Tiffany

Hi, my name is Tiffany and my PoTS story started in the winter of 2019 and so I can’t even blame Long-Covid; both a relief and a curse, as I was only a few months away from an easy explanation.

One evening I drank a decaffeinated coffee and the next thing I knew I was in the back of ambulance because my heart-rate had skyrocketed to 152 bpm. The following week I went out for drinks with my friends and became so dizzy we had to cut our night short to get me home. I didn’t know what was happening to me!

The onset of dysautonomia was violent in its arrival and came with such heightened anxiety that I felt like a live wire. The tachycardia terrified me to such a degree that I stopped walking alone and stopped using public transport altogether. I was an American living by myself in England which only compounded my fears because I had no one to turn to.

PoTS can feel devastating at first: the tiredness, the dizziness and the racing heart resulting in panic attacks which can be very frightening.  I suddenly became a PhD student who could no longer tolerate coffee or alcohol, a paradox if there ever was one.

As sweet and understanding as some people were, others thought I was having a mental breakdown and one or two relationships were significantly altered. The Illness can result in social exclusion and isolation and the wait to ‘return to normal’ can become an obsession.

Three years later, I just started Ivabradine, and this has thankfully brought my heart-rate down. I’m also starting Midodrine for my blood pressure.

I wish people knew more about dysautonomia and how emotionally disruptive it can be. I now have a fear of all stimulants. I’m hopeful for the future though and my first goal is to be able to drink a regular cup of coffee!