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When Were You Diagnosed With Dysautonomia?


When were you diagnosed with Dysautonomia  

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For those living outside the U.S., what type of production occurs in the area you lived in when your dysautonomia became pronounced: i.e. rural, urban, suburban, local manufacturing facilities, local agriculture etc.

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Corina,

I have to agree with you.

I believe drs started studying POTS more and more people got a proper diagnosis rather than being sent home after being told that it's all in their heads and that they suffer from anxiety. To this day a lot of relatively young drs I came in contact with have no idea what POTS is.

Alex

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If the standard for diagnosis is postural tachycardia, i.e. tachycardia on standing, then how come everyone wasn't diagnosed with inappropriate sinus tachycardia or orthostatic intolerance? Pots is more recognized in a clinical setting now, but orthostatic intolerance is not so new. So if we did always have pots, why wasn't it recognized, including by us? The explanation should be, my heart races when I stand and I feel like I am going to pass out." That is not something a clinician would typically ignore as it is a marker for oi. At least a cardiology referral would take place. For me, i was exhibiting symptoms before 2007 and they couldn't find anything--had a lot of poor man tilts with no symptoms-- but it wasn't until 2007 to present that the heart rates became fast.

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I think it's that they didn't know lemons. When I had my first ttt POTS was considered raise in hr and drop in bp. At the time I met the raise in hr (got up to about 175 from 65) but bp dropped about 18 points. My doc told me that technically I didn't have POTS as I didn't got the 20 points in bp drop.

That was back in 2002. Later on I learned that POTS was just the raise in hr, While by then my bp dropped over 20 points. Like you said I think I should have been diagnosed with both POTS and OI. I remember when I was about 9 my parents got a phonecall from the sports doc that had examined me that they needed to take me to a cardio as my hr was so fastn (measured while standing I remember that very well).Of course when I saw the cardio I was tested while supine so nothing was wrong with me :)

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Inappropriate sinus tachycardia (IST) is a confusing name of a syndrome and refers to a specific set of symptoms: high RESTING heart rate, inappropriate rise in heart rate to MINOR EXERTION (not necessarilay standing) ie walking, over-sensitivity to beta-adrenergic agents (ie isoproteronol, epi, albuteol), and a decreased cardiovagal reflex. While there are some people who have both POTS and IST, it seems that most people with POTS do not have IST, and some people (like me) with IST do not have POTS.

To make it very simple, POTS is inappopriate postural tachycardia, IST is inappropriate exertional tachycardia.

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Personally, I STILL wouldn't have a diagnosis if it hadn't been for finding it myself on line and taking it to the doctors. So I agree with Corina, that there's slightly more awareness of it as a diagnosis since 2007 in some quarters. In the past, when I'd mention the racing heart and feeling like I was going to pass out the docs would immediately revert to the old "you're depressed" or "you're anxious". Never did even one of them suggest "orthostatic intolerance" or a referral to a cardiologist and I saw a LOT of doctors.

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