KRKTS

I didn't feel like Mayo answered my questions well enough. They basically said....here is your diagnosis...we don't know the best way to treat it...you just need to figure out a way to live with it...come back in 6 months! Hi Lisa, I'm new here too, although I've had POTS for years. that is so frusterating!!!! that happened to me when I went to Vanderbuilt. For me they looked at everything we had tried so far. ( I was part of the clinical trials for Midodrin, had tried beta blockers, atenolol, and every other med they could think of out there before going) And basically told me well there's nothing else to try so go home and live with it.. It can be so depressing. But don't give up, I've been amazed at what I've been reading here and what all can be tried and adjusted to help. I'll keep you in my thoughts.

It seems about the same maybe a little more tired. Although that first day I definitely took a much longer nap than what I normally would have. What is your dosage? I'm wondering if maybe he started me out really low?

Normally I'm a caffiene addict and could definitely tell the difference in my fatigue levels when I didn't drink enough. but it seemed to make the syncopal episodes more frequent.. and the fatigue was still pretty dibilitating. I caught the flu 3 weeks ago and the taste of pop was just to sticky sweet for me so I switched to water and have been caffiene free for that long and now I don't notice the difference so much.. I feel pretty much like I did when I was drinking it so I'm wondering if it really helped me as much as I thought.

Does anyone here take a stimulant medication for fatigue? I get so tired after having a near syncopal episode that I could sleep for a couple of hours.. and on days where the episodes are one on top of the other I can barely move and if I go to sleep I can sleep as long as 14-15 hours straight. My Dr suggested we try a stimulant to try to combat the fatigue and gave me a trial of PROVIGIL on Friday. I tried it for the first time on Saturday and within a half an hour of taking it I fell asleep and slept for 6 hours. I took it again today and didn't fall asleep immediately but I still felt tired and draggy all day.. I'm pretty sure this is the Opposite of what this medicine is supposed to do. Anyone else tried stimulants and have a wierd effect from it? or know if it's contraindicated with POTS? My GP is great about trying new things and is wonderful about research and support and all, but he still isn't that knowledgable about this condition and there isn't anyone near me that has even really heard of it..

Hi Sabrina I'm new but went through two pregnancies with POTS, and was refererred to a neonatologist both times because of complications with my first pregnancy. Don't be scared a lot of Dr's refer what turn out to be perfectly normal pregnancies to neonatologists these days just because of the risks associated with rising malpractice insurance rather than the risks of the pregnancy. For me my POTS symptoms go away when I'm pregnant and it lasts for several months after the baby's birth. But going to a Dr. who specialized in complicated births always made me feel reassured that if anything should go wrong they would be alert and able to handle it because that's what they do. I now have 3 healthy kiddo's the youngest will be 11 months on June 22nd.. Hang in there I know it's scary being pregnant with a medical condition, Heck it's scary even without one! But hang in there sometimes pregnancy is a POTS girls best friend

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!