sstephan Posted April 18, 2006 Report Share Posted April 18, 2006 Hi,I am new to this forum but just wanted to post that I feel very lucky to have found this place on the internet. I cannot believe what I read on the posts because I can relate to so much of it! There were times when I would wake up so nauseated, shaking, tachy, faint, etc etc and wonder what in the world was wrong with me. I left so many doctor offices in tears after being told that I needed to see a psychiatrist and was asked question after question about my "home life" and "stresses at work". It was an awful feeling and I began to question if I was just imagining the problems. I was afraid to tell my doctor about all of the new symptoms I was experiencing because he already thought I was a freak. There are some things I just don't understand though. I was first diagnosed with snycope from a cardiologist when I was 18 due to passing out when I would work out. (and several positive tilts) I was put on a beta blocker. Things got better and they took me off the meds saying I grew out of it. NO problems until two years ago and bam! everything spiraled from there. I began having problems with many systems in my body. Why couldn't anyone see the relationship between the systems? The GI doc, neurologist, cardiologist, and rhemetologist (sp?) would only focus on "their system". I knew that somehow this must all be related. It was finally my internist who said that the autonomic nervous system could maybe be responsible for this. My cardio actually told me that the GI system is not involved in POTS and that anxiety can manifest itself in "stomach aches and pains" as he called it. Thankfully, I found Dr. Gilden at St, Mary's who specializes in autonomic dysfunction. I have only seen her a few times and so far she is working on trying to figure out if there are any underlying factors causing this. She is looking at blood sugars as they are high and trying to see if there is a link. I just don't understand why this illness is not understood. Why is it that an emergency room doctor cannot understand this? If I ever go to the ER for a bad attack, I end up waiting for hours for them to just discharge me home and told to "go take some Paxil. This is not an acute emergency- it is a chronic problem and you need to see a specialist- duh!" What I don't understand is that I can feel just fine for a period of time and then bam! out of the blue symptoms hit again. I may feel badly for a week or so and then get back to normal for a little while. When I am not sick, I think about the illness and think this really isn't so bad. But then I get sick again and things turn around on me. I function okay and do hold down a full time teaching position. However, is there a progression to this illness? I have noticed that now things get black and fuzzy almost everytime I stand up from a kneeling position. (i teach little kids) Also, during a really bad tachy episode I have to stay calm and tell myself that this too will pass. I guess my question is- has anyone actually passed away due to an autonomic episode? Does the heart always right itself when this happens? This is what scares me the most. And the severe stomach/back pain that I experience. Will this disease progress? And why can't doctors answer these questions? I just don't understand it and it is very difficult to explain to others. I have seen others mention autonomic crashes. Do you have periods of time when you feel okay and periods of time when you are really sick? What precipitates this? I know summer is hard for me and lack of sleep can figure into it. Thank you for listening. I cannot believe that there are other people who are experiencing this! I just keep thinking about something my mom told me when I was a little girl- God never gives you more than you can handle. (well he must think we can all handle quite a bit!!)Susan Quote Link to comment Share on other sites More sharing options...
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