What you Need To Know About PoTS (Postural Orthostatic Tachycardia Syndrome)

Understanding PoTS: A Guide for Those Who Need Answers

If you or someone you love has recently been diagnosed with PoTS, you might be feeling overwhelmed. There is so much to take in, and finding the right information can be difficult. PoTS isn’t as widely known as some other conditions, which can make it even harder to get answers. But you are not alone, and we are here to help.

We know that PoTS affects people in different ways. Some might have mild symptoms that are frustrating but manageable, while others find that daily life becomes a real challenge. Whether you have been living with unexplained symptoms for years or you are just starting to piece things together, our aim is to provide clear and useful information to help you move forward.

In this article, we will explain what PoTS is, what causes it, and how it is diagnosed. We will also share practical advice on managing symptoms and making life a little easier. We hope this guide gives you the support and reassurance you need as you adjust to life with PoTS. Let’s take this step together.

What is PoTS? It's A Condition That Affects More People Than You Might Think

PoTS, or Postural Orthostatic Tachycardia Syndrome, is a condition that many people have never heard of until they, or someone they love, are diagnosed with it. It affects the autonomic nervous system, which controls things like heart rate, blood pressure, digestion, and temperature regulation. In simple terms, PoTS makes it hard for the body to regulate blood flow properly, especially when standing up. This can lead to a whole range of symptoms, from dizziness and fatigue to brain fog and heart palpitations.

If you are just beginning to learn about PoTS, you might feel overwhelmed by medical jargon or conflicting advice. We are here to help make sense of it all. You are not alone in this journey, and the more you understand about PoTS, the better you will be able to manage it.

Who Gets PoTS?

PoTS affects people of all ages, but it is most commonly diagnosed in teenagers and young adults. Around 80% of those diagnosed are women, though it can affect men too. Some people develop PoTS after an illness, surgery, pregnancy, or injury, while others have had symptoms for as long as they can remember.

Recent research suggests that PoTS might be more common than previously thought. Estimates suggest that around 1 in 100 teenagers and 1 in 1,000 adults are affected by PoTS, though many cases go undiagnosed. Since PoTS can mimic other conditions, some people are misdiagnosed with anxiety, chronic fatigue syndrome, or even just dismissed as having low fitness levels.

How PoTS Affects the Body

The main issue in PoTS is an exaggerated increase in heart rate when standing up. Normally, when we stand, gravity causes some blood to pool in the lower half of the body, and the autonomic nervous system helps push it back up to the heart and brain. In PoTS, this process does not work as well as it should. The body tries to compensate by making the heart beat much faster, sometimes by 30-40 beats per minute or more within a few minutes of standing.

This rapid heart rate can make people feel lightheaded, faint, or exhausted. But PoTS affects more than just heart rate. It can also cause:

• Blood pressure fluctuations, making people feel dizzy or weak
• Poor circulation, leading to cold hands and feet
• Gastrointestinal problems, including nausea and bloating
• Temperature regulation issues, causing excessive sweating or feeling cold
• Brain fog, making it hard to concentrate or remember things
• Fatigue, sometimes extreme enough to be disabling

The Link Between PoTS and Other Conditions

Many people with PoTS have other health conditions too. Some of the most common include:

• Ehlers-Danlos Syndrome (EDS) – A connective tissue disorder that affects the joints, skin, and blood vessels. People with EDS often have issues with blood pressure regulation, making PoTS more likely.
• Chronic Fatigue Syndrome (ME/CFS) – Many symptoms of PoTS overlap with ME/CFS, such as extreme tiredness, brain fog, and difficulty standing for long periods.
• Autoimmune Conditions – Some researchers believe PoTS might have an autoimmune component, as it is more common in people with autoimmune diseases like lupus and Sjögren’s syndrome.
• Long COVID – There has been a rise in PoTS cases following COVID-19 infections, with many people developing symptoms weeks or months after recovering from the virus.

Understanding these connections can help people get a more accurate diagnosis and better treatment.

Why PoTS is Often Misunderstood

One of the biggest challenges with PoTS is that it is not always easy to see. Someone might look perfectly fine one moment and be struggling the next. Symptoms can come and go, and what feels manageable one day might be overwhelming the next.

Since PoTS is not well known, even among some healthcare professionals, people are often dismissed or told their symptoms are due to anxiety or stress. This can be frustrating and isolating.

Raising awareness of PoTS is important, not just for those who have it but for their families, friends, and doctors. The more people know about the condition, the easier it will be for those affected to get the support they need.

What to Do If You Think You Have PoTS

If you suspect you have PoTS, keeping a symptom diary can be helpful. Tracking heart rate changes when moving from sitting to standing can also give clues about whether PoTS might be the cause of your symptoms.

The next step is speaking to a doctor. While many general practitioners are becoming more aware of PoTS, you may need to see a specialist, such as a cardiologist or neurologist, for further testing.

In the next section, we will explore the symptoms of PoTS in more detail, including some of the less obvious signs that can sometimes be overlooked. Understanding these symptoms is the first step in getting the right help and making life with PoTS a little easier.

Understanding the Symptoms of PoTS and How They Affect Daily Life

PoTS is often difficult to recognise because its symptoms can vary widely from person to person. Some people experience mild discomfort, while others struggle with symptoms that interfere with daily life. Many of these symptoms can also overlap with other conditions, making diagnosis a challenge. Understanding what to look for is an important step toward managing PoTS effectively.

The Most Common Symptoms of PoTS

PoTS is defined by an excessive increase in heart rate when moving from lying down to standing. But this is just one part of the condition. The autonomic nervous system controls much more than heart rate, which is why symptoms can affect multiple areas of the body.

