My POTS and UK Potsies story

Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia. The autonomic nervous system stops functioning correctly and there are two causes of this. Primary POTS is not associated with any other disease and can be inherited from a family member. Secondary POTS is caused by another illness, such as Ehlers-Danlos Syndrome, food poisoning, a car accident, sudden body trauma, etc. Some people are also misdiagnosed with similar illnesses such as ME, or CFS. POTS is defined as a rise of around 30 bpm (beats per minute) in heart rate when going from sitting or lying down to standing.

The main symptoms of POTS are: dizziness, nausea, poor circulation, poor temperature control, heat intolerance, exercise intolerance, blood pooling, light-headedness, fainting, tachycardia, brain fog, blurred vision and memory problems.

The diagnosis currently for POTS is a tilt table test followed by comprehensive autonomic testing whilst on a tilt table. The heart rate, oxygen levels, blood pressure and pulse are all closely monitored whilst the tests occur.

POTS is often misdiagnosed. In my case, I suffered fainting and tachycardia for several months and my GP put it down to anxiety and stress after my blood tests and ECG were deemed 'normal'. It took months of researching my symptoms on the internet before I came across an American Facebook group which was talking about POTS and I thought it could be that. My GP refused to believe it was a real illness so I had to go privately for treatment and tests. I immediately got the diagnosis following tests. I have suffered with POTS for 6½ years now. I am on over 20 tablets a day to control symptoms and have since developed other illnesses associated with POTs, which is very common. I had to give up working full-time and living in London. I now live with my parents who look after me as I cannot cope on my own. I cannot clean or hoover or go shopping alone. I need to use a wheelchair when out as I last five minutes before I start to faint.

I was approached to join UK Potsies in February 2011 to make a weekly vlog to talk about my life with POTS. We recruited more members and seven of us eventually were at the helm of the group. Our YouTube channel got so popular with over 62,000 views that we created a Facebook group for people to chat with us. This has now grown to over 450 members. We have a Twitter profile, a Facebook page and forum plus a website - ukpotsies.weebly.com .

The aim of our group is to raise awareness and provide support for POTS and POTS sufferers in the UK. We hope in the future to develop UK Potsies into something bigger involving charity work. We pride ourselves on the fact that our focus is on support and awareness and have helped many people to find the confidence to get successfully diagnosed and improve their lives.