hollie

I get the same thing now & then. Not so bad though - only a few minutes worth. It's freaky! I've come to expect it when I stand - so it's strange when I'm laying still. It seems to be even more intense laying than when I stand though!?!? Not sure why or what's going on. I'm glad to hear that I'm not the only one. Not that I'm happy you have it too!!! I just close my eyes, and breathe deep and slowly lift my legs in the air. Seems to help - but like I said, it's not as intense as yours. I would evaluate your meds - you must be reacting to them. Maybe it's just the heat? But I get mine year round. So basically - I have no clue... I'd see a doc.

Hollie

I have not settled on a dr. Everyone I've seen has no clue what is going on. I found one that I LOVED, but she is has moved to another clinic far away. I'm trying another a week from now, hoping it all goes well! I will NOT settle for someone who will not take me serious and is of no help. It's taken me six months to get into this new dr. and am hoping he will help. If not, it's (un)happy hunting again for another.

Hollie

I'm sorry you had to go through that! It's too bad that some of the "helpers" out there are not so helpful! Unfortunately, this happens more often than it should. Keep your head up, you'll find someone better!

Hollie

I do know he had two books. I found them on Amazon, but they are in the $100 range so I haven't gotten them yet.

Hollie

Thanks for the info. I'm also wondering when the documentary will be done!

Hollie

Thanks for all the help! I will try the one in the cities. It's only about an hour from me - not bad.

Boy, I love this network! It's so easy to help each other out!

Hollie

Keep fighting! I believe you too! I don't know how many times I was told I had an anxiety disorder before someone actually took me seriously.

You would think that since your TTT came out with a POTS result, they would all be on the same page. I honestly think some drs. think it's a made up disease. I'm here to tell you - IT'S NOT! I live with it every day and I think if those same drs. had to live with it for even one day, they would be much more sympathetic!!

Hang in there and don't take their ignorence personally, just find someone else!!

Hollie

I agree! Sounds like POTS. I got sick of tests and dr. all coming out negative. I went searching on the net like you and came across POTS info. I pushed to have a TTT and finally got some answers. I have every symptom you explained to one extent or another. I was only dx in Feb. and haven't quite found anything that is an easy answer to get rid of the symptoms. (I don't think there is one.) But at least I know what it is and can go from there!

Good luck and don't give up on the drs. Just go to another one if you don't get the help you need. I'm actually in the prossess of finding another too!

Hollie

That's my issue. The dr. I've felt most comfortable with is leaving. I didn't know it until Tuesday this week, but she is gone at the end of the week. I don't even know who to talk to anymore about even trying a different BB. I just feel lost!

Hollie

I'm right there with you! I have my own business and am having a hard time accepting that I need to slow down. I feel like the business I've worked eight years to build is going to go up in smoke because I can't do it any more. Everyone around me just expects me to just pop a pill and I'll feel better! What a joke that is! I think people need to live one day in our shoes to know what it's really like.

I'm just trying to know my limits - and not exceed them! It's hard, but I know if I over do it, I'll be shot for the rest of the week! Of course, I have my times when I still do. Like you said - you have bills to pay.

I like how it's explained at www.butyoudontlooksick.com - the spoon theory. I like the analogy. If you haven't read that, take a look. Maybe even print it off for your boss so he/she knows exactly what you're going through. Maybe they can help you cut hours or something.

Sorry I'm not much help either, but I do want you to know that you're not alone!

Hollie

Hi all. I've been having issues, like a lot of others out there, finding a Dr. who understands POTS and not blows me off like I'm crazy and over-dramatic. I found an internal med. dr. that I thought was great, but now she is leaving the area and won't even see me again. I've only seen her once (about 2 months ago), but she told me to come back if the meds I'm on didn't help. I've seen my primary dr., two OI dr., a neurologist, and cardiologist at Mayo in Rochester, MN and they're not too compassionate and just blow me off and say drink more... eat more salt... etc. (Everything I already know.) I don't think I could possibly drink any more - I'll float away!!! They all act like it's no big deal. What do they know - they don't live with it all day, every day!?!?

Anyway... I'm wondering if anyone out there has found a dr. in the area that they are impressed with. I think I need to try a different med. I've been trying a beta blocker for about 2 months, but having strange affects. I was doing well, but now I can see myself get worse every day again! I just need someone who will take me seriously! Any suggestions?

Thanks!

Hollie

I'm just gettting started on a beta blocker. I've taken it for about a month and not seeing a huge improvement. I'm actually noticing my heart rate not racing (which it IS supposed to help with), but I'm also noticing that it's sometimes slower than it should be . I'll take my pulse and it seems like it takes forever between beats. Sometimes it's to the point of slight chest pain. Has anyone else experienced this? I'm not sure it's the right drug for me, but I want to know how others feel when on it.

Thanks for the help!!

Hi all!

I just got dx with POTS in Feb. I have a 2 daughters - 5 and 3 yrs. Since my dx, I'm lucky enough to be at home most of the time. But my daughters are sometimes more tiring than actually working. You all know - one day you're fine - the next stinks! Today stinks! Like many times in the last couple weeks, I walked my girls 4 blocks to the park. Once we got there, I wanted to collapse (as usual)! Of course, then they both want pushes on the swings, help climbing, etc. I feel AWEFULL when I have to say I can't. They don't understand and keep asking for help. No one understands - not even me! Other parents look at me like "Get off your butt and help your kids!" It's only the beging of the summer, and I look ahead to the rest of the summer. I can't help but think of how much more the girls will want to do outside the nicer the weather gets. I can't keep up with them and I feel like I'm taking their fun away.

I'm SO tired of the question "How are you feeling?" I'm SO tired of trying to explain myself and the disorder. When someone asks, I know they're just concerned, but I don't even want to hear it any more. Everyone asks, "Well, isn't there a medication you can take?" I don't know how to explain that it's not that simple. I'm not sure my husband even gets it.

GRRRRR!! I just needed to vent!!! I'm glad I discovered this site! It's the ONLY place I feel understood!!! Any advice?

I just had my TTT about 6 weeks ago. I wasn't anxious, but extremely excited - if that makes sense?!?! I had taken SO many tests and seen SO many doctors with a response of "You're fine" SO many times. I knew this test WOULD show that there is something wrong with me and they'll finally believe me!! So if it takes me passing out on a table n front of two techies to find a dx, fine by me! It's easy and painless. You'll do fine, good luck!

Hollie

Had POTS for years - dx finally in Feb.

I'm lucky enough not to have to be wheelchair bound. I do know more than one dr. has told me the more do phisical activity (even just walking), the better my body will handle the "little" things. For instance, when I was pregnant, I had difficulties and had to be on bed rest off and on for three months thru two pregnancies. After not getting up out of bed, walking around, going to work... I did get more tired, faster HR, etc. much quicker and more often. I now try to walk every day, even if it's only down to the end of my block and back. I have noticed improvement already.

Hollie

Hi - I just got dx in Feb. Had it for years... finally getting answers! I actully started in Feb on Florinef. It only took a couple days and I felt better - pretty much normal. But then I slowly started getting worse again. I never returned to the worst point, but I wasn't satisfied with it either. I then saw a specialist and asked him what's next. He told me florinef is actually for that purpose. Meaning... it's supposed to bring you up out of a funk quickly, but is not supposed to be for long term purposes. He said it loses it's effect after while and you level off. I don't know if this helps you, but it helped me deside what the next step was.

Hollie