The most commonly reported symptoms include:

• Dizziness and lightheadedness – Many people with PoTS feel unsteady when standing. Some describe it as feeling like their vision is narrowing, while others experience a floating sensation.
• Heart palpitations and a rapid heart rate – The heart beats faster than usual when standing, sometimes feeling like it is pounding or fluttering in the chest.
• Fatigue that does not improve with rest – This is more than just feeling tired. PoTS-related fatigue can make simple activities, like taking a shower or preparing a meal, feel exhausting.
• Brain fog and difficulty concentrating – Many people struggle with memory, focus, and processing information. This can make work, studying, or even following conversations difficult.
• Digestive issues – Some people experience bloating, nausea, constipation, or diarrhoea, as PoTS can affect how the digestive system functions.

Symptoms That Are Often Overlooked

Because PoTS affects circulation and the nervous system, it can cause symptoms that may not seem directly related to heart rate. Some of the lesser-known symptoms include:

• Temperature regulation problems – Some people sweat excessively, while others struggle to stay warm. The body's ability to adjust to temperature changes is often impaired.
• Frequent headaches and migraines – Circulation changes can contribute to persistent headaches or migraines.
• Shortness of breath – Some people with PoTS feel like they cannot take a deep breath, even when resting.
• Blood pooling in the legs – Poor circulation can cause the legs and feet to turn a reddish or purplish colour when standing.

Why PoTS Symptoms Fluctuate

One of the most frustrating aspects of PoTS is how unpredictable it can be. Some days, symptoms may be manageable, while other days, even basic tasks feel impossible.

Certain factors can make symptoms worse, including:

• Dehydration
• Heat and high temperatures
• Standing still for too long
• Lack of sleep
• Eating large or heavy meals

Understanding these triggers can help people with PoTS make small adjustments to their daily routines to reduce symptom flare-ups.

The Impact of PoTS Symptoms on Daily Life

PoTS is more than just a collection of symptoms—it can change the way someone lives their life. Many people find that tasks they once took for granted, like cooking, shopping, or standing in a queue, suddenly become difficult. The unpredictable nature of PoTS can also make work and socialising harder, as some people feel fine one day but struggle the next.

The emotional impact of PoTS is just as important as the physical symptoms. It is normal to feel frustrated or isolated when dealing with an invisible illness that others may not understand. Support from friends, family, and the PoTS community can make a big difference.

What to Do If You Recognise These Symptoms

If these symptoms sound familiar, it is important to track patterns in how they affect you. Keeping a symptom diary or using a heart rate monitor can help identify trends and possible triggers. This can be useful when speaking with a doctor about diagnosis and treatment.

In the next section, we will discuss how PoTS is diagnosed, including the specific tests doctors use and why the process can sometimes be challenging.

How is PoTS Diagnosed? Understanding the Tests and Why It Often Gets Missed

If you have been struggling with unexplained dizziness, fatigue, or a rapid heartbeat when standing, you might have already gone through multiple doctor visits without clear answers. Many people with PoTS spend years searching for a diagnosis, often being misdiagnosed along the way.

PoTS is not widely recognised by all medical professionals, which means some people are told their symptoms are due to anxiety, dehydration, or even just “standing up too quickly.” This can be frustrating and isolating, especially when you know something is not right.

We are here to help you understand the diagnostic process. Knowing what to expect can make the journey a little easier, and it can also help you advocate for yourself if you feel your symptoms are being dismissed.

Why PoTS is Often Overlooked

One of the biggest challenges in diagnosing PoTS is that its symptoms overlap with many other conditions. Fatigue, dizziness, brain fog, and a racing heart can be linked to everything from anxiety to iron deficiency. Because of this, people with PoTS are often sent for tests that focus on heart or brain function, but not necessarily on how the body responds to standing.

Another issue is that PoTS symptoms can fluctuate. Some days, symptoms might be mild, while other days they are completely debilitating. This means that if a doctor measures blood pressure and heart rate while you are sitting, everything might look normal. Unless your heart rate is measured while changing positions, PoTS might not be detected.

A lack of awareness is also a factor. While PoTS is becoming more widely known, many general practitioners and even some specialists still do not routinely test for it. This means that people often go years without a diagnosis.

The Key Tests Used to Diagnose PoTS

If you suspect you have PoTS, there are specific tests that can confirm it. These tests measure changes in heart rate and blood pressure when moving from a lying or sitting position to standing.

• Active Stand Test – This is one of the simplest ways to check for PoTS. Your heart rate and blood pressure are measured while lying down and then again after standing. If your heart rate increases by 30 beats per minute (or 40 bpm for teenagers) within 10 minutes of standing, it suggests PoTS.
• Tilt Table Test – This is a more controlled version of the active stand test. You lie flat on a special table that slowly tilts you into an upright position while your heart rate and blood pressure are continuously monitored. This test is often done in hospitals or specialist clinics.
• 24-Hour Holter Monitor – Some doctors may use a heart monitor worn for 24 hours to look for patterns in heart rate changes. This can help rule out other heart-related conditions.
• Blood Tests – While no blood test can diagnose PoTS, doctors may check for underlying issues like anaemia, vitamin deficiencies, or autoimmune markers that could be contributing to symptoms.

Keeping Track of Your Symptoms

If you think you might have PoTS, keeping a symptom diary can be helpful. Recording your heart rate at different times of the day, especially when moving from lying down to standing, can provide useful information for doctors.

Many people use a heart rate monitor or smartwatch to track changes. If you consistently notice large increases in heart rate when standing, it may be worth discussing with your doctor.

It can also be helpful to write down any other symptoms you experience, including how they affect daily life. If symptoms are interfering with work, school, or normal activities, be sure to mention this during medical appointments.

The Challenges of Getting Diagnosed

For many people, the journey to a PoTS diagnosis is not straightforward. Some people see multiple doctors before finding one who recognises the condition.

Women, in particular, are often told their symptoms are due to anxiety or hormonal changes. Because PoTS symptoms can be unpredictable, it is sometimes dismissed as “just stress.” This can be incredibly frustrating, especially when symptoms are severe.

