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Types Of Pots


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Guest tearose

Try to do some reading when you get a chance, you will be amazed at how many different names and symptoms are out there!

Most get the specific type of POTS identified after having a full autonomic nervous system testing workup.

take care,

tearose

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Hi there,

A lot of us can date POTS starting to a specific time period, especially if it came on after a virus. If it came on in adolescence, and especially if you're a tall, slender girl, it may likely to be primary partial dysautonomic (one kind that is suppoedly likely to go away by the early 20s). I've had it forever, but I can't date it to an illness or anything, and I haven't grown since I was 12! I didn't know until a year ago that mine was from Ehlers Danlos Syndrome III AKA Joint Hypermobility Syndrome. If you go to the dynakids webside and look under resources, there's paper by Dr. Grubb on the postural tachycardia syndrome that kind of breaks it down. It may take time to figure it out, but it can help guide the appropriate treatment. B)

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I am 17 and have had POTS since I was in 3rd grade. I was told at Mayo Clinic that it is possible that I have an adolecent version that I may grow out of by the time I'm 25, or I may have it forever. There isn't a definate cause, but we think I got it from having mono (epstein barr) so many times (yes, I've heard you can only get it once, but I've had it 3 times). I'm not that tall (5' 2") and average build, so not overly tiny. I haven't grown in a few years. Any ideas??? Thanks!

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  • 3 weeks later...

My son (and we parents) learned a lot about his type from his work up at Mayo w/ Dr. Low. Found out he has low blood volume, low body sodium, and high norepinephrine levels, ie hyperadrenergic form. This knowledge was so helpful in understanding the symptoms and what works/doesn't work. Highly recommend you get a full work up w/ the full range of autonomic tests at a POTS center.

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Is it possible to have the POTS that goes away in your 20's without being tall?

I got sick after a little virus when I was 12, I am pretty thin, but I am barely 5"2" tall? My whole family is petite so I don't think you could ever expect me to be a normal height?

What are ANS tests?

Madeline

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  • 9 months later...

If I have the "overstimulation" problem (meaning weak, shaky, tachy, revved up but dying but can't sit still) after exertion or super-stressful situation, does that mean I have the hyperadrenergic form of POTS????? It is my main problem other than heat intolerance. I have heard that the hyperadrenergic form usually has to be treated for life...this worries me....

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I've been to the Mayo twice to see Dr. Low and still don't know what kind I have. They did that test there you lay on the table and they kind of zap your leg and they watch your hr and bp and then tip you up and do it. I think they are looking for something about sweating???? Anyone know what that one is about?

I also remember the first time I was there I had to do the 24 collection thing and I was really low on sodium even though I was trying to take in a ton.

Good luck with your research!

JJH

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Guest tearose

These are some of the ANS tests that help more fine tune what type of pots we have:

The sweat test where they put those little capsules on you arm and leg and then they get all prickly and hot is called the QSART test. The other more archaic sweat test is the Thermoregulatory Sweat Test. This is the one where you are in a paper bathing suit, dusted with brown powder and then slid into what feels like a tubular oven heated by strong heatlamps. They bake you until you sweat, the powder where you sweat turns purple,the powder that remains unchanged is suggestive of a no sweat producing area.

I can't recall the name of the test that shows the amount of circulating norepinepherine but it is done in a very controlled environment. First, after you have rested in a quiet dark room for 20 minutes, they draw your blood. Then you are put in a chair for 20 min and they draw your blood again. Lastly, they make you stand, I only made it to about 10 minutes, and they drew the last sample. They look to see how we are responding to postural changes with the level of circulating catacholemines.

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The last test you mentioned sounds like the one I did in the research study for POTS except they had me lay on the table and be quiet, then took blood, then did like a tilt table where I was suppose to stand for 5 mintues and then they take blood again. I only made it 3 minutes before they had to put me down. I never got to hear the results of that though I'm guessing because it was part of the research study and not a reg appt.???

The QSART is the other one that I was describing. I didn't do the one with the powder, doesn't sound like much fun either!

JJH

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