Postural Orthostatic Tachycardia Syndrome (POTS) is both mysterious and misunderstood by nearly everyone, including most physicians. In fact, if you or someone you love has been diagnosed, chances are there is a lot of confusion surrounding your doctor appointments. Perhaps you've been told that your body is attacking itself and that taking medication every day for the rest of your life is the only answer to managing this debilitating condition. This prognosis can make people feel helpless, with no hope for their health to improve - and it's easy to see why. Some of the symptoms associated with POTS include lightheadedness and dizziness, which can be quite stressful and even frustrating to deal with on a day to day basis.
A relatively new disease, postural orthostatic tachycardia syndrome still lacks a set of universally followed, predefined treatment guidelines - hence all the confusion when a diagnosis is handed out. The good news is that there is a light at the end of the tunnel for those suffering from this confusing condition. Although there may not be any medical treatments widely available for treating POTS, research and studies suggest that by changing your lifestyle and following a healthy diet, patients can reduce and cope with their symptoms.
In this article, we will explore the following:
- What POTS is
- Symptoms of POTS
- How POTS is diagnosed
- Types of POTS
- What causes POTS
- What POTS feels like
- The best treatment for POTS
Whether you're newly diagnosed or have been suffering for years, we've got the information you need to help get you back on your feet - without any dizziness! If you're interested in learning more about how you can make life a little more manageable with POTS, then keep reading. Here is our complete guide to a POTS syndrome diet.
What is POTS?
For those who don't have POTS, it's a form of dysautonomia that affects blood flow through the body, causing dizziness when standing.
POTS stands for postural orthostatic tachycardia syndrome. Let's break that down:
- Postural: the condition is related to the posture of the body.
- Orthostatic: suggests the body's position is involved and refers to a sudden drop in blood pressure causing dizziness.
- Tachycardia: refers to a rapid heart rate, generally over 100 beats per minute.
- Syndrome: means it's not necessarily a disease, but rather a group of symptoms that are often seen grouped together.
Technically, someone has postural orthostatic tachycardia syndrome if their heart rate increases by 30 beats per minute, or their heart rate is more significant than 120 beats per minute within 10 minutes of standing up.
The autonomic nervous system controls the "automatic" functions of the body that we don't really think about, such as breathing, heart rate, blood pressure, pupillary response, and much more. It regulates these involuntary actions, allowing your body to function properly. For example, when you stand, your body needs to accommodate an entire set of processes to allow this motion. Upon standing up, a significant amount of blood automatically drops to the lower body. Autonomic reflexes naturally ensure that blood gets appropriately distributed to the upper body by changes such as vessel tone, muscle tone, heart rate, and pumping responses in the heart. Another response is releasing hormones that help to tighten blood vessels, causing a modest increase in heart rate. This leads to better blood circulation to the brain and heart. Once the brain is receiving enough oxygen and blood, these nervous system responses settle back to normal.
There are many diseases that affect the autonomic nervous system, known as dysautonomia. POTS happens to be one of them.
For unclear reasons that tend to differ from person to person in people with POTS, the blood vessels don't respond as well to the signal to tighten. As a result, the longer someone with POTS is upright, the more blood pools in the lower half of their body. This leads to not enough blood flow returning to their brain, causing the notorious symptoms associated with POTS such as lightheadedness and dizziness.
For those that have this condition, there is an increase in heart rate and lightheadedness upon standing, as well as fatigue, exercise intolerance, and a multitude of other symptoms. Even normal everyday activities that are usually taken for granted such as walking or simply taking a shower may be severely limited in severe cases.
Although anyone can be affected by postural orthostatic tachycardia syndrome, it's by far most prevalent among women in their teens, twenties, and thirties. There is a broad spectrum of POTS-like disorders that fall under the umbrella of dysautonomia - we will touch more on this later!
