STARS Patient Information
I am 24 years old; my life changed on 13th February 2012 after I collapsed at work.
I was initially diagnosed with low BP and Syncope in 2012 and my diagnosis changed to Postural Tachycardia Syndrome (PoTS) in 2014.
I spent weeks in and out of hospital and I was constantly at A&E with serious injuries due to blackouts occurring uncontrollably. My life became difficult; not just for me but for my fiancé, mum, family; pretty much anyone that I came into daily contact with.
My blackouts were worse in mornings after restless sleepless nights. I realised that some triggers were meals/hot environment & prolonged sitting/standing. I spent my 20th birthday in bed with severe migraines and fatigue. I have no blackout symptoms before and no memory afterwards; I’ve been told I have a body seizure although Epilepsy was ruled out. Afterwards my body feels like I’ve been run over by a bus.
I was very independent, lost my confidence and wasn’t a nice person to be around. I began to move around the house by crawling and being confined to a wheel chair PoTS had taken over my life.
One of the hardest conversations was numerous doctors unable to explain what was happening and at my lowest being told it maybe ‘Pseudo seizures’. My mother and I refused this diagnosis asking for a second opinion. I saw a Neurologist at Salford Royal Hospital; this changed everything offering the chance to put my life back together. I felt hopeful as results of tilt table test confirmed a drop in BP and confirmed a diagnosis of PoTS.
Things were up and down at this point after numerous medications; one being fludrocortisone which did nothing other than increase my weight. We hit a brick wall so I was referred to a Syncope specialist at Manchester Royal Infirmary. I was put on midodrine and propranolol offering me more hope. With the correct medication, support, listening to my body and adapting lifestyle and diet I have a better quality of life.
I go to the gym; swim and I drink lots of water to ensure I’m not dehydrated. It’s hard to see my friends going out having fun, especially when I know late-nights, tiredness or standing/sitting for too long affects my PoTS.
I also have a ‘Reveal LINQ Cardiac Monitor’ to monitor my heart and I wear a Medic Alert charm necklace to help Emergency Services obtain information from a phone number and a unique reference number to access details via electronic record 24/7 365 days a year. This offers safety that my PoTS will be treated if I collapse and am unable to communicate.
I’m now an NSI Nail Technician and work hours which suit me and my PoTS.
I wouldn’t be where I am today without the endless love and support of my family, friends and especially not without my mum or my fiancé Jem, whom recently proposed. We are now planning our wedding for 29th May 2018.
Becky, Manchester (2017)