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need some help


sarapick
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hey all, i need some advice/help/someone to listen. i have not been diagnosed with POTS. when i was about 15 i fainted for the first time. i got up off the sofa, started walking to the bathroom, and just blacked out. this happened on and off throughout high school and college. sometimes it happened as little as once a year, sometimes once a month. i would mention it to doctors and they would say it was low iron, or hormones. i never thought much about it. now i am 24. i had a sinus infection about three months ago. ever since i have been having these fainting spells once or twice a week. every day i get dizzy when i stand up, move my head, or walk. i get up, start walking, my vision blurs, heart flutters sometimes, and i fall. i finally went to the doctor about a month ago. he did an EKG and i wore a 24 hour heart monitor, and he did blood work. they showed nothing. he told me to drink plenty of water, eat 3 squares a day. i did this and about a week later i was reaching up to get cereal out of the cupboard and everything went fuzzy and i fell. so i went back to the doctor. he took my BP lying down, sitting, and standing. it was okay. he did say that my heart rate increased greatly upon standing. i have a tendency to have lower blood pressure, usually around 95/60. so he sent me for an EEG and MRI. that was yesterday and i am waiting to hear. for some reason this is really depressing me and i can't figure out why. i feel tired all the time, and am very easily agitated. i feel like people think i am making it all up. thanks for any support.

sara

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I do not think you are making this all up. How could you fake passing out at unusual moments?

I hope eventually you receive respectful care from a doctor familiar with POTS or NCS. You will probably eventually need to have a tilt table test done by a neurologist or cardiologist. I think those are the two specialists who do this test.

If I were you, when looking into finding a doctor, first, look at this website to see if there are any familiar with this ailment near you. Hopefully, you can find a good doctor. If not, I would mention to the doctors secretary that you think you may have Postural orthostatic tachycardia or neurocardiogenic syncope and ask if the doctor would be able to help you?

Welcome to this forum. Check all the info you can find on this forum and ask away!

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no TTT. doc just had me lay down for about 10 minutes, then took BP. then i sat up for 5 mins, then took BP, then stood up for 5 mins and took it. it showed nothing. would a TTT show different findings? he said if he can't figure anything out he is sending me to a neurologist. that would be good.

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  • 1 month later...

hi, sara, :D

welcome to the forum! you are not alone and no one here would think you were making it up (based on the stories i've read). i agree with the previous....get a TTT and a cardiologist/POTS specialist.

once you know more, you can do more and learn more of how to cope with your symptoms. there is a lot of good advice in this forum. i would recommend searching around for common symptoms and see what's out there. there is a lot of collective wisdom and advice in this forum which you can use to your advantage until things start happening for you in the dx department.

i wish you luck and better days ahead. remember to pace yourself. you'll learn what that means for you, just be patient with yourself and doctors.

love and light,

Lulu B)

ps make sure they give you a proper TTT and that no one tries to jam the shoe in your shin to "keep you from passing out" it happened to me, i swear! i was stunned and too weak to stop it. PM me if you have any questions about TTT.

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Hi Sara, folks here have made some good suggestions to you about finding a knowledgeable doctor, and perhaps having a TTT to rule POTS, NCS or other disorder in or out.

Here's a link to how POTS is diagnosed:

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

I also sent you a private message to check out our frequently asked questions post at the top of this forum. There you will find links to sources for finding a doctor.

nina

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Hi.

Because this last episode of yours started after a sinus infection, be sure to get a thorough exam by an EENT. There are all sorts of similarities and overlaps between inner ear problems from infections and vertigo/lightheadedness from cerebral reduction in blood or oxygen.

I have such white coat syndrome that my BP always falls when I stand up at home, but never in a doctor's office. My baseline is higher in a doctors office (forced sitting, waiting, nervousness) which may explain it, and so I have to take in a record of my own BPs. Some believe me. Some don't.

Hope your diagnostic route is short.

OLL

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