Do you often find that you feel dizzy, fatigued, and have an increased heart rate when you stand up? Do these symptoms go away when you sit or lie down? Then you may be suffering from Postural Orthostatic Tachycardia Syndrome (POTS) – a common form of dysautonomia (a disorder that disturbs the autonomic nervous system function) that affects approximately 1 to 3 million Americans.
Some people with POTS have only mild symptoms, which often improve gradually with time. However, others may find the intensity of symptoms and fatigue associated with POTS make it difficult for them to carry out their day-to-day activities. Thankfully, over the years, researchers and doctors have worked hard to try and understand POTS, which means both mild and severe cases can be treated.
Many doctors are unfamiliar with POTS and are unable or unwilling to make the diagnosis. Others are comfortable with basic recommendations. If your doctor has told you, “There’s nothing more I can do about your POTS, so just live with it,” then read on to find out more about what POTS is, what its causes and symptoms are, and how it can be treated.
What is Postural Orthostatic Tachycardia Syndrome?
The acronym POTS stands for the following:
Postural: meaning the condition relates to the position of your body
Orthostatic: suggests the posture of your body is involved and often refers to your blood pressure dropping or dizzy sensations
Tachycardia: when your heartbeat increases (typically over 100 beats per minute)
Syndrome: meaning POTS isn’t a disease but rather a collection of symptoms that contribute toward the condition
It turns out that the words postural and orthostatic pretty much mean the same thing in this case, so, it’s also correct to call POTS the “Postural Tachycardia Syndrome.” POTS is named as such because the symptoms of lightheadedness, fatigue, and brain fog are associated with an increased heart rate and occur primarily when a person is standing up. In fact, the diagnosis of POTS is pretty easy to make — just combine symptoms of “postural intolerance” (having symptoms while standing up) and an increased heart rate. Specifically, the heart rate should increase by 30 beats per minute when a person goes from a lying to a standing position, or if the heart rate reaches 120 beats per minute within 10 minutes of assuming a standing position (130 bpm in patients under 18 years old), then POTS is present. The blood pressure should stay the same or even go up a little in POTS. If the blood pressure goes down by more than 20 points, then the patient has a different condition known as Orthostatic Hypotension.
POTS occurs because the normal reflexes that make up your autonomic nervous system (ANS) don’t work properly. When you stand up, gravity will naturally pull blood down toward your feet, hands, and below your waist. In order to maintain blood flow to your brain and heart, and to prevent low blood pressure, your heartbeat should increase slightly (up to 20 beats per minute is considered normal) and your blood vessels should constrict. All of this is done automatically by your ANS. However, because those reflexes don’t work effectively when you have POTS, there’s less blood getting back to your heart and so it pumps less blood to your brain, so your heart beats faster to try and make up for this.
People of all ages can be affected by POTS, but 75 to 80 percent of cases are found in women between the ages of 15 and 50.
What Are the Causes of POTS?
For many, the cause of this disorder in the central nervous system is unknown. A variety of things may trigger the onset of POTS, which can be quite sudden in some cases. Thankfully, the earlier you get POTS, the more likely it is to go away completely, though it may take several years for the symptoms to disappear. Some people develop POTS after a serious illness like a bad viral infection. Sometimes it can occur after trauma like a car accident. In many cases the symptoms come on gradually over several years. Some women find it’s worse before their menstrual periods, while sometimes it occurs during or after pregnancy.
Keep in mind the POTS is not a disease – it is a syndrome, which is a constellation of symptoms that can be due to many different reasons. There are a variety of different causes of POTS, and investigators are trying to find the root cause or a common mechanism so they can explain the reason for this syndrome. However, it’s likely due to a variety of different disturbances in the regulation of total body fluid and blood volume, the body’s ability to control the blood vessels, and even the brain’s ability to detect and compensate for postural changes.
Researchers have identified a number factors, conditions, and diseases that may be found in patients with POTS, including:
- Autoimmune diseases
- Chronic fatigue syndrome
- Ehlers Danlos syndrome
- Epstein Barr virus
- Joint hypermobility syndrome
- Lyme disease
- Mast cell disorders causing abnormal histamine release
- Mineral and vitamin deficiencies
- Poisoning – certain heavy metals or alcohol
- Sjogren’s syndrome
There can be an increased risk if someone in your family has a history of POTS. In some cases it seems to be due to inheriting an abnormal gene, perhaps one that causes your body to produce too much noradrenaline (the “fight or flight” hormone).
What Are the Symptoms of POTS?
You may develop POTS gradually or it may appear suddenly, but most of the symptoms you get will occur when you sit up or stand up. The most common symptoms are:
- Palpitations or the feeling of a racing heartbeat
- Severe, chronic fatigue and weakness
- Lightheadedness or “brain fog”
- Abdominal bloating and nausea
- Headaches, often in the back of the neck and shoulders
- Shortness of breath
- Exercise intolerance (feeling exhausted for days after a moderate workout)
- Bluish discoloration of hands and feet while standing (“acral cyanosis”)
Other symptoms that sometimes occur in patients with POTS include:
- Chest pains
- Migraine Headaches
- Vomiting or weight loss
- Sweating abnormalities (too much or too little)
- Heavy feeling in legs with standing
- Diarrhea or constipation
- Bladder problems
How Can POTS Be Treated?
Unfortunately, there isn’t a one-size-fits-all treatment available for POTS, which is why it helps to see a physician who is experienced in treating POTS. Sometimes, specific lifestyle changes can help ease your symptoms, but if they don’t work, you may also need medication.
The cornerstones of treating POTS from a lifestyle standpoint are water, salt, and exercise. Specifically, increasing your fluid intake (at least 2-3 quarts per day), increasing your salt intake dramatically (unless you have high blood pressure or kidney disease), and exercise, which is vitally important for recovery. When you are first starting to overcome the physical deconditioning that goes hand in hand with POTS, the exercises should be done in a sitting position. Recumbent bicycles and rowing machines are best, but swimming is ideal because the water presses on your legs and helps get the blood back to your heart. It may take as long as 6-8 weeks of steady exercise before people with POTS feel noticeably better.
Other lifestyle changes that can significantly improve your quality of life with POTS include wearing compression stockings (waist-high or thigh-high), elevating the head of your bed about 6 inches, and getting plenty of sleep. Sometimes, putting your legs up on a desk or the arm of a couch in the middle of the workday can temporarily improve the symptoms dramatically, since that helps return the blood that is pooled in your legs back into circulation.
Some things to avoid are prolonged periods of standing (it’s better to walk than to stand in one place), warm environments, hot showers (take warm ones instead), and heavy meals (small frequent meals are better). Try to stand up slowly after you’ve been lying down for a while, and if you start to feel faint then lie down and elevate your legs. Caffeine and alcohol can cause you to urinate more, so minimize those if possible or you will get more dehydrated.
Often the worst time of the day is getting out of bed in the morning. POTS patients who feel badly at that time of day should drink at least 16-20 ounces of fluid as soon as they get up. One effective trick is to set your alarm clock 15 minutes before you have to get out of bed in the morning and chug the fluid at that time. Then lie in bed for 15 minutes so your body has a chance to absorb the fluid, and you won’t be as lightheaded when you get up.
There isn’t a specific medication that is used to treat POTS. Many medications can help, though, but you should get the advice of a physician who is experienced in treating POTS. Some of the medications that can be helpful are fludrocortisone (to help you retain some extra fluid), midodrine (to support your blood pressure and help get the blood back to your heart), beta blockers (they slow your heart rate but can make you more fatigued), and in severe cases CNS medications like SSRIs. Some patients with severe fatigue from POTS may benefit from the stimulants used to treat attention deficit disorder (ADD) but these are controlled substances that must be used with caution. POTS patients with widespread symptoms including bloating and nausea, rashes and multiple allergies may have a Mast Cell Activation Disorder that can cause POTS. Those patients may benefit from antihistamine medications.
If you think you’re experiencing the symptoms of Postural Tachycardia Syndrome, you should ask your doctor about it as soon as possible. If they cannot diagnose or treat the condition and rule out any other heart problems, then see a POTS specialist.