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Guest Mary from OH
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Guest Mary from OH

Hello. My name is Mary. I live in Columbus, OH. I was dx with POTS this past Fri. I have suffered from this my whole life and not known it. I also have FMS, MPS, migraines, etc... I was diagnosed via a Holter monitor, + tilt table test and a E/P study. My resting HR is around 120. My response to the tilt table was unusal from what the dr explained. After I was raised my BP increased dramatically. I never passed out at all during the test. My HR also dramatically increased. Also, my HR fluctuated from 85 to 170+ during the test. My normal BP is around 80/60. I am still a little confused about POTS and how the meds will help me. My dr wants me to take midodrine. Interestingly enough, I am already on 2 meds that are used to treat POTS - Zoloft and . And I failed the tilt table test while on those meds. So, I'm a little concerned. And in the past, I've taken atenelol, Ritalin, and I forget the other one... My cardiologist wants me to see my neurologist to have some other things checked out too. (what, I don't know).

I haven't started taking the midodrine yet because I have a strange feeling about it. Before all the last phase of the testing Friday, I had researched about the "tachycardia" that he had dx me with. I had run across something called pheochromocytoma (adrenal tumors) and it sounded a lot like my symptoms except for the high blood pressure. But, come to find out I have high blood pressure upon rising. My dilema is that the midodrine is contraindicated for people with the adrenal tumors. No one has tested me for that ....

I know it sounds crazy, but I just have a funny feeling. At first I didn't think the POTS syndrome fit me at all, but the more I read, I think it does. I just have an unusual variety of it.... It was more difficult to find info on it. But, I did. I would really like to talk to people in my area and people who are affected with POTS, especially with symptoms similar to mine!!

Thanks!! Sorry for being so long winded.

Hugs and Prayers,

Mary

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Hi, Mary from OH--welcome to the board. I only have time for a quick reply -- but I can tell you that a 24-hour urine collection can give your docs the info they'd need as a first step to diagnosing adrenal tumor. It's extremely rare (but possible), which is why I and others have had that test as well. Ask them about it!

There's lots of great info available on this site (check out the what helps and what to avoid links off the home page) and read up about POTS on ndrf.com.

Best to you,

merrill

PS many people have found symptom relief with midodrine and/or florinef and can give you details about those meds...

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Hi Mary,

Welcome to the board. Part of the problem with POTS is that there are many different causes, and also other conditions which mimic the symptoms. It really stinks!

My BP used to fall upon standing, but these days it seems to increase. I think you will find that people's symptoms run all over the board.

Does your cardio specialize in POTS? If you have doubts about pheochromocytoma, you may want to have the 24 hr urine test before starting midodrine. Midodrine constricts your blood vessels and increases your BP, so that your heart doesn't have to work so hard to maintain BP. There are also some non-medical things you can do to bring up your BP, like wearing comperssion hose, having lots of fluids and salt. But you should talk to your doc before doing any of these, especially since your BP rose a lot while standing. (Actually, if you already have high BP while standing, I am worried that the midodrine would increase your BP even more...)

Good luck!

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Guest Mary from OH

Rita-

That was kind of my thoughts. But, yes, my cardio does specialize in POTS (actually all E/P things...). He is good. Funny thing, he treats my hubby for vasodepressor syncope!!! LOL!!

I think I'm beginning to understand the increase in BP thing though. I think my BP initially increases dramatically, but then dramatically goes back to it's normal low. He also said that the reason my HR is SOOOOO fast is that it is trying to compensate for the dramatic changes in BP.

But, I am still uneasy about the tumor thing. Also, I forgot to mention that I tend to be a tumor grower!! That doesn't help ease my mind at all either.

Thanks for your feedback!!

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mary,

just wanted to welcome you to the board!

i don't have any scoop on the tumor thing. but what do you mean you are a tumor grower? that doesn't sound too good! :huh:

i am glad that you have found a good cardiologist and one who is educated in POTS.

i also thing it is so wonderful that you found this board so early on in your diagnosis! hopefully we can help you every step of the way...and even if we don't have answers we have lots of support to give!

i know i would have been sooo much better off and better informed if i would have found this board sooner!

so, while it is not exciting to have POTS... ;) ...i am glad you found us right away and know what is going on with your body...

hopefully you can do what merrill suggested with the urine test. i did that way early on too...all was negative. but, it is good to rule out other possible causes of the POTS...and i always think we should go with out gut on things!

welcome!

emily

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