@BlackeyedSusan
if blood pressure is low on standing then it is unlikely to be POTS. blood pressure does not drop on standing but heart rate rises. They do like to do an ecg/ scan your heart, before tilt table tests.
That’s not necessarily true. You can have a concurrent diagnosis of PoTS and Vasovagal Syncope. It’s a common misconception, even among cardiologists. People with both diagnoses tend to have the heart rate increase with relatively stable BP, then a sudden drop after prolonged standing.
@Drinkwinewithme, @RockinHorseShit’s post is spot on. Both myself and my ds have PoTS (secondary to Ehlers Danlos, as mentioned by a pp). Ds faints ‘a lot’ without medication. I have never been a fainter really, although have on occasion.
Definitely push for a referral to a specialist. Both ds and I had tilt table tests, but it’s no longer considered necessary for diagnosis, especially in paediatrics. However, a properly conducted poor man’s tilt/active stand test should be carried out by a specialist (usually a cardiologist/electrophysiologist). EGC and Echo should be carried out to rule out any other causes for the symptoms and as I think a pp mentioned, blood tests for cortisol levels should be checked, alongside bloods for vit D and B12 deficiencies and anaemia. As others have said, ECGs won’t show PoTS, so aren’t part of the diagnostic process as such, but rather to rule out any other causes. Even prolonged/ambulatory ECGs don’t tend to help with diagnosis, as there’s no effective way of recording what the individual was doing when they were tachycardic.
Unfortunately, paediatric specialists in PoTS are like hen’s teeth in the UK. Once they turn 16 it gets easier, as they can be accepted by adult care. Dr Gall is the best of the best and can be seen privately in the first instance, but can only make recommendations to the patient’s GP or paediatrician until they turn 16, at which point he can add them to his list. Another option for a private consult is Dr Gupta of York Cardiology, who will also see Paeds. In my experience, General Paediatricians don’t tend to have any knowledge about PoTS at all, so don’t be fobbed off with seeing just a Gen Paed instead of a cardiology or specialist referral.
As others have said, PoTS UK website is a good starting point and I can highly recommend Dysautonomia International as well, which was where my specialist directed me to stay on top of properly researched up to date information.
Sadly, the vast majority of PoTS patients, especially teenage girls are told it’s either anxiety, mh issues or somatic before eventually getting their diagnosis. Things are improving, but it’s taking a long time for PoTS to be properly recognised understood by many doctors and shockingly, there are still those that don’t even believe it exists and will jump to the aforementioned assumptions rather than making appropriate referrals.