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UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 2/23/2012 3:25 AM (GMT -6)   
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!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/23/2012 11:26 AM (GMT -6)   
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
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 3/1/2012 12:43 AM (GMT -6)   
thanks :-) i did find some people over in the headache area to talk about it with :-)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/1/2012 4:11 AM (GMT -6)   
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
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/1/2012 4:19 PM (GMT -6)   
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
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination."

UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 3/4/2012 9:39 PM (GMT -6)   
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.

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/11/2012 10:07 PM (GMT -6)   
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

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/14/2012 12:29 PM (GMT -6)   
B, Thanks for you post and you will have to keep us informed of the research findings.
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"Learn to get in touch with the silence within yourself, and know that everything in this life has purpose. There are no mistakes, no coincidences. All events are blessings given to us to learn from."~ Elisabeth K├╝bler-Ross

madamebrianne
Regular Member


Date Joined Oct 2012
Total Posts : 37
   Posted 10/31/2012 11:52 AM (GMT -6)   
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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