Dizzy Dame

Thanks guys, I know that my EKG has been relatively normal (no deadly arrythmias, but lots of sinus related arrythmias) for about four months, but you're right: something could have changed and my arrythmias could be worse or different. I'll call my cardio and get it checked out. Thanks again, Lauren

I'm not sure if we've talked before, but it's good to meet you. I hope you've had a better day today, and I'm glad to hear your husbands accident wasn't worse, although it sounds awful about the face swelling. Sorry I was late to respond, I've been spacey lately

Hi steph, I'm new to the forum, but it's already a lifesaver. I just don't know what I'd do without it. It's good to meet you, and I'm sorry to hear you've had such a terrible time. I hope you're on the up and up though. Take care, Lauren

Hi all, Starting about yesterday, I developed chest pain. It lasts for a few minutes, and resolves when I lay down. It's kind of a pressure on my chest, not a shooting pain about a 1 to 2 out of 10. I went to my GP and got an EKG and they said everything looks normal (this was yesterday). But the pain kept me awake almost all last night, and it's been coming and going today. I'm worried, but I DO NOT want to go to the ER. Do any of you get this? Should I be worried? Thanks, Lauren

Hi pooh, I know how you feel. My bloodpressure has finally stabilized, but now I'm having mysterious chest pains that keep me up at night. My EKG is normal, so it's probably muscular, but still, all sick and no sleep makes dizzy a dull girl ! Hopefully we will all pull out of this funk soon. Cheers, Laruen

I had rectal bleeding a few years ago along with SEVERE abdominal cramps and it turned out to be ameobas. I got them from swallowing lake water when I went swimming. It doesn't sound like parasites, but you should probably check for them just in case because it'd be a quick, easy fix Hope everything workds out Lauren

I'm sorry you feel neglected. I read your posts, but I had no advice for you so I didn't respond. I'm new too and I've found the people here to be really caring, so I'm sorry you had a bad experience. Lauren

Pooh, I'm sorry to hear that you won't be able to come. But I like the idea of a yearly meeting I think the more support we have for one another, the easier the whole mess becomes. Aprilmarie and Melissa, I'm flying from Hawaii on the 4th, so I'll start looking for a place in Atlanta for all of us to meet. My cousin's a minister there (last time I checked) so he may be able to set aside a room, or at least reccomend a good restaraunt to meet at . You guys can email me whenever you want, I guess until then I'll just be packing all of my things Cheers, Lauren

You drink? My doctors have all said to stay AWAY from alchohol because it can exacerbate hypotension. The last time I had a beer, I passed out (this was when I first got sick). Now I've developed an aversion to alchohol, I don't even like the smell of it anymore, same with caffiene. Maybe that's why you got sick. -Lauren

Hi ballroom, Have you talked to your doctor about this? You probably should. I rarely fully pass out, so I don't have much advice other than that but good luck!

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

Hi all, Some of us were talking about organizing a support group in Georgia. If anyone is interested, please post the general area where you live so that we can find a place that works for everyone. Also, indicate if you want to be emailed about this ( so that we can exchange numbers and such) . I suppose we should try to get this thing together within the next few weeks so perhaps we should also find a week in october to start that works for everyone (perhaps on a Sat. or Sun.) Thanks, Lauren

Hi blackwolf, I don't know if we've talked before, so first, it's good to meet you. Secondly, I hope your surgery goes well, as I'm sure it will. You'll be in my thoughts. - Lauren

Oh pooh, I'm so sorry to hear you're having a rough time I wish I could say something to comfort you. I know that when I feel really bad, I read this poem by Rilke: Who, if I cried out, would hear me among the angels' hierarchies? and even if one of them pressed me suddenly against his heart: I would be consumed in that overwhelming existence. For beauty is nothing but the beginning of terror, which we are still just able to endure, and we are so awed because it serenly disdains to annihilate us. Every angel is terryfing. And so I hold myself back and swallow the call-note of my dark sobbong. Ah, whom can we ever turn to in our need? Not angles, not humans, and already the knowing animals are aware that we are not really at home in our intreped world. Perhaps there remains for us some tree on a hillside, which every day we may take into our vision; there remains for us yesterday's street and the loyalty of a habit so much at ease when it stayed with us that it moved in and never left. Oh and night: there is night, when a wind full of infinite space gnaws at our faces. Whom would it not remain for--that longed-after, mildly disillusioning presence, which the solitary heart so painfully meets. Is it any less difficult for lovers? But they keep on using each other to hide thier own fate. Don't you know yet? Fling the emptiness out of your arms into the spaces we breathe; perhaps the birds will fell the expanded air with more passionate flying. I know it's kind of dense. It's basically saying that we are all alone, but by realizing this, we are all connected and therefore are never alone. I hope it helps . Feel better, and know it will get better. Big hug, Lauren

