9 years. 4 Doctors. Approximately 10 A&E visits and finally a diagnosis.
It’s not 100% official but there is a 99 per cent chance that all these years I’ve been suffering from PoTS, Postural tachycardia syndrome. PoTS is an abnormality of functioning of the autonomic (involuntary) nervous system. It is defined as an increase in heart rate of over 30 beats per minute (or increases to higher than 120 beats per minute) when standing upright.
The Autonomic Nervous System controls everything we do not have to think about. Examples of this are heart rate, blood pressure, body temperature and breathing amongst other things. Normally we can adjust to changes around us very quickly. However, a person whose ANS isn’t working correctly does not respond normally. It may take them longer to adjust or they may do just the opposite of what is expected. This can also start a cycle of trying to re-adjust to a given situation ‚for example, the heart rate rises then drops, then rises again.
A simple explanation is that the heart and the brain are divorced and are refusing to speak to each other! So my body has trouble regulating my blood pressure and because of that, it causes me to feel awful and causes me to have an attack which, in my case, looks like a seizure, silly body.
Back in September, I was told to increase my salt and water consumption among various other little things, and it seems to have helped. My last attack’ was about 3 weeks ago which for me is amazing, considering not so long ago I was having one every other day or so. Some of the symptoms I’ve always had, such as cold hands and feets and lightheadedness but I ‘thought that was me’.
I do feel like I’ve turned a corner. After what seems like a lifetime of not knowing and obviously worrying from my parents as well as friends and myself, we have an answer (a 99% answer). There is no direct ‘cure’ but at least knowing what it is and that I’m not the only person sure makes a hell of a difference to how I feel about things. (warning, mushy part) I definitely couldn’t have got this far without the bunch of people I call friends. I love you guys!
PS. This is the Doctor I saw. How cool is that?!
Peace and Love,
One very happy Tyveloser! :p
The information provided here is taken from STARS. To read more on PoTS and/or similar conditions please click here.