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TikTok Triumph: Jack raises awareness for Postural Tachycardia Syndrome (PoTS)
By Louise Gordon
Hemel Today, Brought to you by The Gazette
Published 7th Oct 2024
Jack (25), from Hertfordshire, has lived with Postural Tachycardia Syndrome (PoTS) since January 2020 but waited almost 3 and a half years for a diagnosis. The invisible illness has reshaped his daily life, with simple activities now requiring careful planning. Jack has adapted his lifestyle and raises awareness about PoTS on his TikTok recovery page (@jacksrecovery), reaching 18,000 followers.
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.
Symptoms include tachycardia, dizziness, breathlessness, chest pain, fainting, exercise intolerance, gastrointestinal issues, severe fatigue, and many others.
PoTS is an under-researched and commonly misdiagnosed condition. The mean diagnosis time is just under seven years in the UK.
Jack said: “Unfortunately, awareness of PoTS is limited, and most people have not heard of it or understand its complexities.”
He added: “It is crucial to keep pushing for new medications and up-to-date therapies that may work for you.”
PoTS has completely changed Jack’s life. He said: “The journey from developing symptoms to receiving a diagnosis, and navigating life afterwards, transforms your world.”
Everyday activities that Jack once took for granted, like going out for dinner or going out with friends, are significantly more challenging.
He said: “They require a lot of planning, preparation, and adjustments to make them feasible, completely altering how you socialise with the people in your life.”
Jack has tried a range of medications to help his symptoms. There is not a clear course for treatment as a range of medications impact PoTS patients differently. Jack said: “As there is no ‘quick fix’ when it comes to this illness, when first diagnosed I trialled numerous different medications on a trial-and-error basis.”
Jack has found Midodrine, Low Dose Naltrexone (LDN) and Acarbose to have some positive impact. However, he could not tolerate the side effects of SSRIs and Modafinil.
Lifestyle changes have also worked for Jack. He said: “As most people with PoTS would agree, drinking plenty of water each day also helps manage my symptoms, often supplemented with additional electrolytes.”
Jack added: “About a year after my diagnosis, I was able to start running (slowly!), and this regular exercise has significantly improved my fatigue and overall energy levels.”
Creating a flexible career was Jack’s biggest lifestyle change. He said: “This flexibility allows me to have quieter days and rest, even when my symptoms are particularly bad, without overdoing it and worsening my condition.”
Jack emphasised the challenges of PoTS being an invisible illness. He said: “Coupled with the fact that some days can be better than others, it often results in a lack of understanding from others about how life-altering this condition can be.”
Jack remains hopeful that greater awareness will help the PoTS community. PoTS is gaining recognition in patients with COVID-19 in the post-infectious stages. Jack said: “My biggest hope is for greater general understanding of this disorder and invisible illnesses in general, along with an increase in funding for research into these conditions which have become more prevalent since the pandemic.”