giftcreations123 Posted June 17, 2009 Report Share Posted June 17, 2009 hi..This site is wonderful and has helped me realize that i am not crazy.At 20 years old, I had mononucleosis and was very sick. Later developed Epstein Barr Virus and was never the same after that. I have spent years of tachycardia episodes, dizziness and more. Years of echocardiagrams, holter monitors and more only to be told I am fine. I have experienced dizziness, brain fog, tiredness, hyperventilation, and more symptoms for 15 years. The last 2 years, after much stress, I continue to experience days of just not feeling well, uncoordinated, can't look up or make sudden head changes, palpitations, lcant go into stores because standing and the lighting bothers me and anxiety. After reading about dysautonomia and pots, I realize that all those symptoms, all these years is pots. I think back to days when I would walk and somewhere and my heart would race and I would feel like I was going to pass out. I am now on a quest to find the right doctor. The problem is, I have such anxiety going to doctors because of fear that I will pass out, its hard. When I went to cardiologist my bp was 160/90 and he threw xanax at me. I know its not anxiety as an emotional issue for several reasons.So, thank you for the support...I am extremely frusterated as I cant enjoy my favorite shopping.Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted June 17, 2009 Report Share Posted June 17, 2009 Hello and welcome to the forum!I am sorry for what you have been going through for the past 15 years. It sounds as though you may certainly have dysautonomia. My condition was also triggered by a viral infection when I was 20 years old. I hope that the forum will provide you with a lot of support and suggestions. Good luck finding a doctor. What area of the country are you in? Do you have a good primary doctor to work with? Just keep in mind that many doctors are unfamiliar with this condition and the extent of its manifestations, so if you see one specialist and are not satisfied don't hesitate to ask questions and seek another opinion.Best wishes, Broken_Shell Quote Link to comment Share on other sites More sharing options...
giftcreations123 Posted June 17, 2009 Author Report Share Posted June 17, 2009 Thank you ..I am in NY...Its funny because I complain that the mornngs are worse for me, by afternoon I do feel a little better, and the vision issues . I aso feel like sometimes I dont get enough oxygen.My internist is not the greatest, she did pick up a small heart murmur though.Going to meet with her again.My cardiologist suggested checking heart rate and blood pressure throughout the day which I will do.Thank you again Quote Link to comment Share on other sites More sharing options...
shoe Posted June 17, 2009 Report Share Posted June 17, 2009 Hey,Isn't it nice to know you aren't imagining things? Things got markedly worse for me in the last six years (though I had many years before that of what probably was some kind of... I don't know) and even though I knew it wasn't something that was consciously (or even subconsciously) psychosomatic, there are so many times when tests are negative or inconclusive or written off as flukes (I have so many tests that are flukes that you'd have to wonder if the labs suck or if maybe they, y'know, aren't flukes?) and it all seems so whacked I started to wonder... Of course, the pinnacle of that for me was having an in-home physical therapy eval, and the (very very nice) PT asks me to get up from the toilet without using my hands to assist -- and I find I couldn't. I just couldn't. My brain is telling my butt to get up, and I get to a point, and my legs can't get me up any further. I hadn't realized, and I was like... I couldn't wrap my head around it. I couldn't wrap my head around why I couldn't get up, why my brain wasn't getting the message and my legs couldn't follow through, and why it wasn't showing up on tests... I was so mad, and I kept trying. The PT lady was so sweet, and she was like, "It's okay, I know you are trying. You just can't do it. If you push yourself any more, you're just going to hurt something else and get even more mad." But there's no apparent answer and you sure feel crazy (and then doctors have the nerve to see it happen and say, "You really aren't able to get up?" Finding a doctor who believes what you are going through is a great thing -- I had one for many years, but she was stumped, and passed me on to someone who managed to put the pieces in place. Now we're trying to find what's being disrupted and how it's affecting the other disrupted bits. I know my heart rate/bp is a big player, but I have the other stuff that might be directly related to blood flow problems or only peripherally and complicated by other autonomic disruptions.I can relate to the doctor anxiety. I loved my former GP, but inevitably I'd get sent to specialists who... well, as I said to her... I got to a point I couldn't do much at all, but at least I had stuff I could do, and I learned to live within those limits. It was because if I