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POTS Syndrome

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Posted 2/23/2012 8:25 AM (GMT 0)
I was just wondering if anyone on here has POTS Syndrome or knows a lot about it. Im going to a dr next week to have a day long worth of tests to see if i might have it. Ive done research online and there isnt much on it to be found. I just thought it would be cool to talk to someone that has it and know what kind of treatments they have done and if they helped functioning in their life and some stuff like that. So if anyone knows anything id love to hear what you have to say about it!
Posted 2/23/2012 4:26 PM (GMT 0)
Good Morning,

I wish I had some info or advice re POTS but the best I can do is post a link that may help you.  I suspect you know most of what is on this link so I am sorry if it is redundant.

I wish you the best as you go through your many tests and I hope you come back here and teach us about this disorder.

Kindly,

Kitt

Posted 3/1/2012 5:43 AM (GMT 0)
thanks :-) i did find some people over in the headache area to talk about it with :-)
Posted 3/1/2012 9:11 AM (GMT 0)
UnknownIllness,

I have had POTS since 2004, although not officially diagnosed until 2006. I wrote a long response to you on the Migraine board - under the thread "very frustrated!". Good luck on your journey towards finding a diagnosis.


Kitt,

I think I'll come back here in the next couple of days and write up something about POTS. I've looked in here a couple of times to see if anyone else had POTS.... and could never find any info. I hope that by writing something up - it might help someone who comes in here w/ similar symptoms.... it also might help educate others about what POTS is. Most doctors don't even know much about it....

Take care everyone....
--Tina
Posted 3/1/2012 9:19 PM (GMT 0)
Tina,

Thank you so much and your input and any education you may be able to share here in the forum would be truly appreciated.  I know many would like to learn more about POTS.

I appreciate your support here in the Heart Forum.

Gentle Hugs,

Kitt

Posted 3/5/2012 2:39 AM (GMT 0)
Tina that would be great! I decided to check up on my posts, for some reason im not getting any emails anymore telling me people had posted on stuff.
Posted 10/12/2012 3:07 AM (GMT 0)
I was diagnosed with POTS last year after six years of baffling symptoms and countless doc appointments. This coming Saturday I will go from my hometown in Ohio all the way to New York to participate in research.

Please, feel free to message me if you have any questions or just want to chat!

Thanks, and take care,
B
Posted 10/14/2012 5:29 PM (GMT 0)
B, Thanks for you post and you will have to keep us informed of the research findings.
Posted 10/31/2012 4:52 PM (GMT 0)
Hello,

Just wanted to give an update now that I have returned from participation in POTS research. I found out that I have the Hyperadrenergic form, which means that both my heart rate and blood pressure rise when I stand. Also, I have low blood volume, poor circulation, and significantly low carbon dioxide. I am still waiting on additional tests results, but I did receive scripts for new medications and am on the road to feeling better and living a more active life.

Hope you all are well!

B
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