What are the signs of POTS and how do I know if I have it?

For people living with postural orthostatic tachycardia syndrome (POTS), being in a standing position can trigger symptoms like dizziness, brain fog, heart palpitations and headaches.

While symptoms can be mild for some people, for others POTS symptoms can make it hard to keep up with work, friends and home life. If you think you might have POTS, it's important to get help.

In this guide, we look at how to know if you have POTS, what the common symptoms are and where to get support.

What is POTS?

Postural orthostatic tachycardia syndrome, or POTS, is a condition that causes an abnormal increase in heart rate when you stand up after sitting or lying down.

POTS is a disorder of the autonomic nervous system – the system in your body that's responsible for things you don't have to think about like breathing, heart beat, blood flow and digestion.

In a healthy person, the autonomic nervous system triggers a number of responses to make sure enough blood gets to the heart and brain.

But for someone with POTS, these responses don't happen to a sufficient level.

So when a person with POTS stands up, blood pools in the lower half of the body and the heart rate increases to make up for the lack of blood in the heart and brain.

This can lead to symptoms like dizziness, fatigue, brain fog and fainting.

POTS occurs most commonly in girls, women, and people assigned female at birth aged 15 to 50 years old, but it can also affect men and people assigned male at birth.

While there's no cure for POTS, there are a number of treatments and self-care strategies that can help reduce the impact of symptoms.

POTS symptoms

POTS symptoms vary from mild to severe, and can start suddenly or develop gradually over time.

For some people, POTS symptoms can be managed effectively with self-care strategies.

For others, symptoms can have a big impact on day-to-day life and a greater level of support is needed.

Common POTS symptoms include:

  • Dizziness or light-headedness
  • Fatigue and weakness
  • Racing heart rate
  • Heart palpitations
  • Sweating and shaking
  • Shortness of breath
  • Fainting
  • Trouble remembering things or thinking clearly (brain fog)
  • Headaches
  • Chest pain
  • Trouble sleeping

Some situations may make symptoms worse, such as:

  • Hot environments
  • Standing or sitting for a long time
  • Skipping meals or being dehydrated
  • Menstruation

How to know if you have POTS

POTS is diagnosed based on a group of symptoms.

Generally, you need to have these symptoms for at least 3 months before a POTS diagnosis.

Your heart rate increases at least 30 beats per minute within 10 minutes of standing in an upright position.

There is not a significant drop in blood pressure (this can indicate a condition called orthostatic hypotension).

You experience other symptoms when standing, such as dizziness, light-headedness or shortness of breath.

You don't have other health conditions and aren’t taking medications that could cause the symptoms.

How is POTS diagnosed?

During an assessment, your doctor may run a number of tests to confirm whether you have POTS and rule out any other factors that may be causing your symptoms.

A common test used for diagnosing POTS is the tilt table test.

During the test, you lie on a specially designed bed and your heart rate and blood pressure are recorded.

Then the bed is tilted to an upright position and your measurements are taken again.

A similar test is the active standing test.

Your heart rate and blood pressure are measured when you stand up after lying down.

Your doctor may also run a number of other tests, such as a blood test, electrocardiogram or echocardiogram.

What is POTS often misdiagnosed as?

POTS is sometimes misdiagnosed as other conditions, including:

Treatment for POTS

Although there is no cure for POTS, there are a range of treatments that can help with managing symptoms.

Your treatment plan will be highly personalised, depending on your symptoms and needs.

Treatment can include things like:

Lifestyle

Increasing how much water you drink every day, eating saltier foods and avoiding alcohol can all help.

Some people also find wearing medical grade compression bands is beneficial.

Your doctor may also recommend techniques to improve your quality of sleep.

Physical therapy

Physical exercise can help increase blood volume and protect your overall health.

It's important to start slow as vigorous exercise can make symptoms worse.

For some people, aquatic therapy or exercising in a reclined position works well.

Environment adjustments

Making changes to your work or home environment can help with managing symptoms.

For example, you might work lying down for part of the day, have a room in the office where you can take regular breaks or control the temperature of the room with fans or an air conditioner.

Medicine

If lifestyle and environment changes don't help, your doctor may suggest medications that help improve blood volume, reduce heart rate or improve blood vessel constriction.

What to do if you think you have POTS?

If you suspect you have POTS, it's important to get help sooner than later.

Speaking to your GP or family doctor is a good place to start.

Symptoms can sometimes be caused by medications or underlying conditions, so it's helpful to get a formal diagnosis.

Your doctor can refer you to a specialist or support services if needed.

What support is available for someone with POTS?

Although POTS symptoms can impact daily living, many people find they are able to succeed at work and in life with the right support in place.

Counselling or therapy

Counselling and therapy can help you learn how to cope with a chronic illness, and develop tools to strengthen your mental well being.

You can ask your GP for a referral to a psychologist.

Support groups

Connecting with other people who have similar experiences can help you feel less alone

Ask your GP about support groups in your local area, or search online for online support groups.

Employment support

If your symptoms are affecting your ability to find a job or keep up with your current role, employment support is available at no cost.

You could be eligible for tailored support from a Disability Employment Services provider such as APM.

We help people like you find meaningful work, access workplace modifications and succeed in your employment goals.

Contact us to see how we can support you.

Also read: How to cope with the pressures of living with chronic illness.