If you feel like your symptoms are not being taken seriously, do not be afraid to seek a second opinion. PoTS specialists are usually found in cardiology, neurology, or autonomic clinics, so it may be necessary to ask for a referral.

Other Conditions That Can Be Mistaken for PoTS

Because PoTS symptoms overlap with many other conditions, it is sometimes confused with:

• Anxiety or panic disorder – While PoTS can cause a racing heart, it is not the same as anxiety. Many people with PoTS feel calm but still experience tachycardia when standing.
• Chronic Fatigue Syndrome (ME/CFS) – There is a strong link between PoTS and ME/CFS, as both involve extreme fatigue, brain fog, and difficulty standing for long periods.
• Low blood pressure (hypotension) – Some people with PoTS do experience low blood pressure, but others have normal or even high blood pressure at times.
• Heart arrhythmias – While PoTS involves an increased heart rate, it does not typically cause abnormal heart rhythms like atrial fibrillation.

What to Do If You Are Struggling to Get a Diagnosis

If you suspect you have PoTS but are not getting answers, here are some steps that might help:

• Bring your own data – If possible, record your heart rate changes when standing and bring this information to your appointment.
• Be specific about symptoms – Instead of saying “I feel dizzy,” try explaining exactly when it happens (e.g., “I feel lightheaded every time I stand up, and my heart starts racing”).
• Ask for a referral – If your doctor is unfamiliar with PoTS, ask if you can be referred to a cardiologist or neurologist who specialises in autonomic disorders.
• Join PoTS support groups – Connecting with others who have been through the diagnostic process can provide useful advice and emotional support.

The Relief of Finally Getting Answers

For many people, finally receiving a PoTS diagnosis is a huge relief. Knowing that symptoms have a real medical cause can be validating, especially after years of being dismissed or misdiagnosed.

A diagnosis is the first step towards finding ways to manage symptoms and improve quality of life. While PoTS can be challenging, knowing what you are dealing with makes it easier to take control and find the right treatments.

In the next section, we will explore what causes PoTS and the conditions that are often linked to it. Understanding the possible triggers can help with both diagnosis and treatment.

What Causes PoTS? Understanding the Triggers and Connections to Other Conditions

If you or someone you love has been diagnosed with PoTS, one of the first questions you might ask is: why? Understanding what causes PoTS is not always straightforward. It can develop for different reasons, and sometimes there is no clear trigger at all.

PoTS is a disorder of the autonomic nervous system, which controls automatic functions like heart rate, blood pressure, digestion, and temperature regulation. When this system does not work properly, the body struggles to adjust blood flow when standing, leading to dizziness, a racing heart, and other symptoms.

For some people, PoTS develops suddenly after an illness, pregnancy, or injury. Others have had symptoms for as long as they can remember. While there is still a lot to learn about PoTS, research has identified several possible causes and risk factors.

PoTS After Illness: Can a Virus Trigger It?

Many people with PoTS report that their symptoms started after a viral infection. In recent years, this has become even more apparent with the rise in PoTS cases linked to Long COVID.

Viruses can sometimes affect the autonomic nervous system, triggering long-term problems with blood pressure regulation and heart rate control. This has been seen with viruses like Epstein-Barr (which causes glandular fever/mononucleosis), flu, and now COVID-19.

Post-viral PoTS can be particularly frustrating because there is no obvious injury or medical event to explain the symptoms. One day, a person is healthy, and the next, they are struggling with dizziness, brain fog, and fatigue. For some, symptoms improve over time, while for others, PoTS becomes a long-term condition.

The Link Between PoTS and Autoimmune Conditions

There is growing evidence that PoTS may have an autoimmune component. Some studies suggest that people with PoTS have higher levels of autoantibodies that affect blood vessel function.

Many people with PoTS also have autoimmune diseases, including:

• Lupus
• Sjögren’s syndrome
• Hashimoto’s thyroiditis
• Rheumatoid arthritis

These conditions occur when the immune system mistakenly attacks the body’s own tissues. If PoTS is autoimmune in nature, this could explain why it often appears alongside these conditions. More research is needed, but some doctors are now considering immunotherapy as a potential treatment for certain types of PoTS.

PoTS and Ehlers-Danlos Syndrome: A Common Connection

One of the strongest links in PoTS research is with Ehlers-Danlos Syndrome (EDS). Around 50% of people with hypermobile EDS (hEDS) also have PoTS.

EDS is a connective tissue disorder that affects joints, skin, and blood vessels. People with EDS often experience frequent joint dislocations, stretchy skin, and fragile blood vessels. Because connective tissue helps support blood vessels, it makes sense that weaker connective tissue could contribute to blood pooling and poor circulation, both of which are common in PoTS.

People with both PoTS and EDS often experience symptoms like:

• Chronic joint pain and dislocations
• Easy bruising
• Slow wound healing
• Digestive issues like reflux and gastroparesis

If you have been diagnosed with PoTS and also have hypermobility, it may be worth discussing EDS with your doctor. Identifying both conditions can help with symptom management.

The Role of Hormones in PoTS

PoTS is far more common in women than men, with around 80% of diagnosed cases occurring in females. This has led researchers to believe that hormones may play a role in the condition.

Many women with PoTS notice that their symptoms worsen at certain points in their menstrual cycle, particularly in the days leading up to a period. Hormonal fluctuations can affect blood volume, blood pressure, and circulation, all of which are key factors in PoTS.

Some women also develop PoTS during or after pregnancy. The body undergoes huge cardiovascular changes during pregnancy, and in some cases, this seems to trigger autonomic dysfunction. While some women see improvements after childbirth, others find that PoTS becomes a long-term issue.

Hormonal birth control can also have an impact on PoTS symptoms. Some people find that it helps regulate symptoms, while others notice a worsening. Because every body reacts differently, it is important to work with a doctor to find the best approach.

