Tilt table/loop recorder update (September 9, 2018)

[@Softening.into.His.Glory.]

Good to know about the medications. I had no idea!

[@ErynRea]

seriously !

[@shannongreenwell1278]

I would have my trepidation on the medication also. I would be afraid that I would seizure and then pass out.

[@JenniferShipleyArt]

As well you should be. YOU unfortunately cannot afford to NOT micromanage your healthcare. Ugh, but u r supposed to put the compression on BEFORE u stand up. U put ur legs up in the air while on ur back and put them on while ur legs are the least swollen as possible. I sleep with my legs elevated above my heart as much as i can also. I’m sorry you didn’t get the answers you were hoping for. I know that disappointment as well. I’m so sorry.

[@jilliangreen8435]

can you please make a video about all of your symptoms?

[@TranslucentOne]

High Healed Hippie my vEDS symptoms? Or the TIA symptoms? I have a TIA video from right after my first one.

[@jilliangreen8435]

@@TranslucentOne no, your veds symptoms currently and when you were diagnosed

[@TranslucentOne]

Some of my older videos have this info but it is probably a good idea to make a new one at this point. Will do!

[@relocatetoItaly]

Aaahhh so annoying. Professionals need to answer questions. . You have to be your own health advocate. I don't not understand why you have to be strapped to a table for an hour while nurses kill time around you. I had a similar experience having my Loop recorder placed. It was 100 times worse than they said. Can't stand health professionals who can't ask you some questions and let you have your questions answered!!!!

[@jilliangreen8435]

is the eds society raising funding for research?

[@TranslucentOne]

High Healed Hippie Yes they are! They have a restricted option on the website for anyone making donations, they’re providing funding for the vEDS emergency helpline (launching next year) and they will be announcing new research projects hopefully before the end of the year! Lara Bloom, the director of the EDS Society, is also on our vEDS Collaborative group :)