Millie-Jo (21), from Luton, spent years battling unexplained symptoms before being diagnosed with Postural Tachycardia Syndrome (PoTS) earlier this year. As October is Dysautonomia Awareness Month, and the 25th of October is PoTS Awareness Day, Millie-Jo wants to share her story to highlight this condition that is commonly misdiagnosed.

PoTS can be a life-altering and debilitating health condition. PoTS is due to an abnormal response by the autonomic (automatic) nervous system. It is characterised as orthostatic intolerance – the development of symptoms when upright that are mostly relieved when lying down.

Her diagnosis came after a journey that started with routine breathing checks and a doctor who, for the first time, took the time to listen to her heart. Recognising something was wrong, the doctor referred Millie-Jo to a cardiologist, leading to a series of tests that ultimately confirmed her PoTS diagnosis, along with other health conditions, after nearly two years of investigations.

Millie-Jo said: “I have undergone many tests throughout the last few years and hospital admissions that lead to my diagnosis. Tilt table tests are one of the main ways of diagnosing PoTS. Mine was not a fun experience and I had to have 3 before my diagnosis. The first one the machine broke, the second one they made a mistake with medication, and the third was thankfully my final where I got my diagnosis.”

PoTS affects Millie-Jo’s everyday life. She said: “Things like brushing my hair, eating, showering, walking up and down stairs, lifting things. Simple activities feel so much harder to do. There is never a day I go without having symptoms. As well as PoTS, I was diagnosed with a heart condition so trying to manage both with their combination of symptoms can be difficult.”

One of the biggest challenges with PoTS can be chronic fatigue. Millie-Jo said: “I massively struggle to maintain work, personal life, and going to and from appointments in between. I have days where I have lots of energy and other days with very little to no energy. I often find myself spending a lot of time in bed or resting, as a simple 5-minute activity can wipe me out for the day.”

Millie-Jo emphasises the importance of lifestyle management to help her symptoms. She said: “Taking electrolytes has been a big help especially during hot weather to help with salt and fluid retention. As someone with low blood pressure it has helped with this too.

Mille-Jo added “I always make sure I plan ahead for my days to make sure I get enough rest and don’t burn out. Trying to go on a walk, swimming, or another gentle exercise is a good way of helping maintain symptoms. Increasing fluid and salt intake, always carrying a fan, compression socks, healthy dieting, are all great ways of managing PoTS.”

There are also a range of medications to help PoTS symptoms, but not a single clear course of treatment. Millie-Jo is prescribed Ivabradine for her tachyardia. She said “It has been great as it has lowered my heart rate to a much more manageable level. I can still reach higher rates but it’s lower than before. Ivabradine are channel blockers to help to lower at rest and exercise. I also take Fludrocortisone for my low blood pressure. So far I haven’t seen much change in my blood pressure readings however it has really helped with my dizziness.”

Millie-Jo is using her TikTok page (chronicallymills) to share her journey. She hopes to raise awareness so that more people can understand the challenges people with PoTS face and the things that help. Millie-Jo said: “The community this has brought is amazing and it’s lovely to connect and help people who are also affected by PoTS!”

When discussing her advice for other people with PoTS, Millie-Jo said: “To anyone who has PoTS, you’re doing amazing! Never let anyone tell you otherwise! It’s okay to have good and bad days, it’s okay to cancel plans, and it’s okay to do you. What might be hard for you today might be easy for you tomorrow and vice versa; all that matters is you’re doing your best!”

On the 25th of October – PoTS Awareness Day – almost 60 buildings across the UK will light up purple to raise awareness for PoTS. Among those showing support are Tower 42 and the ExCel exhibition centre in London.

The light up campaign is organised by PoTS UK, a small charity dedicated to supporting and educating patients, families, and healthcare professionals across the UK. PoTS UK work to raise awareness of this often overlooked and commonly misdiagnosed condition by sharing the latest evidence and resources.

You can show your support by sharing photos of the light-ups on the 25th of October via social media using the hashtag #PoTSAwarenessDay.