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Stace915
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Hi I just found this forum, I recognize some peoples names from the NRDF forum but I just came across this one. I am a 25 yr. female diagnosed with NCS in March of this year. I am back at work now, but I still miss so many days. I was hospitialized for a week in June and since then the cardioligist is just trying to find a medication that works for me. Midrodrine was working but I couldnt eat and then it started to give me heart palpitations, beta blockers made me faint, even tried support stocking. Now I am on Celexa and Florinef as well as salt tablets gatorade yadda yadda. On good days I feel semi-normal but on bad days I can barely get out of bed. I have my first appt with a dysautonomia specialist next week but I just feel like we are running out of options...and I am going to be this way forever. I am still having such a tough time dealing with my new limitations, not being able to go out with friends, drive etc. Anyways I was just hoping that maybe someone had another medication suggestion or any type of suggestion for that matter!!!

THANKS!

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Welcome stace,

I hope you can find some answers on this forum, or at least an arrow pointing you in the right direction.

As for treatment, it seems you've tried everything the doc's have tried on me. Honestly, I've found that IV fluids (2 liters) is the ONLY thing that makes me feel normal on my bad days. Now, I have a doctor that gives them to me whenever I feel bad, I just call and come in. It helps for the short term, but I'm in the same boat as you: I just want to get better.

Sorry I can't be of more help, but maybe there's someone here who can.

Best of luck,

lauren

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Hey do we have another Stacey on the boards?? Yea! As you can tell from my toatlly original screenname:lol: I am a Stacey with an e as well

Welcome and hope you can find some answers

Stacey :-)

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Hi Stace,

Welcome to the forum! I can sure relate to what you are saying. I am 24 and it is so hard to learn to cope with limitations. I used to drive everywhere and was constantly busy, but now i'm lucky if i can get a shower for the day. It is so hard, and i don't know any magic answers to tell you right now. Just glad you found this place because it is very supportive and informative.

Kristen

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Hi, Stace. Just wanted to say "welcome". I'm glad you are able to see a dysautonomia specialist. I hope this doctor will be able to help you. I understand what you mean about having to cope with lifestyle changes (driving and so forth).

I miss the "old me" and my activities. Don't give up hope. I'm relatively new here, and I have learned so much from the folks here. They're an awesome group!!

Melly

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hi stacey-

welcome! i'm sorry that you have reason to be here but glad you found the forum. there's good info & great people too. it's great that you have an appt with a specialist doctor next week..i hope it goes well. i can definitely relate to the frustration of having to deal with limitations (and am also 25)...i've been venting about that exact thing on here a fair amount lately.

hang in there,

:) melissa

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Hey Stace just wanted to take a moment and welcome you to the forum. I think that everyone here has tried just about every kind of med possible and none of us have our symptoms disappear. To me if I can just get through the days without passing out I have comfort. I look at blackouts as part of my daily routine anymore. I hope that you can find something that will help you.

Welcome and good luck,

Rita s

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