Living With POTS – Australian POTS Foundation

Newly Diagnosed With POTS?

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What is POTS?

Postural Orthostatic Tachycardia Syndrome, commonly referred to as POTS, is a complex and often misunderstood condition that affects the autonomic nervous system. This system controls things your body does automatically such as controlling your heart rate, breathing and digestion. When it’s not working correctly, it can cause a multitude of symptoms that seem unrelated to each other. Sometimes POTS is referred to as dysautonomia, which is an umbrella term for multiple conditions that affect the autonomic nervous system.

What is the Autonomic Nervous System (ANS)?

The ANS is like your body’s autopilot system. It’s in charge of all the things you don’t have to think about, like breathing, digesting food, keeping your heart beating regularly, controlling temperature, regulating sweating, managing glucose and insulin levels, and even overseeing bladder function. Essentially, it controls the “automatic” functions of your body.

The ANS has two main branches: the sympathetic nervous system and the parasympathetic nervous system. Think of them as two sides of a balancing scale, working together to keep your body in harmony.

What are the symptoms of POTS?

It’s important to know that POTS can affect people in various ways, and symptoms can be very different from one person to another. Some people might only have mild symptoms that they can manage easily, while others might have more serious symptoms that make everyday life harder. Symptoms might also come and go over time. POTS can bring about symptoms that affect different parts of the body:

Heart and Circulation Symptoms: A key symptom of POTS is a fast heartbeat when standing up, called tachycardia. People may feel palpitations, chest pain, or dizziness due to changes in blood flow and the heart rate response to this.

Neurological Symptoms: Many people with POTS report feeling dizzy, having trouble concentrating which is sometime referred to as ‘brain fog’. Headaches, including migraines, are also common in POTS. Some people also have sensory problems like tingling or numbness.

Stomach and Digestive Symptoms: POTS can affect digestion, causing symptoms such as feeling sick, tummy pain, bloating, or irregular bowel movements. These symptoms can make it hard to eat well and stay healthy.

Tiredness and Weakness: Feeling tired all the time and being weak are common in POTS. Tiredness might get worse when standing or doing activities because the body is working harder to keep blood flowing properly.

Temperature Problems: POTS can interfere with how the body controls temperature, making people feel too hot or too cold, sweat a lot, or have temperature changes.

Bladder Issues: Some individuals with POTS may experience bladder problems, such as increased frequency or urgency to urinate.

Vision Changes: POTS can sometimes affect eyesight, causing blurry vision or difficulty focusing.

Sweating Abnormalities: POTS can lead to sweating problems, including excessive sweating or difficulty sweating when needed.

Who Gets POTS?

POTS can happen to anyone, but it often shows up in teenagers and young adults, usually between 15 and 50 years old. However, it can also effect kids and older adults.

POTS tends to affect more girls and women than boys and men. In fact, studies suggest that about five times more females are diagnosed with POTS compared to males. Scientists are still figuring out why there’s a difference between genders.

What Causes POTS?

POTS is a condition with complex origins, and its exact causes are not always clear. Sometimes symptoms start suddenly after certain events or conditions:

Infections and Viral Illnesses: POTS may develop following an infection or viral illness, such as COVID-19 or glandular fever. It’s thought that the body’s immune response to the infection may trigger changes in the autonomic nervous system, leading to the onset of POTS symptoms.

Surgery and Trauma: POTS can also be triggered by surgery or traumatic events, including concussions. These events can disrupt the communication between the brain and the autonomic nervous system.

Hormonal Changes: Hormonal fluctuations during significant life events such as pregnancy, menopause, or puberty can sometimes trigger POTS symptoms. Changes in hormone levels can affect blood volume, circulation, and the functioning of the autonomic nervous and immune system, potentially leading to the onset of POTS.

Connective Tissue Disorders: Individuals with hypermobile Ehlers-Danlos syndrome (hEDS), a connective tissue disorder, are at an increased risk of developing POTS.

What is the Prognosis for POTS?

In the past, doctors believed that people might outgrow POTS. However, we now understand that POTS can be a fluctuating condition that can affect people for a long time. Individuals with hypermobility are more likely to experience long-term symptoms. How severely POTS affects a person can vary greatly from one individual to another.

