What is POTS?
POTS is a condition of the autonomic nervous system which largely affects women of child-bearing age but can be experienced by both men and women of any age.
The autonomic nervous system controls many of the ‘unconscious’ functions of the body including:
- Heart rate and blood pressure regulation
- Bladder regulation
- Gut movement and digestion
- Temperature control
- Stress responses (fight or flight)
This explains why those with POTS often present with a vast array of seemingly unrelated symptoms such as fatigue, headache, gut disturbance, dizziness, pain, poor concentration and light-headedness.
POTS is associated with high levels of social, economic and health burden.
Many who experience the condition, find it difficult to work, engage in social activities or attend school.
25% of POTS patients report having to stop work or education due to the impact of the condition on their health.
Despite this, many still report a significant delay in diagnosis.
Two of the most commonly prescribed medications used for the management of POTS, are not available on the Pharmaceutical Benefits Scheme in Australia.
Leaving many with the condition, in the difficult position of not being able to afford treatment.
Please help us to make a change for the better and provide a brighter future for those living with POTS, through improving education, advocacy and research.
There is no single blood marker or diagnostic study that can determine whether a person has POTS.
This is perhaps one of the reasons why many people have a long delay between onset of symptoms and POTS diagnosis.
Diagnosis is based on the presence of a cluster of symptoms.
- Symptoms must be present for at least 3 months before diagnosis
- There must be a sustained increase in heart rate of at least 30 bpm (or >40 bpm in adolescents) on standing
- There should not be a drop in blood pressure >20 mmHg/10 mmHg. (This would suggest the person has a condition called orthostatic hypotension)
- There should be a presence of other symptoms on standing such as dizziness, vision changes and light-headedness
- There should be an absence of other conditions or medications that cause the symptoms
What Causes POTS?
Currently there is not a clear understanding of exactly what causes POTS.
However, there is growing understanding of some of the mechanisms involved in the development of the condition.
It is likely that there are several causes which explains why not every POTS patient responds the same way to treatment.
While we don’t know the exact cause, there is strong evidence that in a large portion of people, POTS is triggered by environmental influences such as:
- Viruses (Covid-19, Epstein-Barr Virus, Gastroenteritis)
While some people have a sudden onset of POTS, others seem to have a slow progression of symptoms which can escalate around puberty.
Many people with POTS also have associated conditions which seem to increase their risk of developing POTS at sometime in their life. Some of these conditions are:
- Hypermobile Spectrum and Ehlers-Danlos Disorders
- Mast Cell or allergy type disorders
- Irritable bowel syndrome
- Coeliac disease
Many people with POTS have lower than normal total blood volume.
This is very difficult for doctors to identify through routine laboratory testing which is why it often isn’t picked up.
For this reason, POTS treatments are usually directed at increasing blood volume and improving blood return to the heart and brain.
Because the condition affects multiple body systems, multidisciplinary approach to lifestyle adjustments is encouraged as the first step to treatment.
Your doctor may suggest some of the following treatments:
- Increasing daily salt and fluid intake
- Wearing of medical grade compression-wear (from ankle to waist) during waking hours to help blood return to the heart and brain
- Avoid hot environments
- Functional activity to increase blood volume and prevent physical deconditioning
- Dietician/nutritional input when there are problems with oral intake of food
If lifestyle changes alone do not improve your symptoms, then your doctor may consider some medications. Many of these will need to be used on a ‘try and see’ basis. Some examples are:
- Fludrocortisone to help expand your blood volume
Beta Blockers/heart rate control medications such as propranolol and ivabradine
- Alpha receptor agonists Phenylephrine/Midodrine which help return blood to your heart and brain
- IV fluids for severe or acute low blood volume
- Stimulants for fatigue/concentration
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.
The below info sheets summarise information about key diagnostic tools and therapies related to POTS.
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…
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.
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.
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.
Here are some links for more information on POTS and its associated conditions, and other helpful resources.
- POTS UK
POTS UK provides a wealth of information on their website designed to “educate and support patients, family, friends and medical professionals within the United Kingdom about this widely unrecognised and misdiagnosed condition by sharing up to date evidence and resources.”
- Dysautonomia International
Dysautonomia International is a US based organisation who work towards raising awareness about dysautonomia. Their website provides substantial information for patients, clinicians and carers alike.
- The POTScast
Standing Up to POTS is an American volunteer run charity who aim to “raise awareness, nurture community, and empower patients with information and practical skills for living better with this chronic invisible illness”. You can find a wealth of information about POTS on their website. You may also like to subscribe to their Potscasts and learn about Postural Orthostatic Tachycardia Syndrome (POTS). Gain insight from other patients and from top POTS doctors.
Some people with POTS have permanent, significant disability that may entitle them to support from the Australian National Disability Insurance Scheme. Information relating to NDIS application can be found at their website.
- Ehlers Danlos
Many people with POTS also have hypermobility spectrum disorders or may have one of the Ehlers Danlos subtypes. You can find more information on these conditions via The Ehlers-Danlos Society website.
A national charity providing all Australians experiencing emotional distress with access to 24 hour crisis support and suicide prevention services.
- Beyond Blue
Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.