Understanding POTS: Postural Orthostatic Tachycardia Syndrome
If you live with a hypermobility syndrome such as hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD), you may be familiar with Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of dysautonomia—a dysfunction of the autonomic nervous system (ANS), which controls involuntary bodily functions like heart rate, blood pressure, digestion, and temperature regulation. For many, POTS is a challenging and often misunderstood condition. In this post, we’ll explore what POTS is, how it’s diagnosed, common symptoms, effective management strategies, and advanced tools to help monitor and manage the condition. Understanding POTS is the first step toward effective symptom management and improved quality of life.
What is POTS?
POTS is defined as a condition where the heart rate increases by more than 30 beats per minute (BPM) within 10 minutes of standing up without a significant drop in blood pressure. It is a type of orthostatic intolerance, which means the body struggles to maintain adequate blood flow and pressure when moving to an upright position. This dysfunction occurs because the ANS fails to properly regulate blood circulation in response to changes in posture, leading to symptoms like dizziness, rapid heart rate, and brain fog.
For someone without POTS, standing up triggers the brain to make several quick adjustments:
The heart rate and blood pressure increase.
Blood vessels constrict to keep blood circulating properly.
These adjustments ensure that blood is efficiently pumped to the brain, allowing the person to stand without any issues.
In POTS, however, this system malfunctions. While the heart rate increases rapidly, the blood vessels do not constrict effectively. This results in blood pooling in the lower body and a delay in blood reaching the brain, causing symptoms like dizziness, lightheadedness, or even fainting. It’s not just about blood flow—POTS can also impact other systems, making it a complex condition that requires a multifaceted management approach.
Common Symptoms of POTS
Individuals with POTS may experience a wide range of symptoms, and the severity can vary day-to-day. Some of the most common symptoms include:
Dizziness or Lightheadedness: Especially when transitioning from sitting or lying down to standing. This can feel like the room is spinning or like you might pass out.
Fatigue: Persistent, overwhelming tiredness that is not relieved by rest. This can significantly impact daily activities and quality of life.
Heart Palpitations: The sensation of a racing or irregular heartbeat, which may feel like fluttering or pounding in the chest.
Brain Fog: Difficulty concentrating, memory issues, and challenges with word recall, making it hard to focus on tasks.
Nausea and Gastrointestinal Discomfort: Slowed digestion and nausea are common, as the ANS also affects gut motility.
Blood Pooling in the Legs: This can cause swelling, a heavy feeling, or discoloration, as blood accumulates in the lower extremities when the body fails to properly circulate it back up.
Headaches and Migraines: Often linked to the blood flow irregularities and dehydration that are common in POTS.
Temperature Dysregulation: Difficulty maintaining a stable body temperature, which may lead to excessive sweating or feeling cold even in warm environments.
Exercise Intolerance: Feeling exhausted after minimal exertion, which can limit physical activity.
Anxiety or Unease: While POTS is not caused by anxiety, the body’s response to dysregulation can trigger anxiety-like symptoms, making it important to differentiate between the two.
Understanding these symptoms and how they relate to posture and blood flow is crucial in finding the best ways to manage them.
Diagnosing POTS
Diagnosing POTS requires a comprehensive approach, as it shares symptoms with other conditions. Healthcare providers often use the tilt table test or active standing test to measure how the heart rate and blood pressure change when a patient moves from lying down to standing. If the heart rate increases by 30 BPM or more within the first 10 minutes of standing (without a significant drop in blood pressure), POTS may be diagnosed.
It’s important to note that POTS differs from other forms of orthostatic intolerance like orthostatic hypotension, where there is a significant drop in blood pressure but not an increase in heart rate. An accurate diagnosis helps in creating a targeted and effective management plan.
Managing POTS: Practical Tips for Symptom Relief
Managing POTS involves a combination of lifestyle changes, dietary strategies, physical interventions, and, when necessary, medication. Here are some comprehensive strategies that can be integrated into daily routines:
1. Identify and Avoid Your Triggers
Physical Triggers:
Avoid standing still for long periods; if you need to stand, keep moving by shifting your weight or doing calf raises.
Manage exposure to extreme temperatures—both hot and cold—since they can worsen symptoms. For example, take cooler showers and dress in layers.
Avoid lifting heavy objects and rapid posture changes, as these can exacerbate symptoms.
Dietary Triggers:
Hydration is key. Aim for at least 3 liters of water daily, supplemented with electrolytes to maintain blood volume and pressure.
Avoid large meals, caffeine, and alcohol, as these can affect blood flow and heart rate. Small, balanced meals throughout the day can be more effective.