PoTS After Surgery, Injury, or Trauma

Some people develop PoTS after a physical injury, surgery, or even a major emotional trauma. While the reasons for this are not fully understood, it may be due to a combination of factors, including:

• Blood loss or dehydration during surgery
• Nerve damage affecting autonomic function
• Post-traumatic stress responses affecting heart rate regulation

This type of PoTS can sometimes be mistaken for post-operative complications or anxiety, leading to delayed diagnosis. If symptoms develop after an injury or surgery, it is important to consider PoTS as a possible cause, especially if dizziness, fatigue, and a rapid heart rate persist long after recovery.

PoTS and Long COVID: What We Know So Far

Since the COVID-19 pandemic, doctors have seen a significant increase in PoTS cases. Many people recovering from COVID-19 have developed symptoms of PoTS, sometimes weeks or months after the initial infection.

This has led to increased research into how viral infections affect the autonomic nervous system. Some theories include:

• Damage to nerve pathways that control blood flow
• Immune system changes that trigger autonomic dysfunction
• Ongoing inflammation affecting circulation

For those with Long COVID, PoTS can be one of the most disabling symptoms, making daily activities difficult. While research is still ongoing, doctors are now recognising PoTS as a key part of Long COVID, leading to better awareness and earlier diagnosis.

Is PoTS Genetic? Understanding the Hereditary Link

Some researchers believe that PoTS may have a genetic component. Studies suggest that PoTS can run in families, particularly when it is linked to conditions like Ehlers-Danlos Syndrome or autoimmune diseases.

While there is no single “PoTS gene,” families often report multiple members experiencing similar symptoms. If you have a family history of fainting, dizziness, or unexplained fatigue, it may be worth considering whether PoTS could be a factor.

Why Understanding the Cause of PoTS Matters

For many people, PoTS feels like a mystery illness. Symptoms can appear suddenly, and the lack of clear causes can make it difficult to understand. But as research advances, we are learning more about the different types of PoTS and how they develop.

Knowing what triggered PoTS in the first place can help with treatment decisions. If PoTS is linked to an autoimmune condition, immune-based treatments may be an option. If it developed after an infection, focusing on reducing inflammation might help. If it is connected to hypermobility, strengthening connective tissue through physical therapy could be beneficial.

While PoTS can be frustrating and unpredictable, understanding the possible causes gives people a better sense of control.

In the next section, we will explore what daily life is like with PoTS, including practical strategies for managing symptoms and making everyday tasks easier. No matter how PoTS started, learning how to live well with it is the most important step forward.

Living with PoTS: How to Manage Daily Life and Reduce Symptoms

Receiving a PoTS diagnosis can be a relief, but it can also feel overwhelming. There is no quick fix, and symptoms can vary from day to day, making it difficult to plan ahead. But while PoTS can be challenging, it does not mean that life has to stop. With the right strategies and support, it is possible to manage symptoms and regain some control over daily life.

We understand how frustrating it can be to feel like your body is working against you. You might feel fine one moment and completely exhausted the next. Activities that used to be easy, like cooking, shopping, or even standing in the shower, can suddenly feel impossible. But you are not alone in this. Many people with PoTS have found ways to make daily life easier, and we are here to share those tips with you.

One of the biggest challenges of PoTS is learning to manage your energy. It is tempting to push through symptoms on a good day, only to crash the next. This is known as the “boom and bust” cycle, and it can make symptoms worse over time.

Pacing is about balancing activity and rest. It means listening to your body and recognising when to slow down before exhaustion sets in. Some people find it helpful to break tasks into smaller steps, taking regular breaks rather than trying to do everything at once.

A good way to manage pacing is to use the "energy envelope" theory. Imagine your energy is like a battery. Each activity you do drains the battery, and rest helps recharge it. The key is to avoid completely depleting the battery, as this can lead to longer recovery times.

The Role of Hydration and Salt in Managing PoTS

One of the most important lifestyle changes for managing PoTS is increasing fluid and salt intake. This helps to expand blood volume, making it easier for the body to regulate circulation.

Many doctors recommend drinking at least 2-3 litres of water per day. Some people also benefit from electrolyte drinks, which help the body retain fluids.

Salt is equally important. While most people are told to limit salt, those with PoTS often need extra sodium to help maintain blood pressure. Adding salt to meals, eating salty snacks, or using salt tablets can all help. Some studies suggest that people with PoTS may need between 3,000 and 10,000 mg of sodium per day, but it is always best to check with a doctor before making big dietary changes.

Eating Well with PoTS: How Food Can Affect Symptoms

Many people with PoTS notice that symptoms worsen after eating. This is because digestion requires a lot of blood flow, which can lead to less blood being available for the brain and heart.

Some tips for managing symptoms around meals include:

• Eating smaller, more frequent meals instead of large meals
• Avoiding heavy carbohydrates and processed sugar, which can cause blood sugar spikes and crashes
• Staying hydrated before and after meals
• Sitting or lying down after eating to reduce post-meal dizziness

Some people with PoTS also have food sensitivities, particularly to gluten, dairy, or high-histamine foods. If symptoms flare up after certain meals, keeping a food diary may help identify triggers.

Exercise and PoTS: Finding the Right Balance

Exercise can feel impossible with PoTS, but it is actually one of the most effective long-term management strategies. The challenge is finding the right type and intensity.

For many people, standing exercises trigger symptoms, so it is best to start with exercises that can be done lying down or sitting. Some of the most recommended exercises for PoTS include:

• Recumbent cycling
• Swimming or water aerobics
• Rowing machines
• Pilates or seated strength training

Gradually increasing exercise tolerance can help the body adjust and improve circulation over time. However, it is important to start slowly and listen to your body. Overdoing it can lead to symptom flare-ups, so a structured, gradual approach is best.

Dealing with Brain Fog: How to Stay Organised and Focused

Brain fog is one of the most frustrating PoTS symptoms. It can make it hard to concentrate, remember things, or process information quickly. This can affect work, studying, and even conversations with friends and family.

