Hi there, Yes I have had this disorder since the 4th grade and was diagnosed 2 years ago with a tilt table test. What are you doing for your disorder as far as treatment?? Mine has been manageable on my own, but now I am in nursing clinicals in the hospitals and it has happened a few times. Meeting with my doctor this week to discuss meds.

Hannah

I was diagnosed with POTS in 2007, and I too was diagnosed after having an eating disorder. I was told at the clinic I was at that my orthostatic hypotention and my sinus tachycardia was because I wasn't drinking enough, so after they made me drink 4 gatoraids a day, and a blood test, they realized that I wasn't dehydrated. Upon my discharge I followed up with a cardiologist and was finally diagnosed. I was placed on Midodrine and it helped a bit, I was then diagnosed with AVNRT and had an ablation. The ablation helped at first a lot, but, now I feel like it's all coming back again. My heart surgeon said that it was very unlikely that my AVNRT could come back, but I'm super confused as to why after 6 months of my POTS symptoms being awesome, they are starting to come back again. I can't stand up for a long time, and I have had to go back to using the bracing harness on my service dog. (for a while, he only needed to do tasks related to finding someone if I fainted, or retrieving objects, especially dropped objects so I wouldn't have to bend over and risk fainting...) But yeah, very stressed, as since the ablation, the Midodrine doesn't work as well.

I have no idea! Im 33 years old I have never had any symptoms or major illnesses. One day at work (june 7 th) started to feel dizzy, got real hot, chest palpitating, fingers and hand got numb. I thought i was having a heart attack.Then i passed out for only a min though. I work in a hospital so they took me to ER. They sent me home said i was fine. Next day ended up in ER again, and again they sent me home i was fine. For three days i laid and did nothing. I then decided im living my life. Went shopping with my husband, not a good idea. I almost passed out again, I had to lay on the ground. Later that night i must have pushed myself. I thought i was gonna dye. My heart was pounding.


I called 911, they admitted. I stayed 3 days. Failed tilt table test in 2 mins. They put me on Florinef for a week, no success. Today is day 11 on Atenolol (beta blocker), kinda scary b/c my bp is low to begin w/ 95/65. It get down to 85/58at times. It did lower my heart rate from 115 standing to 85-90. However, it did not solve my problem. I still get the chest and throat tightness, dizzy and lightheadedness, brain fog and confusion all w/ standing only. Im fine laying and ok for the most part sitting. I just cant have my legs hanging. No symptoms until my legs are in a standing position. Does it take awhile for the beta blockers to work? Or maybe i need to try Midodrine (a vasoconstrictor) blood could be pooling in my legs. Did you try Midorine before. I feel like im not getting blood to my head and tht would explain my symptoms.

I am so completely confused and sad. 3 weeks is a long time for me to sit and do nothing. I went from full time job, part time school, being a mom and wife--------to sitting and doing nothing. Where is the cure, research, help? Sorry had to vent.
They think POTS