pursued feeling better, all my good hours would be spent going to doctor visits, and I'd have no ability to do anything I liked or needed to do outside of that. And it felt like going was just a waste, because there was no return on that time investment. I'd go, and I'd come home with no answers or help, and I'd still have stuff I needed or wanted to do that I then couldn't. Or worse, I'd go, get told that I was faking it or that I was making a big deal out of nothing, come home, feel worse about me physically and mentally, and still have stuff I needed or wanted to do that couldn't. If the outcome was no help, I decided that until things got waaay worse, I wasn't going to bother going to the doctor. I might as well do stuff I want if I'm just gonna feel yech either way.And I don't pay for insurance and co-pays to take abuse. But it's so hard to say that when you are in an office, in a paper gown, feeling crappy and tired and just wanting to feel better, and you get hit with the "this happens to everyone. Have you seen a psychiatrist?" And I had, repeatedly, and (god love him) he said, "What is it with the rest of the medical profession? Do they hate doing their jobs that much? I could prescribe you something, but it wouldn't work, because this isn't a psychiatric issue... and I don't want to complicate this any more for you in the long run."There are good ones out there. It just takes a whole lot of wading through to find them. As my present guy said, "You might be crazy, but it isn't causing the problems I'm seeing now. If you are crazy, it probably has a lot to do with what you have been through courtesy of feeling ill and being tossed around thus far."It's hard to hear the words "Keep plugging, you'll find someone who can help" when you haven't yet... but it is true. Hang in there, it'll happen.shoe Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 17, 2009 Report Share Posted June 17, 2009 Hi! If you go on the Dinet home page there is a list of doctors in your state who diagnose and treat POTS. I hope you can get some answers! Quote Link to comment Share on other sites More sharing options...
bjt22 Posted June 17, 2009 Report Share Posted June 17, 2009 Isn't it amazing when it all comes together?My story is a bit of a backwards version of yours. I have had symptoms for as long as I can remember, but I was the one who made nothing of them, while I felt like medical professionals were hounding me for being "different". I used to get really tired of hearing how if my heart kept beating at twice the normal rate it would only last half as long as it should, or that there was something really "not right" about my cardiovascular system. Also always heard the "did you have rheumatic fever as a child" question on a majority of visits. This all made me tune out, and I didn't seek a diagnosis until I literally couldn't get out of bed. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 17, 2009 Report Share Posted June 17, 2009 Hi Gift,What part of New York, I'm in central/western New York. Rochester has been a challange for me finding doctors also, but can give you the names of a couple. Welcome to the forum it has been a life saver for me also. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 17, 2009 Report Share Posted June 17, 2009 Welcome!You do sound quite a bit like me. I hope that you are able to find a helpful dr. soon! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 18, 2009 Report Share Posted June 18, 2009 Hello,I just wanted to say welcome also. This isn't an easy road to go down, but getting the dx. finally gave me relief that I wasn't crazy. Infact, when my cardio walked into the room after many tests and after LISTENING to me he said, "It's not in your head or in your heart, you have really have something it's called POTS." "Everything you've been trying to tell everyone is real." "It a Dysautonomia causing your heart to beat way too fast." This was after a level one and level two stress test, then bunches of breathing tests ruling out I did not have asthma. I had been on meds for asthma for about 15 years and then the TTT broght us to POTS.It was a mean ulgy road and I think it may have been for most of us here. Sadly we get labeled, but when our docs really stick with us and get to know us they see the nicest patients of all. We have to be advocates for ourselves and then for others. Sadly, others don't want to listen when we see signs in them. I wish you the best of luck and may you find your answers soon. This is a wonderful place to come to and I'm very thankful this forum is here for all of us to meet and share."I think your Gonna like it here!" Good Luck ~BellaMia~ Quote Link to comment Share on other sites More sharing options...
giftcreations123 Posted June 18, 2009 Author Report Share Posted June 18, 2009 Thank you very much for the warm welcomes...I sit here with tears in my eyes as I really realize that I am not crazy...Hopefully we report only good news..thanks again! Quote Link to comment Share on other sites More sharing options...
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