Does your child get dizzy or lightheaded when standing, or complain of a racing heart?
A number of children with Long Covid are being diagnosed with PoTS - otherwise known as Postural Orthostatic Tachycardia Syndrome.
Read on to find out more about the symptoms, causes, diagnosis and treatments.
With thanks to the team at PoTS UK for their support with this content. You can find many more resources on PoTS over on their website. This blog is a living resource and will be updated and added to as needed.
Overview
Postural Tachycardia Syndrome (PoTS) is a collection of symptoms (syndrome) which include tachycardia (fast heart rate) which varies due to the position of the body (postural) and particularly increases in the upright position (orthostatic) with symptoms reducing on lying. It is therefore also sometimes known as postural orthostatic tachycardia syndrome.
What we know
PoTS is a syndrome caused by a malfunction of the autonomic nervous system, the system that regulates our involuntary bodily functions such as breathing, heartbeat, blood flow, breathing and digestion. It is one of the conditions which comes under the umbrella of dysautonomia.
Normally when you sit up or stand, gravity pulls some of the blood downwards in the body and your body adjusts to regulate this. With PoTS this regulation does not happen automatically. When a person stands or sits up there is a drop of blood supply to the heart and brain and the heart beats faster to compensate. “A person with PoTS uses three times more energy to stand than normal. Even minor movements can be exhausting and increase symptoms.” (Standing Up to PoTS - https://www.standinguptopots.org/livingwithpots/what-is-pots).
PoTS affects a range of people but is most commonly diagnosed in girls and women aged 15 to 50.
There are a number of triggers including puberty, viruses or a traumatic event and recent studies suggest a link between PoTS and COVID-19.
Symptoms
The symptoms of PoTS are numerous and the intensity/duration of symptoms can vary. Some people have mild symptoms, while others find the condition greatly affects their quality of life.
Fast heart rate (faster when standing or sitting upright than when laying down)
Fatigue
Breathlessness, even with small amounts of exertion
Tight chest and palpitations
Feeling dizzy and/or lightheaded when standing up
Fainting
Headaches and/or migraines
Brain fog
Sweating
Nausea
Gastrointestinal problems
Some triggers are known to worsen symptoms:
Excessively hot environment/clothes
Sudden change in position, particularly standing up quickly
Early morning after waking up compared to later in the day
Exercise (although small amounts of regular exercise may actually improve symptoms)
Diagnosis
Diagnosis is often made by a cardiologist, neurologist or peadiatrician, although not all of these specialise in the condition.
Generally to be given a diagnosis of PoTS, a person needs to have:
PoTS symptoms mostly when upright for 3 months or more.
A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing (40 beats per minute for those aged 12-19).
These criteria may not apply to those with a low heart rate when resting.
There is usually no drop in blood pressure on standing.
The Active Stand (also known as the Nasa Lean Test) is used to diagnose PoTS. Some people may undergo a Head-Up Tilt Table Test but these are not available at all hospitals.
A specialist may also give a diagnosis in cases where the above criteria is not quite met but the person remains clearly symptomatic with typical symptoms when upright.
An ECG (Electrocardiography) is performed to rule out any heart problems that may cause symptoms similar to those found in PoTS.
Other tests that might be helpful are wearing an ambulatory blood pressure and heart rate monitor for a period of 24-72 hours or having an Echocardiogram (heart ultrasound)
to check if the structure of the heart is normal. A 24-hour urine collection and various blood tests may be used to rule out other conditions. Autonomic function screening tests require a special laboratory and are not available in most hospitals.
What Will Help a Child or Young Person in School:
Allowing free access to refill water bottles, if needed
Allowing free access to the toilet
Awareness that long periods of standing will be tiring and increase symptoms (e.g. queues, fire-drills, outside breaks)
A room where they (and friends) can sit/rest in at break would be helpful
Not attending practical PE lessons for now
Awareness that physically being at school is exhausting and that if they are sleeping every afternoon after school they may need some flexibility with homework/ tests
Awareness that their usual opportunities for social interaction and sport will be limited, so supporting them to ensure that their friendships are maintained
Respecting / maintaining their independence and enabling them not to feel different
Treatment
PoTS often improves gradually over time, although there are some medicines and self-care measures that can help.
The treatment of PoTS can vary depending on how it affects the child or young person. There is no cure but it can be managed effectively.
PoTS UK is a great resource for management of symptoms using:
Increased fluid and salt intake (unless contraindicated)
Breathing techniques for manage Breathing Pattern Disorders
Compression clothing
Fatigue management
Lifestyle adaptations
Appropriate exercise (please be aware of cautions if also experiencing PESE).
Mental health support
Medication (This is usually used after the above strategies have been trialled. There are no current medications “approved” for use with PoTS and so the ones that are used are “off-licence”. They need to be considered carefully and with monitoring for side effects. In the end a risk/benefit analysis will be done to see whether to continue with any medication trialled. Some people do have extremely positive reactions to medications.)
Where can I learn more:
LCK Senior Occupational Therapist
Date 22/3/22
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The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
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