delphicdragon

I was wondering if anyone else on this forum was unable to tolerate alcohol. (It seems so many of my quirks are shared on this forum, that I figured I might as well ask about this one.) I love the taste of red wine and I know it's good for me but I can only tolerate maybe a half a glass. I start to get a weird headache and kinda "buzzed" and I need to drink a lot of water. I know alcohol dehydrates you and that may be part of the problem but it's a half a glass of wine. I have the same problem with champagne. Haven't really tried hard liquor, other than a sip, and it did the same thing. Anyone else share this quirk? Sara

I'm working on my master's right now, so I know all about research papers . Some good sites to go to for free scientific papers include highwire.stanford.edu and scholar.google.com. Never pay for a paper! Also, when searching for POTS, I tend to include syndrome in the search bar so I don't get a lot of sites about gardening... A great article can be found at http://circ.ahajournals.org/cgi/reprint/111/22/2997. It gives an overview. Also, I've found that a Pathophysiology book can be handy in trying to figure out exactly where the nervous system or the circulatory system went wrong. Best of luck! Sara

Not sure if this is the same thing, but I have to wear my pants big - enough so I can fit a fist in between my skin and the material. If I don't I get the worst stomach aches and even diarrhea from too tight pants. Thought it was just one of my quirks. I can wear tight shirts - no problem. Maybe my intestines are just extra sensitive. Sara

Angela- I tried Florinef a while back and I have a few pills to take around the time of my menstrual cycle because my BP drops out around then. I would recommend starting off at a 1/4 tablet (they are really small- so good luck cutting it up ) My hands swell up really bad on it and therefore, I can't take it. When I did take it, it was a miracle drug, I had energy (and a sex drive). I'd give it a shot, with a really low dose at first to see if you can tolerate it. Sara

Hello Julia - I'm also 23 and was just diagnosed with POTS. Good luck in your studies at the medical college, I hope you get some answers!! I just wanted to comment on your stress test. I had one a couple years ago and my heart rate went up to 200 within the first few minutes and I had severe chest pain. No one was measuring my blood pressure, but I'm sure it was dropping as I was feeling so awful. Surprisingly no one stopped the stress test. They said that I just wasn't "fit" enough and needed to exercise more because my heart rate shot up so fast and didn't go down. I guess I'm going to have to go back and have another one , what fun... Talk to the disability services at where-ever you are going. I had a meeting with them and explained my POTS and they are quite helpful in getting me the assistance I need. Especially if you're going to a medical college, they might know something about it. I'm also going to be going to a medical college in August and just knowing that I can walk across campus and get the help I need is a load off my mind. I don't know where you're from, but in CT, I've found that Dr. Tendler is great! She's a cardiologist who specializes in low blood pressure. Sara

Thanks for the good wishes, Nadine. I've all ready asked for accommodations with disability services and they have been wonderful. The reason why I am studying Bone and Collagen disorders is because of my Ehlers-Danlos, I want to know what mutation those with Hypermobility Type EDS have and if anything can be done to help those of us with it (There's no good mouse disease model as of yet). Sara

Hi Everybody- I'm so happy that I found this forum. Finally, I'm realizing that there are other people out there with the same peculiar symptoms that I have. First, a little bit about myself. I'm a graduate student, about to start my PhD in BioMedical Science focusing on Bone and Collagen Biology. I have EDS, diagnosed in 2005, after a roommate with the condition urged me to go to a geneticist (how random is that!) I'm a little worried about starting the PhD as it's a lot of work- but I'm hoping I can handle it. I was diagnosed with POTS in January 2007 and have been trying to research the condition as much as I can. Unfortunately, I can't take a lot of the medications that are supposed to help (Florinef makes me blow up like a balloon ). It's good to finally have a diagnosis. I was having what appeared to be seizures for about 3 years before someone called the EMTs and they couldn't get a supine blood pressure. A group of neurologists realized that there was something wrong with me because my standing heart rate was SO fast. (I've gotten it up over 200 on occasion) About a year of testing later, I finally had a diagnosis. Thanks for being there to provide answers when the doctors all seem clueless. Sara