Valiant Effort

I to have been turned down by Vanderbilt. Please don't think that it is you or that you don't have a problem. The real reason is they only have a certain amount of grants. You have to meet all the protocall or they cant let you in the program. One other place tp try is National intitute ot health or NIH of BETHSDA MARYLAND. I hope this information helps. The main thing to remember is that your are not alone. There are people out there who believe you and know what you are going through.

I live in central Fl between Daytona and Orlando. I have a wonderful nuerologist that has help me. He has done more for me than Shands or Mayo and I can see him or talk almost dailey to his nurses. My PC is wonderful I can call him day or night and he is always there to help me. I dont know where you live if this is even close .

If it helps any I have had just about everyone of your systems. The one I hate the most is when my mouth starts to quiver and I can,t control it.

We are the opposite of the north, you are cold most of the year we are hot almost all year. There were many Christmas' where you wore shorts. THe one thing that is bad is summer has just started and the real hot months have'nt even got here yet. You aked me where I am, I am about 30 miles from Daytona Bch and 30 miles away from Orlando. My doctor says I can't go out at all during the day but after sun down I'm ok if it is not to heavey out. I also have a little one she is 3 yrs old and I have an eleven yr old to. We play outside after 5pm. I hope you get to enjoy most of your vaction anyways.

THe summer heat is why I am as symtomatic as I am. I am not to go out doors at all when it is hot out. I live in Fl so that is next to impossible. I cannot breath when I am out in the hot weather, My heart starts beating so fast I cannot stand it. All I can do is smypothize with you and tell you I know how you feel.

First I just want to say thank you for responding to my call. I was so happy to find out I was not alone, and people really understood what I am going through. I wanted to respond to you earlier but the night that I sent the post I was put in the hospital and I did not get out until Monday night. The next day I had to get a pic-line put in. When I finally tried to respond I found out I did not know how to get back on line with you. Out of alot of guess work I finally got it I just hope I can keep it. Many of you ask if I was taken 11 florinef a day and I was, unfortuntly it was not a type error. My regement now is 2 liters of saline every other day with 10 meqs of potassium, 2 proamitine a day, 1 Zoloft, 3, 1mg of xanax 1 potassium by mouth, 1mag. They can not controll my heart rate and their thinking about putting a pacemaker in. When I take Beta-Blokers it drops my heart rate to 40 or lower and I can't function so they want to put a pace maker in and set it at 60-65 and then put me on beta-blokers. The problem is their not sure what my bp will do. please respond if you ever heard of such a thing. Again thank you so much for telling me that I am not a whimp I literly cried when my husband read the post back to me.

I have been reading your forum for about a week now. I find that I have alot in common with most of you. What I find amazing is that when asked if you have ever been treated at the hospital for your POTS some of you say no. I have been in and out of the hospital and the ER so much that the nurses and doctors know me by name. I was dx with POTS almost two years ago but they know where mine came from. I had two car accidents back to back and my vertible artery(thats not spelled right) in my neck was pinched which they think gave me a brain stem stroke which gave me POTS. In the last year I have been on 33 pills a day, 11 florinef, 11potassim, 3proamatine 3x a day 1/2xanax 3xdailey. I had a pic line inserted into my arm and started on 1 bag of fluid 2x a wk with 20 meq of potassium in each bag. by 6-7 months later I was up to 8-9 bags of fluid a wk with 60 meq of potassium in eachbag. I finally came to the conclussion that it was not going to cure me and it might kill me so took myself off all meds. Doc. took me off all bags I did ok for about 2 months but I live in Fl and the weather is hot and very heavy so about 2weeks all symtoms came back I had a short stay in the hospital to bring up my fluid and my potassium level. I have done good for about a wk now I am having symtoms like some is sitting on my chest(which ususlly means my potassium is low) my heart rate keeps going up and my bp keeps falling. The worst is how weak I get. I have never fainted (but have come very close) and I feel like someone is sitting on my chest with every exertion I make. Please don't think I am a rambling idiot I just don't have anyone that understands what I am going through. They think if I just lay down and stay there that eveything will go away IT DOES not until I get fluids. I am just wondering if I am just a whimp. Thanks for listening.