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Newly Diagnosed

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Hi everyone!!!! My name's Anna and I'm 16 years old. I was recently diagnosed with Dysautonomia/POTS, and anemia. I had been having really bad episodes for years before I was diagnosed. Sometimes I thought I was just crazy. I was happy when I got my diagnosis because I hated not knowing what was wrong with me. Eventhough the stupid tilt table test was awful cuz i fainted, at least i had a diagnosis. Then my doctor explained what exactly it was that I had. My happiness quickly turned into fear. My doctor said there's not enough known about POTS, and the medicine they use to treat it doesn't work for everyone. I don't know anyone else who has POTS, and it would really help if I did. Sometimes I just need someone to talk to who gets what I'm going through.

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Hi Anna, welcome aboard! I am new on here too, and was just recently diagnosed with POTS and vasodepressor syncope. I know what you mean by feeling relieved to get a diagnosis! I hated that I had all these symptoms and no one knew what was wrong for a long time. It is also a little scary, like you said. I have discovered there are varying degrees to POTS...some people have bad days but are generally okay and manage well enough, whereas others are debilitated by it. I have read in multiple places that pre-teens and teens who acquire POTS may have a potential to outgrow it, so that's a good thing.

Have the doctors started you on any meds yet?

I just joined this board, but everyone on here has been really nice and helpful. So this is a good place to get information, and interact with others with POTS too. And of course to just talk about what you're going through so you don't feel so alone.



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Hi Anna and welcome!

I also have POTS and anemia (well, I'm not anymore due to iron supplements). You will get a lot of support from this board. I have been a member for almost 2 years. Everyone is so nice and helpful.

You will find that a lot of people manage quite well with a little change in lifestyle habits. I am happy to say that I do most things that I did before I had POTS with the exception of aerobic exercise and being out when it is 90 degrees (that can really get my heart rate going).

Symptoms seem to be varied. There are all sorts of symptoms that go along with POTS from fatigue to dizziness to bowel problems to numbess in certain body parts at times. I am still learning not to be afraid when a new symptom pops up. The good thing for me is that the symptoms are almost always temporary.

Post any questions you have about medications, symptoms and the like - the people on this board have a great deal of knowledge about those sorts of things!

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