tracy

keep going, good luck.

I voted "still trying to find out". We believe that I've had it my whole life, but I would like to know where it came from, if in fact I was born with it.

Thank you all! Steph, I will read up when I get a few extra minutes. My son is really small, but as I grew up I was never on the growth chart, short and skinny. I am now only 5'3and 1/4". Yes have to throw in that 1/4.lol. Seriously though I am concerned and will update when I have talked or seen his heart doctor. Yes he is flexable, so I will question about that. When he does complain about his legs, I hold them up and massage his legs, he says that when i do that, that they do feel better. I'll keep in touch thank you guys so much, everyone is so great on here.

Thanks, I will check those sites out.

Welcome I am sorry that you are going through all of that. I am glad you finally have a diangosis. I am sorry about your family, these illnesses(?) affectes all around us, and some don't deal as well as others. I am glad you found this forum and good luck.

Sunfish, Well actually you could have talked for me, because you are right. Dr Fouad, "advised" me not to drink to much water due to the fact of "washing" out to much of what I need, and to intake as much of powerade or gatorade as I could for the electrolytes. Along with I am to not have any caffeine. Sorry it took me so long to post, was at the fair, then down and out for a few days, just getting back in the swing of things.

Thank you, I am trying to keep my sanity I will check up on Ehlers Danlos. Thank you. Hopefully the doctor will be back in tom, and will see him. I am not sure if she even knows about POTS, or if she will have to send me to someone else. Waiting for answers. Tracy I just wanted to add that again, THIS IS A GREAT PLACE TO BE!!!

AJKDK, I hope all goes well for you, but even if they don't come through with the insurance, they are other possiblities. I was in a tight spot with insurance coverage, due to my husband just getting back to work and one insurance dropping our coverage, and the other wouldn't be picked up until he had enough hours in, and it was in the middle of all my testing. The cleveland clinic helped me out greatly. I'm not sure on all your story, and how your finances are, but don't count out getting help if your insurance denies it. You can send me a p.m if you want to talk more about it.

Before I was diangosed with POTS, I had my gall bladder removed. I didn't know I had pots, so they didn't do anything extra for me. After surgery, I was only to be recovery a little bit, well needless to say, I was in most of the day. They had to put me back on oxygen, because they couldn't wake me up. Finally after waking, I was very slugish for quite a bit.

Jennifer, My B/P is usually very low, before any meds, it was usually in the low 90'2 over low 60's and a few times it was lower than that. There was a joke going around my doctors office to see if "I was alive today" when they toke my B/P. My B/P is now usually low 100's/high 90's over 60 to 70's. They never really said that my B/P was ever "to Low", but I can understand your disstress. When I can feel mine to low, they have told me to go eat something very salty and that for me along with laying down and putting my feet up helped. Hope this helped and hope you are feeling better by now. tracy

Hi all, A couple of years ago my son was diangosed with a heart mumur and also a couple of his veins around or in his heart are what they called perforated. He has a yearly check up every April. With the fact he had only gained a couple of pounds and growed a few inches they didn't do an ultra sound on his heart this year, the Doctor said that we would do the ultra sounds every other year. The doctor said for as small as he is (5years, and 32 pounds) that these problems should not bother him, and has put no limits on the things he does. For a while now he has complained about his legs hurting. I just thought it was growing pains. With now that I have been diagnosed with POTS, I am concerned for him. The past week when we were at the fair, he usually rode in the stroller, I would ask about him getting out to look at things, but he usually just stay in. A couple of times when he would get out and walk any amount, he said he would get tired, his legs hurt, and he would get in the stroller and put in feet up on the canapy over the front seat. At first without thinking, I told him to get his feet down, then he replied, "but mommy it makes my legs feel better". The light bulb went on and I replied, "then keep them up." I called his heart doctor, but she has been on vacation. I tried again, and they said she would back in tommorrow, to call then. So of course I plan to. I guess I'm just wondering if in fact they could diangose a child of 5. I have been keeping a close eye on him. When he plays, he seems he gets winded easily, and he just lays down, and he will get better. I guess the first thing is check his heart to make sure it is still ok, or as ok as it was, but I am concered that if or can I pass it onto him. Sorry if this sort of question has been brought up. Just worried for him and hopefully the doctor can find something out. I pushed myself a little to much at the fair, got sick, and now have broncittis(?), just what I need, but now watching him even more closely, stressing about that. Sorry about rambling, just concered. Any input would be greatly accepted. Worried mother, Tracy