Symptoms of POTS
Dizziness upon standing is the most common symptom of POTS. In some severe cases, patients actually faint when trying to stand, earning POTS the infamous nickname of "the fainting disease." However, fainting and dizziness are just a couple of the many often debilitating symptoms of postural orthostatic tachycardia syndrome. Additional symptoms include:
- Nausea
- Headaches
- Abdominal pain
- Chest pains
- Chronic pain (general)
- Fatigue
- Heart palpitations
- Insomnia
- Shortness of breath
- Brain fog
- Weakness
- Sweating abnormalities
- Tremors
- Bladder dysfunction
With these symptoms in mind, it's easy to see why POTS is often called "the invisible illness" - nearly every symptom is subjective. Although dizziness is the trademark symptom, it's important to keep in mind that POTS does a whole lot more than just make someone feel dizzy.
Of all the symptoms, most POTS patients will tell you that fatigue is the most problematic or troubling symptom. In fact, fatigue is also to blame for many of the complications that come with POTS. For example, it's common for teens with POTS to have a difficult time getting to school in the morning, simply due to being so tired - no matter how many hours of sleep they got the night before. Some also find it incredibly difficult to get out of bed all together. People suffering from POTS can find themselves in a frustrating and vicious cycle - they won't feel better unless they're active, yet they don't have the energy to be active.
Can POTS be fatal?
While postural orthostatic tachycardia syndrome can be life-changing, to say the least, it's not life-threatening. One of the most significant risks for people with POTS is falls due to fainting. However, not everyone with POTS gains. And for those who do, it may be a rare event. But if you aren't aware that you have POTS, you may not take the precautions against trauma from falls, which could be quite dangerous.
POTS Risk Factors
Dysautonomia International estimates that POTS affects between 1 and 3 million people in the U.S. The majority of people to develop the condition are women, but men can develop it too.
Postural orthostatic tachycardia syndrome is less common in young children, but as we mentioned, it does affect adolescents, with symptoms often developing during puberty.
What about POTS and pregnancy?
Since postural orthostatic tachycardia syndrome affects women of childbearing age, a common question is whether having the condition will affect the outcome of giving birth. In some studies, slightly more than half of pregnant women with POTS felt better than usual during their pregnancies, which could be due to the increase in blood volume that is present in the body after the first few weeks of pregnancy. However, others had a more viable course, with either stable POTS symptoms or increased POTS symptoms. Other pregnancy complications appear to occur at about the same rate for women with the condition, and their newborns seem to be as healthy and happy as infants born to mothers without POTS.
How POTS is Diagnosed
Postural orthostatic tachycardia syndrome is commonly diagnosed through various tests, the most common of which is called a tilt table test. The tilt test is an easy test that assesses someone's response to orthostatic stress. Patients are usually strapped to a table, which is then tilted to simulate the process of standing by forcing blood from the upper body to the legs. Since not all hospitals have tilt tables, some doctors will diagnose POTS by monitoring blood pressure changes and heart rate while the patient moves from lying down to standing up.
An electrocardiogram (ECG) is another way to test for POTS. During this test, small electrodes are attached to the chest to measure the heart's rhythm. It's done to exclude any other heart problems that may cause symptoms similar to POTS.
Many physicians can diagnose POTS, but cardiologists are commonly the go-to specialist to properly diagnose the condition.
At-home tests for POTS
You are not able to diagnose yourself, but you can do a similar test that your doctor would do in the office, called the "Poor Man's Tilt Test" - no tilting table required!
- Lie down. Try hard to relax and be still without talking. If you can hook yourself up to a pulse oximeter (they run around $15 bucks online) that would be best because then you don't have to move your arms, but if you don't have one, simply get in position and lie down. At your wrist, take your pulse and make sure you can see a timer without moving. Better yet, if you can, have a buddy take your pulse for you.
- Check your heart rate. After you have been lying still for five to ten minutes, count your pulse for fifteen seconds, and multiply that number by 4 to calculate your beats per minute.
- Stand up. Once you are standing, be as still as humanly possible, and be especially careful not to move your legs, because moving your legs will cause a change in your blood flow.
