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New POTS diagnosis?


Rnj
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Hello...I just found this website. It sounds so much like me it's scary. I had two episodes of syncope recently and was sent to the hospital. They ran a bunch of EP studies which were all negative and basically left me feeling like the way I feel is all in my head. I don't when exactly it started, but lately I feel awful. I am so frustrated. Any tips?

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I do not know where you live but if possible have your syncope investigated by either a cardiologist or neurologist. As Ernie stated , the tilt table test is the gold standard for diagnosing dysautonomias but it is not all inclusive (or exclusive for that matter). You can read through the posts on this forum (Mighty Mouse had a recent one) regarding how long it can take to be diagnosed. I hope you are somewhere with knowledgeable doctors but they are the exception and not the norm in regards to dysautonomias. I was fortunate to live in Alabama at the onset of my illness. I have a phenomenal cardiologist who figured out "the deal" pretty soon after seeing me. So, I wish you well but have to warn you you might have a long, hard road ahead. However, this is a great forum for support.

Carmen

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Just a little test you can do on yourself... take your pulse while lying down, then take it a minute or so after standing. If it is 30bpm faster than lying, you can tell that to your doctor and ask for an investigation into POTS. That's what the nurse did for me at a "special syncope clinic." All it took was 5 minutes, and i had my diagnosis :) Too bad i had to get it all formalized with the TTT, a doctor consultation, and lots of other things. I had been fasting and was sitting there for hours feeling so sick!

Best of luck...glad you found this place. Best thing you can do for yourself is become educated with all the resources here on this site.

Kristen

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Thanks to those who responded. I am already scheduled for a tilt table next week. I was just in the hospital and every time I got up out of bed my pulse would jump up about 50 bpm. I get dizzy, hot, and nauseous. Basically, I just feel awful. I have been on BP meds for 14 years and now they are saying maybe I never needed them. I am confused. If I was already on a beta blocker for my BP wouldn't that help? I am so frustrated.

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Hi Rnj,

I can't really help with your question, but I wanted you to know that I'm glad you found this site. There are a lot of helping and caring people here, who are always there for eachother. The tilt test will help finding the cause of your problems.

Best wishes,

Corina

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If you're on the beta-blocker, it may or may not work to slow down your heartrate. I'd been on toprol for over a year when I had a tilt table test, and as I was still having major symptoms, the cardiologist had me continue to take it for my test... my BP still jumped about 60 bpm... (without meds it's anywhere from 35-120 bpm jump, as i have a low resting heart rate).

For me it seems that yes, my heart doesn't race as much on beta-blockers, but I still have all the same symptoms.

Anyway, all the best with your tilt table test and finding some answers!

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Hi Rnj-sorry it took a while to post, but I just wanted to welcome to this site.

I am sorry for what you've been going through.

I was just diagnosed in July with the help of the tilt test.

Good luck and hope you are feeling better.

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Hi Welcome to the board!!

I just wanted to say I had been on a bb for many years before I started passing out. It really stumped all the Dr's. After a tilt table test confirmed a problem they increased my bb dose and added florinef and that worked really well for a while.

I do want to caution you though that while a tilt table test is helpful it does not give a definitive answer to diagnosis. There are many false positives and negatives on the tile table. Another problem with the tilt table test is there is no standard procedure so different Dr's, clinic and hospitals do the test different and that's not such a good thing because you don't always know if you are getting the procedure performed correctly therefor, a correct outcome. It is a good test and I'm not discouraging it at all....just want you to know it's not necessarily definitive by itself.

From what you wrote, you sound a lot like me so I can relate to what you are going through and how lousy you feel.

Good luck with testing. There's a lot of great support on this site and a lot of information so happy reading! :)

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