tracy

Hi Rita, I am so sorry to hear about that. I just can't stand some doctors. I hope the new doctor works better for you. Good luck!

I was just wondering if anyone on here as purchased the cool vest? I went on the website, but for now a little out of my price range. I wondered if and how good they worked. Thought if they worked good, maybe invest in them soon. My mother-in-law did find a baseball cap that work more or less in the same way as the vest, but of course a lot cheaper. There is also a neck tie (but not like a guy's neck tie). It's more like the girls used to wear (I think) in the 50's. If anyone is interested I can give the catalog info. I should be getting mine in a few days and I can let you know if they work. My county fair is coming up, and I just about live there, and needed some help for the heat. So, hopefully and hat and tie will work well.

Jennifer, I had that test done last month with Dr. Fouad. With me, I think it took about an hour. After taking some blood, they injected some dye and I had to lay still to have the pictures taken. They also injected some radiation, it made my arm vibrate, really strange, but it didn't hurt. After doing that they made me sit up with my legs extended, then after that they dropped my legs, but that didn't last long, because I got short of breath and chest pains. When they put my legs back up, it wasn't to bad. Then they had me lie back down and stayed there for alittle while. THen it was over. All in all it wasn't bad. As for doing it, I would, but also make a visit to discuss the results. I just did it over the phone, and now looking back a visit would have been better to do it face to face. Good luck

Amy Well I'm from Ellsworth, lived here my whole life. Went to Western Reserve. Where in Canfield, and did you go to Canfield school? I also went the the Voc.

It's not my first, but a few days before my period, I get soooooooooo sick, some times I throw up, sometimes it lasts all day for 2 or 3 days. It seems if I just throw up it gets better.

Hi, No, I have never been told that, but I was told earlier that my heart skips beats, but as I had the testing done recently, they told me that it doesn't skips beats, just beats to fast.

Mine at sitting was usually around 70 to 80, but even just sitting my heart has started racing and goes up to 170. Once I stand it usually goes to around 160 and has gone to 180's. Since on my meds, resting has stayed around 70, but it doesn't start racing quite as much as it used to.

Amy I know what you mean, ever since I found this, I have been feeling better, since I know I'm not alone. It's weird when I tell what I have, and everyone just looks at you because they don't know anything about POTS. I keep telling myself I have to stay positive for myself and specialy my kids.

So far my meds are taken at 5 a.m, 7 a.m. and 2 p.m. I start my day early, and most times it ends around 9 or 10 p.m. I also have to take my B/P twice, once I get up in the morning and in the evening.

I hope you get feeling better. I can understand with ya, because even though I suspect I've had POTS my whole life, it has gotten worse over the past two years. As to learn to slow down I know its hard because I have three children (6,5and2). I am just learning to slow down myself, just got diagnoised in July and now is on meds. Had been feeling better, then over did it, and its taking alot more time to get back where I had been. I am learning so maybe we can learn together. I know when I start getting out of breath or that my legs start really hurting, I make myself sit down for a while. My children don't quite get why mom has to sit for awhile, but hopefully they will get better understanding, as I get better to limit myself

Good luck I'll keep my fingers crossed for you.

I take Lappressor and Levsin twice a day. Drink gatorade and eat alot of salt.(for my blood pressure, very low) I also wear compression hose. Was just diagnosied in July. Not sure if I need anything else. I feel better, but I wish I could feel atleast alittle better then I do now.

Hi Jennifer, Well I'm also from Ohio, alittle outside of Youngstown. I also was just up at the Cleveland Clinic and saw Dr. Fouad. As for the testing, it was great, and she listened well too, but as for after her telling me it was pots, she did put me on Lapressor and Levsin, but that is all. I have left a few messages to ask a couple of questions about my B/P. They didn't return my calls for days. I was upset. My heart at rest is around 90, up moving around it ranges from 130 to 180. For me, I listen more to my body about how I feel, then my heart rate. With having three children, (6,5 and 2) I am usally always running around. As for systoms for me, I get out of breath really easy, and the heat really makes me tired, and I get very hot to the point I almost pass out. I don't have alot of the systoms that others talk about, but I was just diagnosied in July. I hope things get better for you. Tracy

Thank you for the work done to get more bracelets. I just ordered mine, and can't wait to get it, (but don't over do it, to get it out!). Thank you for having them available. I'll wear mine all the time.

I am on Levsin and Lapressor. They told me the Levsin for me is to help raise my BP, but mostly to relax my muscles when my heart starts beating to fast. So far, so good for me. Hope it works for you.

I'm sorry about the way you feel. I was just finally diagnosed in the beginning of July. The meds they put me on, wearing the support hose and cutting out the pop and chocolate made a world of difference. Then I over did it because I felt so good. Starting eating a few candies, thinking a few won't hurt. I learned the hard way. I was down for about 2 days of feeling just crappy. Couldn't do a thing without getting out of breath. Taking care of my 3 kids just about do me in, but as I am learning, you have to take it easy even on the good days. Hope you are feeling better.

Well, I have seen Fouad and Dr. Hammer. I have never heard of him. Let us know when you have seen him, and what he is like.

This is all new (as a dignosis) to me. I have lived all my life with this, but just recently put a name to it. I may have missed it, but what is EDS? Sorry, just wondering.

Thank you very much for fixing my boo boo. Thank you for the warm welcome. Reading these posts are just like looking at my own life. I am so glad I found this. Thank you all.

As for me, I was seen by a few doctors in Youngstown, OH (near where I live) and they told me I needed surgury. I then went to the Cleveland Clinic and saw, Dr. Hammer. He then passed me to see Dr. Fouad. The testing (tilt, dye testing) was done quickly. As for follow-up care, I haven't had any yet. Hopefully I have a better time, (sorry about that). They put me on Loppressor and Levsin. I hope this helps me and we will soon see.

sorry about that, hit the wrong button. Just getting used to being on a forum. Thank you for the welcome. It is so great to find this.

good morning, I am so glad I found this forum. My name is Tracy and I have been diagnosed with POTS. I have had problems most of my life, and now just found out it is POTS. I can't believe how many others have this. I have been skimming a few of the posts, and it is just unbelievable to me. When I tell that I have POTS, people just look at me. I took me countless doctors and testing to finally figure this out. One doctor was just about to do surgury, after talking to the doctor who finally told me it is POTS, she also told me the surgury, would have really been bad for me. I am so glad (I'm sorry that we all have this) there are others that now I can talk to.