What Is Postural Orthostatic Tachycardia Syndrome (POTS)?

Postural Orthostatic Tachycardia Syndrome (POTS) affects between 1 and 3 million Americans, typically women between 15 and 50 years old. It is a dysfunction of the autonomic nervous system, or a dysautonomia disorder, which involves blood pressure, heart rate, digestion, urination, breathing, and body temperature.

As the Standing Up to POTS web site explains, about half of patients with POTS experience chronic nerve pain. Other symptoms may include frequent headaches, stomach aches, chest pain, joint pain, chronic fatigue, cognitive dysfunction, poor sleep, and gastrointestinal issues.

Because POTS patients’ blood vessels do not properly constrict, blood pools in their abdomen and legs. This causes a shortage of blood to be pumped to the brain and may leave them feeling an almost constant lightheadedness. They can become particularly dizzy when they transition from a sitting to a standing position.

POTS can be triggered by such as conditions as pregnancy, rapid weight loss, surgery, trauma, or a viral infection such as mononucleosis or Lyme disease. However, we don’t know why the autonomic nervous system malfunctions. Most people who experience these types of stressors do not develop POTS.

Some Doctors Fail to Take POTS Seriously

A CNN article titled, “A doctor said it was all in her head, but it was ‘the most common condition you’ve never heard of,’ ” points out that very few doctors are educated about POTS and may incorrectly diagnosis patients who have it. There is a wide range of potential symptoms, and patients who suffer fewer impairments may be less likely to receive a proper diagnosis.

At the onset of the disease, most women with POTS are young and healthy, and they might find it difficult to convince doctors to take their symptoms seriously. Like many other chronic pain patients, people with POTS are often accused of being manipulative or melodramatic. Doctors may believe POTS sufferers are “only” depressed or are exaggerating their symptoms to get attention.

Limited Treatment Options for POTS

Even when doctors are able to rule out other conditions and correctly diagnose POTS, treatment options are limited. Doctors may recommend that POTS patients wear compression stockings, drink more water, build up to getting an hour of reclined exercise each day, and add salt to the diet.

Some medications used off-labeled may help, but there are no medications that have been approved specifically for POTS treatment. Full and partial recovery is possible, but some POTS patients do not recover and may be permanently bedridden. According to one survey, 33% of people with POTS had applied for disability payments.

Perhaps the most important treatment doctors can provide POTS patients is to believe them when they report their symptoms. Listening to their stories, and validating their pain, is a service doctors can provide. It doesn’t cost anything, and it can make all the difference to people who have been dismissed by other doctors who are reluctant to treat them.