Forum Replies Created
July 20, 2012 at 12:48 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2646
I’ve been dealing with POTS for 8 months now (mine started abruptly after an episode of vertigo). When my GP did a Poor Man’s tilt test in January in his office, my heart jumped 40 bits when standing (he did it with an EKG machine hooked up). I’ve been taking a beta blocker and Desmopresin to control symptoms, plus Getorade. My tachycardia and upright time got better, however dizziness only seems to get worse. I went to a cardiologist in hopes for better treatment for POTS, and had a formal TTT at the hospital. Guess what… it came back normal. I can’t make any sense out of it… I still feel tachy (not all the time like in the beginning) and very very dizzy. Now my cardiologist wants me to stop beta blocker and the hospital made me to sign a form that I will. So frustrating, I feel like I’m back to square one. I’m totally confused.. One thing I know is that I’m not well. I guess my next option is a neurologist to do a full autonomic nervous system testing to look for dysautonomia vs. just POTS. It’s just so hard to find a good neurologist.
I stopped Propranalol and I’m back in bed today 🙁June 2, 2012 at 6:58 pm in reply to: An article from CNN about EDS #2321
Thank you Dr. Diana, will do. Just finished reading your book, have lots of hope! Will be discussing with my doctor. Thank you for publishing your research and findings.May 31, 2012 at 8:00 pm in reply to: An article from CNN about EDS #2274
Thank you Dr. Diana :)) It actually has a meaning: “H” stands for “healthy” or “happy” depending on what I need at the moment :)), “t” for my name, and 888 is a powerful code from Egyptian numerology. It represents victory, power and eternity (8 turned sideways = eternity). Before this whole EDS/POTS/Chiari fallout happend to me 8 months ago, in my spare time I had studied Egyption Code of Destany and how our name and birthday can tell about our soul purpose and lessons in this lifetime, all mystical stuff. Good, old days… Now I spend all of my time reading everything I can get my hands on about EDS. Today got a paperback of the Driscoll theory in the mail, was so excited to read until I got to page # 16 where it says that “surgery may be inevitable if you have retroflexed odontoid”. This is what I “think” I have; sent my paperwork to TCI and waiting for thier reply. Will see where it takes me… This is the only time when I wish I was wrong!!!
Thank you in advance for your feedback.May 30, 2012 at 6:19 pm in reply to: An article from CNN about EDS #2256
Dr. Diana, a woman left a comment to that article with a link to her life’s work finding a gene responsible for her family’s HEDS. If you haven’t seen this material already, might be an interest to you and your own research.
http://www.mthfeds.com/May 3, 2012 at 10:44 pm in reply to: NJ support group #2106
I would love to come if I feel good that day.. Can you please give me the details? I live in Howell.