Why It Matters: POTS
Postural Orthostatic Tachycardia Syndrome (POTS) is a chronic illness/condition where the body struggles to regulate blood pressure and heart rate upon standing, leading to symptoms like dizziness, fatigue, and fainting. It can significantly affect daily life, but treatments, including medications and lifestyle changes, offer relief and management options.
POTS is considered relatively rare, affecting approximately 1–3 million people in the United States. It disproportionately impacts women, who make up about 80%–85% of those diagnosed. The condition often begins in teenage years or early adulthood but can affect individuals of any age. Many teenagers diagnosed with POTS experience improvement or "grow out of it" by their 20s, though for others, it remains a chronic condition.
Certain populations are more prone to developing POTS, including those with connective tissue disorders like Ehlers-Danlos Syndrome (EDS), autoimmune conditions, or a history of viral infections. While the cause of POTS is not fully understood, its prevalence may be underreported due to challenges in diagnosis. There is currently no cure for POTS.
The Breakdown:
What Is POTS?
POTS occurs when the autonomic nervous system cannot regulate blood flow correctly, often triggered by standing up. Causes include viral illness, surgery, pregnancy, or conditions like Ehlers-Danlos Syndrome, but many cases remain unexplained.
Symptoms
Dizziness, lightheadedness, fainting
Fatigue, brain fog, difficulty concentrating
Gastrointestinal issues: nausea, bloating, constipation, diarrhea
Triggered by heat, eating, exercise, menstrual changes, or prolonged sitting
Diagnosis
Doctors diagnose POTS through:
Symptom history and blood pressure/heart rate tests
Tilt table tests to observe body reactions to positional changes
Treatment
Medications: Beta blockers, stimulants, vasoconstrictors, and others target specific symptoms.
Lifestyle Changes:
Hydration: 2–3 liters of fluids daily
Salt Intake: 3–10 grams of salt per day
Compression Garments: Waist-high compression stockings
Elevating the Bed: Raise the bed’s head to help the body adapt to gravity
Exercise: Begin with reclined exercises, gradually incorporating upright activities
Self-Management: Avoid heat, plan flexible schedules, and adapt activities based on symptom severity.
Always consult with a medical professional for personalized advice and treatment options!
Chronic illnesses aren’t always visible, so approach others with kindness and understanding!
My Journey:
It’s hard to pinpoint when my POTS symptoms first began. With five other chronic illnesses (CI), a brain injury I wasn't aware of until recently, and overlapping symptoms, it seemed nearly impossible to determine which condition—or combination—was causing which symptom.
In my 20s and 30s, I experienced a few strange episodes. As an avid hiker back then, I occasionally dealt with lightheadedness, blurred vision, and unsteadiness during hikes under specific physical, hormonal, or weather-related conditions. I dismissed these as normal. Once, while volunteering at a cancer fundraiser car wash, I felt so unwell after inadequate hydration that I ended up lying on the floor of a gas station bathroom, chugging Gatorade and snacks just to regain enough strength to stand. Another time, after moving to New Mexico, a simple walk on a hot day left me dizzy, weak, and needing assistance, even when resting in the shade. These events were spread out over time, so I chalked them up to sun poisoning or my asthma.
During my pregnancy, my symptoms intensified to a degree that felt extreme. My doctors reassured me, saying, “This can happen when you’re pregnant.” At the time, none of my chronic illnesses had been diagnosed, so I trusted their explanations. Unfortunately, I ended up hospitalized. After my son was born, my body changed in ways I could no longer ignore.
I started asking my primary care physician (PCP) about my symptoms, but their dismissiveness left me frustrated. Although it was uncomfortable, I advocated for referrals to specialists. Initially, the specialists were dismissive too—they acknowledged my symptoms were atypical but didn’t offer any guesses or diagnoses. I faced many obstacles and doubted myself often. Ultimately, it took three years and numerous ER visits to find the right PCP and a team of specialists who could diagnose and treat my POTS and other CIs.
I’m sharing this not to discourage you but to encourage you to persist in seeking answers. Finding the right medical professionals can take time, but it’s worth it. This journey requires patience and a willingness to push for what you need. Listen to your gut and intuition—they’ll guide you when it’s time to change doctors or seek alternative advice.
Please check out the Chronic Illness section of our Resources page! One of the links there helped me find a neurologist specializing in EDS and POTS. It could help you, too.
Sources for this post:
Your Turn:
Do you have POTS or suspect you might? What has your journey been like? Share your experiences, challenges, and tips for managing symptoms in the comments below. What has worked for you? What questions do you have about POTS?
Your voice can help others feel seen and supported—and who knows, you might even discover new strategies from the community! 🌿
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Until next time,
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