caronson

I am paying lots of attention to the hormone issue right now-- and wondering what's the point since there seems to be no pattern in the reports! When I was around 40 I had a big improvement in my dysautonomia (more on that another time; I attribute it to C-spine surgery and compression stockings) but around my period it would get way worse again, especially fatigue and OI. My doctor and I decided to give low-dose birth control pills a try, to "even out" the hormone fluctuations and keep my blood volume from bottoming out (that was my thought anyway). I felt worse than ever, and quit the pills after 12 days, end of experiment. Fast forward to now, I am 52 and menopausal-- not officially because it's been less than a year since my last period, but this is the longest interval yet, my hormones totally look postmenopausal (2 years ago they were quite the opposite), plus, I have hot flashes all the time. Back to the dysautonomia, and why I'm paying attention-- after having had further improvement at about age 48 (even weaned off the compression hose), now this year, I am in a huge relapse. It coincides with menopause; what does that mean? None of my doctors are encouraging HRT but they are also willing to try it at low dose if I decide I want to. I would love to hear anyone's experiences with regard to menopause and/or HRT and how they affected your dysautonomia. The other reason I'm writing this post is for those with high risk for ovarian cancer: This is off topic, but please don't let anyone tell you oophorectomy makes you 100% safe from that! Technically you won't get cancer on ovaries you don't have, and it is now thought to decrease the risk by as much as 80 or 90 percent from whatever your personal risk level would have been. BUT there is still a risk of primary peritoneal cancer, which has the same biology, prognosis, and treatment. (Also sometimes a woman is diagnosed with ovarian cancer, then surgery reveals the cancer isn't really concentrated on the ovaries so the dx is changed to PPC-- this is what happened to my mother, who still had all her organs before the cancer.) A good summary is here http://www.mayoclinic.com/health/breast-cancer/WO00095 I feel for all of you who have this decision to make-- my family members have been there, and I have been there with respect to other "elective" surgeries-- it is no fun and I wish you peace and strength. Carolyn A. in Tucson

Interesting! I could go on and on about my own strange breathing issues, and shortness of breath (loosely defined) is one symptom that has stayed with me even in the best of times. Looks like they are investigating this at New York Medical College-- there is a study in progress by Dr Taneja and Dr Stewart. Might be worth to look into! Carolyn A. Tucson