- This topic has 2 replies, 2 voices, and was last updated 1 year, 7 months ago by .
- You must be logged in to reply to this topic.
“Although I’ve often likened EDS/POTS to feeling as if one were both poisoned and electrocuted simultaneously, most unaffected people are unable to relate to the sense of urgency experienced by patients. Instead, patients are forced to “white-knuckle” overwhelming symptoms, sometimes living hour by hour, unable to escape symptoms through sleep or by lying down.”
Brings tears to my eyes everytime I read it.
This brings tears to my eyes too. It is so “right on”. We could never explain it to anyone that hasn’t experienced it. I one time tried to explain it to a friend that was addicted to heavy drugs for years and she said it sort of sounded like one of her withdrawal episodes when she felt like ending it all because it was so terrible. Having dealt with hyperPOTS, I relate to every word of this paragraph. If there’s anyway you can get to the POTScare clinic in Texas I’ve heard great things about it. Blessings to you and your fight to regain your life.
This was an incredibly difficult journey for my family, and it is my life’s mission to reveal how awful this horrible beast is for so many. I’m so sorry you are suffering, my friend. I hope the information I have released is able to pull you out of the downslide. Gentle hugs…
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross