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SunsetParadise49

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Posts posted by SunsetParadise49

  17. Florinef Fyi

    in Dysautonomia Discussion

    Posted

    i'm not sure how florinef only taken one time every three days or so could stay in your system and help to prevent symptoms............?? i didnt think the half life was THAT long.....i have been told that florinef needs to be taken daily to be therapeutic....anyway, hope you get some relief either way, however you use the med!

    I was told the same thing. I was told that it takes weeks like two-four weeks for it to get into your system. And then a good week for it to be out of your system.

    I take 0.1mg's twice a day and I find that it helps me a lot. Once in a while there will be a day or two where it feels like it doesn't help, but in most cases it works.

    I hope that it continues to help you feel better no matter how you take it, Karen!

  19. Gastric Emptying Study

    in Dysautonomia Discussion

    Posted

    I just wanted to add, that for me the getting up to stand between the x-ray thing every 15 minutes was really hard for me to do. I was blacking out a lot at that time and plus the test was early in the morning.

    And cardiactec, I think my test might have been more than two hours...I think it may have been three, I don't think it was four, but looking back, I know it was not just two.

  22. Eds/hypermobility

    in Dysautonomia Discussion

    Posted

    I watched like five minutes of it. I couldn't stand seeing him using his medical condition in that way. To me, it would be like a Dysautonomic standing up in front of an audiance until they passed out, just for the attention. I think that if Gary wants to raise EDS awareness that he could find a better way, rather then being a freak show.

    My best friend possibly has Hypermobility EDS like me, and when she brought this up to her one doctor, he told her, "No, you don't have Ehlers- Danlos Syndrome. Those kind of people are freaks, they are circus people."

    I just did not like the show. :)

  24. Gastric Emptying Study

    in Dysautonomia Discussion

    Posted

    Having brain fog here, but is the gastric emptying study where you have to eat radioactive oatmeal or scrambled eggs? If so, I had to eat the radioactive oatmeal. You can't taste the radioactive powder, it's tasteless.The test was like 2 hours long, and every 15 minutes you had to go and stand between a special x-ray type maching and it took a quick picture. It was a fairly simple test.....I hope I'm not telling you the wrong test lol. Good Luck!

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