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I was diagnosed with EDS a few weeks ago too. It's nice to know the cause of my POTs but it stinks when you realize EDS is lifelong, my geneticist told me it's nothing to be afraid of. If anything knowing you have EDS can give you power. Many people aren't diagnosed young and then their bodies fall apart when they are old. Knowing now that you have it you be much more proactive in slowing any progression that may come.

That's a good place to start and increase it as you can! My old dr told me to rest & wait till I feel better. I NEVER felt better. I have a new dr now & he says laying around all the time is one of the worst things you can do, that's when deconditioning can take over. Now we are trying to undue that. Now because of just resting all the time Im feeling super guilty but I didn't know.

My dr did a metabolic stress test and from that I was told go keep within 120-130. Every once in a while I have to repeat the stress test to check up & readjust according to results.

Wow

Peace, have you tried doing 5 mins, resting some, & then 5 mins again? That's what my exercise physiologist is have me do

Thanks. So I guess I'm not the only one

Hi JenJen, Honestly there is no concrete answer. There ARE people who get better with the correct treatment and lifestyle changes. There are also people who don't. One of the biggest things I understanding the cause of your POTS. Do you know I'd your dr has tried to find out why you have POTS? If there is an underlying cause, treating that cause will lead to improvement of POTS you. If your POTS is idiopathic, meaning they don't know where it came from, it tends to improve over time. But it takes hard work and patience

Even if you can't afford a session or two don't worry. The heart math people have free tutorials

Party in the USA by Miley Cyrus Raise Your Glass by Pink

I asked about someone going with you because it's a lot to proccess. Maybe (if you're able) you could bring a notebook & pen or even a tape recorder to jot things down. It goes quickly & my first appointment is a real blur Yes, that's the problem she's talking about.I did only some of the program. This is what I posted on ashletons post

Will keep praying

I'm in DFW & went there. Here's my post about the science behind it: As for the center itself, the people around the area are divided. From the link above you'll see there IS definite science behind it! Some people have challenges with - going to so many appointments & so often (for locals it's 2-3 a week for 1 1/2-2 hrs indefinitely) - some don't like her. - it's expensive & they only take a few insurances As for further testing, I've only been to Dr S and he does TONS of tests. I don't know how in depth Dr Levine is

I don't think there is anything specific to prepare for. A couple things, it's going to EXHAUSTING. He does a lot of test. He did around 18 on me. Sometimes the wait is long, he really likes to give due time to each patient. But they want you to be as comfy as possible, there's water in the waiting room you can ask for a kindle if you like too. Dr S doesn't perform the testing, he has other techs & dr's do that. Lastly, most of the people are foreign and have thick accents. You have to listen carefully at times. Everyone has always been very nice.

Off the top of my head I can't think of any extra expenses. You'll have someone going with you right? I'll see if I can think of any tips

Do you feel better immediately after?? For me, I have to rest. I feel like I'm about to drop. My muscles feel soo weak. But an hour or two after doing nothing I feel somewhat better for exercising but if I push too hard I feel worse for the rest of the day. Does anyone else have that problem, I've been doing this for 3 months & still feel this deep muscle weakness & pain?

I'm like that too. It's like a tease, I start to see this little light of feeling better & then bam, nope. It's frustrating

I don't know. I know I do not have a chiairi My neck does hurt a lot though. When I tilt my head back I feel like my head is going to fall off or my neck is going to crack. I'm not sure what it means?

Thanks for posting the link dizzyde! I feel like the did an alright job. It could've been better and it could've been worse. I don't think the point was to explore POTS deeply, they'd need at least an hour on 20/20 to do that. I'm very thankful they didn't call in the Grinch syndrome.... A lot of people from FB wrote messages to ANC asking them to not do that.

I can't imagine having to work

I wonder the same thing. No matter how much he & his staff say it's humor calling it "grinch syndrome" it's offensive to the people he's trying to help. Ignore our feelings shows insensitivity. Plus, the general public doesnt think of a small heart when they hear grinch, they think of a mean person. It only furthers the struggles we have getting others to understand

There is a POTS group on FB and they are saying tomorrow nights segment is with Dr Levine and being refered to as Grinch syndrome I also saw this blog http://potsgrrl.blogspot.com/2012/02/action-alert-tell-abc-news-not-to.html?m=1

Potsyturvy- they showed a tilt table? I must not have been looking then. Tomorrow is the astronaut thing....I hope they don't make it look like it's an easy condition to live with.

Have you ever tried nutritional yeast? It's high in all b-vitamins or at least most of them.

Yeah, please show your dr. I too thought it was wierd he upped the florinef, but I also thought what do it know? Ive been on florinef for like 13 years. And one time I had my potassium drop real low. I don't remember what happen but it was a bad episode, i know my body felt like lead, and my mom called the ambulance. In the ER they kept saying florinef couldn't cause low potassium, that I was bulimic. Finally after a fight they gave me IV potassium & I did get better. I just don't understand why dr's ignore the florinef- potassium thing. Low potassium is dangerous Continued prayers

I don't know that we can cause it. But we do have some physiological control in calming some of the episodes. My dr strongly believes in it. have you seen my post on the supporting research for biofeedback: