Friday, 23 June 2017

My PoTS diagnosis story

I first fainted at the age of ten years old, I had been performing on stage at a school production, when all of a sudden, the room started spinning and I couldn't see anything, I had no idea what was going on or how to stop it, but without realising it, I had already collapsed onto the floor, and been carried off by friends and staff. When I woke later, it was concluded that I had fainted because of the heat in the school auditorium.... 

Everything was fine until two years later, I collapsed again, another two years later it happened again, then a year, three years, these situations were all very sporadic and doctors/nurses/paramedics would usually put it down to my tall, slender physique the environment was hot, or I was in a lot of pain. Nothing quite added up, my GP checked my iron levels, which were within the normal range, and I was sent on my way...




Fast forward to June 2016, I collapsed on the underground, paramedics were called to the scene as I presented a fit-like seizure, they found an array of infection levels within my body, and noted my low blood pressure, though told me I should increase my intake of water and I would be fine...

Yet after two days of bed rest, plenty of fluids and sleep, I returned back to my normal rotinue, though it happened again- the same train station, same hospital, although not the same ambulance, I was remembered and was speculated to be pregnant - they confirmed I was not, and once more put it down to the heat..

I couldn't understand why in all of these countless situations, I was being told by family, doctors, nurses etc that it was something so simple like the heat - however, why was no one else also collapsing? I knew something wasn't right, and this time I was no longer a child, and took matters into my own hands.. 

Being a young, slender female, I am certain I was not taken seriously...from appearances I do indeed look like an otherwise healthy twenty year old. Though it took over six months, over fourty trips to A&E (via ambulance), over ten injuries that required medical attention from collapsing and tripping over something, falling down stairs, or falling onto sharp objects... 

I finally met with a doctor that understood and matched everything I was saying - I can't explain how much of a huge relief to finally be taken seriously. I initially was diagnosed with PoTS in April 2017, by three consultants, yet it took until June 2017 to finally have a confirmed diagnosis from the tilt-table testing. 

The tilt table test involves a series of tests used by doctors to explain episodes of fainting, your heart and blood pressure as well as nerve cells are constantly monitored, whilst you perform an array of different tasks which may include:
  • Being strapped to a bed, which changes position from laying to standing - the idea is for the patient to stand for twelve minutes, though after less than two-minutes standing still, I collapsed and my blood pressure fell from 117/64 to 40/20
  • The following day, the same equipment was used to asses my autonomic system after a meal,  again, I scored another tick for this when my blood pressure fell from 90/60 to 40/20 within twenty-minutes of eating 
  • Standing with my arms out in front of me and above my head, also caused me to collapse after just four minutes
They also noticed how my heart was not functioning as it should, jumping from 240 bpm to 30 bpm... upon doing the smallest of tasks such as going from sitting to standing. From this set of testing I was diagnosed with Postural Orthostatic Syndrome, Autonomic Mediated Syncope and Autonomic Dysfunction.

Living with PoTS means I need to consider if and how I am able to do basic everyday tasks, I once wouldn't need to think about, such as stepping out of bed, going for a shower, eating a meal, what I eat and drink, temperature changes.... the list goes on!

I know for certain, that my perseverance and stubbornness have definitely caused avoidable collapses to  the floor because I am too stubborn to ask for help, crawling on all fours to make dinner in the kitchen, but most of all, my determination has kept me going through this, it can sometimes be so difficult living with PoTS but I am so much stronger because of this and I also can't thank those who support me through my journey enough. 

The Hopeful Chronic

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