Dory

thanks, but she is 19..is that too old for the kids section?

I dont know enough about dysautonomia or how to have it diagnosed to say. I have read about POTS but have not yet found a specialist in my State that I have been able to take Cara to. We have been to a cardiologist first who was usless then a neurologist who ran a whole lot of un need test checking for epilepsy, which seemed stupid to me because she had a positive response to Prozac and I really didnt think epileptic people could take Prozac to stop blacking out, but what would I know. Then when she had a positive responce on tilt testing she sent us back to a cardiologist although a different one who has told her she does not have POTS but does have "fainting" and has put her on Florinef. So here I am searching again because I think there is more too it than that. And I appreciate all the help I can get...thanks Specifically though, what other test should I try to get for her that would indicate any thing else.

Again Thanks, Just so I clearly understand once and for all, from people that really do know what they are talking about..... people with POTS do or can totally black out for any unspecified amount of time, not just faint and then come too straight away? I dont think Dysautinomia problems are really up there yet with the Specialists that we have so far seen, maybe like chronic fatigue you have to find the right doctor that actually believes in the condition first. After lots of reading POTS was what I thought my daughter had, (specially since she had not benn the same after a bad bout of glandular fever) and we had to argue with the town general practicioner to get Prozac prescribed for her to keep the symptons from being so chronic and the constant head injuries from the black outs from being so severe but when I was told by a specialist that it was not what she had I thought , well we will give this a go and see what the results are. My underlying fear is that if she is treated for less than what she has, they might not treat her as well as possible. I have read that the herb Astragulus is good for immune function does any one know if immune stuff helps at all? And please any answers about black outs are really needed. Thanks for the Australian info, That particular place is States away and about mmm maybe 3 days of big driving so I will have to see what I can find out for Queensland. Thanks Dory

Thank you, The medication she takes is fludrocortisone, but I am not sure what dose, she is away in the city this week and will get to see the doctor again while she is there. She has had this condition since about Febuary last year and we spent many months going from test to test ruling out epilepsy and heart conditons etc, I am sure you would all be familar with this sort of stuff, getting sent from one specialist to another. Finally they gave her a tilt test, which I knew from what I had read was one of the few things that can diagnose stuff like this. So she was able to see a cardiologist in November I think that said she had "fainting" and put her on the medication. Her was actually really quite nice and went to extremes to try and settle us down and asure us it would be treatable and that there is nothing wrong with her head or her heart, but something wrong with the comunnication between. Her told her she had to stand up against a door every day for 15 minutes and start to exercise as much as possible, and then take it from there. I had made a mistake though of writing to him prior to the appointment stressing the need for him to take the time to read all the tests she had already had done and telling him that I thought from what I had read that she might have POTS. So I may have stepped on his toes a bit maybe, who knows. We live rural and in Australia so it is difficult to find doctors that might know more. Thanks for the reply's

My 19 year old daughter suffers from a condition that the cardiologist says is "fainting" tilt test has confirmed that her heart rate quickens and her blood pressure drops. I think she has POTS but the specialist said that POTS people do not black out, they faint, but do not lose concisness for any amount of time like my daughter does, when she blacks out it can be for an un specified amount of time until she comes around or until some one brings her around. The doctor has put her on ? It is a steriod based medication that requires her to take potassium. It does keep her upright but she is still un well and has trouble sleeping, headaches and sickness in her stomach. Can any one tell me if this sounds like POTS please. thanks