What’s it like to be a POTSY? Watch my heart rate change in 90 seconds from sitting to standing. No, I’m not running or doing jumping jacks. I’m just standing up. But for someone with POTS (Postural Orthostatic Tachycardia Syndrome), this simple movement can trigger an array of symptoms.
What Is Postural Orthostatic Tachycardia Syndrome (POTS)?
Postural Orthostatic Tachycardia Syndrome (POTS) is a blood circulation disorder that causes a rapid increase in heart rate when standing up from a sitting or lying position. This condition primarily affects the autonomic nervous system, which controls involuntary bodily functions like heart rate and blood pressure.
How Does POTS Affect Blood Circulation?
When you have POTS, gravity causes about 10% to 15% of your blood to settle in your abdomen, legs, and arms upon standing. As a result, less blood reaches your brain, leading to feelings of dizziness or lightheadedness.
For those without POTS, leg muscles help pump blood back up to the heart. However, in POTS, the body struggles to compensate, causing the heart to beat faster in an effort to restore circulation to the brain.
Key Symptoms of POTS:
In addition to the hallmark rapid heart rate when standing, individuals living with POTS experience a range of other symptoms, including:
- Dizziness and lightheadedness
- Exhaustion and fatigue
- Headaches when upright
- Digestive issues and nausea
- Shortness of breath
- Shakiness
- Excessive sweating
- Cold hands and feet (a common symptom)
I’m often asked, “Why are your hands so cold?”—a classic POTS-related symptom!
Three Types of POTS: Which One Affects You?
There are three primary types of POTS:
- Neuropathic POTS – Caused by damage to small nerve fibers, affecting the blood vessels’ ability to constrict.
- Hyperadrenergic POTS – Occurs when the sympathetic nervous system (responsible for fight-or-flight responses) becomes overactive.
- Hypovolemic POTS – Resulting from low blood volume, causing insufficient blood flow to vital organs.
I have both hyperadrenergic and hypovolemic POTS, which means my sympathetic system is constantly on high alert, keeping my body in a “fight-or-flight” state. Imagine an adrenaline like hormone always cursing through your body when you’re in an upright position. My doctor told me I look like there’s a wolf in the corner of the room and I’m waiting for him to pounce on me, due to my posture and my dilated eyes. No wonder why I’m always exhausted!
Living with Hyperadrenergic POTS: Constant Adrenaline
When your body is stuck in fight-or-flight mode, it’s exhausting. After a blood test, my doctors found that my norepinephrine levels were three times higher than normal. This hormone, which is similar to adrenaline, increases every time I stand up, making it hard to relax.
Loud or even soft sounds—like when my husband enters a room unannounced, leads to a startling reaction.
Is There a Cure for POTS?
Unfortunately, there is no cure for POTS at this time. The goal is to manage symptoms and improve quality of life. Through various treatments and lifestyle changes, patients can control many of the symptoms.
How to Manage POTS Symptoms Effectively
Managing and living with POTS requires a multi-faceted approach:
- Hydration: Drinking plenty of fluids helps maintain blood volume, improving circulation.
- Salt: Increasing salt intake can be beneficial for some people with POTS as it helps retain fluids.
- Saline Infusions: I have an implanted central line for daily saline infusions, which assist with hydration and blood volume.
- Medications: There are various medications that can help regulate heart rate and blood circulation.
The Struggle to Stay Upright: The Challenges of POTS
One of the biggest challenges of living with POTS is the difficulty of being upright for extended periods. People with hyperadrenergic POTS are especially affected by exhaustion due to the constant overdrive of the nervous system.
Sleep disturbances are also common due to the ongoing adrenaline surges, making it difficult for the body to relax and recover.
Coping with Severe POTS: Rest and Relaxation
Living with severe POTS often means spending significant time in bed, managing symptoms with rest and relaxation techniques. While there is no cure, ongoing treatments like saline infusions and medication can help regulate heart rate and circulation, allowing for better symptom management.
Living with POTS—What You Need to Know
Living with POTS can be challenging, but it’s important to know that you are not alone. While there is no cure, managing symptoms through hydration, medications, and lifestyle adjustments can make a big difference. Those living with POTS can continue to lead fulfilling lives with the proper support and self care.