Opus, Happy to hear you are ok, been praying for all that was affected down south. Congrats on your new job, hope all goes well for ya. It should be fun, to be a "boss". Good Luck Tracy

ChadK, I have POTS, and was advised not to drink alot of water, but to drink plenty of gatorade, and or Powerade. I was also told not to drink any kind of pop (even caffeine free) or anything besides gatorade and powerade and some water. You need to keep track of what types of things you either eat or drink that don't make you feel well, and stay away from them.

I have already posted once, but this past few days I was at our county fair. I use my parking permit since most of the time to park, it is a long way away. I have a few strange looks, but for the most part these past few days, I am not moving as good as I used to. My pet peeve is when people have them for their parents, but use them for themselves so they don't have to park and walk. At the fair I saw someone I knew getting out of their vehicle that was parked in the handicap spot, needless to say, their parent wasn't with them. I can say I never even thought of using the parking spots before, but now I really am concered about the parking.

Nina, I hope you start feeling better soon.

Hello Pete, Welcome

Gayla, A little late in chiming in, but good luck, I hope you can get it settled quickly without to much more trouble. Keep on pushing! Tracy

Linda, Just to let you know, till the insurance kicks in and you get your wheelchair, if you need one in the mean time try your local VFW hall(If there is one around you). Our VFW hall locally lends out medical equiment such as wheel chairs, walkers, and such. I have borrowed one to go to our local fair. Just a suggestion. Hope it will help Tracy

Jan, You and Jeff are in my thoughts and prayers. I hope things keep getting better. Good luck in the next three rounds.

Pooh, and to all the family and friends of the affected areas, you are all in my thoughts and prayers.

I just wanted to say "WOW", what a great story, of course sorry your daughter had to go through all that, and I hope she is feeling better. That was such a great paramedic, there are just not many understanding people out there, (I've dealt with some paramedic that aren't that helpful) Again I'm glad that you guys got the help.

Poohbear, Yes you understood me correctly, the Dr. is putting me on it for a week before my period. She said about retaining salt, and something about it helping with making my veins bigger(?) to get my blood flow easier while my period. I am not real sure though. I guess I'll try it for a month or so and see if it does help. Right now, I'd try just about anything. As in for earlier posts, it was said about the Cleveland Clinic as great for diangosed, but it wasn't to good for followup. Well, I agree, it did take them a couple of days to get back with me, and while I'm on the phone with them, it seems to me, like they act like I am wasting their time. It is always a rush on the phone. Yes, it was terrible feeling, but also my right arm, still does not feel just right, but they didn't seem to concerned about that. I guess if it doesn't get any better, then when I take my son to see the doctor(family) I will ask him about it. hope everyone is having a good day

Hi Rnj-sorry it took a while to post, but I just wanted to welcome to this site. I am sorry for what you've been going through. I was just diagnosed in July with the help of the tilt test. Good luck and hope you are feeling better.

Katherine, I did get to my doctor( or really the nurse), she didn't have much to say about the sinking feeling. She did call in a rx for florinf(?spelling) about how my legs were feeling around my menstrul cycle, but they only put me on the med for 7 days, right before it starts. I am to take 1 tablet for the first 2 days, then 1/2 tablet for the 5 days before it starts. I was disappointed in lack of responce about the chest pains, but we will see how next month goes. Let me know if and what your doctor says please. Hope you are feeling better. And to 12StringANSGuitar, let me know how you are feeling and what you discover when you have one again. Hopefully you don't have another. Hope you all are feeling good today Tracy

Thank you Gwendolyn, Yes and no, I guess my doctor would know if that would help me, but it makes me wonder if just being on it for the 7 days will do anything. Thank you for replying.