Thanks again guys for all the support. I'm doing better today, I was even able to go to class!! So things are looking up (it probably has alot to do with the fact I've stopped menstrating). I think it's soooo strange that alot of us have more problems during our cycle. I wish they'd do some more research to find out why! Cheers, Lauren

Hi Rbk, Welcome to the forum! Although I'm sorry you have to be here in the first place. My doctor used the tilt table test to diagnose me, but it took me awhile to get to that point. Hopefully you can get one done sooner, although I have to warn you that I had a very unpleasant experience with mine. It's not dangerous, just uncomfortable. Have you seen a cardiologist to rule out heart problems? Hope you find the answers you're looking for -Lauren

Pooh, Thanks for the advice about Emory. I'll look into piedmont. I love the idea of setting up a support group! Hopefully we could find a location that works for everyone, although I know that people are smattered all over the state. Thanks again for the advice. All of you have been lifesavers -Lauren

Thanks guys for your support. Just knowing that I'm not alone in the crappy ER treatment makes me feel a little better. Bamagirl, I'm looking for a new electrophysiologist and possibly a neurologist as well. I can get my doc's here to reffer me, but if you're seeing someone at Emory who has experience in dealing with POTS, let me know his name . I'll also ask about heavy metal toxins, since I eat so much fish. (I've heard some types of fish have mercruy). Thanks so much for your help and thoughts. Oh, and yes, I did get IV fluids in the ER, which seem to help my symptoms, but only for about 24 hours...then I crash again. - Lauren

ooooooh! vibrations, gravity, physics? Sounds right up my alley. I'll check out the site. Also, if you're into wierd physics, check out "string theory". (you can just google it) it has very little to do with dysautonomia, but it's still super-fascinating. ok. I'm really going to bed now. - lauren

Is your Doc one who has a background in Dysautonomias? *got to go to bed, I'll check this in a.m. Jeff <{POST_SNAPBACK}> Ha! A doctor who knows what they're doing? on my little island? not a chance. That's one of the reasons I've decided to go back to the mainland: My doctor diagnosed POTS after going to the website I told him about But my doctors are very kind and they care about me, so at least I have that going for me. Hopefully the move will give me some answers though. But thanks for the concern Jeff. Well, I'm off to bed too. First I have to wake up my boyfriend so he can help me to the bathroom or I may grey out, fall, and break myself. (big sigh) G'night, Lauren

12string, Thanks for your kind words. You know, I never thought about it but you may be on to something with the sushi. I eat sushi almost daily, especially since I've become sick since soy sauce is high in sodium. I also eat alot of undercooked fish (not sushi, but hawaiian style) in my diet. I'll talk to my doctor about it. And thanks, corina, for your thoughts as well. Also, does anyone know a good doc at Emory? I'll need a new one when I move. Thanks again, you guys are great Lauren

Hi all, I began menstrating three days ago and my syptoms went crazy. I clocked my blood pressure in the 70's (which is very low for me), and my pulse would go from 50 laying down, to the low 200's standing. I thought I could "tough it out", but yesterday I was unable to get out of bed, I would begin to sit up, then grey out and fall backwards. I lay in bed, having to pee, alone in the house for four hours before my mom came by and helped me to the bathroom. Today I "fell" four times by noon, and wasn't even able to stand up from the toilet . I called my EP and he said I should go to the ER (dum-dumdumdum). I get there and, of course, the doc's look at my HUGE file and shake thier heads. They said they'd be happy to admit me, but that all they would be able to do was keep an eye on me. So here I am, home again. Still dizzy, and tonight I decided that I just can't stay in Hawaii anymore. I'm going to be moving in with my Grandparents in GA for the month of October, then back to my hometown (washington dc) in November. I'm so upset. I really wanted to make Hawaii work, but it's just not possible with how my health has been. I feel like my whole life has just been blown apart. The life I have now is utterly unrecognizable from my life even three months ago. I just want to get better, or at least accept that this is my fate and find some kind of peace with it . Ok. I've rambled long enough. Hope everyone's having a better day than I am . -Lauren

If you're on florinef, that may be the culprit. One of the known (but I think less common) side affects of florinef is cerebral swelling (I guess your brain swells). You may want to talk to your doc about it. -Lauren

Hi Emily and Amy, Good to meet you guys, and Emily, on the slim chance I do get into Iowa (It's a really compettive program) I may just take you up on your offer. Thanks Lauren

Hi Roselover, I don't think we've talked before, so I wanted to say hi and also that I hope you feel better soon. It's no fun being that sick, I got amoebas last year and had a period of about a month where I wasn't able to eat anything other than oatmeal, and even then I had a hard time keeping it down. So I know how awful nausea is, but just know that it will eventually pass (hopefully sooner rather than later ). Take care and get well, Lauren