- Recheck your heart rate. Take your pulse again, but at 3, 5, and 10 minutes standing.
- Compare. If you find that your heart rate rises by 30 beats per minute and returns to the rate you got when you were originally lying down, that's not postural orthostatic tachycardia syndrome. However, if your heart rate stays elevated by 30 beats per minute or continues to rise, and if you feel symptoms of dizziness, lightheadedness, or nausea while standing, bring your results to your primary care provider and ask to do a formal test for POTS, because chances are you have the condition. Ask for a referral to a specialist.
Even if your heart rate stays exactly where it should, but you have symptoms associated with POTS, you can have your doctor do a more accurate test in the office just to be sure. It never hurts to simply get the conversation going, and a good primary care provider will never make you feel less than or imply that you've been self-diagnosing on the internet, for inquiring about a condition. The best doctors appreciate informed discussion and will help to fill in the gaps.
Types of POTS
As we mentioned earlier, there are different types of POTS in which we will cover in more detail here. Since researchers don't entirely understand the origins of this disorder, the classification of POTS is the subject of discussion. However, most authorities recognize different characteristics in POTS, which occur in some patients more than others. Most importantly, these characteristics are not mutually exclusive; everyone is different, and a person with POTS may experience more than one of these at the same time:
Hypovolemic POTS. This is a term used to describe POTS associated with abnormally low blood levels (hypovolemia).
Neuropathic POTS. This is a term used to describe POTS associated with damage to the small fiber nerves (small-fiber neuropathy). These nerves regulate the constriction of blood vessels in the abdomen and limbs.
Hyperadrenergic POTS. This is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.
Secondary POTS. This means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as Lyme disease, diabetes, or autoimmune disorders such as Sjogren's syndrome or lupus.
What Causes POTS?
The cause of POTS is poorly understood. However, researchers believe episodes often begin after trauma, pregnancy, a viral illness, major surgery, and may increase right before a menstrual period. While physicians and researchers are still looking for the exact cause or causes of this confusing condition, they have identified several underlying diseases and conditions that frequently occur in people with POTS.
These include the following:
- Autoimmune diseases
- Prediabetes or diabetes
- Mononucleosis
- Deconditioning or prolonged bed rest
- Epstein Barr virus
- Ehlers Danlos syndrome
- Lyme disease
- Mineral and vitamin deficiencies, including anemia
While many people who develop postural orthostatic tachycardia syndrome have no family history of the condition, some people who suffer from the syndrome report a family history of conditions that result in blood pressure and heart rate issues, especially when standing up. Because of this, some researchers believe that there may be a genetic component involved with POTS.
What Does POTS Feel Like?
Imagine waking up one morning and everything being ripped out from under you. In a quick blink of an eye, everything changes. Everything you love to do, suddenly you can't do anymore. Terrified, worried, unheard, and even misunderstood. Doctors clueless as to what's going on with you.
This is POTS.
People who suffer from POTS will tell you it feels like your body is trying to be in crisis all the time. You never know when new symptoms will arise or when the old ones will attack so hard, it forces you to make a trip to the ER. It's like living on a roller coaster. A horrible, horrible never-ending roller coaster.
Others will tell you POTS is like getting off a merry-go-round with the worst hangover of your life on the hottest day of summer or dealing with the flu all the time without any hope of it subsiding. Dizziness, lightheadedness, fatigue - these are all symptoms known all too well by those battling this crippling condition.
If you're living with postural orthostatic tachycardia syndrome, one of the best things you can do is identify your symptoms' trigger points. Keep a journal or a diary of your symptoms. This may help you to better identify things that could be related to your symptoms. For example, you may notice that your symptoms are much worse right before your period. Maybe dehydration aggravates your POTS symptoms. Perhaps warmer weather makes you more likely to feel anxious or dizzy when you stand up. Write these things down and educate yourself on what your body needs. From there, you can adjust your behavior appropriately and treat your symptoms better.
