Hi All,

I just thought I would let you all know that I actually got a diagnosis yesterday. I have been diagnosed with postural orthostatic tachycardia syndrome or Pots for short. I am going to try and explain very basically what it means as I am struggling myself with explaining it.

OK in normal healthy people on rising from supine position and standing your heart rate would increase by 10-15 Beats per min (bpm) and then in a few minutes it will settle back down as your body gets used to the pull of gravity on your blood supply, on standing up blood drops to abdomen and legs. In POTS our heart rates (hr) go up by at least 30 bpm and stay there. Mine hr goes up more than 30bpm. All I know is that during the test my hr went to over 150bpm and it also hovered around 130/140 bpm. In POTS you don't have a drop in blood pressure (BP) bp stays the same or rises.

POTS is treatable not curable and some people go into a spontaneous remission, some people don't.

The good thing about the diagnosis is that it opens the door for more testing for me. Its unlikely that I have primary pots as my symptoms were not triggered by pregnancy -don't have kids, trauma - no, surgery no not when symptoms started. Secondary pots runs alongside autoimmune disease like MG (funny that!) and ehler danlos syndrome- EDS (joint hyper mobility). I do have joint hypermobilty probably EDS - but my GP was saying I couldn't be referred to a specialist.

I only got my tilt table test as they wanted to humour me. They thought it wouldn't show anything and my GP told me POTS doesn't exist and its normal for your heart rate to go up over 30bpm when standing.......really?

The tilt table test is the gold standard. Not a pleasant test but then what test is.

So I just wanted you to know that I may not be posting regularly but my adventures continue. For those who are interested in my story and my latest appointment I have details on my Blog http://themyastheniakid.blogspot.com/

Thanks for all your support guys. Particularly Annieb3, Alice and my face book chums.

Love
Rach