Friday, 18 November 2016

Health Update | PoTS Follow-Up

In  September I went for three days of autonomic tests at the National Hospital for Neurology and Neurosurgery - you can read all about the tests I had here. I received a letter a few weeks after my tests with my results but obviously still had to have a follow-up appointment with my consultant.

I knew I would come out with a diagnosis of PoTS (find out more about that at PoTS UK) as I had previously been diagnosed with it, but since I moved, my new consultant wanted to run more extensive tests to see just how much it was affecting me.

Upon arriving at the hospital I was taken to have my blood pressure taken and the nurse informed me that it was high - it usually is when I visit hospitals as I'm always stressed and in pain so I didn't think anything of it. We waited a few minutes before being called into the appointment. My consultant is lovely; she's really friendly, reassuring and informative. We discussed my test results and she told me that I met the criteria for PoTS. I was relieved as although I'd been previously diagnosed, it's always scary when you're experiencing symptoms and they might not be the thing you think they are. Alas, PoTS it is.

My consultant was more concerned with my blood pressure, not only was it high, it was dangerously high, and not just on the earlier occasion when the nurse took it. When I had my 24 hour blood pressure monitor back in September it showed that my BP was consistently high, as was my heart rate. Although the BP drops with PoTS mine is still in the high range once dropped. She had already written to my GP and I've been referred to a cardiologist who, she said will probably put me on medication to lower my BP and lower my heart rate. She also printed off two copies of my 24 hour BP test which had a graph to show my levels. Hopefully by giving the cardiologist this, I won't have to have another uncomfortable day of the annoying cuff on my arm going off every twenty minutes.

She told me about a PoTS Management course they run but doesn't recommend it for me as they teach patients ways to bring their BP up and I certainly can't be having that. I'm having another appointment in six months to see how I'm getting on with the medication the cardiologist gives me and see where we can go with treating the PoTS. So, until I see a cardiologist, there's nothing that can be done. On a positive note, at least the hypertension has been found and can be managed. 

All in all, it was a worthwhile appointment and my consultant was fab.


  1. It's reassuring to have your diagnosis of Pots confirmed and I think they took a sensible approach to look at symptoms in case they were caused by something new. I'm sorry to hear your blood pressure is high and I hope you are able to get answers as to why and get it under control x

  2. Although it's not all positive news it's great that you have a course of action and a consultant that you like and can trust. Take care xx


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