Let’s talk about the symptoms of postural orthostatic tachycardia syndrome (POTS); you know, the ones that leave you feeling like your body forgot how to stay upright. You might be dealing with POTS syndrome if you often feel like you just ran a marathon whenever you get off the couch.
The difficulty addressing postural orthostatic tachycardia syndrome starts with the reality that a physician might dismiss your symptoms as anxiety or some other vague diagnosis, so you don’t receive the treatment your body desperately needs.
Postural Orthostatic Tachycardia Syndrome (POTS) Symptoms: The Hallmark Signs
One of the classic symptoms of postural orthostatic tachycardia syndrome is a heart rate that rises by more than 30 beats per minute (bpm) or exceeds 120 bpm within 10 minutes of standing up. However, that’s just the tip of the iceberg, as POTS syndrome can be associated with several other uncomfortable symptoms, including:
- Lightheadedness or dizziness that sometimes leads to fainting
- Brain fog that makes it difficult to think or concentrate
- Extreme fatigue that does not get better regardless of how well-rested you are
- Heart palpitations that feel like your heart is trying to jump out of your chest
- Blurry vision
- Tremors
- Nausea
- Shortness of breath
- Headaches
- Digestive issues like bloating or constipation
The symptoms associated with postural orthostatic tachycardia syndrome frequently exhibit a relapsing-remitting pattern, appearing and disappearing over time. These symptoms often improve when you lie down and are at their worst when you stand.
Causes of POTS: Why Is This Happening?
While the precise causes of POTS remain a mystery, researchers have identified several common underlying causes. This is where the narrative often gets complex, where many medical professionals, unfortunately, stop digging. The condition frequently manifests after:
- Viral illnesses like mononucleosis or the flu
- Pregnancy
- Major surgery or trauma
- Autoimmune conditions like Sjogren’s syndrome or celiac disease
- Periods of bed rest or inactivity
- Spinal CSF leaks (which raises the question as well of whether periods of bed rest were due to the spinal leak and a correlation rather than causation of the POTS, as well as if pregnancy is associated with POTS because of a labor epidural or spinal anesthesia and similarly for surgery with lumbar punctures involved in diagnostics and spinal anesthesia in surgery as well as a potential spinal leak from trauma)
POTS has also been linked to Ehlers-Danlos syndrome, irritable bowel syndrome, chronic fatigue syndrome, and Long COVID.
The most frustrating part for many is that a POTS diagnosis often marks the end of the medical journey rather than the beginning. Many women are left without answers or any deeper investigation into the root cause of their symptoms. This oversight is exactly why understanding secondary POTS is such a significant shift in perspective.
[Related: The Autoimmune Link Between POTS and Thyroid Disease]
Secondary POTS vs. Primary POTS: The Question Nobody’s Asking
Here’s what I’ve learned working with doctors who get it: POTS isn’t always a standalone condition. Primary POTS occurs when the syndrome appears without an obvious underlying cause. Secondary POTS, as the term implies, is POTS syndrome that’s secondary to something else, meaning the symptoms being experienced are being driven by another health problem.
If your POTS is a secondary condition, addressing the root cause could significantly reduce symptoms or completely eliminate them.
Known causes of secondary POTS can include long COVID, spinal CSF leaks, or some form of autoimmune or connective tissue disorders. For older adults, it is more common for POTS to be a secondary manifestation of another medical condition.
So when a doctor slaps a POTS diagnosis on you and calls it a day, they’re missing the most important question: Is this secondary? If so, what is this secondary to? That’s the question that gets patients thinking. That’s the question that leads to real answers. And that’s the question we want you to start asking.
POTS Diagnosis: Why It’s So Often Missed
Getting diagnosed with POTS can feel like you’re running an obstacle course blindfolded. It’s notoriously difficult to diagnose because its symptoms overlap with so many other conditions. Many patients see multiple doctors before getting effective care, and just as many are misdiagnosed with anxiety or other conditions.
Clinicians generally utilize a 10-minute standing test or a tilt table test to identify POTS. They measure your heart rate and blood pressure as you transition from lying down to standing. For adults, a heart rate increase of at least 30 bpm within 10 minutes of standing, without a significant drop in blood pressure, points toward POTS. The threshold is 40 bpm for adolescents.
Other tests used for POTS diagnosis include blood work, an ECG, a Holter monitor, or autonomic function tests. Ultimately, despite the availability of specialized diagnostic tools, a successful POTS diagnosis often depends on finding a clinician who is attentive, inquisitive, and committed to thoroughly investigating your symptoms.
POTS Treatment: What Actually Works?
There’s no established cure for POTS, but receiving appropriate treatment can make a world of difference. Additionally, better understanding a potential root cause can allow for better treatment. In cases where the root cause is reversible, secondary POTS has been known to likewise be reversible, such as in the case of a Japanese woman with a spinal leak identified as the root of her secondary POTS who improved with a correctly administered blood patch.
The first-line approach often focuses on lifestyle modifications:
- Increase fluid and salt intake to boost blood volume (make sure to track your daily consumption of iodine from iodized salt and other sources so you are not exceeding the RDA for iodine and even going beyond the tolerable upper intake limit)
- Wear compression garments to keep blood from pooling in your legs
- Avoid triggers like excessive heat and prolonged standing
- Graded exercise training—start small and build up gradually
- Physical reconditioning and postural training
If lifestyle adjustments fail to produce the necessary results, a physician might introduce medications such as pyridostigmine, ivabradine, or beta-blockers to address particular symptoms.
The most important part of any POTS treatment plan is to identify and treat the underlying cause. That underlying condition is often the key to lasting relief if your POTS is secondary to something else.
Start Asking Questions
If you are struggling with postural orthostatic tachycardia syndrome symptoms, do not accept a diagnosis that offers no clear path forward. POTS syndrome is real; it’s debilitating, and it affects an estimated one to three million Americans.
Start asking: Is my POTS primary or secondary? What could it be secondary to? What tests haven’t been run yet?
That’s the kind of thinking that leads to answers. That’s the kind of advocacy that changes outcomes. And if your doctor isn’t asking those questions, it might be time to find one who will.
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