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Runnergirl


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Hi Runnergirl,

Thank you so much for your input on the tachycardia thread. It was really well said and easy to understand. I think you put many "hearts" at rest... so to speak. :)

I was curious about your personal experience with POTS. You mentioned that you run marathons. I am curious if your POTS has never been very bad or if you have been able to come back from a real down time. If so, would you be willing to share your story?

I have always been a very athletic person. Just before this POTs stuff got bad, I spent a lot of hours teaching dance, taking classes myself and playing tennis all summer long. I really miss these activities. I wonder if I will ever be able to move again.

I know, just because one person can feel better doesn't mean I will, but hearing that someone with POTS is still running marathons has given me a thread of hope to hold on to.

Thank you,

~Roselover

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Hi, Roselover! I just saw your post and I would be MORE than happy to share my story. It's a little detailed, and I'm in a bit of a rush at the moment - but I promise a thorough report in the next day or two! Stay tuned!

But I did want to quickly thank you for your kinds words and say I'm happy that you (and maybe others) were able to take comfort from the post on tachycardia and arrhythmias. I want to emphasize that I can articulate these things in a calm, clear way ONLY BECAUSE I, too, was plagued by all the same fears and anxieties that you, JLB and others have expressed. My journey to making 'peace' with my crazy heart has been one of ups and downs, believe me!

As a preview to my story, I will say that I have never been diagnosed with full-blown POTS. My electrophysiologist says I have/had some form of hyperadrengic ANS dysfunction, short of full blown POTS, but I think MANY here will be amazed at the symptoms I had and wonder that I actually didn't get the POTS label. Frankly, I think the fact that I never had a TTT when I was at my worst may be the only reason I didn't. But more on that later!

One other note: When I was researching what was wrong with my body (knowing it was NOT panic attacks, as my cardiologist first told me), I was in the midst of training for my first marathon. I found someone online who had the EXACT SAME SYMPTOMS - and he was an elite cyclist. He, too, was confounded by the fact that his heart rate would SOAR when he commenced exercising (just as mine did when I ran) - something that should NOT happen to fit, young endurance athletes. He was still able to cycle, just as I was still able to run - but it was definitely impacting his performance and rattling his nerves. As with me, this situation had come on rather suddenly. What was going on with him, with me?! I tracked him down through a post he had made years earlier, and said, "Look, I'm at wit's end. Were you ever diagnosed? What did you have? How are you doing?" Well, he was kind enough to respond. He had been diagnosed with - you guessed it - POTS! He was treated with Clonidine and he said his symptoms eventually resolved to the point that he no longer needed medication. I looked his name up recently and saw him doing extremely well in some cycling races and time trials. So, even if you can't take hope from my story (since I didn't get formally diagnosed), take hope from HIS story. This guy is a world class athlete - before and AFTER POTS. :-)

Again, more on me later. But I wanted to share something positive right away!

RunnerGirl

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Thanks Runnergirl... I look forward to your whole story!!

I spent many years bicycling with my dad. In his mid 60's he still cycles30-50 miles at least three times a week! He's riden many Centenials, and completed a Double Century (200 miles in one day) several times. Your story of the cyclist is inspirational!

~Roselover

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I always LOVE to hear success stories. I don't sit and wait until I'm cured anymore, but I'll never lose hope (lose/loose??? I'm sorry, having difficulty with spelling lately, because of my bad memory, don't know if this is correct). So thanks RunnerGirl, for sharing this. Like Roselover, I'm looking forward to your whole story. Also, I like getting to know all of you some better.

Corina

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It's great to share positive stories and stories of recovery and improvement. I believe there are many success stories associated with POTS. Let's see where we all are in five years, for example. I know not all of us will get well in that time or at all, but most of us will get better with time. And more is being learned about this condition and how to treat it. These are the things my specialist tells me and I have every reason to believe him as he has treated hundreds and hundreds of POTS patients over the past 10-15 years.

My sister has POTS and although had a struggle with it in 2003, now has resumed marathon running and other exercise, and works full-time as a physical therapist. Overall, my health continues to improve, although at this point I am still dependent on an ssri to feel my best.

Katherine

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