BendyScooby Posted July 16, 2006 Report Share Posted July 16, 2006 Hi guys,even though, after my grusome tests in April, they said I didn't have autonomic dysfunction I've ben feeling really ill. I've been fainting, feeling dizzy and sometimes like the room is spinning. I also get a funny feeling in my head and my veins are swelling up big time. I'm also having convulsions, feel irritiable and am constantly tired. The constant thirst is driving me nuts too. I went back to my GP and he's now referring me to a local neurologist. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted July 16, 2006 Report Share Posted July 16, 2006 hey there, sorry to hear of your symptoms....what tests did they run on you in april? what was the explanation they gave you as to why they dont think it's autonomic dysfunction? Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted July 16, 2006 Author Report Share Posted July 16, 2006 They didn't say why they thought I didn't have it. They did a tilt table test, froze my hand, gave me breathing excersises, took my blood pressure and did blood tests. They couldn't do the 24 ambulatory blood pressure test as my veins were too painful. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted July 16, 2006 Report Share Posted July 16, 2006 Sorry to hear that you are feeling awful. Have you had an EEG to test your brain waves? Have you had an ultrasound of your carotid arteries? Cardiac ultrasound? Thyroid tests? And the list goes on. It seems like you should be thoroughly evaluated for fainting. When my husband fainted last month at a Walmart in Florida (I was in Maryland at the time), he was ambulanced to the hospital where they kept him for a few days to rule out various heart and brain problems. It turns out that his problem was related to an allergic reaction. I am puzzled as to why your doctors are not more concerned about your fainting episodes, particularly after they ruled out autonomic system problems.Keep on them to find out the source of your problem! Feel better.Lois Quote Link to comment Share on other sites More sharing options...
cardiactec Posted July 16, 2006 Report Share Posted July 16, 2006 how often are you passing out? has your bp ever been taken before or after you have passed out? what happened to you on the tilt test? did it provoke the symptoms you typically have? Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted July 16, 2006 Author Report Share Posted July 16, 2006 Thanks for your help and concern guys. I've had thyroid tests and ECGs. Haven't had an ultrasound on my heart on a few years though. had a full blood count and diabetes tests. yes the tilt table brought on my symptoms including fainting. Have had an EEG too. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted July 16, 2006 Report Share Posted July 16, 2006 wow, if your tilt brought on your symptoms and even passing out, i am surprised that they refuted a diagnosis of autonomic dysfunction. what was your pressure? some docs only look at numbers (systolic pressure) and not symptoms. if they cant back up a criteria of a specific condition (such as a 20 point drop in pressure within a minute of being upright, hence the diagnosis of Neurocardiogenic syncope, at least i think that is the "criteria" for such a diagnosis), than sometimes they shy away with diagnosing a person with such a condition. but geez, if you are passing out, there's gotta be something going on! what did you heart rate do with the pressure during tilt table? Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted July 16, 2006 Author Report Share Posted July 16, 2006 wow, if your tilt brought on your symptoms and even passing out, i am surprised that they refuted a diagnosis of autonomic dysfunction. what was your pressure? some docs only look at numbers (systolic pressure) and not symptoms. if they cant back up a criteria of a specific condition (such as a 20 point drop in pressure within a minute of being upright, hence the diagnosis of Neurocardiogenic syncope, at least i think that is the "criteria" for such a diagnosis), than sometimes they shy away with diagnosing a person with such a condition. but geez, if you are passing out, there's gotta be something going on! what did you heart rate do with the pressure during tilt table?Don't know what my heart rate did they didn't say. My blood pressure dropped dramatically though. Quote Link to comment Share on other sites More sharing options...
Babettegall Posted July 16, 2006 Report Share Posted July 16, 2006 I'm so sorry you are feeling so poorly and not getting any answers as to what's causing all of it. I hope that one of the docs finds out what's truly going on and get's you feeling better soon! Quote Link to comment Share on other sites More sharing options...
photchkiss Posted July 16, 2006 Report Share Posted July 16, 2006 Sorry you're feeling so poorly.Which type of EDS do you have?My experience with doctors regarding EDS related dysautonomia is that they are clueless. I've only met one physician who gets it--despite all the research that shows a meaningful link.Anyway, my autonomic tests showed the elevated heart rate on tilt (30-35 BPM increase the entire time I was upright) yet the neurologist wrote in his report--a remote possibility of POTS. It never ceases to amaze me that despite my description of dysautonomia, doctors are extremely reluctant to call it dysautonomia or POTS. Anything borderline seems to be left in no man's land. And of course whenever I'm in their nice air conditioned offices, sitting down for 30 minutes waiting for them to enter the room, my heart rate is less volatile and only jumps 10-20 beats when they do a casual exam. It's so frustrating. Yet I can leave that room, go outside where it's warm, my vessels dilate, and then my heart rate can jump 30+ beats just like that.All I've learned is to keep reading, researching and advocating for your health. See doctors as resources to help you, not as authority figures to paternally solve your ills. It's frustrating, but it's reality.We're all here for you, I hope you start feeling better,Joe Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted July 16, 2006 Report Share Posted July 16, 2006 i feel like joe about the air conditioned offices and the heat! on my first ttt i fainted and on the second i didn't but i was still told i had POTS. i agree with the others as well about how they should be taking your fainting more seriously. as far as you being ill, we have all been there and we all understand. you aren't alone. it is awful that we have to experience it but we just have to keep our heads up and look forward to our "good days". hopefully you be back to feeling better soon and hopefully you will find the help that you deserve. i wish you the best. take care.dionna Quote Link to comment Share on other sites More sharing options...
BendyScooby Posted July 17, 2006 Author Report Share Posted July 17, 2006 Thanks again guys...Joe I have EDS3. Funny you should menion that coz when I was lying on the table the doc mentioned how slim I was because she couldn't keep the pulse thing on my finger and seemed surprised by it but as I'm Marfanoid and have exremely long and thin fingers as a result she really shouldn't have been. I told my consultant who reffered me about the lack of diagnosis and even he seemed surprised. Maybe the local heurologist will pick something up because the dysautomnia tests were carried out in London. Quote Link to comment Share on other sites More sharing options...
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