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How were you dx with POTS?


ar1281a
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Hi all,

Although I'm new here, I think I've found great people and a great place. I'm still not formally dx with POTS, just Orthostatic Hypotension and was wondering what other people's experiences have been. For instance, how were you dx with POTS? main sx? do you have sx 24x7 or only during "episodes"? what sx do you experience during these episodes? what helps?

Sorry for all the questions, but I'm looking for answers.

Thanks in advance to all!!!

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Hello and welcome. There is a lot of good info on the main Dinet page that might can answer a lot of your questions. "Typically' and that's a dangerous word here, but typically, dysautonomias that involved postural hypotension are diagnosed via the Tilt Table test. It is not the end all be all but for most folks it acts as a bench mark as to what might be going on in your body when you have syncopal feelings. You may also want to read over some of the past discussions here and do a search. I know it is so overwhelming especially when you don't have a diagnosis. Just remember knowledge is power so read, read ,read and ask, ask, ask. That's what we're here for- good luck!

Carmen

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Hey there,

I can't say what other people feel, but I'll tell you my experience.

I was also first diagnosed with orthostatic hypotension...well, not really diagnosed: I went into the ER complaining of chest pain, dizziness, etc, and a very smart and nice doctor ignored the fact that others had labled me "painc attack" and did an orthostatic series. He found that my bp was in the 80/40 range standing, and 120/70 range laying down!

I was hospitalized and had a TTT that week. That's when they saw that I had POTS.

During my TTT, my pulse would go from the 50's (bradycardia) while supine, to 120's within two minutes of standing, after 10 minutes, my pulse had gone up to the 140's. My bp would drop accordingly, slowly falling until it was in the 80's.

Day to day, I always have tachy when I stand for more than two minutes. On a good day, I can stand for up to ten minutes before I start panting and eventually collapse (I don't really pass out, I just grey out and fall). However, I've found I'm able to walk much more easily, and when I feel really good, I've been able to walk for about an hour (sitting down every few minutes).

I tend to "crash" during my cycle. I can actuallly tell when I'm about to menstruate because I get progressively weaker and dizzier. During these times, my tachy is much more acute, and will skyrocket as soon as I sit up (I've seen it go from 50's to 170's in less than a minute).

I hope this helps, and sorry to ramble :rolleyes: You can send me a private message any time if you need support. I know how hard it is in the beginning ( I'm still pretty new in my diagnosis as well).

Take care,

Lauren

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For instance, how were you dx with POTS? main sx? do you have sx 24x7 or only during "episodes"? what sx do you experience during these episodes? what helps?

How was I diagnosed? By taking my pulse supine, sitting and standing...but, my cardiologist wanted to do a tilt table test to confirm his suspected diagnosis.

Symptoms 24/7? Yes, but they are very mild now. When I get out of bed in the morning, my heart rate goes pretty high. After 30 minutes or so (after taking my meds and drinking a glass of water), I'm good to go. My heart rate goes up throughout the day depending on what I'm doing (moderate housework, stair climbing gets it up there).

Symptoms experiene during episodes? High heart rate and sometimes shortness of breath.

What helps? 10mg of nadolol (a very low dose of beta blocker) and lots of water and gatorade. I also drink Propel (flavored water).

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Some of my sx's are 24/7 such as the digestive problems, pain, exhaustion, bp lability. Others are episodic such as dizziness and fainting and tachycardia.

I was dx'd via Tilt Table Test (ttt).

Nina

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Welcome!

My first TTT was inconclusive, however, my symptoms were such that POTS was suspected anyway. Out at the Mayo, the TTT along with history of symptoms suggested that I had mild POTS.

I only had tachy episodes (really bad ones) every so often, not on a daily basis, but I would get somewhat tachy with usual things like standing up, etc. Most of the 24/7 disabling symptoms (other than the fainting when I stood up) were related to the CFS end of things.

Angela

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