Several factors can influence the prognosis of POTS:

Symptom Severity: The severity of symptoms can differ widely among those with POTS. While some may have mild symptoms, others may experience more significant challenges.

Underlying Health Conditions: Whether someone experiences POTS by itself or alongside other health conditions can affect how things turn out. It’s really important to take care of any other health problems they might have to help manage POTS better.

Treatment Response: The effectiveness of treatments can significantly affect prognosis. People who respond well to lifestyle changes, medications, or therapies are likely to have better symptom control and quality of life.

Individual Factors: Personal factors such as age, overall health, and social supports also play a role in prognosis.

How is POTS Diagnosed?

When it comes to diagnosing POTS, doctors often start by ruling out other possible causes of similar symptoms. Conditions like thyroid disorders, dehydration, poor nutrition, and anaemia can sometimes mimic the symptoms of POTS. Once these other conditions are ruled out, doctors can move forward with diagnosing POTS.

Diagnostic Criteria:There are specific criteria that doctors use to diagnose POTS. These criteria include:

1. A significant increase in heart rate within the first 10 minutes of standing up (>30 beats heart rate rise from laying to standing for adults, or >120 bpm during the standing test).

2. No significant drop in blood pressure in the first 3 minutes of standing up

3. Symptoms like dizziness, light-headedness, or fainting that get better when lying down

4. Symptoms lasting for at least three months

5. No other known illnesses that may be causing the symptoms

Active Standing Test: One-way doctors diagnose POTS is by using what’s called an active standing test. During this test, your doctor will check your heart rate and blood pressure while you’re lying down and then again after you stand up. If your heart rate increases by a certain amount (at least 30 beats per minute) within the first 10 minutes of standing up, and if you have symptoms like dizziness or light-headedness, it might suggest POTS.

Additional Tests: To rule out other conditions and confirm a diagnosis of POTS, your doctor might order additional tests. Holter monitors and echocardiograms are sometimes used to check for heart rhythm abnormalities or structural issues in the heart. While tilt table tests aren’t necessary to diagnose POTS, some cardiologists might use them to confirm the diagnosis.

Malmo POTS Survey: Researchers in Sweden have developed a simple questionnaire that helps Doctors to know if a person might have POTS. You can find a link to both the ‘Active Standing Test’ and ‘Malmo POTS survey’ resources below.

Are There Treatments for POTS?

While there’s no cure for POTS, there are some treatments which can help to manage symptoms and improve quality of life.

Lifestyle Modifications

Increase Fluid and Salt Intake: Drinking plenty of fluids and increasing salt intake can help expand blood volume and improve symptoms. Aim for at least 2 to 3 litres of water per day and increase salt intake to around 5 to 10 grams per day under medical supervision. Supplementation by way of electrolyte and salt drinks is often helpful. (Discounts on electrolyte drinks are available for Australian POTS Foundation members. See our membership page.)

Use of Compression Wear: Wearing compression garments, especially from the ankles to the waist with a compression level greater than 20mmHg, can help improve blood circulation and reduce symptoms like light-headedness. Although any grade compression is better than none. (Some excellent discounts on compression wear are available for Australian POTS Foundation members. See our membership page for more information.)

Exercise: Regular exercise can improve vagus nerve tone and increase blood volume, which can help manage POTS symptoms. Start slowly and gradually increase intensity under the guidance of a healthcare professional, especially if significant fatigue is present. Starting with exercises that can be undertaken while seated (like rowing or cycling) are usually the best to start with.

Pharmacotherapy Management

If lifestyle changes alone do not improve your symptoms, then your doctor may consider some medications. In Australia, all medications for POTS are used ‘off-script’. We are working hard to get certain medications ‘indicated’ for POTS by the Australian Therapeutic Goods Administration (TGA). If you would like to know more about this, please CLICK HERE.

Medications

Midodrine: This medication helps constrict blood vessels in the legs and abdomen, helping to improve blood flow to the heart and brain.

Ivabradine: Ivabradine is another medication that can lower heart rate and improve symptoms of POTS.

