tachyfor50years Posted May 24, 2013 Report Share Posted May 24, 2013 If you could ask scientists to study any research related to POTS, what would you ask them to study?I would ask them to focus on the causes of feeling faint (presyncope) despite normal vitals (heart rhythm, BP, temperature etc). perhaps (hypovolemia) ? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 24, 2013 Report Share Posted May 24, 2013 I would really like to understand why so many of us have vestibular issues and how it's related to POTS and also, why the severe cognitive and memory problems at our young age. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 24, 2013 Report Share Posted May 24, 2013 I would love to see research on more effective drugs that target the actual autonomic part of the nervous system so that while we're trying to find our individual root causes, we could be treated better symptomatically and have some semblance of normal lives. Quote Link to comment Share on other sites More sharing options...
Tobiano Posted May 25, 2013 Report Share Posted May 25, 2013 Qualitative research on the lived experiences of having this condition that could be used to educate physicians. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 25, 2013 Report Share Posted May 25, 2013 Also I wish they would do a really good long term study on prognosis. Do we heal, stay the same, or get worse over the years. Quote Link to comment Share on other sites More sharing options...
anna Posted May 27, 2013 Report Share Posted May 27, 2013 I would ask why can they not see beyond the whole it's all in your head rubbish opps I am on a rant here sorry! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 27, 2013 Report Share Posted May 27, 2013 Why don't you ask the researchers. Some have email addresses and are human and nice people.peripheral blood pressure readings tell you nothing about blood pooling in pelvis and stomach, reduced venous return, reduced stroke volume and cerebral blood flow. Therefore more often than not peripheral (arm) blood pressure readings are meaningless in pots because often its regional blood changes at play leading to reduced stroke volume. Quote Link to comment Share on other sites More sharing options...
anna Posted May 27, 2013 Report Share Posted May 27, 2013 I will try and get my scatty brains together enough to get some emails out, I have decided to get hold of mine and my children's medical records to be able to back up my thoughts. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 28, 2013 Author Report Share Posted May 28, 2013 Thank you every one for your input. The other day I was at the Dr.'s, it was before noon (my worst time in the day) I barely made it to his office, I was having a very bad episode of presyncope with extreme weakness, my vitals were almost normal or borderline except for my tachy (106 bpm), I appeared OK for them, but, I really wanted to scream at the entire medical group: [WHY you can't see what is going on in my barely a live body? Why are you using the same medical standards with me? I am not a typical patient having an illness, I have Dysautonomia. I am really sad (Not from Anxiety or Depression as you think) but from playing this game for 50 years]. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 30, 2013 Report Share Posted May 30, 2013 nearly all the recent studies on POTS suggest that blood pressure readings are not indicative of symptoms. Quote Link to comment Share on other sites More sharing options...
Tobiano Posted May 30, 2013 Report Share Posted May 30, 2013 ramakentesh - I'm experiencing this today (ok BP but still symptomatic). Do you have some references?? I would love to read them. Thanks!! Quote Link to comment Share on other sites More sharing options...
anna Posted May 30, 2013 Report Share Posted May 30, 2013 Tobiano this link may be of use:http://www.patient.co.uk/health/postural-orthostatic-tachycardia-syndrome Quote Link to comment Share on other sites More sharing options...
diamondcut Posted May 30, 2013 Report Share Posted May 30, 2013 I would agree with what you are saying, my tachy is terrible, but my blood pressure never really changes at this point in my life. Even when my heart has been slowed down by medication and its made my heart then beat irregular and i have been very weak and dizzy, my BP has been perfect and i could never understand why or how that could be. So that kind of explains it. Quote Link to comment Share on other sites More sharing options...
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