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Hi,

I am going to see a specialist in Sept for my positive TTT and various symptoms. This has been a long road and quite frustrating.

My questions relate to the definition of POTS. My TTT showed increased HR with hypotension of 70 after 8 minutes. They stopped the test before I fainted. I have never had any syncope. The term POTS confuses me, even though I have done quite a bit of reading and have a medical background. My understanding is that POTS is unrelated to BP? That is more about the tachycardia? The idea of subsets or types is what I am finding confusing, I suppose.

Does anyone here have PAF or AAN? These seem to fit the majority of my symptoms. Is the treatment for these different than for POTS?

I realize that you aren't doctors, but I could use some "this is what has happened to me" stories to help me relax until I go to my appt.

Thank you in advance,

Julie

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Hi Julie and welcome!

A lot of people come to this forum and don't realize that there is much more to the site. If you go to the main page of the site, you'll get brief summaries of most of the conditions we have here (far better than what could be explained in a post.) The waiting for diagnosis is the hard part! Keep asking questions, and keep good records for yourself! Plus, keep us all posted! :blink:

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You are correct that a POTS diagnosis focuses on a heart rate increase. Some POTS patients have a drop in their bp during tilt, while others keep a steady bp. My bp goes up and up and up the longer I am on the tilt. Here is a link from Vanderbilt on PAF. I believe PAF is accompanied by a very low supine catecholamine level when supine that barely rises in the upright position.

http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790

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POTS is defined by your BP and HR. Normally, with POTS, when you go from lying to standing, your HR should rise at least 30 bpm but your BP shouldn't fall much below 10-15 points, if at all. Some people's BP go up quite high, too. There is some disagreement among the medical community on what constitutes POTS....my doctor from Mayo doesn't think I have POTS (but definitely dysautonomia/severe orthostatic hypotension) because my BP drops so much on standing. My cardio here in Tucson disagrees. I'm also a fainter because my BP gets to low while my HR goes up too much.

Here are some of my average numbers:

Lying: 100/70 BP; HR: 60 (would go lower but I have a pacer for bradycardia)

Standing: 75/65 BP; HR: 125-135

Sorry I'm not very familiar with PAF or AAN. Hope you're feeling better soon!

Cheers,

Jana

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