Some ways to manage brain fog include:

• Using reminders, alarms, and apps to track important tasks
• Breaking work into small, manageable steps
• Taking regular breaks to avoid mental exhaustion
• Getting enough sleep and rest, as fatigue can make brain fog worse

Many people with PoTS find that brain fog improves when their overall symptoms are better managed, particularly with hydration, pacing, and proper nutrition.

Standing and Walking with PoTS: Preventing Dizziness and Fainting

One of the biggest daily challenges with PoTS is dealing with dizziness and near-fainting when standing. Some simple strategies can help reduce these episodes:

• Crossing and tensing leg muscles when standing still can help push blood back up to the heart
• Using mobility aids like a cane or walker for extra stability
• Wearing compression socks or tights to reduce blood pooling in the legs
• Sitting down whenever possible, such as while cooking or brushing teeth

Some people also find that raising the head of their bed slightly at night helps improve circulation and reduces morning dizziness.

Navigating A Social Life with PoTS

PoTS can make socialising more difficult, especially when symptoms are unpredictable. But staying connected with friends and family is important for mental well-being.

Some ways to make social events easier include:

• Choosing locations with seating and minimal standing time
• Letting friends know in advance about PoTS and what to expect
• Planning activities during times of the day when symptoms are usually better
• Being kind to yourself if you need to cancel or reschedule

It is okay to say no to events that feel too overwhelming, and true friends will understand that PoTS is not something you can control.

Managing PoTS at Work or School

Work and education can be particularly challenging with PoTS, but there are ways to make it more manageable. Some people find that working from home or having flexible hours helps reduce stress and exhaustion.

For those who need to be in a workplace or classroom, accommodations can help, such as:

• Using a stool or chair instead of standing for long periods
• Taking regular hydration and movement breaks
• Having a quiet space available for rest if needed
• Using assistive technology or note-taking apps to help with brain fog

Many countries have workplace and education disability rights, which means reasonable accommodations can be requested. Speaking to an employer or school about PoTS can help create a more supportive environment.

The Emotional Impact of Living with PoTS

PoTS is not just a physical condition—it can have a big emotional toll as well. It is normal to feel frustrated, anxious, or even depressed when dealing with a chronic illness. Some people grieve the loss of the life they had before PoTS, while others struggle with the uncertainty of symptoms.

Seeking support is important. Some helpful resources include:

• Online or in-person support groups
• Counselling or therapy, particularly for managing the emotional side of chronic illness
• Connecting with others who understand what life with PoTS is like

Having PoTS does not mean you have to go through it alone. There are many people who understand and want to help.

Finding a New Normal with PoTS

PoTS can change life in unexpected ways, but it does not have to define who you are. By learning how to manage symptoms, finding support, and making small adjustments, it is possible to regain a sense of control.

In the next section, we will explore the different treatments available for PoTS, including medications, lifestyle changes, and emerging therapies that could help improve quality of life. Understanding these options can help you make informed decisions about managing PoTS in a way that works best for you.

Treatments and Management: What Actually Helps with PoTS?

Living with PoTS can feel like a constant balancing act. Some days, symptoms might be manageable, while other days even the simplest tasks feel overwhelming. There is no single cure for PoTS, but the good news is that there are many ways to manage it. With the right combination of lifestyle changes, medications, and support, many people find ways to improve their quality of life.

We understand how frustrating it can be to search for answers and try different treatments, hoping for something that works. Everyone’s experience with PoTS is different, so what helps one person might not work for another. The key is to find what works best for you, and we are here to guide you through the options.

Lifestyle Changes: The First Step in Managing PoTS

For many people with PoTS, simple lifestyle adjustments can make a huge difference. These changes help support the body’s ability to regulate blood pressure and circulation, reducing dizziness, fatigue, and heart palpitations.

• Increasing Fluid Intake – Most people with PoTS need to drink at least 2-3 litres of fluids per day. Water is essential, but electrolyte drinks can be even more helpful as they help the body retain fluids and maintain proper blood volume.
• Adding More Salt – Unlike the general advice to limit salt, people with PoTS often need extra sodium. Salt helps the body retain water, increasing blood volume and stabilising blood pressure. Doctors often recommend 3,000 to 10,000 mg of sodium per day, but this varies by individual. Adding salt to meals, drinking broth, or using salt tablets are common ways to increase intake.
• Wearing Compression Garments – Compression socks or tights help prevent blood from pooling in the legs, which can reduce dizziness and fainting. Some people also benefit from abdominal compression garments.
• Sleeping with the Head of the Bed Raised – Raising the head of the bed slightly can help reduce morning dizziness by allowing the body to adjust gradually to an upright position.
• Avoiding Triggers – Heat, standing still for long periods, and large meals can all make symptoms worse. Learning what triggers your symptoms can help you adjust your daily routine.

While these lifestyle changes might seem simple, they can have a big impact on symptoms when followed consistently.

Medications for PoTS: What Doctors Might Prescribe

In addition to lifestyle adjustments, some people with PoTS benefit from medications. These are not a cure, but they can help reduce symptoms and improve quality of life.

• Fludrocortisone – This medication helps the body retain more salt and water, increasing blood volume and reducing dizziness. It is often used as a first-line treatment for PoTS.
• Midodrine – This medication helps tighten blood vessels, making it easier for the body to maintain blood pressure when standing. It can be particularly helpful for people who experience frequent fainting.
• Beta Blockers – Medications like propranolol help slow the heart rate, making tachycardia (a racing heart) less severe. These can be useful for people whose main PoTS symptom is an excessively high heart rate.
• Ivabradine – This medication is sometimes used instead of beta blockers to control heart rate without lowering blood pressure. It is often prescribed when beta blockers are not well tolerated.
• Pyridostigmine – Originally used for conditions like myasthenia gravis, this medication helps regulate the autonomic nervous system and improve blood flow.
• SSRIs and SNRIs – Some antidepressants, such as fluoxetine or venlafaxine, can help stabilise autonomic function. They are not used to treat depression in PoTS patients but rather to help balance the nervous system.

