SunsetParadise49

Yeah I think that Physical therapy does help, but with me having EDS I go through fazes of that not working!

My legs often "give out," but I am diagnosed with EDS too. I have hypermobility so that would give me a reason as to why my legs do that! I'd wait to hear from others to see what they have to say! Gwendolyn

Thanks everyone! I'm just a really shy person so I will try and get my guts up to speak up next time I go. Thanks again!!!!!! Gwendolyn

Ever since I was little I got chest pains. I was afraid to tell someone thinking that it would be something serious. So, when I went to have my ECHO in November 2004 I was relieved to find out that my heart is perfectly healthy...everything's the right size and all. What I'm wondering is if having some chest pain is normal with POTS or if I should get my guts up and tell somebody? Maybe this is just a silly question!!! Gwendolyn

Tomorrow I am scheduled to have a Lactose Breath Test...I'm just wondering if any of you have ever had one, or maybe know someone that did. I know it involves drinking something, and probably not anything good...knowing hospitals! Anyway, if someone could give me any help it would be appreciated! Gwendolyn

I was told that you will have it the rest of your life, that it's chronic. Maybe some people are different?!?!

The only thing I could think of to would be the sugar. But gees, my pediactric cardiologist urges me to drink Gatorade! That's really the only thing I can think of like Ernie also said.

Yesterday I had my first GI test done at the hospital. It didn't go as bad as I thought it would. I was scared to death and really did not want to go. When they gave me the oatmeal with the radioactive solution in it I felt sick to the stomach. I just DID NOT want to eat it. Thank goodness the pictures themselves only took one minute to be taken. I have some other tests coming up including drinking barium which I've never heard good things about. The only good thing that will be coming out of me being sick is that tomorrow is my 17th birthday! It means so much to me this year, more then other birthdays I've had. I think the majority of me being so excited is that basically nothing good has come out of the end of 2004 through now...due to me being diagnosed with so many things. Gwendolyn

No, I am not able to go to school. I have a tutor who comes to my house one hour three nights a week...just enough for me to be awake! Right now, my mom is fighting with the school district again so Im not being tutored as of right now. I can't drive until I go one year with out having a episode, black out etc. Honestly, I'm afraid to drive anyway so it's fine with me! lol. Gwendolyn

I went to my GI doctor appointment today, and ahhh he's ordered sooo many tests for me to go through. I'm not even going to tell you what all he ordered because I am still very confused myself. He knew a lot about POTS and such like my pediactric cardiologist said he would, and I'm thankful that he did too! On top of this all, my parents are going through a VERY hard time, and possibly my mom, 11 year old brother and myself are going to be moving out. Last night my parents got in a huge fight and when my mom came back upstairs she was so upset, I've never seen her so upset in my entire life. Please keep my family in your thoughts!

I went to my Pediatric Cardiologist today and was put on a SRRI...I think that's the right name! Anyway, it's called Effexor, for the first two weeks I'm to take 37.5mg then from there on out I'd take 75mg. If the Effexor does not seem to be working he'll put me on another one until we get my genticist blood work results back to see I could give myself shots every week. I'm going to go, I'm pretty tired...I just wanted to fill you all in! Gwendolyn

Hope everything goes well with the Florinef. I was thinking about your post while I was in the shower...I was just thinking that it could depend on the dosage. Like mine is only .1 mg's and for the first week I only took one, then after that first week I was to take 2 . But anyway Good luck on it!!! Gwendolyn

From what I was told by my doctor, it takes a month to start working. I was on it before but didn't think it was working so I got a new medication through just my adult cardio doc. When we found the new guy he said to me that probably by the time I had taken myself off it, it had just began working. Does that help you any? Gwendolyn

On Wednesday I have my first appointment with my ped. GI doctor. I'm a little nervous about it! I'm not really even sure why I am. Have any of you had to go to a GI doctor through having POTS? My ped. cardio is sending me there for two reasons, 1) I've always had heartburn but since the last couple months it has gotten increasingly worse and 2) he's worried about the weight that I lost. I'd appreciate if you kept me in your prayers! Gwendolyn

Hi All Thanks for all of you thoughtful hello's!! I really appreciated them. Thanks so much! Gwendolyn

Emily, Yes my PT does have experiance with POTS! I live in Lancaster, where do you live? I know that there are some other PT's too that my doc gave me incase mine couldn't take me or whatever.

Hi Emily! I played the flute. Thanks for your reply!!!

Hi Everyone, My name is Gwendolyn, I'm turning 17 on September 9. In November of 04', I passed out in my gym class and was sent home from having low blood pressure. My family doctor did his own version of the TTT and told us that I had NCS. My FD ordered a ECHO, and then a TTT at our hospital. It came back positive...plus an increase of water and salt. For the first month or so it worked. Then in December I went down hill. I began loosing weight, (20 pounds in two weeks) I was throwing up basically everything I ate. I was failing most of my classes and the ones I wasn't failing yet, my grades were on the verge of becoming D's. I was extremly tired and by the time I would get home from school I would crash. On top of that I was in marching band which for my school is VERY active and competitive. We finally found a Pediactric Cardiologist who specializes in POTS. He diagnosed me with POTS, and put me back onto Florinef, .1mg 2x's a day. He sent me to a geneticist, a physical therapist, and a GI doctor...all who have are very experianced in POTS!!! My GI doc appt. is coming up this coming Wednesday. I feel A LOT better now from being sent to the physical therapist! I am so lucky to have found him. Hope to hear from some of you!

I have been on it for about three weeks. Florinef takes a month or a little more to start working. You might not realize it's working, but your doctor will notice the little things. Stay on it until your doctor tells you otherwise. Don't be scared of the side effects, my doctor said that it is a very safe drug to use, so be happy! You should be aware of them but just don't get overwhelmed! Good luck!!! Gwendolyn