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yuliya

Hyperadrenergic Pots

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So I had my 4th TTT and the doctor seems to be thinking that I have the hyper pots. I also did the breathing test where you blow for like 10-15 seconds and a controlled breathing test. I am now suppose to have a sweat test, and wondering if you had to stand for that, hope not standing and hot places are not my friends? My worst symptoms as of right now is tremors, palpitations, fatigue, insomnia, and calf pain which can be excruciating, I also suffer major migraines and frequent headaches. Any idea as to what kind of medications might help to make me feel a tiny bit better? I just turned 30 and I feel 75, my friends say that my tremors are so bad that they compare them to there grandfathers who both had Parkinsons.

Thanks for any advice.

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The TST (sweat test) that my son had at Case Western University Hospital in Cleveland was done laying down. They slid him like a pizza into a big glass box that then gradually heated up. My son also has bad tremors in his hands and when he plays online games with his friends his character shakes. They have asked him if he has parkinsons.

As far as medications that will help, we are still looking. Doxepin was a great help for about 7 weeks before it quit working. He almost felt normal for those 7 weeks, but it was also on the maximum dose for him.

Christy

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I had a QSweat test. I'm not sure which one you are referring to. On the one i did, they had me sit in a chair and they put little electrodes on my arms and legs. I think there was a chemical or something on them that makes you sweat and then it measures how much you sweat in each of the areas where the electrodes are. It wasn't really uncomfortable or anything since I could sit and they didn't make the room get hot or anything like that, but it did feel like ants were biting me where the the electrodes were, and it left big red marks on my arms and legs for the rest of the day.

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I saw that you are in MD. I see Dr Khurana and I had a sweat test with him. I don't know if he is who you see as well. He has you lie down. He paints you with iodine, dusts you with powder, and monitors your temp under your armpit and in your mouth. Then, the room warms with dry heat and toward the end of the test steam is added. All I had to do was lay there. Its not pleasant (because we have POTS and are now heat intolerant, there was a time when we would have paid for something like this at an expensive spa) but not nearly as bad as a tilt test and you are laying down. There's nothing painful and he would have stopped if my temperature readings had gotten too high.

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Yes he is the exact doctor that is doing it. glad to know its not to bad of a test. Thanks everyone for your replys

Edited by corina
removed quoting. please answer by using the Add Reply button which is at the bottom of the page (right side)

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What does the sweat test determine? I mean, I'm guessing it'll say you sweat too much, but of what significance is that in figuring out what type of POTS you have?

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I had my sweat test done at Mayo Clinic/Rochester, and they put iodine and powder all over me, then slid me into a box-like structure when it gradually warmed up. I couldn't tolerate the test more than 5-10 minutes, so they didn't get an accurate picture of how I sweat when I do...It was unpleasant for me - but I'm very heat intolerant.

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That test actually doesn't determine what kind of pots you have it actually checks for neuropathy from what I understand.

Edited by corina
removed quoting

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Dr Khurana told me it tests to see if there are any parts of your body that have stopped/fail to sweat. Meaning you have developed anhydrosis and your autonomic system is failing. That's why your temp has to be monitored so closely because if you are one of the people who have anhydrosis and you fail to sweat, you are at risk for heat stroke. I don't fully understand it but I think it is related to the "Pure Autonomic Failure" that is one of the disorders mentioned in the Dinet Home Page.

I was hopeful it would have explained my extreme (and gross) sweating but it doesn't do that. :( Although, I think in this instance I should be greatful for the extreme sweating if the alternative is no sweating since that can be deadly.

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I have no eperience with this test, either, but am wondering if there are any Canadians that have had this done, and if so, where? I have become incredibly heat intolerant, and almost never sweat even when I'm on the verge of passing out from over heating. It would be interesting to see if anything could be done about that! :)

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