If you know that your POTS may be triggered by extended standing, avoid it. Always keep a bottle of water with you at all times and maybe speak with a mental health counselor about how your symptoms impact your life. If you've been diagnosed with this confusing condition, it's important to know that your symptoms are, in fact, real - you're not imagining them - and that you are not alone.
How Do Your Treat POTS?
As we mentioned, there is no cure for POTS, but there are some ways to alleviate symptoms to help make living with the condition much more bearable. There isn't a one-size-fits-all solution either because everyone is different, and symptoms tend to vary from person to person. It's important to keep in mind that it may take some trial and error to determine which treatment works best for you and your specific needs.
So, how does one treat an extremely complex condition such as POTS, you might ask?
The answer is simple: through diet.
Postural Orthostatic Tachycardia Syndrome Diet
Believe it or not, diet is seen as a critical component of any dysautonomia or POTS syndrome treatment plan. A proper POTS syndrome diet focuses on fluid intake, salt intake, and carb intake.
We'll explain.
Fluid intake. One of the biggest problems in postural orthostatic tachycardia syndrome is the inability to tolerate standing, due to a drop in blood pressure and increased heart rate. Part of the typical POTS treatment strategy is increasing water intake to keep dehydration at bay.
Water has shown to help healthy individuals with POTS tolerate standing for more extended periods of time. It's also been shown to be beneficial in patients with orthostatic syndromes. Most of these studies examine the effect of drinking about half a liter of H2O over a five-minute period. Effects include reduction in standing heart rate and improvement in standing blood pressure, in addition to improvement in other symptoms.
Patients with postural orthostatic tachycardia syndrome are recommended to have a fluid intake of at least 2 liters per day. Although water is arguably always best, fluids can be in the form of other liquids like soup or fresh fruit juices.
Salt intake. Patients with POTS need lots of salt in their diet to help their blood vessels retain water. That extra water is important because it will keep the patient's blood pressure within normal levels or at least prevent it from falling when they stand up. This has proven particularly helpful in patients with hypovolemia, blood pooling, or hypotension.
Depending on their size and age, many POTS patients take between six and ten grams of salt per day. They can get the salt they need simply by adding it to the food they eat or consuming naturally salty foods like cured meat, soup and cold cuts. Another excellent way for people with POTS to get the salt they need to keep their symptoms at bay is by merely taking a salt capsule. Look for an honest and reputable company like Adapted Nutrition with an undeniably true passion for providing to-quality salt supplements. Their Hi-Lyte Electrolyte salt capsules deliver rapid rehydration to fuel your body with the minerals it needs to help you feel your best.
Increasing your salt intake should only be done if a doctor recommends it. Why? Because too much salt in your diet can be harmful to those with existing medical conditions like kidney stones, high blood pressure, and heart failure.
Carb intake. When it comes to POTS, increasing your fluid and salt intake can be extremely beneficial. However, when it comes to carbs, patients with POTS should decrease their intake. POTS patients are commonly advised to eat smaller meals more often throughout the day than larger meals and limit the carbs in their diet.
This is because many patients with POTS find that their orthostatic symptoms following a carb-filled meal become much worse - but why?
When a meal is eaten, there is increased blood flow to the digestive system to help the digestion process. For those with POTS, there is already an issue with blood pooling in the lower half of the body, and not being returned to the brain, heart, or upper body as usual. So, when a large meal is consumed, there is an added stress of a large amount of blood being diverted to the digestive system, which results in the pooling of blood in the vessels that supply the digestive system. Eating too fast may also contribute.
There is also evidence suggesting that the higher the carb content of a meal, the greater the lowering of blood pressure in patients with orthostatic symptoms will be. Cutting back your carb intake with POTS is critical because a high carb intake can greatly reduce one's blood pressure, worsening the symptoms of those suffering from the condition.
With that being said, many people with postural orthostatic tachycardia syndrome actually find great relief by switching from a traditional high-carb diet to a low-carb diet such as the ketogenic diet. Keto is a high-fat, low-carb diet that focuses on immensely reducing your carbohydrate intake to change how your body uses food for fuel. Although research is still in its early stages, most can agree that keto seems promising as a potential POTS treatment for a couple of reason:
- It restricts the number of carbohydrates you can consume in a day.
