Lorna Nicholson, UK Chair for support and awareness charity PoTS UK, tells us more about this debilitating, yet little known condition, and shares some top tips for those affected by PoTS.
What is PoTS?
Postural tachycardia syndrome (PoTS) is due to an abnormality in the functioning of the autonomic (involuntary) nervous system on upright posture. Symptoms commonly include fatigue, dizziness or near fainting, and palpitations/rapid heart rates. Approximately 50% of patients actually faint. Those affected tend to be women aged 15-50 years old, however, men are affected too. It is thought that PoTS may affect 0.2% of the population, but the true incidence is unknown.
PoTS can be an awfully debilitating illness, and a number of those who are severely affected are house, or even, bed bound. Many are unable to work and struggle with daily functioning. Thankfully, symptoms can be helped by medication and lifestyle changes; nevertheless, despite improvement, many people continue to have symptoms for years or even for their entire lifetime.
PoTS and Pain
Approximately 50% and possibly more of people with PoTS also have Joint Hypermobility Syndrome (JHS) (also known as Ehlers-Danlos -hypermobility type). Particularly for this group of PoTS patients, pain can be significant due to laxity of joint ligaments. Those with PoTS, and without JHS, can also experience body pain.
Many PoTS UK patients report that the weather affects their symptoms: joints tend to ache more in damp and cold weather, and symptoms of PoTS can worsen with heat.
Tips for managing PoTS
Key tips for managing PoTS include:
- Make sure you seek appropriate medical advice early on.
- Ensure you always have adequate water and salt intake.
- Identify your triggers and avoid them where possible such as certain medications, heat, standing still for too long.
- For those who faint, sit or lie down as soon as you feel faint and raise your legs in the air.
- Take regular exercise.
Who are PoTS UK?
PoTS UK started 10 years ago with a Facebook group run by individuals with the condition to help support each other. From here we identified the need to provide an evidence-based website to support those affected and to help raise awareness of the condition. The charity is run by four trustees, all of whom have a medical background and either have PoTS or have family members who are affected.
PoTS UK is working on raising awareness amongst medical professionals by writing articles for academic medical journals, and speaking at conferences and in webinars. We are currently coordinating the development of national guidelines for supporting the best management of PoTS.
PoTS UK offer patient support via email, run a Facebook page for people with PoTS and their carers, and support patient meetings, where people with PoTS can meet face-to-face and share their experiences.
Further information about PoTS and the charity can be found on our website http://www.potsuk.org
You can hear first hand what it's like to live with PoTS, and other debilitating conditions, by reading Cloudy participant Zoe's story.