Fludrocortisone: Fludrocortisone helps increase blood volume by promoting salt and fluid retention in the body.

Propranolol: Propranolol is a beta-blocker that can help control heart rate and reduce symptoms like palpitations and tachycardia.

Other Medications: In some cases, other medications such as antihistamines for allergic reactions or medications for gastrointestinal
symptoms may be prescribed to help manage specific symptoms associated with POTS.

Other Supportive Therapies

Vagus Nerve Stimulation:
Techniques such as deep breathing exercises, vagus nerve stimulation, and cold-water
therapy are thought to stimulate the vagus nerve, which plays a role in
regulating heart rate and blood pressure. Humming and singing are also thought to be beneficial for the same reasons. These ‘techniques’ are experimental and require more research to understand if they are beneficial for managing POTS symptoms.

Resources

AusDoc Therapy Update

Researchers from Adelaide University have provided a therapeutic overview of POTS for doctors in Australia. This can be a helpful resource for patients to give to their treating GP’s and specialists.

Info sheets

The below info sheets summarise information about key diagnostic tools and therapies related to POTS.

POTS IN...

These resources are designed to help people living with POTS navigate day-to-day life in different contexts, and understand the various resources and support available to them.

Watch this space for more resources in this series coming soon…

POTS Bravehearts

My name is Zoe and my children, and I all have POTS.

My oldest child was 13 when she started experiencing continuous headaches, extreme fatigue, dizziness, fainting, stomach and pain issues. We were in and out of the hospital and our experience was not an easy one. A number of times we were told that it was in her head. We even got told once that she just had to learn to “live with it”. She was so unwell that she had to home school for a year and it felt like her whole future was being ripped away from her.

It took over a year for me to research and find what I thought may be wrong with her and then a few more months before a doctor diagnosed her with POTS. Fast forward to my youngest child turning 13 and her health deteriorated quickly but at least this time we knew what was wrong.

Caring for children who have chronic health can be all-consuming and so exhausting. I find I am constantly second-guessing myself. I find must advocate hard for my children but at the same time I’m also grieving for my children’s ability to do the things every normal teen should be doing. It definitely takes its toll on me.

We were lucky enough to hear about a wonderful cardiologist and a clinical nurse in Adelaide who understood POTS and who have really changed my children’s lives. While going through the process of diagnosis I started to realise that my diagnosis of chronic fatigue at 13 was probably not right and subsequently with further testing I was also diagnosed as having POTS. Suddenly so many parts of my life started to make sense. We have since learnt a lot about POTS and the many conditions that go along with it. It sounds terrible but it has been great to finally put all the pieces of the puzzle together and learn about ourselves.

In our house, we have a ‘no victim mentality’ rule. We are allowed to get angry, upset, frustrated and sad but we always focus on what we can do. We are resilient but tired. For anyone who has just been diagnosed please look after yourself, seek help if you need it and know that there is a way of managing POTS and that life may not return to normal, but you will find a new normal. You’ve got this.

Growing up, Alexa was a happy, healthy child. She loved school and enjoyed many extra-curricular activities. At 15, she had a severe bout of Epstein Barr virus that landed her in bed for weeks. Recovery was slow; and while most of the initial symptoms eventually resolved, fatigue was ongoing and relentless. There were many days when she was simply too tired to get up. In addition, she suffered with headaches, debilitating brain fog, and feelings of anxiety with nausea when upright. My once active, rosy-cheek child had turned into a pale, listless shell of her former self – and despite multiple consultations with a number of doctors, no-one had any answers.

By 16, it became clear that Alexa remained too unwell to attend school full time. Thankfully, her teachers were supportive and the decision was made for her to complete her senior schooling over three years instead of two. But, even though she now had a reduced subject load, attendance remained a daily struggle; and she missed more classes than she was able to attend.

The future looked bleak; Alexa felt she could no longer make plans to pursue her dreams – she could barely function, let alone study, work or travel. She dropped all extra activities and gave up on her music studies. Her once busy social life became non-existent, and her peers celebrated their graduation without her.

