I Wanna Meet People With Pots In Person!

I love this site and being able to meet people with POTS and learn about their symptoms.
I think it would be the greatest thing for people with POTS to get together in person. Do you guys think so? Do any of you know anyone with it besides who you've met on the internet? I think that would be the greatest way to connect, is by meeting in person. I also think it would be healthy for us to meet other people with it. Do you guys think so? :)
whittsnacks whittsnacks
18-21, F
19 Responses Aug 2, 2010

My cousin and I were both diagnosed with it within the same month! which is crazy! But its been really helpful to work together and have a support system! especially when our parents tell us that we are just being lazy or getting upset because we are always so tired! it would be so frustrating without her!!!

I would love to meet up with people for a conference or something like that = ] I live in Indiana (and no, there isn't more than corn here...)

I think it's a GREAT ideal, I have 7 yrs. exp :) maybe more...and Live in the "HEART OF IT ALL" if you guessed OHIO...Youre right....I don't know if people with pots can fly though, I am horrified of the ideal of it...never tried it..love to try it with a pots patient who's done it :),,,,,email buddym200@gmail.com Thanks

I was wondering if anyone here with POTS also experienced their legs turning colors when they stand? If you don't know, please don't try it, I'd rather not have everyone on this site trying to stand and kill themselves(figuratively)

I have a daughter that has POTS and two other people from her school that has POTS. This may not seem like much but they all sing in the choir. This is a very old building. Just wondered if the enviroment has anything to do with this disorder?

I am 28 now and was diagnosed with POTS in May 2009. From what I understand, it is a pretty severe form . I have a great support group consisting of friends and family. There have been a couple people I have met randomly here with POTS. Even though my support system gets me through a lot it is always great to meet the couple people with POTS that actually understand what I'm going through as well as us being able to help each other with symptoms noted, new treatment ideas, research, and good doctors to see. I live in Minneapolis, MN and have been trying to get a group together but haven't been able to find enough people in the area interested. I think it would be great to pick a destination a meet annually, otherwise if anyone lives close to minneapolis and would like to meet on a more regular basis, let me know, I would love to talk with you!

I was just diagnosed with POTS 2 weeks ago. I have been having symptoms for a lilttle over a year n they would always tell me it was anxiety. This is interfering with my life. N makes me feel horrible where I can't get up from bed sometimes, but I try my best cause I don't want to end up back in the hospital. I would really want to know how to deal with this n the symptoms.

Hi there, I have POTS as well and I hate it! I was just diagnosed with it in January. I feel sick off and on from it all the time, it makes me feel tired, and my symptoms scare me so I dont push things. I was wondering if any of you are on medication and does it help? I am on propranolol 10mg twice a day and it definately slows my heart rate down but I still feel nauses off and on all day =( Would love to talk to others suffering with this. Will it go away? How did I get it? Has anyone had a baby while having it? Im 27 and wanting to start a family in the next 3-5 years. <br />
Thanks,<br />
SP

I have had pots all my life. I am 29 now and still fighting it. Support from others with pots is very important so you don't start feeling alone with it cause it is hard for others to understand what you go through. If anyone has any question about it please feel free to ask. Also, you can follow me on twitter (@clintv11). I use it to post updates on my symptoms and what I do to help them, and just every day life events for someone who has pots. I also just started a blog to tell my story of dealing with pots. It's great to see ''potsies'' supporting each oth on here, it's good to talk to people who understand.

What a great idea! We are in Portland, Oregon and my 13 year old son has recently been diagnosed. Are any of you fainting all the time when you stand up when you are in a low cycle? He has only made it out of the house twice in the past week. My e-mail is: angelarubel@gmail.com

That sounds like a good Idea.Who better to understand then people who are going through the same thing!!!

That would be great. It seems the only person who can relate to me is my mom (they think she has pots too) I would love to meet someone who knows how much this all sucks

I think this is a wonderful Idea!<br />
we should all meet up!<br />
Where and when, put me on the e-mail list, I am willing to go anywhere.<br />
I have not met anyone with POTS yet.

I think this is a wonderful Idea!<br />
we should all meet up!<br />
Where and when, put me on the e-mail list, I am willing to go anywhere.<br />
I have not met anyone with POTS yet.

Email me at kmorgan288@yahoo.com...I am 19 and am dealing with the same symptoms...it would be nice having somebody to relate to!

great idea! i would love a yearly conference!! that would be really great. it would be so good for us to meet other people with POTS. lets see where everyone with POTS on EP live and then we'll see if we can meet somewhere in between.

We could have a yearly POTS conference...its a heck of an idea...I'm suprised something like that is not already happening...I'll do some research...We could all meet up somewhere...somewhere fun..with minimal barometric pressure changes (they kill me) :)

i am in idaho. where are you from?

were u from?? i have pots and really could do with the support of someone going through the same thing as me xx