tracy

Hello all, This is to everyone, but specially Gwendolyn, "Florinef takes a month or a little more to start working." My doctor called the other day and told me to start on florinef, but to only take it a week before my period. She said to start 7 days before, the first 2 days take a tablet a day, then after the 2 days, take a 1/2 tablet for the next 5. If it take a month to start working, is this going to help by just taking it for a week? I have read all the posts, but just wondering if this will help. Any info would be great thanks Tracy

Hello Gwendolyn Sorry I'm alittle late welcoming, hubby got a new computer last night and this is the first time I could get on. Welcome. I am also a newbit, just joined at the beginning of the month, was just diagn. last month with POTS. I was also in marching band and played the flute. I am 29 and live in NE Ohio. Again welcome

WOW! That is great news, congrats on a great doctor/person for taking the time to learn about POTS, wish all the docs would do that.

Great news for you Ernie Happy for your improvment

I was put on Toprol, but it lowered my B/P too much. I am now on Lappressor and Levsin

Chrissy, Sorry about that! Some people are just rude. A little story of my own, I just used the permit the first time the other day. We stopped at Giant Eagle, I had my 3 children, my sister's three children, and my mom with me. There were no spots close, and my legs were really hurting, so I parked. There was also a older women parked next to me. When we got out she glared at me, I just smiled and walked away. Atleast there were no notes on my windshield. I can't stand that just because I have an invisible problem, everyone assumes I shouldn't use that. Good luck in the future. Tracy

Jennifer, Yes, my doctor gave me a script to get a parking permit. I don't use it all the time, (specially if I can find one close without using it), but it makes me feel better just knowing if I have to use it, it is there. Ask your doctor about the script, if you have a chair, then you should have a permit. I am blessed the temps here have went down a few degrees and so much better without the humidity. I do feel bad, my kids are always asking to go out, and it just stinks that I have to stay in AC! Maybe a little later, I can take them out for aliitle. Hope you have a good day Tracy

Thank you Jennifer, Katherine and all:) I am right now taking Lappressor 1/4 tablet twice a day and Levsin twice a day. I eat as much salt as I can take in and drink 99% of the time gatorade or powerade. I also wear compression hose from getting out of the shower upon waking, to the time I lay down to go to bed. I advoid caffine, like pop and eat no chocolate that broke my heart, but if it helps i'll do it. The three day rule sounds good, but as for my legs they have been getting worse for about 2 weeks. I thought it might have been from my cycle, all my pain was really bad for about 4 days, 2 days before it started and then the first two days of it. I thought maybe my leg pain would get better after it, but it has only gotten worse. I do some excercise while laying down with my legs. Not as much as before Pots, but still some. With taking care of the kids 24/7 I get alot with just dailly taking care of them. I do have a call in to the doctor, but of course they haven't called back yet. Big surprise, right?lol I plan on telling them everything once they call back. I'm not sure if I will have to go back in, but hey if it helps I'll do whatever to fell better. Hope you all are having a good day Tracy

GOOD LUCK

Sorry wanted to touch on the other few things you said, yes I have been trying to do some excerise, and also trying to get alot of sleep. I have been trying to do a few other things, but I just seem like getting worse. Trying to keep a positive outlook, but hard when I just get worse Thank you Steph for you encouragment.

Steph, I posted somewhere before, but can't remember where so here goes. I few times before I have had severe chest and back pains to the point of laying in a fetal position and could not move and was gasping for air. The first two times this happened, they told me it was my gallbladder and after having my third child they took my gallbladder out. I have had this same thing happen afterwards, so I am not so sure it was my gallbladder, they did tell me that my gallbladder was filled with stones, so it was good they took it out, but I'm not convinced. This pain I had is something different than that, but I am just having all kinds of things happening these last few days. So will be calling the doctor. Thanks for the replies guys

Well, I will be calling the doctor in about 1/2 hour this morning. My arm still doesn't feel just right. I put in my post about the wheel chair, is I am just starting to feel worse and worse, I have more and different systoms then before I was diang. Probably will have to make another trip to Cleveland, but hopefully something can be done.

