Drop It Like It’s PoTS

I’ll start at the beginning, I’m told it’s a very good place to start. It was Mother’s Day 2013, I think, my memory isn’t so good with that fact, but I’m fairly confident - actually it could’ve been 2014 now I think about it. Regardless, it was Mother’s Day, I was living in a 2 bedroom flat with my step-sister and I was attending university down the road. I was at home with a cold, bundled up on the couch watching tv under a blanket; when I heard my dad and step-mother arrive to drop something off, they knew I was sick, so was just going to slip it under the door but I thought I’d get up and answer it.

I had felt a bit woozy throughout the day, but put it down to my cold and sinus infection. I answered, and remember them asking me how I was, and myself walking backwards into the house to invite them in - I remember trying to say I had a berocca for breakfast as I couldn’t stomach food and that’s it. The next thing I know, I’m coming too on the floor scared out of my mind, not knowing what has just happened. My father was leaning over me, clearly trying to stay calm and not doing a great job. My step-mother called an ambulance - I had never collapsed before, I had hit the wall, and then the door jam on the way down, my dad caught me just before my head hit a concrete step. My lip was split, eyebrow bone bruised and neck sore.

The ambulance arrived and decided that my vital signs were stable, and I had likely had a vasovagal due to viral infection, they could take me to ED if I wanted; but I didn’t need to go in their opinion. I elected not too - and was entrusted to the care of my father for 24hours as I’d hit my head.

Due to my course, I was on placement at the time and needed a medical clearance to return, which I was given by a GP. 4 days later, I arrived at placement, not feeling great, but ok enough for work. I looked at my supervisor that morning, and she knew something was wrong - I had lost all colour in my face and was swaying, I was experiencing what I now know to be presyncope. By the time she got me to an empty room and safety, I collapsed on the bed. My heart rate was through the roof 140-150’s , my blood pressure 110s/60s - my next of kin was called and I was taken to ED, a small regional hospital that decided I needed care in a larger hospital; and was to be admitted to cardiology due to something strange on my ECG, my vital signs were odd and they could hear a heart murmur. 

I was transported to the larger metropolitan hospital - which is where I stayed for a little over a week, on cardiac telemetry, the youngest in a 4 bed-room, by at least 40 years. After arguing with doctors, and teams, about what the cause of my symptoms was I collapsed; and finally got the attention of the consultant I needed. Due to the fact I was on telemetry when I collapsed, he sent a referral to a cardiologist that specialises in syncope/black-out; I was quickly discharged - I was scared, I didn’t want to go home, I didn’t want to injure myself. I was given the object to go to rehab; which I didn’t want to do - I elected to stay with family for 6 weeks, until I was given permission to stay alone.

During this time, the cardiologist I was referred to sent me for a Tilt Table Test (head over to https://www.mayoclinic.org/tests-procedures/tilt-table-test/about/pac-20395124 to learn more about tilt table tests). I attended this and had a positive result, not at first mind you, it wasn’t until the end of the test that I collapsed. Due to the fact that I have been shaking during some of my collapses it was recommended I had an ECG to look for epilepsy as there was also a family history. This was also negative.

When I saw the cardiologist -  I had my answer. Postural Orthostatic Tachycardia Syndrome. I also had some evidence of Inappropriate Sinus Tachycardia.

I was lucky, from time of syncope to diagnosis was a matter of weeks - this is extremely unusual in dysautonomia cases. This does not mean I did not have symptoms previous to syncope, my cardiologist believes as we went through my medical history and childhood that I was experiencing symptoms from as early as 6 years old - certain things I did, things I preferred, this all leads to me looking after myself and taking care of my POTS without even realising. 

As I said, this is just the start, the very beginning - my story is still ongoing, and I’m here to share it with you.

How long did it take for you to get diagnosed with your condition?