Altruism

Mine started after prolonged bed rest while being pregnant, tons of stress in last trimester and a horrible delivery plus massive blood loss - 4 reasons, hard to vote..

Some more additional info - my BP fluctuates a lot, but I have a really narrow pulse pressure. It' usually 98/79 or 100/80 or sometimes 160/140 while standing up. My symptoms are so severe that my neurologist said I can't do the TTT since I'm feeling HORRIBLE immediately after standing! Poor mans TTT is more than enough for me and wipes me out for days... I've had the cortisol test and my baseline was 25, 30 min later it was 32 and strangely 60 min later it was 38, not 50 as it should be, but the doctors said it's ok. Hmmm, is it? I have not received the results from my QSART, controlled breathing and Valsalva, but I know I failed the Valsalva big time as my BP overshoot to 190/120 an I only blew for 5 seconds, then almost fainted. Do you have any other ideas, what can I get tested for, where should I go? I live in Seattle, so Mayo, Vanerbilt and Ohio are too far away and flying is out of the question now as even sitting makes me symptomatic... I'm breastfeeding, is that a bad idea? I know MomtoGullianna felt better after she weaned her daughter off, but for most moms it's the other way round, so I'm terrified of the day when I'll stop breastfeeding my baby... will I get worse and how worse can this be? I suffer from adrenaline rushes in the am hours, non-stop spacey and foggy mind, lightheadedness, BP and HR are all over the place and I'm also going through the postpartum period. I'm scared I'm dying and I'm so glad I found this forum that helped me prove my doctors I'm not having " just a postpartum depression and anxiety".

Hello everyone, this is my first post here and I wanted to introduce myself. I'm Lucy and I (supposedly) suffer from pregnancy-induced POTS that started on Nov 6th 2012 after I gave birth to my beautiful son. I was on bed rest 2.5 months, had a HORRIBLE 48 hours back labor with indescribable pain despite the 2 epidurals and narcotics, I also had over 40 stitches and lost 1/3 of my blood volume which resulted in severe anemia. I am also hypermobile (seeing a geneticist next week to confirm EDS and find out which type I am and I also have a genetic component - mom and grandmom are hypermobile, but have absolutely no issues with dysautonomia). I'm super scared, confused and I suffer tremendously from all this. Having a newborn and being unable to leave my bed is horrible and wouldn't wish this to my worst enemy!!! My resting HR is 60-70 with occasional bradycardia 52-55. Sitting HR - 90/100. Immediately after standing - 120-170! I've been reading here all day long for the last month and I am glad I'm not alone, but I'm also terrified of how serious this condition is... What do you think is my prognosis based on the fact that I have EDS, but the actual onset was trauma (birth)-related? I know trauma and viral onset have a higher chance of recovery, but having EDS makes things complicated, right? Have you seen moms with EDS get better or worse?...I'm housebound, bedridden and very, very lightheaded, dizzy and have tinnitus. I'm hard of hearing as well, which makes my life real fun I guess (evil grin). Anyway, sorry for being unable to start a new paragraph, I don't know why but I can't. I have millions of questions, but I don't know where to start... Let me start with just sending hugs to every single one of you! We should be able to beat this!!! May the new year bring us symptom relief, remissions and plenty of good days (I have had 1 for the last 50 days, the rest 49 are pure surviving). English is not my mother tongue by the way, so I'm sorry for the mistakes.