What is POTS disease?
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Health and Wellness

1 In 100 Teens Have POTS, But You'd Never Know It

POTS is an invisible illness I deal with every day.

1 In 100 Teens Have POTS, But You'd Never Know It
Trinity Tew

POTS. Postural orthostatic tachycardia syndrome.

Try saying that three times fast. Then, try living with it. POTS is a dysautonomia disease, meaning the autonomic nervous system malfunctions. Although it is considered a "rare" disease, it is estimated to affect 1 out of every 100 teens before they reach adulthood.

Why is it considered "rare" then? Because not enough people, or doctors, know about it. In fact, many people with POTS either go undiagnosed or misdiagnosed with anxiety and depression. How could you be diagnosed with severe anxiety when it's your blood pressure that's malfunctioning? Among an extensive list of effects, some symptoms are: difficulty standing still, fatigue, lightheadedness, nausea, GI symptoms, brain fog or mental clouding, palpitations or chest discomfort, shortness of breath or difficulty breathing, presyncope, neuropathy, migraines, chronic pains, muscle weakness, tremors, insomnia, exercise intolerance, blurry vision, pupil dilation and constriction, inability to or increased sweat, inability to regulate body temperature, coat-hanger pain, and extreme thirst.

Twenty-five-percent of people with POTS are so debilitated by this disease they can't attend work or school. Research has compared POTS to having COPD and congestive heart failure. It has also been compared to someone fasting from food and liquids for 24 hours, having the flu, running a marathon, donating a pint of blood in a room with a temperature of 100 degrees, spinning around in circles a few times, then standing motionless.

I cannot honestly tell you how many times I have felt like that...I lost count. It takes someone with POTS three-times the amount of energy as it does a healthy person to simply stand. Blood pooling is also a common symptom, so our feet and legs often turn the color of tomatoes. This is because most of the blood in POTS patients remains in the lower half of the body. This is also why laying down relieves some symptoms — it is returning blood to the rest of the body. Because of the uneven distribution of blood, it is important for POTS patients to exercise regularly, even though it is often much more difficult for us, have a large salt intake, hydrate more than the average suggestion, and stay away from caffeine.

Living with POTS is difficult, frustrating, and can seem hopeless.

People do not believe you when you list your symptoms because you look healthy. And there is no cure. There are medications and therapies that attempt to curve, or lessen, the effects of the disease, but nothing can cure it. Most of the time, it takes many trials and errors for each individual patient to figure out what combination of medications and therapies help them the most. For me, it took around five years to get diagnosed, then another year or so to figure out what worked best for me. However, what worked best in the beginning has since changed. This is because our bodies are always changing — especially those of POTS patients.

If you have even the slightest inclination that you might have POTS, ask your doctor about having a tilt-table test — that's the test performed to determine if someone has POTS. It doesn't hurt to try. There is an estimated 1,000,000-3,000,000 Americans with POTS right now, so why be one of those large majority who goes undiagnosed? Educate yourself, research this disease, and help me raise awareness. I would love to more people know, more people have a definitive diagnosis, and more research to go into finding a cure.

Not enough people, or doctors, know about it. In fact, many people with POTS either go undiagnosed or misdiagnosed with anxiety and depression. There is no cure. Educate yourself, research this disease, and raise awareness.

For more information, follow these links:

Blog about POTs

POTS explained by doctors


Dysautonomia International

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