lrcaraway

I don't really know you Erika but I would be really frustrated too. Your thinking finally I am going somewhere that knows what I am dealing with and you get the same old stuff you've been getting by doctors that just don't know anything about dysautonomia. And traveled a ways to get that treatment. From what I understand, and forgive me if I am wrong because I am really new to all this, this is why people go see Dr. Grubbs. He really explains the testing and helps get you started on a treatment plan. Don't forget we POTS people are really strong. Simply, because we are so desperate to get back to normal we are willing to do anything to make it happen. You know walk on coals, whatever. Think positive. At least now, you DO have some results to tests. Next step, find someone who can explain it.

Thanks Mighty Mouse! I have been to that website and read the handbook. I am thinking about printing it out for some of my family members. I was wondering about the forum over there. I tried to sign up but I noticed that it isn't working right now. Is that a temporary thing or have they decided to stop it all together?

Hi Rene! I have been waiting for my account to get activated to reply to your message. I am newly diagnosed for POTS, sort of. One EP did the tilt table test and said I tested positive. He referred me to another EP who isn't so sure. I definitely have a hard time standing up for even small periods of time and my heart rate increases. Still waiting for the 24 hour urine test and blood test to confirm. I am also on a thirty day monitor because I am waking up to nighttime tachycardia. My story is a little weird and must be told to get to your questions. I started having SVT attacks in November. I was told they were the AVN-RT type. I had them weekly for a month. My heart rate would get up to 250 and wouldn't come down unless I went to the hospital for adenosine. Saw an EP who suggested lifetime medicine or an ablation which was supposed to be a quick easy fix. I chose to get an ablation. The EP wasn't confident he got rid of what he needed but said tie will tell. Three days later, I went to the gym to work out. Felt funny afterwards, went to hospital and found out I had a small pulmonary embolism. I probably got it from the procedure. That hospital was a difficult one for me. I started being sensitive to everything: benadryl, iodine, morphine. Also, during my visit, I had another SVT attack in my sleep which confirmed the ablation didn't work. My EP put me on Flecanaide. I was also put on coumadin (warfarin). I don't know why but I felt like crap afterwards. I thought it was the flecanaide so I wanted off of it and had another ablation a month later. Almost three months later, still felt like crap. I looked up the side effects for warfarin and it seemed like I had almost every side effect. I still have to take it for another two months so I am hoping that it will give me some relief. I think that is why the one doctor is hesitant to label me POTS because he think I need more time to get off of the blood thinners and allow my body to heal. So I have had similar experience as you but right now I am so confused as to what is what and why. I am trying to accept that I just don't know and may not for awhile. I will post again about this subject in July when I am off this dirty drug.

Hello everybody! Newbie's first post. I just watched the episode on youtube and her initial symptoms seem a lot like mine. Except mine just started about a year ago. I was curious if anybody knew how she is doing now. The show kind of glossed over that part.