Postural Orthostatic Tachycardia Syndrome

Postural Orthostatic Tachycardia Syndrome or PoTS is caused by abnormal functioning of the autonomic nervous system.

The autonomic nervous system regulates all the body’s functions that happen automatically such as heart rate, blood pressure, digestion, sweating and the fight or flight response.

In people with PoTS, the body’s ability to regulate these things goes a bit wrong. Usually when you stand up your blood pressure increases slightly to make sure your brain keeps getting oxygenated blood, with PoTS everything goes a little haywire and the effects include tachycardia (rapid heard rate), increased norepinephrine and altered blood flow around the body.

PoTS patients usually experience a range of symptoms when standing but feel better when laying down.

Symptoms can include:

  • A heart rate increase of 30 beats per minute within 10 minutes of standing up.
  • In some people, a blood pressure drop after standing up.
  • dizziness or pre-syncope (feeling like you’re about to pass out) some people actually pass out.
  • Palpitations, feeling your heart pounding or fluttering.
  • Headaches (often felt more when upright), Migraines,  light sensitivity and other visual problems.
  • Fatigue, tiredness and weakness.
  • Brain fog, feeling fuzzy headed with poor memory and concentration.
  • Shakiness and tremors.
  • Feeling short of breath especially when upright and active.
  • Hyperhydrosis, (excessive sweating) many people also get quite flushed and red.
  • Digestive issues such as constipation, nausea, abdominal pain, vomiting and feeling exhausted after eating.
  • Sleeping problems such as insomnia and unrefreshing sleep.
  • Bladder problems
  • Heat intolerance, feeling much worse when warm or passing out in the heat.
  • Blood pooling in the extremities (especially for people with Ehlers Danlos or other hypermobility syndromes).

There is no ‘cure’ for PoTS but there are lots of strategies for managing the symptoms. PoTS UK has lots of information on PoTS as well as treatment advice and a guide to living well with PoTS.

If you’re living with condition like PoTS and struggling with fatigue Pacing is an important coping strategy. It involves taking regular breaks and splitting big tasks into lots of little ones. Along side pacing, Sleep Hygiene can help promote good quality sleep and maximise energy levels.

It’s important to stay fit even if it is a challenge, adaptive fitness doesn’t have to be in a gym and it’s important to pace fitness too.

If headaches and migraines are a big issue then precision tinted lenses could be your answer, tinted lenses can also help with light sensitivity, visual disturbances and eye strain.

Struggling to stay cool in the heat and warm in the cold? Here are my top tips for regulating body temperature. For severe heat intolerance or super hot weather an increasingly popular aid for staying cool is a Phase Change cooling vest. 

If you’re prone to passing out and easily exhausted then you might benefit from using mobility aids such as wheelchairs.  Mobility aids, if use sensibly, can provide freedom and independence.

Many of my top adaptive apps might also help with PoTS when it comes to medication management, planning and reducing eye strain.

Communication can be difficult especially with brain fog and pre-syncope so it’s worth learning about non-verbal communication strategies.

With PoTS its super important to stay well hydrated, both salts and fluids. Rehydration drinks can be particularly effective. There are also plenty of medical measures that can help manage PoTS symptoms. Medications such as beta blockers can be incredibly helpful and so can compression garments. compression stockings can help prevent blood pooling and sudden drops in blood pressure. Some PoTSies (myself included) also benefit from abdominal compression, in this case medical corsetry might help.

If you’re living well with PoTS I’d love to hear your top tips. As always questions and comments are most welcome.

JBOT

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2 thoughts on “Postural Orthostatic Tachycardia Syndrome

  1. Hi, You are an absolute star. You have helped an enormous amount. My 19 year old has just been given a diagnosis of Pots and EDS, along with hashimoto’s after waiting 5 years to be taken seriously. You have written your site in such a friendly way and added so many great links to adapting life. Big thank you 🙂

    1. You and your 19 year old are most welcome! I’m really happy I could help! 😀 Congratualtions on the diagnosis, I hope it opens doors to treatments and coping strategies! 😀

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