Postural Othostatic Tachycardia Syndrome, or PoTS for short, is defined as an ‘abnormal response by the autonomic nervous system to becoming upright’. After reading a lot about other people’s experiences and symptoms I’ve learnt that no two patients are the same. We may all have the same diagnosis but our experience and severity of the condition varies completely. SO this is my story, my version of PoTS.
I first started presenting with symptoms back in 2005. I had fainting spells which doctors put down to puberty and being female. After a while they were diagnosed as panic attacks and this stuck for a really long time. I knew deep down it wasn’t a panic attack I was having and my parents knew it too but we didn’t know what else it could be.
A few years later, after seeing many doctors, I was diagnosed as having non-epileptic seizures (NES). The causes of NES are pretty unknown too so I was referred for more tests and psychotherapy. I was made aware of a charity called STARS (syncope Trust and Reflex anoxic Seizures) who specialise in helping people who have unexplained loss of consciousness to get the right medical help and support. They offer a lot of information on Reflex Syncope, Reflex Anoxic Seizures and Postural Tachycardia Syndrome. Though I hadn’t been diagnosed yet, in the summer of 2013 me and three friends ran the 5km ColorRun and raised just under £500 for STARS.
During my first year in Sheffield, I was so overwhelmed and amazed at how great the doctors were. They really took their time to go over my history and re-do a lot of the tests I had had back in Newcastle. In the beginning of December 2013 I received a 95% diagnosis for PoTS. It has been a long and difficult battle to get a diagnosis, but the war is not over yet. I have read some other blogs that discuss PoTS and/or Dysautonomia and I sometimes feel like they have too much of a negative outlook on their condition.
We all have bad days, weeks, hell even bad months when it feels like we’re not able to control our bodies, no matter how hard we try or need to, but then there are the good days, the moments when you wake up expecting to feel rubbish and it’s like you’ve been given a free pass for the day to do anything. Those are my favourite.
I hope you found some of this interesting, please check out my other pages on PoTS.
Peace and Love,