roxie

You could always try jergans tanning lotion. I've used it many times without any streaks of problems. I'm very pale and it gives me a "healthier" look

I'm doing biofeedback at home! It's a nice tool and especially nice that's it's not a medicine. I personally haven't had as dramatic response & recovery to the program but I am still continuing to use it. It helps relieve some headaches and it can relax and center myself and it's relieved some mild pain. From what I've seen either ppl take to it quickly and do well or it just helps somewhat. I dont think it's a blanket fix BUT it DOES have the ability to help and makes symptoms more bearable.

I know, I deal with fear of meds too. I'm REALLY dealing with it right now & wondered if i was the only one. Usually I am slow & low. My new dr has pushed me a little more and after the initial bad days I've done ok but he wants me on Midodrine. I previously had a bad experience so this time I'm afraid. I kelp struggling with do I or don't I retry it? I have an appointment this week so we'll see where that goes. My thoughts on it change daily. Like today I'm saying is fear worth my body not getting stronger? Tomorrow I'll probably say I can get stronger without it.....I just don't know? You aren't alone in this one!

Id like to know how d-ribose works for you? Rama. My dr mentioned it to me last week. He had me try carnitine but for some reason it made my heart beat faster, so I stopped it :/

Great! Definitely keep us posted!

Lol! That's real funny

Thanks for telling us how it went for you! Are you going to continue at home?

http://www.mayoclinic.com/health/biofeedback/MY01072

I'm really glad it has helped you, daddysgirl! I didn't complete the program for a number of different reasons, but I still believe that biofeedback has the ability to help I did this thread about it It is something you have to do consistently to see it's benefits. I'm working on a home program now. For me, at least, I know everyone is different, I need more than biofeedback. Im still working on exercise and with my main dr to find the right combination of medications.

How's your bp doing today, puppylove? My dr wants me to re-try Midodrine. Last time i stopped bc of hbp and it's exactly why I'm apprehensive of going on if again. You guys think that sometimes it can spike & settle on it's own?

Thanks for posting! I've wondered a lot about hyperadregernic POTS & MCAD and this the best explanation I've heard! I do hope they find more info SOON

I think I've read that you can do that. Thankful- how often do you have to take your bp on midodrine? My new dr wants me to retry it. My first go round my bp went up and having to check my bp so often made me seem to worry about it more :/

I've gone through this at times. Have you ever thought of trying a new hobby? It'll engage your mind and a different way and maybe that'll help distract you more

Rest up, Marti! I'm glad you're getting some answers. You know, my TTT results there were a little bit better than my previous ones, as well. Dr s looks at it as an improvement. I feel like to you have to consider the variables- i was on ALL my meds, it was in the afternoon, and for some reason I've felt like my legs were extra tense during it. I think you made a good decision skipping the nutritionist. He is very knowledgable but throws a lot of info at you. It made my head spin. Sue, I know what you mean about Dr S. I've been seeing him at least once a month since last fall. There are times he's extremely attentive and times he seems distracted and dismissive. He has SO SO much going on that at times it gets the best of him. Im sorry you didn't have a better experience. I think he sends everyone to the nutritionist. Actually I think he is more than a basic nutritionist! His knowledge amazes me. Oh marti, my balance was better with my eyes closed too. But I have strangely good balance they said

I wondered how they made out with the storms up there. At least you weren't evacuated. Hang in there Marti!

Sue, from what I understand (and I'm new to EDS) is that you CAN be hypermobile without EDS. You can even be hypermobile and never have any problems. So it'd be a personal choice. When I was diagnosed I got Dr Tinkle's book and from reading that I found I have many more signs and complications than I had realized. If it's somethig you wonder about you could look at his book and see if it points towards it or not

Good luck, marti! Let us know what you find out. I'm interested in what it could be if it's not POTS either. Oh and the Beighton test- anything over a 4 is considered signifcant

My dr wants me doing it but am not ready for 30 mins, mine is only a couple of mins, Test it out first. If you do to much to fast you'll feel like death

I went to him already knowing I had POTS. One of the first questions was "has anyone tried to find the cause of your POTS" I said not really so he wanted to go through the circumstances of how I got sick. He asked as a bunch of questions, did a basic exam, and then went into what he thought from my history and exam was the cause. In my case he said he thought it was EDS given my history, timeline of illness, and flexibility. He said I'd have to see a geneticist to be sure and he'd like to do baseline testing. I think he did 20 tests. I don't remember them off the top of my head. There was a TTT with transcranial doppler, nerve/autonomic tests, seizure tests, gastric emptying, metabolic stress test, a bunch of heart tests, and 12 vials of blood work. When all of those were done he told me my results and that he still felt the cause was EDS and referred me to a geneticist. He also gave me a treatment plan according to my results. He's the most thorough dr I have seen when it comes to testing.

Good luck marti, let us know how it goes! Thankful, I've been to dr s and finding the cause seems to be what he's interested in!

Not wierd at all, I cut easily too. I think it's more a sign of EDS than POTS. I had a metabolic stress test 10 days ago & my bruises are just starting to lighten...thats 10 days. Yup marks & bruises from a bp cuff & electrodes!

All the time. Does anyone know why or how to treat it?

I hope this helps you get some direction, rich. My dr does metabolic stess testing to see how we handle exercise. My first one a few months ago was awful. Last week, I had a follow up test. While it's not normal by any means, there was some improvement But I did it on an exercise bike and had a bp drop as well. I wondered why too?

That's a good sized dose, jenn. Things may be different for me now, I have a more knowledgeable dr. He's switched some things up on me more recently and I've had an easier time adjusting. I've been wondering if it has to do with the fact that we're actively working on my gastroparsis and my digestion is improving

I wish I had an answer for ya, puppy. I have the same problem. My dr is having me try carnitine this weekend for energy and from what I've read it can help with cognitive stuff, too. I pray it does. Before this we tried a b complex & that only helped a little. Does yours extend into nausea & this wierd loopy/dizzy feeling? Its such a bummer because if I could deal with it better i could stay occupied with small things most of the time and feel so much happier.