I’m Katy. I was diagnosed with POTS about 9 years ago after almost a year of tests. I’d always dreamed of running a marathon, and my diagnosis made that dream feel distant.

Postural orthostatic tachycardia syndrome (POTS) is a chronic disorder of the autonomic nervous system that can cause a range of symptoms, including tachycardia and blood pressure changes. Sitting, standing, or changing positions can cause the onset of these symptoms.

If you think you might have POTS, or you already have a diagnosis and are looking for more ways to manage your symptoms, speak to a doctor. If you do have a diagnosis, do not start strenuous exercise or change your diet without checking with your doctor.

POTS affects everyone differently. Many people begin their diagnosis journey for POTS with a primary care doctor. However, they may later refer you to a specialist, such as a neurologist or cardiologist.

One symptom of POTS is exercise intolerance, though clinicians widely recommend exercise as a way to help people with POTS manage their symptoms in the long term.

Before my diagnosis, I led a very active life. However, with POTS, I went from running several times a week to becoming faint, fatigued, and breathless even trying to walk to the bathroom. I struggled enormously to walk up staircases and hills, and could not stand up, or stay standing for periods of time without experiencing dizziness and seeing stars as the blood pooled in my ankles and feet. I would also experience brain fog, headaches, digestive disturbances, and heart rhythm changes.

At the time, my doctor – who was fantastic about guiding me through the tests and giving me medication and lifestyle adjustment advice – recommended I try exercise as a way to reduce the severity of my symptoms. She suggested I start with exercise that I could do lying down, like yoga, or weight lifting from a seated position.

The American College of Cardiology (ACC) recommend exercise that avoids the upright position for people with POTS, such as using a recumbent bike, rowing machines, or swimming.

As this 2024 narrative review states, it is important for people with POTS to follow exercise plans that are individualized to their needs and situations. One-size-fits-all recommendations are not appropriate for people with this condition.

To me, the thought of starting exercise, even a gentler type like this, felt overwhelming. My fatigue, muscle weakness, and faintness made it seem impossible. What’s more, the decline in quality of life had an impact on my mental health too, which made it very hard to stay motivated to make lifestyle changes like these, despite evidence stating that it would help me feel better.

Before diagnosis, I had a vague life plan set out for myself in my mind. One of these mental checkpoints was that I wanted to run a marathon at the age of 28, which felt impossible when just walking from one room to another felt like dizzily wading through treacle.

After many trials and errors, I finally found a medication under the guidance of my cardiologist that helped me manage my spikes in heart rate. I began to feel ready to implement some wider changes to benefit my mental and physical health long-term.

The first thing I did, though, was remind myself that this was a marathon, not a sprint (pun intended). Changes should be gradual, slow, and should follow the advice of my doctor. I should also remember to be kind to myself, as progress is not always linear – and living with a chronic condition can often be very de-motivating.

I slowly began to learn coping mechanisms, including how to spot patterns in my body that told me a flare-up was coming, and what might trigger symptoms from appearing. I know the importance of sleep, hydration, electrolyte balance, and a healthy diet in symptom management. Sugar, excess salt, processed foods, alcohol, and carbohydrates are all triggers for me, so I try to broadly avoid these in my diet.

In time, I began to take smaller, more regular walks, which I enjoyed for my mental health first and foremost. I soon noticed that my heart rate felt more stable during exercise, and then I saw positive effects on my symptoms even at rest. I also started my own adaptations of yoga, cycling, and some fitness classes.

In time, I felt able to try to run again. First just 1 kilometer running, then 1 walking… and I always came home sooner than I wanted, to avoid pushing myself too hard. On a ‘bad’ day, a 10-second walk sends my heart rate sky-high, and I’ll be dizzy and fatigued for a while afterwards.

I slowly built back up to running 5 kilometers, which was a huge achievement for me, and I started regularly running at my local Parkrun.

I began to feel more energetic, and with my medication and other lifestyle changes, my symptoms were better regulated most days. I increased my distance over time, being careful to avoid overheating or dehydration. One day, I was running a half marathon along the beach and was ecstatic to have completed this distance, noticing how few symptoms I felt compared to what I would have felt a year before.

With my cardiologist’s blessing, I signed up to run the Brighton Marathon with my dad, who is an experienced marathon runner. I wanted to raise funds for POTS UK. I knew there was a possibility that the training would not go as planned, and that on the day I wouldn’t finish, but I felt very determined to at least try.

I sat down with my dad to work out a solid marathon training plan with extra time added in so I could be as prepared as possible for all eventualities. I wanted to build a strong enough baseline fitness – maintained over a long period of time, at a longer distance than I would otherwise have needed – that would mean I could feel mentally stronger on the big day as well as physically, as I do find POTS can skew my mental and emotional inner voices sometimes.

My training plan consisted of:

  • gradually increased distances each weekend, over a longer period of time than most training plans, to allow for flare ups and setbacks
  • short runs and walks throughout the week
  • two sessions a week of other types of exercise, like yoga, or pilates
  • rest days

Mental and physical setbacks WILL happen when training for an event like this, especially alongside a chronic condition.

Be kind to yourself.

Take rest periods, do not push yourself too hard, maintain a healthy lifestyle outside of your training, and stay close with your doctor.

Here are a few tips that I follow, that I also found helped me along my training plan with running:

  • Find the right balance. If today feels like a bad day, I do not push myself beyond my limits. However, if I am able to make it out of the door, it’s okay to do a very short run for a few minutes or even just a walk. That way, I am staying within my limits without shrinking them.
  • Run with someone else. When training, I would always run with my dad or have someone tracking me in case I got faint
  • Stay hydrated. I have a cup of herbal tea and a large glass of water with an electrolyte tablet every morning, and I drink a lot of water throughout the day. This helps with my dizziness and fatigue. During runs, I make sure I take water and electrolytes with me, or I run near places I know I can fill up a bottle. Increasing sodium intake can help you stay hydrated and boost exercise tolerance.
  • Avoid trigger foods. If I have a high-fat or high-carb meal the day before, or if I drink alcohol, I know I won’t be at my best the next day if I want to run. I also have identified some other trigger foods I avoid before runs if I can, like garlic.
  • Prioritise sleep. I like to make sure I get 8 hours of sleep minimum, as I really feel the difference in symptoms if I get less than this. I do this by practising good sleep hygiene, including early nights, less liquids before bed, establishing a solid routine, and avoiding screens.
  • Have the right gear. Compression stockings worn to the thighs or abdomen can really help with running, and I make sure I can easily loosen the laces on my running shoes over time, especially for longer runs. I stay safe with a headlight on darker runs, and I wear gloves when it’s cold. I like to wear layers because of the temperature changes I often feel due to POTS.
  • Loosen your shoes if you need to. Running shoes for long distance runners need to fit right to avoid injury. However, I often need to loosen shoes as my legs and feet swell over the course of a run. I also remove rings and loosen my smart watch for the same reason.
  • Take snacks. I take a small box with raisins and nuts on my runs.
  • Wind down afterwards. After a long run, I stretch, and then sit with my feet up to regulate the blood flow again. I also avoid taking overly hot showers.

With my family to support me, and by taking the run as slowly as I needed to, I was able to complete the marathon race.

I felt and still feel incredibly lucky to have been able to train and run a marathon in this way with this condition. Flare-ups still appear seemingly for no reason at times, but I’m fortunate to be able to live and work alongside POTS rather than against it, with the help of medication and lifestyle strategies.

However, many people experience varying severities of POTS. Some need to use mobility aids, and some are bedbound, whereas some people are able to appear to live a more “normal” and active life on the surface. It is important never to judge anyone living with chronic conditions – including yourself if you have one.

Research into POTS, including its causes, treatment, and symptom management, is ongoing. If you think you might have POTS, speak with your primary care doctor, or a neurologist or cardiologist.