What is Dysautonomia?
Dysautonomia is a disorder of the autonomic nervous system – the part of the nervous system that is responsible for control of the bodily functions not consciously directed, such as breathing, heart rate and blood pressure control. It results in an imbalance of the sympathetic nervous system (our “fight or flight” responses) and the parasympathetic nervous system (our “rest and digest” responses). Dysfunction of the autonomic nervous system causes many different symptoms in people and may be called different names depending on those symptoms: orthostatic intolerance, POTS, neuro-cardiogenic syncope or dysautonomia.
What is Postural Orthostatic Tachycardia Syndrome (POTS)?
Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance, a condition that often causes multiple symptoms, especially when standing for a long time. When a person with POTS stands up, there is a significant increase in the heart rate above the normal rate and the heart rate stays elevated longer than usual. This heart rate response is key to diagnosing POTS. With position changes, blood pressure may fall, stay the same or increase.
These symptoms are caused by an exaggerated response in the autonomic nervous system. POTS may appear after an illness or vaccination (for example,"mono," flu vaccine), after trauma (for example, a head concussion), after surgery or during or after a growth spurt. Other family members may have POTS. Many people develop POTS without any known cause.
Symptoms of Postural Orthostatic Tachycardia Syndrome
Patients often have a variety of symptoms, which may include any of the following:
- Cardiovascular. Dizziness or lightheadedness (particularly when standing up quickly, or standing for a long period of time), near-fainting, fainting, chest pain or palpitations (for example "skipped beats," feelings of heart racing or pounding)
- Nervous System. Headaches, mental fog, anxiety, depression, fatigue/tiredness, difficulty with sleep or tingling of extremities
- Gastrointestinal. Stomach pain, diarrhea, constipation, nausea or vomiting
- Musculoskeletal. Muscle or joint pain, very flexible joints or discoloration of hands and feet
Living with Postural Orthostatic Tachycardia Syndrome
POTS can cause significant symptoms, but it is not a life-threatening condition. Symptoms may fluctuate. Medication alone cannot ease the symptoms of POTS. Recovery requires a combination of many different strategies. It takes work on your part to help with your recovery.
Keeping up with the recommendations given to you by your health care team is key to success. Consistent exercise, increased fluid intake, increasing salt in your diet, taking medications (if necessary) as prescribed, good sleep patterns and not skipping meals are important and necessary steps to improved functioning and recovery. As you and your doctor work to minimize symptoms, it is important to remain active and maintain your normal routine as much as possible, including going to school and socializing with your friends.
The vast majority of patients recover and symptoms improve or resolve. We can’t predict when that may happen. Recovery may be over the course of several months to several years. We will work with you to help you be as functional as possible as you travel along this journey.
For more information, visit a well-established resource such as Dysautonomia International or Dysautonomia Youth Network of America, Inc.
To speak to a member of the Children’s National Cardiology team, please call 202-476-2020. The Pain Medicine Care Complex, which also provides care for patients with this condition, can be reached at 202-476-6765.