clinic that specialized in autonomic disorders that I finally got answers. They listened—really listened. They ran a tilt table test, looked at my full symptom history, and confirmed it: I had POTS. It wasn’t in my head. I just needed the right expert.”
— Anonymous Patient, Maryland
Stories like this are more common than they should be. The truth is, dysautonomia often hides in plain sight, dismissed as anxiety, stress, or general fatigue. That’s why seeing a specialist—someone who knows what to look for—makes all the difference.
Doctor Visit Checklist & Question Guide
To make the most of your doctor appointments, being prepared is key. Many dysautonomia symptoms overlap with other conditions, so walking in with a clear symptom log and questions can help direct the conversation—and ensure nothing gets overlooked.
Here’s a checklist and question guide you can use (and print out or save on your phone):
Before Your Visit:
- Track your symptoms (duration, frequency, triggers)
- Record your resting and standing heart rate
- Make a list of medications/supplements you’re currently taking
- Note any family history of autonomic or chronic illness
- Write down lifestyle habits (diet, sleep, hydration, activity level)
- Bring past lab work or test results, if available
Questions to Ask Your Doctor:
- “What diagnostic tests do you recommend to evaluate autonomic function?”
- “Could this be related to POTS, NCS, or another form of dysautonomia?”
- “Are there specialists or clinics you’d recommend for further evaluation?”
- “What lifestyle changes might help manage my symptoms?”
- “Would a tilt table test, QSART, or 24-hour heart monitoring be appropriate?”
- “Is there a possibility I’ve been misdiagnosed in the past?”
- “Can we track progress over time, and how will we measure improvement?”
When you ask the right questions, you take control of your healthcare. You deserve clarity—and a care team that’s as committed to understanding your body as you are.
What Type of Doctor is Best for Dysautonomia?
If you’ve been experiencing symptoms like dizziness, brain fog, heart palpitations, or fatigue, and you’ve been told it’s “just stress,” you’re not alone. One of the biggest challenges in getting a proper dysautonomia diagnosis is knowing which type of doctor can actually help—and unfortunately, not all providers are equipped to recognize or treat it.
So, Who Should You See?
Dysautonomia isn’t confined to one medical specialty, which makes things tricky. It’s a condition of the autonomic nervous system, and symptoms can span multiple systems in the body. That’s why many patients see several specialists before finding the right fit. Here are some of the top types of doctors who typically treat dysautonomia:
- Neurologists
Particularly those with experience in autonomic nervous system disorders. They’re often key in diagnosing conditions like POTS (Postural Orthostatic Tachycardia Syndrome) or NCS (Neurocardiogenic Syncope). - Cardiologists
Especially electrophysiologists, who understand how dysautonomia affects heart rate and blood pressure. They can help rule out or confirm cardiac involvement. - Primary Care Physicians (PCPs)
While they may not specialize in dysautonomia, a good PCP can coordinate referrals and help manage care across multiple providers—especially if they’re open to listening and learning. - Rheumatologists, Gastroenterologists, and Allergists
These specialists can be helpful in identifying and managing overlapping issues like autoimmune conditions, mast cell activation syndrome (MCAS), or gastrointestinal dysmotility that often occur alongside dysautonomia. - Clinics that specialize in autonomic disorders
These are rare—but golden if you can find one. At Diekman Dysautonomia, for example, patients receive integrated care from a provider who not only understands the science but also lives with the condition.
Personal Tip: Make Sure It Goes in the Chart
One of the most frustrating parts of seeking a diagnosis is feeling like your concerns are dismissed or minimized. Here’s something that can help: ask your doctor to document your concerns clearly in your chart. It’s a small but powerful way to advocate for yourself and ensure there’s a record of your symptoms and persistence.
Personal story:
“I learned to say, ‘I’d like it noted in my chart that despite my symptoms, I’m still advocating for a proper investigation.’ It changed the tone of the conversation. Doctors took me more seriously because I was making it clear that I wasn’t going to let this go—and I had a paper trail to prove it.”
This doesn’t mean you need to be combative. It means you’re being proactive about your health—and that’s your right.
New Treatment Options for Dysautonomia
Getting a diagnosis of dysautonomia can be overwhelming—but for many, it’s also a relief. Finally, there’s a name for what you’ve been feeling. The next question is: What can I do about it?
The good news? While there’s currently no cure for dysautonomia, treatment options have come a long way, and new approaches are helping patients live fuller, more manageable lives.
Innovative Approaches to Dysautonomia Treatment
Dysautonomia affects people in different ways, which means treatment has to be personalized. There’s no one-size-fits-all fix, but here’s a breakdown of some of the latest and most effective tools in managing the condition:
Medications
Doctors may use a mix of medications to help regulate blood pressure, improve circulation, or manage nerve signaling. Some options include:
- Beta blockers (to control heart rate)
- Fludrocortisone (to boost blood volume)
- Midodrine (to increase blood pressure)
- SSRIs or SNRIs (not just for mood, but to modulate autonomic responses)
Newer studies are also exploring the role of immunotherapy and anti-inflammatory medications in specific dysautonomia cases, especially when autoimmune or mast cell issues are involved.
Lifestyle Adjustments
These aren’t your average wellness tips—they’re foundational for dysautonomia patients:
- Increased salt and fluid intake to support blood volume
- Compression garments to reduce blood pooling in the legs
- Small, frequent meals to avoid post-meal drops in blood pressure
- Sleep hygiene routines to support the body’s healing and regulation
Dr. Diekman often works with patients to tailor lifestyle changes that are realistic and sustainable—no guilt-tripping, just supportive steps forward.
Physical Therapy
Specialized physical therapy—especially graded exercise therapy (GET) or reconditioning programs—can be incredibly helpful. These are not traditional gym workouts, but carefully structured movements that build tolerance over time without triggering symptoms.
Therapists trained in autonomic rehabilitation know how to start slow and work with your body’s unique limitations.
Managing Dysautonomia After Diagnosis: What It Looks Like
Being diagnosed is just the beginning—but it’s also a turning point. Once you have a name for what’s going on, you can begin to take back control, one step at a time.
At Diekman Dysautonomia, Dr. Sarah Diekman brings a rare combination of clinical expertise and lived experience to each treatment plan. As someone who’s been on both sides of the diagnosis, she understands the frustration of trial-and-error treatments, and the emotional rollercoaster that often comes with chronic illness.
Her approach is deeply patient-focused, aiming not just to reduce symptoms, but to help patients:
- Regain independence
- Return to school or work
- Re-engage with family and friends
- Set realistic goals and actually reach them
It’s not always a straight line—but with the right tools and support, quality of life can improve dramatically.
Conclusion
If you’ve made it this far—either in the blog or in your real-life journey toward a diagnosis—you already know that dysautonomia isn’t something most doctors catch on the first try. The process can be long, confusing, and honestly, exhausting. But here’s the truth: you are your best advocate, and your persistence matters.
Too many patients get brushed off, misdiagnosed, or told it’s “just anxiety.” That doesn’t mean your symptoms aren’t real. It means you haven’t found the right provider yet. And while it’s frustrating, don’t give up. Keep track of your symptoms, bring someone to appointments if you need support, and don’t be afraid to ask tough questions or seek second opinions.
Getting a dysautonomia diagnosis often requires determination and self-advocacy, but it’s worth it. Because once you have answers, you can start building a care plan that actually helps you feel better—and that changes everything.
At Diekman Dysautonomia, we understand this journey because we’ve lived it. If you’re still searching for someone to take your symptoms seriously, we’re here. Call us at 833-768-7633 to schedule a consultation. Let’s figure it out—together.
