What are the main symptoms of POTS and how is it treated? Patients and doctors share how to recognise the signs of Postural Orthostatic Tachycardia Syndrome
Isobel of northwest England has been fainting since she was 12 years old—when they stood up, when it was hot, in showers, getting out of the bath, on public transport when there weren’t enough seats, the list goes on.
They didn’t know that their symptoms—which included heart palpitations, chronic fatigue, swollen red feet and hands, tremors, dizziness, shortness of breath, and temporary vision problems—could be Postural Orthostatic Tachycardia Syndrome (POTS, often referred to as PoTS in the UK) until a friend suggested it a year ago.
"From age 12, I was fighting to get doctors to listen to me but was repeatedly told there was nothing wrong with me"
“From age 12, I was fighting to get doctors to listen to me but was repeatedly told there was nothing wrong with me,” Isobel says. “It was ‘perfectly normal’ for a young woman to faint—I must have been startled by something or not eaten breakfast. They told me I’d grow out of it.”
After 15 years, she hasn’t “grown out of it”. At age 27, Isobel is finally getting tested for POTS. They are hopeful this will lead to appropriate treatment.
Unfortunately, Isobel’s lengthy diagnostic journey is all too common when it comes to POTS.
What is POTS?
Symptoms of POTS include fainting, shortness of breath and fatigue
POTS is a type of dysautonomia, or a malfunction of the autonomic nervous system. The autonomic nervous system is responsible for functions we aren’t normally aware of, like heart rate, blood pressure, digestion and sweating.
Clinically, a POTS diagnosis means a person’s heart rate increases by at least 30 beats per minute (40 BPM for 12 to 19-year-olds) within ten minutes of standing and stays sustained.
Symptoms of POTS include:
POTS symptoms can range from mild to severe, but 25 per cent of people with POTS are unable to attend school or work.
What causes POTS?
POTS has been linked to viral illnesses and some underlying health conditions, but the specific causes are unknown
The root cause of POTS is currently unknown, but there are several potential triggers, including viral illnesses like COVID and Epstein-Barr virus.
POTS has also been linked to genetics, injury, surgery, pregnancy, and underlying conditions such as diabetes or certain autoimmune diseases.
"The COVID-19 pandemic and subsequent long COVID cases have increased awareness of POTS"
“The COVID-19 pandemic and subsequent long COVID cases have increased awareness of POTS,” said Lauren Stiles, president of Dysautonomia International and research assistant professor of neurology at Stony Brook University School of Medicine in the US.
“A majority of people with long COVID have developed autonomic nervous system problems, most often presenting as POTS, but millions of people lived with POTS before Covid.”
Who can get POTS?
POTS is not a rare condition. Although there are no concrete numbers available in the UK, it is estimated to affect every 170 in 100,000 people.
While it can affect anyone regardless of age, gender or race, 94 per cent of people diagnosed with POTS are women, most of whom are between the ages of 14 and 50.
How is POTS diagnosed?
Unfortunately, it takes an average of over four years to receive an accurate POTS diagnosis.
83 per cent of people with POTS were given a psychiatric label like anxiety or “it’s all in your head” before diagnosis, but people with POTS aren’t any more likely to have a mental health condition than their healthy peers.
If you have the symptoms of POTS, you should speak with your GP. Many GPs are not aware of POTS, so it may be helpful to provide them with information from the NHS, as well as a list of POTS specialists from PoTS UK.
"You deserve to have answers about your own body, and you deserve the proper treatment to improve your quality of life"
Your GP will likely refer you to a cardiologist or neurologist.
POTS is typically diagnosed using an active stand test or tilt-table test. Other tests, such as an ECG, 24-hour heart monitor, echocardiogram, 24-hour urine collection or blood tests, may be used to rule out other possible explanations for your symptoms.
"You deserve to have answers about your own body, and you deserve the proper treatment to improve your quality of life,” Isobel says. “Keep fighting; you’re worth it."
How is POTS treated?
Wearing compression socks can help prevent blood pooling due to POTS
There is currently no cure for POTS, but there are lifestyle changes and medications that can help manage symptoms, including:
- Increasing fluid and sodium intake thorough IV fluids or electrolyte products like Vitassium, Liquid IV or NormaLyte.
- Wearing compression garments, which can improve blood flow and decrease blood pooling. Research shows that abdominal and thigh compression is most effective, but compression socks are popular among the POTS community. Not Your Grandma’s is owned by a POTS patient.
- Using disability aids like mobility aids, a shower chair or a grabber tool.
- Raising the head of your bed.
- Eating small, frequent low carb meals instead of large or high carb meals, which can worsen symptoms.
- Avoiding triggers like hot showers, standing for too long, standing up suddenly or stimulants like caffeine or alcohol.
- Doing exercise plans specifically designed for people with POTS.
There are also several medication options that your specialist may suggest to decrease your heart rate, narrow your blood vessels or retain sodium, all of which may improve your symptoms.
Your healthcare provider should work with you to help you find a management strategy that works best for you. Resources are also available from patient groups like PoTS UK and Dysautonomia International.
“A POTS diagnosis can feel overwhelming, but there is a large online community offering support and helpful advice and a growing number of physicians who are learning to treat POTS,” Stiles explains.
“We have a long way to go, but as awareness grows, research into treatment options—and hopefully one day, a cure—is growing as well.”
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