Holly’s story of living with POTS

I started feeling heart racing problems when I was about 8 and complained about it, I grew up knowing if I did a lot of physical exercise I needed to sit down so my heart would stop racing and hurting. In high school when I was about 15 I noticed I got dizzy when I stood up, I thought it was normal and learnt to live with it, and then I started to notice the fatigue and struggling to keep up with everyone else.

My symptoms progressively got worse until a year ago I caught a virus. My heart started beating so bad even laying down for days it wouldn’t stop. I went to the hospital, high blood pressure, high white blood cell count, heart rate 190bpm sitting when I first went in. On monitors my heart kept jumping from 110 resting to 180bpm standing. No one knew why and I was treated pretty badly, I was very ill and they wanted me to go for a psychiatrist appointment, even would wheelchair me since I could barely walk with my heart rate, and sent mental health workers to talk to me.

Months and several cardiologist and specialists later, I did a tilt table test and they diagnosed me with POTS.

I’ve been on propranolol since February but just changed meds days ago to ivabradine because of fatigue (they think it’s from propranolol causing blood pressure to lower but the fatigue is the same on or off meds)

In the last year I’ve gone to not being able to shower myself, barely able to stand for longer than ten minutes because of blood pooling, pain, and angina, to being able to cook and clean in moderation. I still can’t work and at 23 have nearly zero work experience and failed uni three times because of symptoms.

The biggest advice I would give to anyone going through this is: don’t give up going to doctors and getting an answer. I went to doctors during all these years for fatigue and everything was brushed off as depression or anxiety. I believed them and did everything I could to try and get better, trying three antidepressants that made me sicker. Trust your body and trust yourself don’t let doctors bully you or label you as crazy when they won’t look into what’s wrong. Nearly everyone with POTS has been labelled as depressed or anxious, you’re not alone. The cardiologist at my last appointment when I told him doctors have always said it’s mental scoffed and said “that is a stupid mentality.” If you have felt bullied and hurt by lazy doctors during this process as well, know there are still good doctors out there who are intelligent and doing their jobs, just don’t give up.

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