Did you see the brilliant Dr Boon Lim on Diagnosis Detectives last night?
This world-leading specialist is one of several experts who will star at our virtual Patients Day launching September 27th.
To view the full list of talks visit: bit.ly/PatientsDayAgenda
To register or find out more visit: heartrhythmalliance.org/afa...
Yes I saw it - but the cause turned out to be nothing to do with cardiology but showed exactly what the Tilt Table Test is like.
Yes, that was the one bit that really interested me! My grandson had one and I had no idea it was like that. His dad said "We were at the hospital yesterday for Luke’s tilt table test. It sounds like they got some useful results, as Luke almost passed out (Apparently having to stop the test due to passing out indicates a positive for a heart rate issue). Unfortunately we were not in the room, and Luke was somewhat groggy but he does recall them saying they have identified his issue. Hopefully we will have an appointment with the cardiologist soon to find out – it s a shame they don’t give you the results on the day! It sounds like it is an autonomic nervous system issue such as POTS. Hopefully now they can treat Luke – it has been a long journey via lots of specialists – it was only luck that got us to the cardiologist"
He had a vitamin D deficiency too. I'll ask what dose he's taking and if that made a difference!!
The programme showing brain surgery that followed was also very interesting. I will watch the rest of them.
Which hospital does your grandson attend? It’s so good to see that children are now being taken seriously - I had syncope or near syncope all my life but was never taken seriously. I would be interested to see how they treat PoTs in children. I attended the STARS Patient Day 2017 & 2019 and they had some excellent speakers and I learned a huge amount.
I found my BP stabilised with Pyridostigamine which I was prescribed for Autoimmune Condition and then found that it was also very occasionally prescribed for PoTS with low BP.
It’s always SO hard when it’s a child.
Oh, he's not a child, he's 31. This March, they moved to what I call Deepest Dorset, Thomas Hardy country. I'll find out which hospital they attend and the latest news. This all started with a virus four years ago, pretty typical for PoTS and then he became type one diabetic. My son has ectopics like I did and I think there is something genetic in it all.
I have a slight tendency to syncope. I first fainted when I was 11 during school assembly. I came to as I was being carried out of the hall feet first.
I am suspicious about how, some hours after the ablation I stood up and my blood pressure dropped and it took over an hour to get up to a level where I could go home. I will ask the EP if this is common, if it is then it's not connected.
Another thing that happened occasionally, shortly after getting out of bed, was having to lie down until I could stand up again. That's been going on for years and I wondered if it was to do with the AFib. If it happens again I will know it isn't. However, it was only very occasionally.
Is there a connection between all these things? I'd like to find out.
Arrhythmia Patients Day 5th October
Patients day in October.
AFA Patients' Day - great source of information especially if you're new to AF
AF Association FAQ
