Hi I am new. I was diagnosed with POTS this year. I hope you don't mind, but I need to tell my story to someone who might have some insight. And since all my symptoms seem to be pointing me to POTS over and over again, I am sharing my story with you. In December 04 I had stroke type symptoms (ie heaviness on my RT side followed by numbness, then neuralgia as the numbness wore off) It was hard for me to brush my hair for a while and write checks for awhile. I felt like the right side of my body was dying. I felt like I had been slammed up against a wall. All that, was followed two weeks later with extreme dizziness and more fluttering, heaviness and pain in my chest. I went to the ER Christmas night. They gave me aspirin and nitroglicerin patch. That helped so much! The waves of chest pains, heaviness and tackycardia left for at least a week, but then returned but not as bad. Then I went to the ER again with the same heaviness in my chest along with strange feelings in my right eye. My eye hasn't been the same since. The muscles that help my eye look to the upper right get fatigued very easily and can't look up as far as my other eye. In the end all of my tests for stroke came back negative And I was prescribed CALAN for my supposed migraine which made the heaviness go away for months but made my left arm very sore. But my dizziness remained along with tingling and numbness. My neurologist diagnosed me with POTS type 1. On top of the stroke like symptoms, I felt like my organs had stopped functioning properly for a day or so, around the same time was having the initial stroke-like symptoms. I started feeling like I had a urinary tract infection so I started drinking lots of water. (that helped alot) I could also tell my bowels weren't feeling right. But what could I do for them? I didn't have a BM for a while and when I did, I found blood clots in my stool. Then ended up discovering I was cronically constipated after my Fam. Dr sent me in for an X-ray. I started seeing a GI specialist and have ruled out cancer. Every thing he looks at seems to be normal. My Fam. Dr.. thought it best to treat my symptoms separately. I have gone along with that, but I have felt like these symptoms were all related. Florinef has done wonders for me. My dizziness is mostly gone along with the anxiety I was feeling. The numbness and tingling is gone except for a place in my cheek. I get a sore pressure type feeling on the RT side of my head. It radiates down to my nose and chin and my nostril closes and that side of my face feels heavy and swollen and my right eye doesn't move well. I have also lost some sensation on the right side of my face. When I drive with the AC on in the car, my left check is much more sensitive to the cold than my right cheek. Has anyone experience anything like this with their POTS? One of my fears is that I could be developing shy dragers syndrome. Am I worrying too much? I probably am. Thanks for listening! Veryperry
