STARS Patient Information
Postural Tachycardia Syndrome (PoTS)
Over the years there has been a substantial increase in the understanding of illnesses that result from disturbances in the autonomic system.
Consultants are seeing patients with reflex syncope but are often finding that they are also presenting with postural tachycardia (a very fast heart rate that occurs after you stand up), severe fatigue and exercise intolerance.
These patients can be told they are suffering with PoTS.
What is PoTS?
Postural tachycardia syndrome (PoTS) is an abnormality of functioning of the autonomic (involuntary) nervous system. It is defined as an increase in heart rate of over 30 beats per minute (or to higher than 120 beats per minute) (40 bpm in those age 12-19) when standing upright. Typically there is no postural fall in blood pressure, although fainting (syncope) can occur (see below).
Diagnosis and management of PoTS
Dr Blair Grubb, Professor of Medicine and Paediatrics, University of Toledo, Ohio, discusses the diagnosis and treatment of postural tachycardia syndrome (PoTS).
PoTS Clinics - The way forward
Melloney Ferrar, Arrhythmia Care Coordinator, exposes the unique work of the PoTS Clinic at Sheffield Teaching Hospitals NHS Foundation Trust.
Living with PoTS
Ella Landsman, STARS patient member, discusses life living with PoTS. Ella talks about her challenge to get a diagnosis, the impact of getting a diagnosis and provides advice to others affected by PoTS.
Phil Kischer, MD discusses the latest research on POTS
The main symptoms of POTS include:
Potentially related symptoms:
What causes PoTS?
There are a number of factors and disorders causing or associated with PoTS, hence the need to be evaluated by a centre with such experience. Joint Hypermobility Syndrome (previously known as Ehlers Danlos Syndrome type III) is sometimes associated with PoTS. Depending on the results following investigation, treatment strategies can include non-pharmacological measures (i.e. without drugs) as well a range of medications.
Who suffers with POTS?
Most sufferers of POTS are between 15 and 50 years of age, but it can strike at any time. Research has shown that approximately five times more females are affected by POTS than males and, sadly, some sufferers wait a year before plucking up the courage to talk to their doctor ‚ afraid they will be thought to be making a fuss.
Developmental POTS affects adolescents. Often beginning around age 14 years, peaking at 16 years, then slowly fading in young adulthood. It can occur typically after the onset of puberty and sometimes following a period of rapid growth.
Patients can suddenly develop symptoms following a viral infection or severe shock.
Autonomic specialists believe that in some cases there may be an overlap between people with POTS and some individuals suffering with chronic fatigue syndrome.
What help is there?
- Elastic support stockings.
- Hydration (2-3 litres orally per day). The patient should have at least one glass or cup of fluids at meal time and at least two at other times each day to obtain 2-3 litres per day.
- Increasing daily salt intake by approximately 6g/1 teaspoon if your blood pressure is within the normal range.
- Incorporating physical counter-manoeuvres before and during the upright posture, e.g., calf activation.
- Avoiding any risk factors or triggers for PoTS, e.g., warm environments, prolonged standing, large meals with high carbohydrate content.
- Maintaining physical activity as best and as safely as possible to prevent/reduce physical deconditioning.
Some specialists do prescribe medication and these can include drugs to slow the heart rate (beta blockers), increase blood volume or the resistance to blood fl ow in blood vessels. Midodrine is well known as a drug that can help sufferers lead a more normal life. Other drugs that are used include fludrocortisone, beta blockers, ivabradine, SSRI/SNRI antidepressants and occasionally octreotide.
Cognitive Behaviour Therapy (CBT) has had some success in helping patients come to terms with PoTS and manage their lives.
Daily Management of POTS - A Patient's Perspective Read article
POTS and Pregnancy
Patients with POTS can safely complete pregnancy. POTS should not be considered as a reason to not go through pregnancy. Blair Grubb discusses POTS and Pregnancy in:
- Outcomes of Pregnancy in Patients with Pre-existing Postural Tachycardia Syndrome
Khalil Kanjwal, Beverly Karabin, Yousef Kanjwal and Blair P.Grubb
My problems with pre-syncope spells began 13 years ago when I was 16. I had multiple dizzy spells when standing up the kind that most people have had at some point in their lives, maybe when standing up from a hot bath. Everything closes in and goes black and blurry. The GP put it down to hormones and being a teenager. The spells became more frequent and caused me to collapse to the floor, though I never lost consciousness. I was referred to a neurologist who also dismissed it as the result of being a young female.
Department of Works and Pension site
PoTS is now listed on the Department of Work and Pensions site. Information contained on this site can be shared with an employer or education establishment who needs to understand the condition for a particular reason.
The Autonomic Nervous System (ANS)
The Autonomic Nervous System controls everything we do not have to think about. Examples of this are heart rate, blood pressure, body temperature and breathing amongst other things.
Normally we can adjust to changes around us very quickly. However, a person whose ANS isn't working correctly does not respond normally. It may take them longer to adjust or they may do just the opposite of what is expected. This can also start a cycle of trying to re-adjust to a given situation ‚for example, the heart rate rises then drops, then rises again.
A simple explanation is that the heart and the brain are divorced and are refusing to speak to each other!