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:( Hello, tonight it the first time here! After 6 years of going to doctors, 2 heart surgerys, and a pacemaker put in, I found out I have had POTS all this time, I have been all over the midwest from trying to find out what's was wrong with me. I find out all along it was POTS. Now I been told that it going to be hard to treat as everything they have already done to my heart. Two weeks ago, they started me on, bupropion, potassium, midodrine, and theophylline er. The 1st week on these I felt great. I had more get up and go than I have had in a long time. I have been so tired for so long I couldn't beleive how good I felt, till this monday here I was taked to the ER. My heart was racing so much, and I couldn't breath. I have never flet this bad. THey gave me some IV fliuds and meds and then I came home. On tuesday I went to my family doctor, who listen to my heart and took an EKG and my heart was out of rhtyem. So he called my Doctor at the U of I and they say to stop taking the durgs. Then with 24 hours my blood prusser was so low I was starting to passout. On Friday I did pass out. So I called them back and they are starting me back on the theophylline to see how I do on the alone. I am just tired and sick of not being able to keep up with my 3 year old son. I have not been to work since Monday, and they are trying to work with me, but in the last year I have already been off over 8 weeks with all the sick leave, I can't lose my job it carries my medical insurance. I am just looking for support, trying to find others that know how I feel, and any one with ideas in any way to hope. I am so gald there is a place like this to come!
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Sorry that you've joined us because you've been so sick, but glad that you've joined us for support :(

Many members of this board have had a long road to their diagnosis, myself included. Some have also had pacemakers like you. I hope you find many friends and much help here.


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So sorry to hear of your problems. I hope you find some answers here. This is a very supportive group. Many of us have also been through the wringer trying to get answers. I also have a pacemaker. It didn't give me the "miracle cure" the doctor told me it would.

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Hi there! Allow me to introduce myself- I'm Persephone and I'm 23. I'm in the UK and I'm starting at Oxford in the Autumn (fall, in the states, I think). I have POTS- I got diagnosed in January 05 but I've had it atleast since Jan 1994!!! I also have Neurocardiogenic Syncope and Ehlers Danlos.

I'm sorry you're also at the end of a long, long road of misdiagnosis. At least you know now that you have POTS- and that this probably won't kill you. For me, finding out I wasn't nuts and that I had a condition which other people, too, probably had was just such a relief! Although at times I get so frustrated because ther is no magic cure. But atleast I can try different things and chat to my pals here on POTSplace. Everyone here is so friendly and understanding, we're bound to have you feeling better soon!

What surgery did you have done to your heart?

Lots of love and welcome hugs,

P x x :(

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Welcome to the site!

I hope you will learn some things of help to you here as well as get support!

I too have a pacemaker; for me it does prevent me from passing out when my heart drops too low (I had episodes where literally in slightly over a second and a half my heart rate would go from 130's to 17).

This is a very frustrating disorder as you have already discovered!

In terms of your job, I can relate to that experience as well. I had to stop working about a year ago and it's been a very hard adjustment for me. I miss my job very much even to this day!!

My best advice, since you don't know what is going to happen is to read your employers policy. Do you have access to Long term disability beneifts? If so, when would they kick in? I would also advise that if you do have to go on Long term disability go ahead and also start the paperwork for social security disability.

What type of work do you do? Another resource that was helpful to me before I had to stop working was a place called JAN (Job Accommodation Network). http://janweb.icdi.wvu.edu/

They were very helpful and with their advice and assistance, I wrote a letter to my employer requesting an accomodation and showed how the accomodation would benefit both of us.

I do hope you start feeling better soon!

Keep us posted.

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I want to thankyou all for the support, Knowing I am not alone makes me feel alot better, just knowing there are others out there that know how I feel!

Thank you! I means alot I been feeling alone!

Thanks Again,


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Hi Amy -

Just wanted to add my welcome. Sorry that you've had such a long road to diagnosis & proper treatment, but glad that you're finally heading in the right direction & that you found the forum. you'll find lots of great info & support on the site - both the main page & the forum. chime in as you're able & we'll look forward to getting to know you.

hang in there!


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