The PoTS life chose me: heart medications that make your pharmacist say “what?”

I was 14 when I first lost consciousness. I distinctly remember coming to on the floor of my bathroom and feeling the chill of a metal curtain pole on my back. Prior to that I had lost my vision and fumbled blindly through the blackness to try and steady myself. The feel of the curtain in my hand had been my last memory. That helped me piece together the scene as I took in the ruptured curtains that had entwined themselves with my body, pole and all.

I spent many of the following years in and out of the paediatric ward. I had already been diagnosed with ME/CFS at the time. When I lost consciousness the doctors shrugged, chalked it up to ME, and swiftly moved on to the patient in the next bay. It wasn’t until 8 years later that I was finally diagnosed with PoTS.

PoTS is identified by an abnormal increase in heart rate when sitting or standing. Essentially, gravity isn’t my friend. The symptoms and severity of PoTS can vary greatly across patients, as can the likely cause of the condition itself.

Through the multitude of symptoms I experience daily, I have become very skilled at moving when I can’t see straight. Most of time I can even add in a smile and make it seem like I’m sort of okay. It is a very niche skill but, much like a drunk person who can appear sober, I am proud of my efforts. In truth, the only way safe way for me to move about is in a wheelchair with someone pushing me.

It’s been years now since my diagnosis and, alongside many self-management strategies, I have tried a slew of heart medications in an attempt to better manage my condition. With each iteration the medicines have become more obscure and the eyebrow raises from the pharmacists have gotten higher. Despite still being very debilitated, I haven't fainted fully in a while which I count as a win. Curtain poles everywhere will be thrilled.  

Some people with PoTS can experience a full remission. My eternally positive attitude had me convinced that I would be one of those people. Instead, I have developed additional heart issues. Whilst my cardiologist continues to scratch his head over my case, I’d like to remind anyone out there that needs to hear it that you can be trying everything, following all doctor recommendations, and still experience significant difficulty. You’ve done nothing wrong. Whether it is due in part to my genetic issues (hEDS or otherwise), the simple fact is that I have a poorly understood condition and, at this point in time, there is very little that can be done to help me. 

In accepting that my limitations are likely a permanent fixture I have found a lot of peace. I can design, draw and paint with my legs up and, save for a few button clicks and checks, I can operate my laser cutter whilst sat down too. My designs are also ready for me to make as and when I have the energy. Greenwood Gifted exists solely because I have an incurable, debilitating disease and that's pretty great. 

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Acronym Decoder
PoTS: Postural orthostatic Tachycardia Syndrome
ME: Myalgic Encephalomyelitis
CFS: Chronic Fatigue Syndrome
hEDS: Hypermobile Ehlers-Danlos Syndrome