- It increases energy levels by altering your metabolism
By following a ketogenic diet, those with POTS might be able to manage their symptoms better. If you're considering making the change to a low-carb lifestyle with keto, be sure to speak with your doctor first.
Exercise
In addition to increasing your fluid and salt intake while decreasing your carb intake, researchers have found that exercise can be extremely beneficial to ease the POTS symptoms as well. This is because exercise has been proven to expand blood and plasma volume and increase cardiac muscle mass and heart size, making it an excellent way to combat POTS.
However, exercising is a lot easier said than done for those dealing with the telltale signs of POTS like fatigue and dizziness. A patient should ease into it and gradually work up to 30 minutes of exercise 5 days a week by adding a minute or two to their workouts every couple of days. Keep active, but pace yourself and avoid strenuous exercise activities like sprinting, CrossFit classes, and long uphill hikes. Reclined aerobic exercise such as rowing, swimming, and bicycling, as well as strengthening the legs and core, are most beneficial. Restorative yoga is also a great option because it will help to release muscular tension, balance your nervous system, and improve your capacity for healing and balance in addition to leaving you completely relaxed.
RECAP
Living with postural orthostatic tachycardia can be tough. Dizziness, faint-spells, fatigue, weakness, and heart palpitations are just a few of the symptoms associated with this confusing condition. And to make matters worse - there is no cure.
POTS is a relatively new condition that researchers and physicians are still trying to understand fully. What they know so far is that the condition is more prevalent in women than men, and symptoms tend to flare up following a huge event like pregnancy, a major surgery, trauma, or a viral illness. Although there is no cure, there are things you can do to help make an impact on your overall well-being to ease the negative symptoms associated with POTS and improve your way of life.
Here are a few lifestyle tips that you can try:
- Add an extra dash of salt to your food at every meal to increase your salt intake.
- Swap table salt for sea salt like Pink Himalayan salt because it's not refined and is also loaded with other healthy minerals like magnesium, calcium, and potassium.
- If you have difficulty getting in enough salt throughout the day, take an easy salt supplement like Adapted Nutritions Hi-Lyte electrolyte salt capsule.
- Eat smaller meals throughout the day and try to take snack breaks to help maintain hydration and energy.
- Reduce your carb intake to keep your blood pressure levels in check.
- Get enough regular, good quality sleep every night. Aim for 8 hours.
- Carry a journal around with you to track your POTS symptoms to help you better understand what triggers your flare-ups.
- Participate in a reclined aerobic exercise like rowing, swimming, and biking.
- Try a restorative yoga class to help clear your mind, reduce stress, and help with balance.
- Always listen to your body and move at your own pace.
- Drink 16 ounces of H2O before standing up.
If you are dealing with POTS, you must know that you are not alone.
These symptoms are real, and you are not crazy. In fact, according to Dysautonomia International, POTS is estimated to affect 1 out of 100 teenagers and including adult patients, a total of one million to three million Americans. That's a lot of people that are affected when you really think about it!
The good news is that in up to 90 percent of treated cases, POTS symptoms tend to become much more manageable over time. And in some cases, symptoms disappear on their own entirely after several years.
The symptoms associated with postural orthostatic tachycardia syndrome can be frustrating and debilitating. But with the right diet and a little bit of exercise, patients with POTS can finally find relief!
Sources:
https://www.hormone.org/your-health-and-hormones/glands-and-hormones-a-to-z/hormones/norepinephrine
https://myheart.net/articles/tilt-test-tilt-table-test-explained/
https://www.ncbi.nlm.nih.gov/books/NBK539845
http://www.dysautonomiainternational.org/page.php?ID=34
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4336603
https://www.ucsf.edu/news/2020/05/417466/ketogenic-diets-alter-gut-microbiome-humans-mice
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/#__sec1title