southbel

So, I just came home from the TTT. Not fun but definitely wasn't as bad as I thought it would be. They hooked me up to everything and I laid on the rather uncomfortable table for over an hour before it began. My baseline HR was 66 and my baseline blood pressure was 100/68. On the tilt, I immediately felt dizzy and could tell my heart rate went up. During the test, I did not pass out but did start sweating and my vision got really difficult to focus. I became a bit short of breath, had a bit of a tremor issue and just felt overall poor. My feet really started to hurt and burn a bit the longer it went on. I didn't mean to but I know that I kept bending my knees and slightly fidgeting to stave off worse symptoms. It was really hard to not do this as it has become the way I keep the symptoms from progressing. The doctor said he wasn't going to do the second part of the test with the medicine they inject because I was too young (I'm 39) for it to be of any use. He said that I had a perfectly normal TTT. My heart rate went up to around 110 in the first minute of standing and stayed there minutes. My blood pressure went up to 120/80-130/90 and stayed there for the entire 30 minutes. The doctor told me because I didn't pass out and I didn't have a drop in blood pressure that I was perfectly fine and suggested I see an ENT. I am a little confused because he seemed to be confident on my problem yesterday and even though I gave him my symptoms and how my heart rate, etc reacted. I am starting to feel a bit like a crazy person because I figured I met the criteria for POTS but the doctor said my blood pressure didn't decrease and thus I do not have anything wrong. Any words of wisdom on this? In all fairness, he never said I have POTS just that he 'knew' what was wrong with me and that the TTT would show the problem. The nurse did tell me that they rarely do tilt tests and this was the first that doctor had done in over a year. Does that have an impact? Am I really just barking up the wrong tree? I would really like to get my life back now!!

The doctor gave me some information about my tilt table test so I was able to understand what they are going to do. He said that they would first do some blood work and other tests before the TTT. Then they would first have me up for 45 minutes. After that, they are going to give me adrenaline and then another 45 minutes up. He doesn't think I'll last that long and quite frankly, I can't imagine standing that long. I've tried the poor man's tilt table test I've read about and the longest I've ever lasted is 11 minutes. How does the poor man's version compare to the TTT? Is one more specific than the other or have a longer/shorter duration? I know they want me to fast and not even have water starting at midnight tonight. My own poor man's version was not done in a fasting state. I'm actually surprised I am this nervous about this test. I've never been nervous about anything else before, even surgery. I think it's the idea of passing out that bugs me so much. I hate the feeling so very much that I am genuinely dreading if it happens tomorrow.

I've been reading so much on this board in recent weeks and feel like I finally found a group that understands! Just a bit of history on me. I've always had 'issues' with my low blood pressure that would cause occasional faints, headaches, etc. However, it was intermittent and not severe. Suddenly, on August 24th of this year, I had a very bad tachycardia episode and thought for sure I was having a heart attack! As my husband rushed me to the ER, I passed out. Once there, they did all kinds of tests: stress test, echo, scan, blood tests, etc. Everything came back normal except for my elevated heart rate. After some beta blocker by IV and fluids, I seemed fine and was discharged. Problem was that I never really got better. I continued to have episodes of passing out and high heart rate just on standing. I've lost 15 pounds just from the nausea alone. It's been pretty severe since that episode. Went to my PCP and she suggested thyroid as she has every other time I've gone for fainting issues. It was, as usual, negative. Then she decided it was anxiety and prescribed me Xanax. At that point, my husband lost it because he was sure it was NOT anxiety and he's been witness to this so many times that I can understand his frustration. Found a new doctor and within the first 10 minutes, she felt confident it was some type of dysautonomia. Was referred to the Cardiologist who took less than that to decide the same thing. Onto the Electrophysiologist today and he described my symptoms to me - he was spot on! I was pretty symptomatic today and he took my BP and pulse in his office sitting and standing and there was a significant difference. He scheduled me for a tilt table test first thing tomorrow morning. He said they want to move fast on this because the severity of my symptoms are pretty bad. I am so happy to be getting something done because I do not last longer than 10-15 minutes standing right now but the TTT makes me really, really nervous. I know how absolutely horrible I feel when I pass out or even start to pass out. When I've tried the poor man's tilt test at home, I never make it past ten minutes and my machine can never get that last reading because it just errors out. I think the part that terrifies me is that at home I can immediately lay down but on the test, I will be strapped in and standing through the pain as the blood pools in my legs, the nausea, the shortness of breath - argh!! Am i worried for nothing? Is it really that bad? And in another irrational thought, I'm terrified that it will be the one day that it doesn't show anything! I am having a really hard time right now and just living a normal life has been near impossible for me in the last month. Oh and just one more question. Did anyone have their symptoms suddenly get severe or start out of the blue without anything that seemed to cause them? I was just making my daughter's 16th birthday cake when I had that first bad episode and it's been very bad every since then.