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Living With Dysautonomia by Ben's Friends

Introduction

#1

Hi my name is Sandy. I’ve been living with several rare disorders, Dysautonomia for quite awhile now. The most troublesome is the POTS. I have some really good days, but then there are the awful ones that make me feel like a 100 year old woman. I have the brain fog, the flu feeling, the dizziness, you can say I have it all. Took the tilt table test and passed out right from the beginning of the test unaided by the drug they give you to race up your symptoms. Currently taking a beta blocker, eat salt, drink a lot of water with my own electrolytes in fruit and salt added to the water. I try avoiding hot environments and sleep it off. I have some really good doctors who help me through this, although many still don’t really understand what we actually deal with each day. I’m married, have grown daughters, and one of my daughters has much of what I do. I think the youngest has Ehlers Danlos but she has not been evulated.
I’d like to say I am active but I’m not and could do better if the EDS was not a problem for me. I understand recumbent stationary bikes is what is recommended for us. Hope everyone is doing well.

1 Like
#2

Sandy, it’s so nice to see that you’ve found this community. Dysautonomia, as you are aware takes on so many different forms. POTS has so many different levels of severity and with that directly impacting our quality of life. Thank you for introducing yourself! There are others that should be posting soon!

Looking forward to hearing more and being able to really have an open community where we can support each other, provide hacks, and share good moments.

Kim

#3

Kim,
I read the guidelines and wanted to tell you upfront, I pay for a vpn subscription. I was hacked on Facebook and personal information was gathered. I reported this to the federal trade commission. I am now off Facebook looking for a safe place to be on a support group.
The proton mail address is recommended as private.
If you have questions please contact me.
Thank you
Sandy

#4

Please know that this is a safe site. We scrutinize users before they are approved. I’m so sorry that you had a poor experience previously. This group is just starting to get some more members who should be introducing themselves shortly and we can all get to know each other. :slight_smile:

#5

Kim I’m still trying to figure out how to post a really good article I found
Will post it again when I figure out how.

#6

@Sandy5149 you can message the article to me and then if it’s approved, I can post it! How does that sound?

#7

https://www.yahoo.com/lifestyle/12-embarrassing-symptoms-pots-dont-173411000.html