Living with Postural Orthostatic Tachycardia Syndrome (POTS)

Parenting a child living with Postural Orthostatic Tachycardia Syndrome may seem daunting, but you're not alone. From hydration tips to diet recommendations to compression garments, our experts explore various lifestyle changes that can help your child feel their best and manage symptoms.

What is POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition where a reduced volume of blood returns to the heart after an individual transitions from lying down to standing up. Patients with POTS typically experience daily cardiovascular symptoms that affect quality of life, including dizziness, lightheadedness, exercise intolerance and near fainting. 

The onset of POTS symptoms is usually in early adolescence, between 12 to 15 years of age, and more than 75% of patients are female. More than half of cases are preceded by an acute viral illness. Other triggers may be injury (concussion), surgery, puberty or growth spurts.

What healthy lifestyle changes can help manage POTS?

Patients with POTS should focus on non-pharmacologic strategies to manage their symptoms, including improved hydration, a daily exercise program, adequate sleep and eating a well-balanced, heart-healthy diet. A daily hydration goal of 100 ounces of water or lower lower-sugar electrolyte drink is recommended.

Increasing daily salt intake through healthy sources, like electrolyte powders or tablets and salt capsules, may help with symptom management by increasing blood volume in your body. A heart-healthy diet should also be a priority, with lots of fruits, vegetables and lean protein, rather than processed meals.

Exercise is recommended for POTS patients with a goal of 30-60 minutes of daily physical activity. Patients often find it helpful to start with seated or lying down exercises to minimize symptoms.

How can I manage mental health and stress while living with POTS?

Living with POTS can be challenging for you and your child's mental health. Because POTS is an invisible illness, it can be difficult for family, friends and others to understand symptoms. It's important to practice self-care, which can include anything from eating a well-balanced diet to drinking enough water to physical activity. These practices can help to manage stress and improve mental health. Deep breathing exercises or listening to calming music can also help reduce stress.

Often patients find it helpful to surround themselves with a group of trusted individuals and to educate them about POTS so they can help advocate for and assist them when they are not feeling well. Seeking professional help from a therapist or counselor can also help with developing coping mechanisms and providing support. It's important to find strategies that work for you and your child to prioritize your mental health while managing POTS.

Are there any medications or medical items that may help with daily management?

Patients with POTS may choose to wear a watch with heart rate monitoring capabilities to monitor their heart rates. Some patients also own a blood pressure cuff for home monitoring, but owning medical items is not a necessity. We do not recommend starting any medications before being evaluated by a healthcare professional. Lower body compression garments such as compression socks with 20-30 mmHg have been shown to decrease blood pooling with prolonged standing and postural changes in patients with POTS.

Any tips on how to manage sleep with POTS?

Poor quality sleep can affect symptoms of POTS and lead to increased fatigue and daytime sleepiness. Establishing a sleep schedule can be helpful for many POTS patients including falling asleep and waking up at the same time every day (even on weekends). Naps should be avoided if possible and if you must nap, then limit naps to 30-45 minutes.

Regular daily aerobic activity has been shown to help patients fall asleep faster and sleep more soundly. It is recommended that you turn off all electronics/screens 30 minutes before bedtime, as the artificial or blue light emitted by screens can suppress melatonin secretion, making it difficult to fall asleep.

When should someone see a healthcare provider about POTS?

If someone is concerned that they may have a diagnosis of POTS, they should first bring up these symptoms with their pediatrician. A detailed patient history should be completed to determine if medications or other disorders may be causing symptoms. Other tests such as measuring your heart rate and blood pressure while lying down and standing (orthostatic vital signs) can also help your provider determine if a referral to a POTS provider is appropriate.

Learn more about Postural Orthostatic Tachycardia Syndrome here.

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