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new here, and i know nothing....


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it occurred to me after i left my doctor more than a week ago that i didn't understand much of what was going on....i feel more confused than i was before. i'm 23, 120 pounds, and was always totally healthy -never so much as a cold - until i had severe preeclampsia with my pregnancy. i had to deliver my baby at thirty weeks after my kidneys failed, and i had sweeling in my brain. since then (five years now) i have never felt well. i'm so exhausted, i can hardley keep on top of my child, husband, job...life. i'm completely worn out. also, my arms and legs feel heavy and sore, they fall asleep so easily, i have horrible headaches, stomach aches, numbness and tingling in my arms and legs, sometimes even in my scalp and face. i can't sleep well because my bidy hurts so bad with pins and needles, and muscle spasms. i have dizziness, lightheadedness, and feel my heart race if i only do so much as roll over in bed. anyway, i was diagnosed with fibro two years ago. i think my family doctor got sick of repeatedly telling me i had anxiety, depression, panic, etc. i WAS depressed- depressed that i felt like i was dying and my doc didn't believe. me. so, she sent me to a rheumotologist, who said i had fibro and essentially shrugged and sent me on my way (with a script for vioxx - which my urologist almost murdered him for given my history of kidney failure...) since then, ive been in the er a number of times for chest pain. it never failed, they continued to say "panic" and hand me a script for zoloft, or ativan, or elavil, or xanax. finally, about two months ago, my husband again took me to the er after i came home from my morning run and felt a RIP through my chest down my left arm. chest x-ray showed pleurisy - swelling in my chest muscles. the er doc also said i had a "very significant mytral valve murmur". anyway -very long story short - i had a positive tilt study. heart rate was at 137, dropped to 40, i passed out, and later threw up. the cardiologist diagnised me with neurocardiogenic syncope and put me on toprol. i went the following week for another heart echo (because in the hospital, they couldn't see the murmur on cho and thought it could be from the pleurisy) - and again, couldn't find the murmur - couldn't even HEAR it anymore. However, when I arrived, my BP was 140/90, heart rate was 100 bpm. when i laid down on the table, heart rate dropped to 70 and bp dropped to 90/40. so, finally last week, i was done with the event monitor. went to see the doc, he said my heart rate was on average over 100, and with movement as simple as changing my clothes, it increased to 130's, 140's and got as high as 190 from just going from laying down, to standing up and then walking up the stairs. he increased my toprol, and said i have postural tachycardia.

Anyway, I know I'm babbling - but I don't understand. The syncope is low bp, low heart rate, right? The postural tachycardia is high bp, high heart rate, correct? how can I have both? Do I have both? and what now? Anyone know anything about toprol? Any insight would be greatly appreciated.

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oh, and also...(sorry!!!)

i had a positive ana and the murmur has never been found, even though the ER doctor had said it was very significant, and couldn't believe noone had ever heard it before. so ig guess it's like bin ladin...we can't find it. we'll just ignore it until it kills me, right? :P doc said he didn't want to do a heart cath because it ould ruin the fibers in my heart and most likely require a pacemaker afterwards. ??? see my confusion? a pacemaker? am I going to need one someday? anyone else have one?

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Welcome to our board :P but sorry that it's because you've gotten diagnosed with NCS and/or POTS. I happen to have both diagnoses.

No, it's unlikely that you'll eventually need a pacemaker. Some people do, but it's a small minority.

My first suggestion is to browse through our primary site to read up on autonomic issues.

Start here:

http://www.dinet.org/pots_an_overview.htm

Once you've read that page, you can use the links on the left side to gain more information.

Also, another non-profit, NDRF, offers a free pdf download of a book that might be useful:

http://www.ndrf.org/NDRFHandbook.htm

Nina :)

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Oh, I also have positive ANA and a transient murmur. ANA can be elevated due to allergies, medication, infection, etc. It's a very general signal of inflamation--so, just having pleuresy (I also get that! Peas in a pod, you and I!) could be the source of the elevation. If you're negative on the more specific tests for things like arthritis and autoimmune factors, then it might just be one of the things I listed above.

Nina, again.

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Hi there! When I read your post, I knew immediately that your story sounded too familiar ... then I realized you and I have been e-mailing back and forth via the Preeclampsia Foundation and I had urged you to visit here. I am so glad you decided to post here because I think others here have helped me more than any doctor thus far. You obviously know my story of developing POTS after having my daughter a year ago.

How is the Toprol working for you? Does it seem to control your heart rate and BP at all? Others here have found that a low-sugar, high-salt diet with plenty of water helps them, as well as support hose to keep blood from pooling in the legs (if you read the mechanisms of POTS section on this Web site, you will understand that this blood pooling can cause a higher heart rate). I haven't had any luck with the support hose myself except that they keep the swelling down, but don't help my overall symptoms.

I'm sure plenty others will chime in soon. Welcome! :unsure:

Amy

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Amy!!! Hi!!!

I've been lurking around here for weeks and weeks - since you gave me this website and i finally decided to post. My cardiologist never said POTS...He first diagnosed me with NCS....then said "Postural tachycardia"...which is essentially pots, right? I mean, maybe I'm only assuming..... i guess now i just feel more confused about everything, bnut i read people's posts and think - hey, that's ME. so it's good to know that this is real stuff, and I'm not crazy....

Anyway - how have you been? and your little girl? e-mail me soon, ok?

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