KRKTS Posted June 12, 2005 Report Share Posted June 12, 2005 Hi! I just found this Forum and was amazed to see how similar my situation is to so many other peoples here. I'm stunned. I've been having POTS symptoms off and on since I was 16 years old but at the time they were pretty infrequent so the Dr's wrote it off as nothing. The symptoms got a LOT worse in 1993 when my first child was 2 I had repeated syncopal episodes in front of my husband which scared him to death and as much as I tried to tell him that the Dr's said it was nothing he insisted that our new GP figure out what was going on.. So that started years of testing some of it pretty scary and many different theories/diagnosis over several years. I had been on so many medications that were supposed to help with no effect or some scary side effects.. most of the current medicines I've seen here to treat POTS I've tried.. Finally in 2000 an off the cuff comment that I may have POTS by my nuerologist and a spot on Dateline about Chiari malformation and the NDRF site and I found my symptoms (that several noted specialist told me that there was no way I could have or that they didn't have anything to do with each other) on a website and found that there were Dr's that were studying it.. I took all the info I could find into my GP and he agreed that it sounded the most likely and sent my file to Dr. Biagioni at Vanderbuilt who agreed that he'd like to see me.. which was great except that I live in Oregon. So I talked my insurance into paying for the hospital stay and testing if I paid to get to Tennesee and stayed there for 3 days doing tests.. and I got my diagnosis.. I have a combination of Ehlers-Danlos syndrome, and POTS. But that all of the things I had tried that didn't work were what they recommended. So I came home knowing what I had, but no better off treatment wise. It was amazingly depressing. So I've just been trying to live with it for the last 5 years. In 2004 I found out I was pregnant with my 3rd (and last) baby, After having several POTS free months during the pregnancy and after my daughter's birth I couldn't stand it when my symptoms returned. This last Mother's day I had a syncopal episode and fell with the baby in my arms, I was scratched and dislocated 4 toes but it was enough for me to go Web searching to see if there was anything new out there.. And here I am! I have asked my Dr to try me out on Wellbutrin since it is something we haven't tried before and I it seems I do have testing that shows my adrenaline levels are off.. And he's also recommended I try PROVIGIL for the fatigue.I'm frusterated that there aren't any Dr's aquainted with this condition here in the Northwest and at the same time really blessed that I have a great GP.. I started the Wellbutrin friday and am keeping my fingers crossed that it helps.. Well this is me.. It's amazing to me that I'm not alone in this.. I've felt like the only person going through this for years! and here you all are! I'm glad I found you! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted June 12, 2005 Report Share Posted June 12, 2005 Welcome to the site Krkts! I hope it find it informative and helpful. It sounds like you have been through the ringer like the rest of us. We are happy to have you aboard and hope you find the support you need here! morgan Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted June 12, 2005 Report Share Posted June 12, 2005 Welcome! I'm glad you found this site. I just got dx in Jan 05 and my symptoms came overnight. I also have slow gastric emptying (gastroparesis) and am a young (28) mother of (3) 6,3, & 1. I see your a late nighter like me. Well it's great you have a good GP. That's important through all this unknown that there is someone who will help you. I'm sorry that you or anyone has to go through this. I always thought every illness had a magical pill. Boy was I wrong!!!!!!!!!! I wish everyone in this group lived near eachother so we didn't have to feel so alone. You will find alot of supportive people here.I'm currently not on any meds for POTS so I can't help with that. I just wanted to welcome you.Dayna Quote Link to comment Share on other sites More sharing options...
Poohbear Posted June 12, 2005 Report Share Posted June 12, 2005 Welcome to the site! I hope this will be a place of support and comfort to you!!I've been through lots of testing and like you...the disappointment of going home with a confirmation of what was wrong with me but no real solution. I've tried many many meds and they either haven't worked for me or I had side effects my body would not adjust to. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 12, 2005 Report Share Posted June 12, 2005 Hi and welcome.I'm a mother of three and still trying to find exactly what I have, but have a feeling that will never happen. I have been diagnosed with dysautonomia w/mvp and also have many of the symptoms listed here. Still trying to find out what will work for me and hopefully you can find something that will work for you. This is a great place for support.Welcome! Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 12, 2005 Report Share Posted June 12, 2005 Hi,Welcome to our little world of dysautonomia.You will find many friends here.Ernie Quote Link to comment Share on other sites More sharing options...
geneva Posted June 13, 2005 Report Share Posted June 13, 2005 Welcome to the group and thanks for sharing your story with us. It is good that you have an understanding GP who was willing to take the time to review material you brought in...not all will do that. I think we have all felt at one time or another, that if we could just get a diagnosis, then we would get the proper treatment and get on with our lives, but it is such a trial and error process with the drugs. I hope you do well with the Wellbutrin. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted June 14, 2005 Report Share Posted June 14, 2005 Hello!I just wanted to add my welcome. Thanks for sharing your story...like others have said, there are always many "me toos" upon reading others' histories. That's what makes this board so great. Sorry you have need to be here but glad you found us!:-)melissa Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 14, 2005 Report Share Posted June 14, 2005 Welcome to the forum. Sorry that you, too, have an autonomic problem. I'm certain that you will find many friends here.Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 14, 2005 Report Share Posted June 14, 2005 Hi,Welcome to the ForumThanks for sharing your story.Ernie Quote Link to comment Share on other sites More sharing options...
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