Why no one knows about POTS??its beyond ridiculous!!

[electricpower177]

Im from india and i didnt even knew i have been sufferinng from this deliberating condition  from 4 years until i researched intensively about it online,when i came to know about it i told my doctors,parents (who think that im lazy and clumpsy etc.I tell u they are most awful parents ever !!whom have lots of pareting problem) about it and said "look plz i have pots"then they just laughed and mocked me by sayin ur just anxious or anemic or blah blah!! Im just wayy too annoyed that even giant heart and neuro specialists doesnt know anything about it. It feels like im left alone and helpess where no one cares how bad my condition is since my ecgs,blood tests,echos are normal they think im fine and am just gone insane,i told my doctor to run me a tilt table test but she didn't allow me to.

[bombsh3ll]

Sorry you're going through this. I don't know about the medical system in India, but in the UK I have the impression specialists don't actually want to diagnose POTS because then they'd have to treat you. I too was passed around various specialties who did just enough tests to triumphantly declare I didn't fall within their specialty, then discharge me with no help or treatment. I recently paid to see a private cardiologist who is prepared to work with me and try different treatments (including IV fluids!) once I have had a blood volume test and repeated an inconclusive test for diabetes insipidus. 

When I said to him he was only the second doctor (including the specialist who diagnosed me) that I had met who had heard of POTS, he said that his fellow cardiologists in the NHS did know about the condition but had no interest in treating it. They find ablations and cardiac catheterisations etc much more satisfying.  I think it is very sad that they don't consider someone young and severely disabled worth treating. 

I would say keep pursuing a tilt table (or a stand test) to get a diagnosis. I have found that although I still have no treatment, I am no longer fobbed off as much or treated like a neurotic hypochondriac now I have a formal diagnosis. 

 

[yogini]

Google tilt table test in india.  Many results come up.   You many want to try to connect with a place that offers the test.  

In my personal experience, it is a mistake to mention POTS or any diagnosis to a doctor.  They get this a lot from patients - most of the patients are wrong - so they will never take you seriously - especially if they hadn't met you before and if you are mentioning a condition they had never heard of, and even moreso if they are famous and well known.  The only place it makes sense to mention POTS is to a doctor that Mention your symptoms, like tachycardia and it is more likely that you will get treatment.