Understanding Postural Orthostatic Tachycardia Syndrome (POTS)

How to say it

PAHS-cher-uhl

or-tho-STA-tik

tak-ee-KAR-dee-uh

What causes POTS?

Normally, the nervous system sends signals and some hormones react when a person stands up. These things cause the heart to beat a bit faster and the blood vessels in the lower body to get smaller. This helps make sure enough blood can be pumped up to the brain. The heart rate will then slow after about 20 seconds or so.

But with POTS, this process of nervous system signals and hormones doesn’t work as it should. Researchers are still studying POTS. They don’t fully know what causes it. It may be caused by:

• Loss of nerves in your legs and belly that weaken blood vessels in those places

• Another part of your nervous system is overactive

• Not enough blood in your body

• A problem with the immune system

POTS happens more often in people assigned female at birth. It may run in families. It may start after any of these:

• Surgery

• Illness

• Injury

• Pregnancy

Symptoms of POTS

When you stand up, you may have symptoms such as:

• Dizziness

• Heart palpitations

• Trouble thinking (brain fog)

• Sudden severe tiredness

• Blurry vision

• Nausea and vomiting

• A lot of sweating

• Chest pain

• Feeling hot or cold

• Feeling anxious

• Shaking

• Fainting

POTS may also cause:

• Diarrhea or constipation

• Bloating

• Belly pain

• Higher or lower blood pressure

• Headaches

• Body aches

• Trouble sleeping (insomnia)

• Swollen and purple legs and feet

Your symptoms may be worse in these cases:

• When you try to exercise

• In hot weather or in a warm room

• When you take a hot shower or bath

• If you stand or walk for a long time

• If you have not had enough to drink (dehydrated)

• If you have not had enough salt

• If you have a cold or other illness

Diagnosing POTS

Your healthcare provider will ask about your symptoms and when they happen. They will ask about your health history. Tell them all medicines you take. This includes prescription and non-prescription medicines. It includes vitamins, herbs, and other supplements.

You may have tests such as:

• Tilt table test. This is a test that helps your healthcare provider see how changes in body position can affect you. You lie on a table that is tilted upward from a horizontal to a vertical position. Your heart rate and blood pressure are watched. The test can be done in a hospital or at your provider’s office.

• QSART. This tests your nerves that control sweating. Sticky pads connected to a device are put on your skin. A mild electrical signal activates your sweat glands. The amount of sweat you make is measured.

• Skin nerve biopsy. Small samples of skin are taken. Your healthcare provider looks at the small nerves in your skin.

• Exercise test. This measures your heart rate and blood pressure while you exercise.

• Echocardiogram. This test looks at your heart’s function as it moves.

• Blood and urine tests. You may be checked for other problems that cause symptoms like POTS.

• Other tests. Your healthcare provider may talk with you about other kinds of tests.

Treatment for POTS

There is no known way to cure POTS, but there are ways to help manage symptoms. These include:

• Exercise. Your healthcare provider may advise you to do aerobic and strength exercises. These can help your heart and blood vessels. They can improve muscles in your legs and belly. This may help reduce your symptoms. Your provider may prescribe physical therapy or a cardiac rehab program.

• Changes to your diet. You may need to drink more fluids. You may need to have more salt in your diet. You may need to eat smaller meals more often instead of large meals. Ask for a referral to a dietitian to help with diet changes.

• Compression legwear. Compression socks or stockings have fabric that gently squeezes your legs. This can help prevent blood from pooling in your legs. It can help your veins push blood upwards. This may help reduce your POTS symptoms.

• Medicines. Some medicines may help POTS symptoms. Your healthcare provider can talk with you if medicines are an option.

Living with POTS

Symptoms of POTS may come and go. Some may get better at times and worse at times. This varies from person to person. Some people have severe symptoms that make it hard to work or go to social events. Some people with POTS may have trouble with daily tasks, such as:

• Cooking

• Cleaning

• Taking a hot shower

• Grocery shopping

To help with daily life:

• Ask for help with tasks that cause your symptoms.

• Stay out of places that are too hot or too cold.

• Use mildly warm water in the shower. Don’t use hot or cold water. Use a shower seat for safety in case you get dizzy.

• Don’t stand or walk for too long. Rest as needed.

• Don’t have alcohol or caffeine. These can cause your body to lose fluid.

Tell your healthcare provider about your ability to do daily tasks. Work with them to create a treatment plan. Stick with your treatment plan. Talk with your provider if your symptoms change.

When to call your healthcare provider

Call your healthcare provider if you have any of these:

• Symptoms that don’t get better, or get worse

• New symptoms