Psychological Triggers:
Stress can exacerbate symptoms, though it’s not the cause of POTS. Incorporating stress-reducing techniques such as deep breathing, meditation, or yoga can be beneficial.
2. Short-Term Countermeasures for Symptom Management
Standing: Engage muscles by crossing your legs, squeezing, or shifting weight to promote circulation.
Sitting: Elevate your feet or sit with knees tucked to reduce blood pooling.
Lying Down: Elevate your legs and pump your feet to encourage blood return to the heart.
Cooling Measures: Apply a cool mist or cold cloth to your face when feeling lightheaded.
Breathing Techniques: Deep, diaphragmatic breathing helps enhance circulation and stabilize blood pressure.
3. Long-Term Lifestyle Strategies
Diet and Hydration: Drinking water with electrolytes is crucial. High-sodium diets (under medical guidance) can help maintain blood volume and pressure.
Compression Garments: Compression socks or abdominal binders can be extremely effective in reducing blood pooling and maintaining circulation.
Gradual Exercise Program: Programs like ADaPT and CHOP offer structured, progressive cardiovascular exercises to help your body adapt. Start with recumbent exercises like cycling and swimming, then gradually transition to upright activities.
Temperature Regulation: Dress appropriately, use fans or cooling devices, and avoid extreme temperatures to help manage symptoms.
Pacing and Rest: Monitor activity levels to avoid overexertion. Pacing and building in rest breaks can prevent flare-ups.
Sleep Hygiene: Maintaining a regular sleep schedule and creating a cool, dark sleep environment can support autonomic function and reduce fatigue.
Mind-Body Practices: Incorporating gentle practices like yoga or tai chi can improve circulation, enhance flexibility, and reduce stress, benefiting both physical and mental well-being.
4. Developing a Personalized POTS Plan
Working closely with a healthcare provider, such as a physical therapist specializing in POTS management, can help you create a personalized care plan tailored to your specific needs. This may include:
Regular Check-Ins: Routine monitoring of your symptoms and progress helps adjust your management plan as needed.
Biometric Monitoring: Utilizing devices like Lumia™ can provide valuable insights into how your body responds to different activities, standing positions, and other stressors. This data can guide lifestyle and activity adjustments for better symptom control.
Monitoring POTS with Biometric Devices: The Lumia™ Advantage
Wearable technology like Lumia™ offers a breakthrough for those managing POTS. Unlike wrist-based devices, Lumia™ is an in-ear device that uses infrared light to monitor blood flow changes through the External Carotid Artery, providing precise, non-invasive measurements that help track symptoms in real-time.
The Lumia Flow Index™
Lumia’s Flow Index™ measures and analyzes blood flow patterns, detecting changes that may indicate symptoms like dizziness or brain fog. By providing continuous monitoring, Lumia™ helps you understand your body’s responses and manage POTS proactively.
Gravity Stress™
Lumia™ also tracks posture changes and calculates Gravity Stress™, helping you understand how standing and movement impact your symptoms. The Lumia™ app then offers actionable insights, allowing you to adapt and optimize your activities.
By using tools like Lumia™, you gain valuable data that empowers you to manage POTS effectively and confidently.
Specialized Exercise Programs for POTS: ADaPT and CHOP
Exercise is an important tool for managing POTS but must be approached with caution. Programs like ADaPT(Autonomic Dysfunction and Postural Tachycardia) and CHOP (Children’s Hospital of Philadelphia) provide structured, evidence-based approaches that start with low-impact exercises, such as recumbent cycling or swimming. These programs help build cardiovascular strength and resilience, gradually transitioning to more upright and weight-bearing activities as tolerance improves.
At Dazzle Health, we integrate these methods into personalized therapy plans, ensuring each client progresses at a pace that suits their needs. Our goal is to help clients build the strength necessary for daily life while minimizing symptom flare-ups.
Introducing the "Steady Steps" 12-Week POTS Program
I’m excited to offer the Steady Steps: A Path to POTS Recovery program—designed specifically for individuals living with POTS. Over 12 weeks, you’ll gain the knowledge, tools, and support needed to manage your symptoms and improve your quality of life.
Personalized Coaching: Tailored guidance to help you navigate challenges and safely progress through exercise phases.
Structured Exercise Plan: Gradual progression from low-impact to upright exercises to build cardiovascular strength.
Weekly Group Sessions: A supportive, understanding community to share experiences and build motivation.
Holistic Approach: Incorporates pacing, posture strategies, and the use of biometric tools like Lumia™.
Expert Guidance: Led by me, Julie Griffis, PT, IHWC, specializing in hypermobility and autonomic dysfunction.