I am going to join the ranks of not voting, but putting my two cents in. I didn't vote, because really none of them fit me. I am doing worse now with my legs then before I was diang. Before it was more getting out of breath and my h/r going up, and my b/p being so low. I've been on meds just alittle over a month, my legs now feel like jello and I think I am just getting worse, just yesterday I was telling my husband that I am going to call Dr. Fouad to see if she needs to see me, or can try some other meds. My county fair is coming up, before I just about lived there, but now is dreading it, because it looks like I will be using a wheel chair to get around. It pains me to be getting worse than better. Like I have seen before on this forum, I just want a wonder pill to get my life back. Sorry to be ranting, I feel guilty, because I know some here are in worse shape then me, but looking back I've had this most of my like, but it has hit all time low for me. So after reading my own thoughts, I guess for me it is going to be when going out, unless my meds can get me better.

As I sat down to go on the computer, I had a sinking feeling in my chest. It just felt like the my whole chest inside sank. Now I have a weird feeling in my right arm. Can't type with my right arm. I am starting to feel sick to my stomach. I don't understand. I was just telling Jason(my husband) that tomorrow I'm going to call Dr. Fouad because my legs hurt all the time and I just feel crappy. It doesn't seem like my meds are working anymore. I am getting out of breath and having dizzy spells and I am getting back to where I was before my meds. Just wondering about the chest.

I am so bummed I went out with my parents this weekend, and somewhere my bacelet came off. I checked and no one has turned it in. I wore it all the time. I think I will order two this time, just in case. The bracelet is and was great thank you. When I wore it I had alot of people looking at it. It was really cool.

Thank you Emily

Hello Rachel, I'm 29 and have POTS, I just joined alittle while ago, and it has been great. Welcome

name: Tracy Age: 29 DX: POTS Age at Dx: 28 In July 05, turned 29 on aug. 12 I live in Ellsworth, OH Systoms at worst: severe chest and back pains(Just lay in a fetal position and can't move) gasping for air, leg pains,heart racing, very low B/P. Systoms at best: leg pain, can't stand fast or room starts to spin I only got dian. still on first try of meds, Lappressor and Levsin, compression hose, high salt intake, only drink Gatorade or powerade. I saw Dr Fouad at the Cleveland Clinic

I've called 9-1-1 2 times, once for the chest pains 2years ago, which then it was for gallbladder, and one recently before diag. was on toprol? when b/p went to low, chest pains, shortness of breath, and since b/p so low, my legs gave out when tried to stand. The way I look at it is, that is why it's there for, to help.

Add me to the list too. The heat is terrible for me. I get so extremely hot in such a short period. My problem is when I get that hot, my stomach goes. If I start gettimg hot, I have to find a restroom very quickly. (Sorry, don't mean to get to personal) It seems if I find a restroom, and go (umm,) #2, I feel alot better, not sure why that works. If anyone has an idea, please let me know. I can't stand the heat

Thanks all for your replies. I think I will save up and get one of the vests. The hat and necktie are pretty cool, but the vest would work even better. It would be great to combine all three.lol

Atleast they saw that your hr was all over the place. Hopefully with the beta blockers you will see an improvement. At times, I can't think, just in a fog, but most of the times it will last a few minutes. I am going to be calling my dr. back, I think I need something else or more of what I am on. Good luck

I thought I'd just let you all know, I did receive the hat and neck tie. It is so cool . You just soak in cold water for a few minutes, and it stayed cool for hours. I also like the idea of a hat to keep the sun away too. To Scooby2, I feel for ya with not having AC! I live the summers with my AC on full blast. The freezer packs would look strange, but hey, if it helps, so what!!! That is what I'm learning real quick, if it helps me that is all that matters, it doesn't matter what others think.

Hi Chrissy Welcome

Congrats on 10 years My husband and I will be married 9 years in Oct. In all the years we have been together (11 total and we dated some in high school) I guess I have had POTS, but of course just in the past 2 years has gotten worse, and in the past few months before I got meds, I didn't feel like doing anything, was always out of breath. I thank God everyday for what I do have, and am thankful. It is hard to stay positive, but when I get down, I just look at what I have, in three beautiful children and a great husband. I know it's hard, but it also could be worse. And to madwife, I have to admire you for what you do. There is someone out there for you.