Not everyone with PoTS needs medication, and it can take time to find the right combination. Working with a knowledgeable doctor is important to ensure that treatments are tailored to individual symptoms.

Exercise and Physical Therapy: Strengthening the Body Safely

Exercise might seem impossible when standing makes you feel dizzy, but it is actually one of the best long-term treatments for PoTS. The key is to start slowly and choose the right types of exercises.

Many doctors recommend a recumbent exercise program, which focuses on building strength while avoiding prolonged standing. Some of the best options include:

• Recumbent cycling – This allows you to exercise while seated, reducing dizziness.
• Rowing machines – These provide a full-body workout without the need to stand.
• Swimming or water aerobics – Water helps support the body and improves circulation.
• Pilates or gentle strength training – Core and leg muscle strengthening can help improve blood flow over time.

Most exercise programs for PoTS start with a few minutes of activity and gradually increase over several weeks. Many people find that as they get stronger, symptoms improve, and they can tolerate more activity.

Alternative and Complementary Therapies for PoTS

In addition to standard treatments, some people with PoTS find relief through alternative therapies. While research is still limited, some options that people report finding helpful include:

• Acupuncture – Some studies suggest that acupuncture may help regulate the autonomic nervous system.
• Massage therapy – Gentle massage can help improve circulation and reduce muscle tension.
• Mindfulness and meditation – Stress can make PoTS symptoms worse, so relaxation techniques can be beneficial.
• Dietary changes – Some people find that eliminating gluten, dairy, or processed sugar helps with symptom management.

While these therapies might not work for everyone, they can be worth exploring alongside other treatments.

Managing PoTS in Emergency Situations

PoTS symptoms can sometimes escalate to the point where medical attention is needed. Understanding what to do in an emergency can help reduce anxiety and keep you safe.

• If you feel faint, sit or lie down immediately – This helps prevent falls and injuries. Elevating your legs can help blood return to the heart more quickly.
• Carry medical ID – In situations where you are unable to explain your condition, a medical ID card can provide essential information. Our PoTS medical ID cards are designed to help communicate your condition quickly, whether you are in a hospital, travelling, or out in public.
• Know when to seek medical help – While PoTS itself is not life-threatening, symptoms can sometimes be severe. If you experience prolonged fainting episodes, chest pain, or extreme shortness of breath, seek medical attention.

Having a plan in place for emergencies can provide peace of mind and make it easier to navigate daily life with PoTS.

Finding the Right Treatment Plan for You

There is no single treatment that works for everyone with PoTS. Some people find that lifestyle changes alone are enough to manage symptoms, while others need medications or physical therapy.

The most important thing is to work with a doctor who understands PoTS and is willing to help find the right approach for you. It can take time to figure out what works, but with patience and persistence, many people see improvements over time.

In the next section, we will look at how to stay safe in emergency situations with PoTS, including why carrying a medical ID and knowing how to manage severe symptoms is so important. By being prepared, you can feel more confident in handling any challenges that arise.

PoTS and Emergency Situations: How to Stay Safe and Be Prepared

Living with PoTS means learning how to navigate unpredictable symptoms. Most of the time, people with PoTS can manage their condition through lifestyle changes, medications, and pacing their activities. But sometimes, symptoms can escalate unexpectedly, leading to situations where quick action is needed.

We understand how frightening it can be to feel dizzy, faint, or unable to catch your breath in a public place or when alone at home. Knowing how to handle these situations can reduce anxiety and keep you safe. In this section, we will go over the key steps to take during a PoTS-related emergency, as well as how to prepare ahead of time so that you feel more confident in managing severe symptoms.

Recognising the Signs of a PoTS Emergency

PoTS itself is not considered life-threatening, but it can cause symptoms that feel extremely serious. Some of the most common emergency situations related to PoTS include:

• Severe dizziness or near-fainting that does not improve – If you feel like you are going to pass out and the usual tricks (sitting down, hydrating, crossing your legs) are not helping, you may need extra support.
• Frequent fainting episodes – While some people with PoTS faint regularly, a sudden increase in fainting frequency or duration can indicate the need for medical attention.
• Shortness of breath or difficulty breathing – PoTS can cause breathlessness, but if breathing becomes extremely difficult or painful, it is important to seek medical help.
• Uncontrolled heart palpitations – A racing heart is common with PoTS, but if your heart rate suddenly becomes much higher than normal and does not slow down with hydration or lying down, this may need urgent evaluation.
• Severe dehydration – People with PoTS need extra fluids, and severe dehydration can quickly make symptoms worse. If you are unable to keep fluids down due to vomiting or illness, medical assistance may be needed.

Recognising when symptoms are more severe than usual is an important part of staying safe. It is always better to seek help if you feel unsure about your condition.

What to Do If You Feel Like You Are Going to Faint

Fainting, or near-fainting episodes, are common in PoTS. Some people feel warning signs, such as dizziness, vision changes, nausea, or an overwhelming sense of exhaustion. If you feel like you might faint, taking action quickly can help prevent injury.

• Sit or lie down immediately – Do not try to push through the dizziness. Getting low to the ground can reduce the chance of falling.
• Raise your legs – Elevating your legs helps blood return to your brain, which can stop fainting from progressing.
• Cross your legs and squeeze your muscles – If you cannot lie down, tensing your leg and abdominal muscles can help push blood back to your heart.
• Drink water with electrolytes – If dehydration is contributing to dizziness, rehydrating can help improve symptoms.
• Use a cooling cloth – If heat is making symptoms worse, placing a cold cloth on your neck or wrists can help regulate your body temperature.

If you do faint, try not to panic. Most PoTS-related fainting episodes are brief, and people regain consciousness within seconds or minutes. However, if fainting is happening frequently or lasting longer than usual, medical advice should be sought.