As a parent, it was heartbreaking to witness. I felt helpless and extremely frustrated at the lack of understanding and care available; looking for answers and chasing treatment options for a condition with no name was both expensive and very time-consuming. Alexa needed daily support and as a single parent, I could no longer work full time.

It was after another prolonged episode of brain fog, heart palpitations and severe nausea that our paediatrician suggested Alexa, then 17, may have POTS. We were referred to a specialist cardiology clinic and that day, I did cry – finally, we had an answer! Finally, there were treatment options available. We were also very excited to learn that vital research was underway.

While life is nowhere near normal yet, Alexa’s health and quality of life have improved under care of her POTS clinicians. She has had some success with medication, and she has taken the suggested lifestyle adaptations in her stride – salt, water and compression tights are her constant companions. Postgraduate studies are back on the cards; and, under guidance from our fantastic POTS team, we are both looking forward to the future.

My name is Kimberly, and I am 43 years old.
I remember the day my world changed (06/09/19).

I came down with severe right sided abdominal pain, and just presumed it was my endometriosis playing up for the first time in years. I thought I would wait out the pain but by the end of the week I was sent to hospital with suspected appendicitis.

Multiple hospital admissions followed an don one occasion my heart rate became rapid while I was showering and I felt like jelly, so I hit the emergency button. Despite a heart rate of 186bpm I was then told it was a panic attack. I had never had a history of anxiety or panic attacks and I felt completely dismissed. I had several trips to the ER, blood tests, kidney function tests, stress tests, ECG’s, Holter monitors. I saw approximately 11 different specialists, including 3 heart specialists, and was told there was nothing wrong with me and to see a psychologist. It was so hard knowing that there was something really wrong and no one believing you.

14 months after all other medical investigations failed, I was lucky enough to find a POTS specialist. I was diagnosed and treated with medication that completely changed my quality of life. Although it is still not that of an ‘average’ person, I am able to cook, shop and perform small activities whereas before it was impossible.

Through all this I still believe I am one of the lucky ones, although I am still unable to work and rely completely on my husband. I feel very blessed to have his support. He never once doubted me. He held me through the tears of frustration, and always said ‘never mind the cost’ we will get through this. I call this journey ‘my own personal hell’ because even now it’s hard for people to see me look like I do on this photo, and next minute I cancel plans and am bed ridden. I constantly get asked why I don’t work. It’s not because I don’t want to. It’s because I can’t, and I wish there was more recognition of how seriously POTS affects people’s lives.

My biggest hope is in the future is to get back to work, have POTs recognised as a condition that entitles people to government support, but most of all, to find a cause, and prevent it from happening to other people. It effects so many other aspects of your life including friendships, marriages, parenting, your children, mental health, self-worth, social life, work life, to name a few. I live life to my fullest on my good days, and endure the bad. I have become very skilled at being still, and finding out who I really am inside. I reflect a lot. I look forward to more improvements and milestones now I have started my 12-month rehabilitation programme with an exercise physiologist.

As a family we have experienced firsthand the benefits that POTS research & information provides.

Adeline (aged 19) has been suffering since the age of 15, and took us 3 years of searching to find a diagnosis, and explanation of her conditions. It was a very frustrating search, involving many weeks in hospital, over 200 tests & multiple specialist appointments each week.

We had to keep searching for answers as you cannot fight the battle when you don’t know who/what you are fighting against. Adeline went from a typical 15 year old student, to someone who couldn’t function, socialise or attend school, basically overnight.

Her sister Sophie (aged 16) had a very similar onset of the condition. At the age of 15 her first symptoms were pre-blackouts, multiple times per day, and a racing heart rate. Because we knew the signs of POTS, and the appropriate medical specialists, her diagnosis was much quicker. Sophie recently experienced a POTS flare whilst playing football, requiring an ambulance.

The paramedic knew all about POTS, which made getting the appropriate treatment quick and easy. Adeline spent weeks in hospital while doctors tried to work out what was going on, after her many attacks. In contrast Sophie received the treatment & medication she required, and was discharged within hours. This is the power of knowledge and information, based on quality research.

POTS Resources

Here are some links for more information on POTS and its associated conditions, and other helpful resources.