Living with PoTS: Understanding Postural Orthostatic Tachycardia syndrome and how schools can help

with POTS UK and Emily Nixon, volunteer, PoTS UK

Contents

Postural orthostatic Tachycardia syndrome, a dysfunction of the autonomic nervous system (for things you can’t control, like breathing, heartbeat etc), was little known prior to the pandemic, yet it’s not especially rare. It can cause overwhelming fatigue and functional disability, precluding a normal life, yet those who live with it, including me and my daughter, can feel like a broken record explaining what it is and why we often need a stick for stability or a wheelchair.

It often partners with¹ collagen disorder, Ehlers-Danlos syndrome and many people with these conditions are also neurodivergent. My daughter was first diagnosed with Reflex Anoxic Seizures at 13 months, before developing PoTS— these are very complex, interrelated conditions.

However, because you look perfectly normal if you’re sitting down, and because it’s predominantly females who have PoTS, battling medical ignorance, dismissiveness, and superfluous advice becomes an everyday normal activity. Later in this article, PoTS UK explain the symptoms and causes in more detail.

Finding the right specialist, the most effective medication (if any work at all), and getting ongoing support are all extremely challenging, meaning most patients feel abandoned. As an illustration, I can be sat in bed with a heart rate of 65. After getting up and walking 10 paces to the bathroom, my heart rate can be as high as 168, leaving me dizzy and on the verge of blacking out.

October is PoTS Awareness Month and on Tuesday 14th, MP Cat Smith, who herself has PoTS, led a parliamentary debate on the issue in Westminster Hall. Below is an extract from her speech:

“…Most GPs will never have encountered the term in their training, and even among cardiologists and neurologists expertise in autonomic disorders is scarce. As a result, patients often find themselves being referred to different specialists, bouncing from cardiology through neurology to endocrinology and psychiatry, without there being any one clinician to join up the dots and provide the diagnosis.
“The crisis in accessing specialist services has been brutally highlighted this week: we have learned that in London a major teaching hospital clinic has closed its doors to new PoTS patients and a second has reduced its capacity, so that it will see only local patients. All the rejected referrals are now being forwarded to a third London clinic, which is already totally overwhelmed and has a two-year waiting list. Those referrals will put extra pressure on that clinic and leave patients in the south-east without any access whatsoever to healthcare pathways.
“This is blatantly a postcode lottery, whereby someone’s access to diagnosis and care depends entirely on where they live. This situation is summed up in an email that I received from a woman last week: “I would like to note that I got involved with this as I am still unable to get a formal diagnosis of PoTS while suffering the symptoms, as the only specialist we had in Plymouth retired and my GP said they were currently unaware of where to send me for help. Please. I am begging. Please help.”
PoTS debate, 15 October 2025

My daughter first suffered with Reflex Anoxic Seizures, which then The charity PoTS UK has been working hard for many years to educate the medical profession and support children² and their famlies. To some extent, the pandemic raised the profile of PoTS. Thousands of people who contracted Long Covid ended up with PoTS³ and suddenly, the medical community became more interested.

PoTS UK volunteer, Emily Nixon, has kindly written an article for us about her experience and how schools can help.

PoTS: Living with a faulty nervous system by PoTS UK

Postural tachycardia syndrome, or PoTS for short, is an abnormality of the autonomic nervous system. Our nervous system controls bodily functions we don’t even have to think about such as our heart rate, blood pressure, respiration and digestion. For people with PoTS, having a faulty nervous system can present huge challenges and result in a large number of symptoms that may occur at the same time

Individuals with PoTS experience ‘orthostatic intolerance’ which means that they mostly experience symptoms when in an upright position. Symptoms are varied and, although many are listed below, it’s essential to note that not everyone with PoTS will experience all of these symptoms:

Palpitations
Dizziness or light-headedness or presyncope (almost fainting)
Fainting or blackouts (often referred to as syncope)
Chest pain 
Shortness of breath
Shakiness or Tremulousness 
Excessive sweating
Gut problems 
Bladder problems 
Visual problems 
Tiredness or weakness
Brain fog 
Headaches 
Feeling unwell after exercise
Poor sleep

PoTS greatly affects quality of life

PoTS symptoms range from mild to severe, with all people affected differently. It can cause significant disability and have a hugely detrimental effect on a person’s quality of life.

Symptoms are often worse in the morning and can vary hugely from day to day. This makes life unpredictable and, while some people can manage their symptoms very well, others can become wheelchair users or housebound. It can be a challenge to understand the range and complexity of this condition.

The majority of people with PoTS also have other related medical conditions as well, such as mentioned above, hypermobile Ehlers-Danlos Syndrome, allergies, Long Covid and ME/Chronic Fatigue syndrome, all of which can make symptoms worse.

image shows campaigners with a post uk banner

Diagnosis can take years

It can take many years for a person with PoTS to obtain a diagnosis due to a lack of awareness and specialists. A diagnosis is important because it opens up treatment options for patients that can improve their symptoms and quality of life.

Sadly, many patients are misdiagnosed as suffering from anxiety. However, PoTS is not a mental health condition. Of course, some people do experience anxiety when managing any long-term illness with difficult symptoms, and naturally, for them, accessing mental health support can improve overall well-being.

Below, PoTS UK Volunteer Emily shares some of her best tips on how schools can help students who are living with PoTS to manage school as easily as possible…

Promoted

How schools can help their students with PoTS by Emily Nixon

As someone who developed PoTS at a fairly young age and got diagnosed while studying for my A-levels, I know that dealing with that alone is a lot to deal with. When you add in the fact that it is so underheard of and no one around you fully understands how you feel, it can feel so isolating.

I think one of the main adjustments that teachers should understand is that attendance is likely to suffer. The fatigue, fainting (or the feeling of faintness), headaches, shortness of breath (among many other symptoms) make getting out of bed hard some days, let alone going to school. Sometimes, after having a few days off, I would feel better and could catch up from my bed with a clearer mind.

Helping learners with PoTS succeed at school

Providing adequate catch-up material that the student can use to help teach themselves is a massive help, as the stress of falling behind can make people with PoTS feel even worse. Some examples are:

being able to provide lessons in advance,
recommending websites/YouTube videos or
sending pre-filled worksheets to have a look through.

For lots of young people in general, going to school can be really difficult, especially the social aspects. This can be increasingly challenging for people with PoTS due to the fear or embarrassment of fainting or needing to sit down in odd places. Young people often don’t like feeling different to their peers, and this can make it hard to come to school for many people with PoTS.

Having friends or teachers who are aware of the conditions and how to help (such as raising legs, giving a drink of water or putting a pillow under your head) can really make the student feel better in moments that can be quite scary alone. Open communication between either the SENCO or head of year can be really important, and a regular check-in to see how they are getting on would be a big support.

Helping learners with PoTS manage school activities

Along with the social aspects, people with PoTS tend to miss out on other activities at school, such as PE and school trips.

Schools can provide alternatives, such as seated exercise⁴ or choosing places to visit on the school trip that are wheelchair accessible/ places where you can rent a wheelchair. [SNJ: Remember, schools must use reasonable adjustments⁵ for any child with a disability.] These sorts of adaptations helped me access school trips where I couldn’t walk around for long periods of time. If no alternative can be made, providing something else for the student to look forward to ensures they feel included.

There are lots of straightforward access arrangements that can help improve daily life while at school such as:

Having a care plan/risk assessment in place for both emergencies and daily life at school.
Allowing unlimited toilet breaks (as children with PoTS need to drink lots of fluid)
Allowing students to fill up their water bottles whenever needed
Allowing them to use the lift if their classrooms are up and down stairs, as stairs are often a huge struggle for people living with PoTS
Allowing extra time/rest breaks in exams and assessments, no matter whether in class or formal exams, as concentration and brain fog can hinder abilities. The extra time really helped me take my time and read things through. I was also allowed to take my exams in a smaller room, which helped a lot.

Lastly, everybody with PoTS looks different. Some may be in a wheelchair, while others won’t use any mobility aids. As with all invisible illnesses, people with PoTS may not ‘look ill’ but that doesn’t equate to how we feel on the inside or what we are having to deal with. Open-mindedness, flexibility and compassion can really help young people with PoTS to access school more successfully”.

You can find more resources for helping at school here
SNJ also has an article about EDS and school here: What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome (author: Dr Jane Green, SNJ intro: Tania Tirraoro, 2021)
See SNJ’s Zotero research repository for EDS and PoTS (in development)
Coram: Supporting children with medical needs in schools – childlawadvice.org.uk

References

Wu William, Ho Vincent, An overview of Ehlers Danlos syndrome and the link between postural orthostatic tachycardia syndrome and gastrointestinal symptoms with a focus on gastroparesis Frontiers in Neurology, Volume 15, 2024 DOI=10.3389/fneur.2024.1379646 ISSN=1664-2295 ↩︎
Going to school when you live with PoTS PoTS UK website ↩︎
Cameron K. Ormiston, Iwona Świątkiewicz, Pam R. Taub, Postural orthostatic tachycardia syndrome as a sequela of COVID-19, Heart Rhythm, Volume 19, Issue 11, 2022, Pages 1880-1889, ISSN 1547-5271, ↩︎

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder & co-director of Special Needs Jungle. (She/Her) Autistic parent of two young autistic adults Devoted Grandma. National SEND advisor, journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media.
She is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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