How to Explain PoTS in an Emergency

If you experience a severe PoTS episode in public or need medical help, it can be frustrating when others do not understand the condition. Many healthcare professionals are still unfamiliar with PoTS, and symptoms are sometimes mistaken for anxiety or panic attacks.

Having a prepared way to explain PoTS can be helpful. You might say something like:

• "I have a condition called PoTS, which affects my blood circulation. When I stand up, my heart rate increases rapidly, and I sometimes feel dizzy or faint. I need to sit or lie down and drink fluids to feel better."
• "My heart is racing because my body is struggling to regulate my blood pressure. It is not a heart attack or anxiety, but I do need time to recover."

It is also helpful to carry a PoTS medical ID card that explains your condition. Our PoTS medical ID cards are designed for situations like this, allowing you to communicate essential information quickly, whether you are in a hospital, travelling, or simply out in public.

The Importance of Carrying Emergency Supplies

Being prepared for a PoTS flare-up can make a big difference in how well you manage symptoms. Many people with PoTS carry a small emergency kit with them when they leave the house. Some useful items to include are:

• A water bottle with electrolytes
• Salty snacks or salt tablets
• Cooling wipes or a handheld fan
• A folding cane or portable stool for resting
• Compression socks
• Medication (if prescribed)
• A PoTS medical ID card

Having these supplies on hand can help you manage symptoms before they escalate into a more serious situation.

When to Go to the Hospital

Most PoTS symptoms can be managed at home, but there are times when seeking medical help is necessary. Some signs that require urgent medical attention include:

• Chest pain or severe shortness of breath that does not improve
• Fainting that lasts longer than a few minutes
• Uncontrollable vomiting leading to dehydration
• A sudden change in symptoms that feels different from your usual PoTS episodes

If you go to the hospital, be prepared to explain PoTS to the medical staff. Some hospitals are familiar with the condition, while others may not be. Bringing medical documentation, a symptom history, and a list of medications can be helpful.

Travelling with PoTS: How to Stay Safe on the Go

Travelling with PoTS can be challenging, but it is possible with the right planning. Some key tips for managing symptoms while travelling include:

• Staying hydrated, especially during flights where dehydration is common
• Wearing compression socks to support circulation
• Requesting airport assistance if walking long distances is difficult
• Taking regular breaks during road trips to stretch and move
• Carrying extra medication and medical ID for emergencies

Planning ahead can help reduce stress and make travel more enjoyable, even with PoTS.

The Role of Support Systems in Managing PoTS Emergencies

Having a strong support system can make a big difference in how you handle PoTS-related emergencies. Letting family, friends, and coworkers know about PoTS can help them understand what to do if you experience severe symptoms.

Some people with PoTS find it helpful to have a medical action plan in place. This can include:

• A list of emergency contacts
• Instructions for what to do if you faint or have a severe episode
• Information on when to seek medical help

Having a plan ensures that those around you know how to help when needed.

While PoTS can be unpredictable, being prepared can help you feel more in control. Knowing what to do in an emergency, carrying essential supplies, and having a support system in place all make it easier to manage symptoms.

In the next section, we will explore the future of PoTS research, treatment advancements, and the growing awareness of this condition. While PoTS can be challenging, there is hope for better treatments and greater recognition in the medical community.

The Future with PoTS: Research, Awareness, and Hope for Better Treatment

For many years, PoTS was a little-known condition, often dismissed or misdiagnosed. People with PoTS struggled to get recognition from medical professionals, and many were told their symptoms were psychological or simply a result of poor fitness. But things are changing. As more people are diagnosed, research is growing, and awareness is increasing.

We understand how difficult it can be to live with PoTS. You might wonder if things will ever get easier or if there will ever be better treatments. While there is still a long way to go, progress is happening. In this section, we will look at the latest research, new treatment possibilities, and the growing recognition of PoTS within the medical community.

Why PoTS Research is So Important

One of the biggest challenges with PoTS is that it is not fully understood. Unlike conditions that have been studied for decades, PoTS research is still in its early stages. However, as more doctors and scientists recognise the impact of PoTS, research is beginning to pick up pace.

Some of the key areas of PoTS research include:

• Understanding the role of the immune system and whether PoTS has an autoimmune connection
• Investigating why PoTS is more common in women and how hormones affect symptoms
• Exploring how PoTS is linked to other conditions like Ehlers-Danlos Syndrome, Long COVID, and Chronic Fatigue Syndrome
• Developing new medications and treatment options that target the root cause of PoTS rather than just managing symptoms

These studies are helping to paint a clearer picture of PoTS and could lead to better diagnosis and treatment in the future.

The Link Between PoTS and Long COVID: What We Are Learning

One of the biggest developments in PoTS research in recent years has been the connection to Long COVID. Since the COVID-19 pandemic, there has been a sharp increase in the number of people developing PoTS symptoms after recovering from the virus.

Studies have found that COVID-19 can cause damage to the autonomic nervous system, leading to circulation problems, dizziness, brain fog, and extreme fatigue—symptoms that are very similar to PoTS. As a result, PoTS is now being studied more closely by researchers trying to understand Long COVID.

This has led to:

• More funding for PoTS research
• Greater recognition of PoTS in the medical field
• Increased awareness among doctors, meaning faster diagnoses for some patients

Although developing PoTS after an illness is not new—many people developed PoTS after viruses like glandular fever or the flu—Long COVID has put a global spotlight on autonomic disorders. This could lead to major breakthroughs in understanding and treating PoTS.

New and Emerging Treatments for PoTS

Currently, there is no single medication designed specifically for PoTS. Most treatments involve repurposing existing medications, such as beta blockers or medications for low blood pressure. However, researchers are now exploring new treatment possibilities, including:

• Immune-based treatments – Since some studies suggest that PoTS may have an autoimmune component, researchers are looking at whether immune-modulating treatments could help.
• Gene therapy research – Some scientists are exploring whether there is a genetic component to PoTS and whether gene-targeting treatments could help manage symptoms.
• New heart rate and blood pressure medications – Research is underway to develop medications that specifically target autonomic dysfunction rather than just controlling symptoms.

