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Newly diagnosed with POTS


Julie
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Hi,

I just found this website, and it's wonderful to be able to talk to others going through the same thing.

My cardiologist actually diagnosed me with Ventricular Tachycardia and Orthostatic Intolerance. And when I looked this up, I found that I have most of the symptoms of POTS. I think I have had it mildly since I was in my early 20s, and I am now 34. About a month ago, I was put on Paxil for my lightheadness and brain fog. And after the 4th dose, I had chest pain, shortness of breath, extreme lightheadedness, my arms and legs and face went numb, and my heart rate was up. So, I called my PCP and he sent me to the Er. They admitted me and kept me for 4 days. They did all kinds of tests. They put me on Toradel which made all my symptoms 10 times worse. And then I saw a cardiologist, who sent me to a more specialized cardiologist. And this is where I got my diagnosis. I still have to have the tilt table test on Nov. 12, before any treatment is started. I had never heard of an intolerance to standing up before and I didn't really believe the cardiologist at first, until I came home and researched it. And it is unbelievable how many of the symtoms I have. I have been feeling really bad since this all started on Sept. 23. I have been extremely lightheaded, numbness in my right hand, chest pain, fast heart rate, shortness of breath, and these are only my worst symptoms. I definitely get much worse when I've been standing, and the steps have been killing me. Sometimes when I stand up I can feel the blood flowning in my hands, face, or feet. And then they start to hurt. So, I am trying to not do as much until I start some kind of treatment. I certainly hope something will help me. I homeschool my 7 and 9 yr. olds, and I have a 2 yr. old. So I can't sit down all day.

Julie

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Hi Julie:

I'm glad you found us!!

I am sure you will find all kinds of useful information here.

When I was first diagnosed, my symptoms were probably at their worst. I think most of the reason was because of the stress of not knowing what was wrong, trying to fight my way through things because everyone kept telling me I was okay so I MUST be, taking meds that were not good for me in hopes of feeling better that actually aggravated things so much worse. Once I was finally diagnosed and found the right regimen, things have calmed down a bit. I still have significant impairment, some days worse than others, but like I said much better.

What you said about homeschooling and not being able to sit all the time, when you are feeling better I believe that sitting all the time is actually a bad thing. I feel much better when I spend some time walking around and have time on my feet and then rest, usually lying down for a while, for different periods during the day. Sitting all day or standing all day are both bad, though standing would be much worse. So you may be able to continue with the home schooling once you are feeling better.

I think everyone here will agree that you need to be so aggressive with information and your care, and you need to find a doctor who knows about POTS or who is more than willing to learn and listen to you and read the info you bring him/her. That will be a challenge, I'm sure. I was lucky enough to have a POTS doctor 20 minutes from my house.

Good luck to you and I hope you get on the right track with feeling better soon.

Elaine

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Welcome to the POTS boards, it really is a great place to come and share your experiences. I agree with Elaine that the symptoms are usually worse at the beginning, and as time goes on and you find a treatment that works for you, they generally improve. I definitely still have good days and bad as well, but I lead a fairly normal life right now, compared to a bedridden one 2 years ago- and I also firmly believe that walking and exercising are the key to feeling good- when I couldn't get out of bed, I was much, much worse!! I now have a 10 month old, whom I am home with all day, and I definitely do my share of running around- in fact, I think I only sit still when I'm on the computer :) Although I'm exhausted ALL the time, I feel that I prefer that over being deconditioned. I try to take at least one rest during the middle of the day, if I can, and just prop my feet up or doze off for 20-30 minutes.

It's great that you've found a doctor who was able to diagnose you- this process can take months or even years for some people who can't find the right doctor- and this is so very important for your treatment and coping with this group of disorders. I hope we see you here often, and keep us updated on your progress!!

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