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Kim
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Hi, my name is Kim, I just want to thank you all for sharing all of this information. I have been really sick for a few months now and been to many doctors, none of which have really helped much. I was hospitalized for dehydration and ever since then have felt horrible. A few years ago I had some of these problems like palpitations and lightheadedness, but now it's way worse and there are many other problems. I have many of the same syptoms all of you have talked about. First they thought I had an adrenal tumor, then hyperthyroidism, then diagnosed my with anxiety and sinus taychardia. I take beta blockers and xanax. The beta blockers seemed to work good, but don't seem to anymore. My pulse definately raises 30bmp from when laying to standing. So I have been desperately searching the internet looking for answers and now thanks to you all, I think I have found what's wrong.

So I'm guessing there is not a lot they can do for POTS? Do they know the cause?

Thanks again,

KIM

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Hi Kim,

Sorry you have this disorder and welcome to our little world.

The etiology and treatment of dysautonomia is still in its infancy. Mine is genetic. We have been fainting in my family for at least 100 years so we have about 6 generations. Others have sudden onset because of a virus of some sort. There are only 2 genetic type that have been officialy discovered and mine is not one of them. I hope that one day researchers will find what is wrong with my DNA.

We are medicated on a trial and error basis. Each one of us is different and we have to experiment.

Maybe you could suggest your doctor to prescribe you a tilt table test. This way you could run the chance of getting the proper diagnosis.

Ernie

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Hello Kim,

Welcome to the forum. I'm sorry you have had such a hard time finding out what is wrong with you. Many of us on the forum have been through that as well.

There are things that can make your symptoms more managable. If you haven't already done so, you might take a look at the what helps page:www.dinet.org/what_helps.htm

The what to avoid page may help you as well.

We also have a "causes" page that lists some other disorders that have been associated with POTS symptoms.

I wish the best,

Michelle

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Thanks for your help. Do either of you know of a way to find a doctor who understands this? I live in St. Louis and I cannot seem to find anyone that familiar with it. One of the Doctors told me Dr. Low at the Mayo Clinic specializes in it, but I need someone closer. If you have any suggestions just let me know.

Thanks,

Kim

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We have a physician list on the website. Check it out at: www.dinet.org/physicians.htm

Joining the Meet Others Program (if you haven't already) is a way to connect with other patients and possibly find physicians that may be near you.

Hope this helps!

Michelle

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