While these treatments are still in development, they offer hope for the future.

Raising Awareness: Why It Matters

One of the biggest barriers to better treatment for PoTS is lack of awareness. Many doctors are still unfamiliar with the condition, and patients often struggle for years before receiving a diagnosis. But things are starting to change.

• More advocacy groups are working to educate the public and medical community about PoTS.
• High-profile cases of PoTS are appearing in the media, helping to bring attention to the condition.
• Medical schools are starting to include more information about autonomic disorders in their training programs.

We know that raising awareness does not happen overnight, but every step forward makes a difference.

If you live with PoTS or have a loved one with the condition, there are ways you can help increase awareness:

• Share your story – Many people have no idea what PoTS is until they hear about it from someone who has experienced it firsthand. Sharing your experience on social media or through advocacy groups can help others feel less alone.
• Talk to your doctor – Some doctors are still unfamiliar with PoTS. If you have a doctor who has not heard of it, providing them with reliable resources can help improve understanding.
• Support research efforts – Many PoTS charities and research organisations rely on donations and fundraising to support studies. Getting involved in these efforts can help push research forward.
• Encourage education in schools and workplaces – PoTS affects people of all ages, including students and workers. Encouraging better education about chronic illnesses can make schools and workplaces more inclusive.

Every small step helps bring more awareness to PoTS and makes it easier for future generations to get diagnosed and treated more quickly.

If you have PoTS, it is understandable to feel frustrated or discouraged at times. The unpredictable symptoms, the long journey to diagnosis, and the struggle to find effective treatments can be exhausting. But you are not alone, and there is hope.

The medical community is paying more attention to PoTS than ever before. Researchers are working hard to find better treatments, and awareness is growing. More people are getting diagnosed earlier, and the support network for those with PoTS is stronger than it has ever been.

We believe that things will continue to improve. More research, more understanding, and more advocacy mean a brighter future for everyone living with PoTS.

While managing PoTS can be challenging, it is possible to live a fulfilling life with the right support and strategies. The journey is not always easy, but with increased awareness and better treatments on the horizon, the future is looking brighter for those with PoTS.

Living with PoTS: Finding Support, Managing Symptoms, and Medical Cards

We hope you have found this guide to PoTS helpful. We know how overwhelming it can be to receive a diagnosis or to suspect that you might have PoTS but struggle to get the answers you need. Whether you are just beginning your journey or have been living with PoTS for years, we want you to know that you are not alone. Understanding PoTS is the first step toward managing it, and there are many ways to improve daily life, reduce symptoms, and stay safe.

One of the biggest challenges with PoTS is making others aware of your condition, especially in emergency situations or when symptoms flare up in public. This is where carrying a PoTS medical ID card can be invaluable.

Why Having a PoTS Medical Card Can Make Life Easier

If you have PoTS, you have probably had moments where you needed to explain your condition quickly—whether to a medical professional, a colleague, or even a stranger. PoTS symptoms can sometimes be mistaken for anxiety, panic attacks, or other medical conditions, and not everyone understands how to respond.

Our PoTS medical ID cards are designed to help with exactly this. They provide clear, essential information about your condition so that you do not have to explain everything in the middle of a flare-up. Whether you experience dizziness, fainting, or a sudden increase in heart rate, having a card on hand can help communicate your needs.

• Emergency responders and medical professionals will immediately know that you have PoTS, reducing the risk of misdiagnosis in a crisis.
• Friends, family, and colleagues will have a simple way to understand your condition and know how to help if needed.
• Public situations—such as shopping, commuting, or travelling—become easier when you have a way to explain your condition quickly.

Our PoTS awareness cards are also a great way to educate others about PoTS. Many people have never heard of the condition, and an awareness card can help spread understanding and reduce the frustration of constantly having to explain yourself.

If you would like to learn more about our PoTS medical and awareness cards, visit our website: The Card Project UK. Our cards are credit card-sized, durable, and made from biodegradable plastic, making them easy to carry with you wherever you go.

You Are Not Alone: Hope and Encouragement for the Future

Living with PoTS can be challenging, but it does not define who you are. You are strong, resilient, and capable of adapting to the changes that PoTS brings. Some days will be harder than others, but you are not alone in this journey. There is a growing community of people with PoTS, as well as researchers, doctors, and advocates working to improve understanding and treatment.

We hope this article has given you the information, support, and encouragement you need to move forward with confidence. No matter where you are in your PoTS journey, remember that there is always hope, and better days are ahead.

Essential Resources for Individuals Newly Diagnosed with PoTS in the UK

Postural Tachycardia Syndrome (PoTS) can be a challenging condition to navigate, especially following a recent diagnosis. Accessing reliable information and support is crucial. Here are some UK-based resources dedicated exclusively to PoTS that can provide valuable assistance:

PoTS UK

PoTS UK is a registered charity committed to offering comprehensive information and support to those affected by PoTS. Their website features detailed explanations of the condition, management strategies, and resources tailored for both patients and healthcare professionals. They also organise online peer support groups, allowing individuals to connect and share experiences with others facing similar challenges.

NHS: Postural Tachycardia Syndrome (PoTS)

The NHS provides a dedicated section on PoTS, offering an overview of the condition, its symptoms, potential causes, and management options. This resource ensures that individuals have access to accurate and up-to-date information, aiding in understanding and managing the condition effectively.

British Heart Foundation: PoTS Information

The British Heart Foundation offers information on PoTS, including insights into symptoms, diagnosis, and treatment options. Their resources are designed to help individuals understand their condition and explore available management strategies.

Engaging with these resources can provide essential knowledge and support, helping individuals manage PoTS more effectively and improve their quality of life.