RobinB

Exactly! That's what I'm really looking for at this point. Of course I have had tons of blood tests, MRIs, Echos etc. done over the years with almost everything being normal, but that was pre-diagnosis. Now that I have been diagnosed I feel like I need to at least give a shot to finding a cause. I'm interested in her because I've read on here and other places that she investigates more than other doctors. Unfortunately I have called her office rtwice this morning and nobody has picked up. I left a voicemail and I'm hoping they will call back. I also requested an appointment with Dr. Barboi so I'll see which one gets back to me first. This is all just so overwhelming and I'm sorry to say I am letting it get the best of me. I really appreciate the time you took to answer my questions. Thank you so much!

Thank you ANCY. I agree I think I made my condition worse by being sedentary all these years. But how could I know?! I just knew I felt better when I was seated or laying down. I'm just waiting for the day I could even feel like 50% of my former self. I wish you well. Robin

Hi lewis! Thank you for your reply. I'm glad to hear the beta blockers helped you. I know I should try them. I have increased the amount of water I drink and I sometimes drink gatorade. The other day I tried a powerade drink that contains B vitamins and it was like the fog lifted and I could think again. That only lasted a few hours though. I just called Dr. Gilden's office and they are closed today so I will try again tomorrow. It sounds like you have made great progress since coming down with POTS. I feel the same way you did. It's like I can barely fix myself a sandwich. When you say you don't have answers do you mean they haven't found a cause for yours? Robin

statesof: Thank you so much for that! I did find Dr. Gilden on that list and I googled her and it seems she has pretty good reviews. My main issue right now is accepting this whole POTS thing without having a cause. They did prescribe me a beta blocker. I haven't taken it because I am extremely sensitive to meds and I asked her to help me find my cause before we try meds. The cardiologist I saw basically said there is no cause this just happens to some people and it will probably last for life. I'm going to see if I can get an appointment with Dr. Gilden! May ask how your experience was with her? I tend to shut down when I feel like they aren't listening to me. I also have difficulty with emotions. Suffering for so long...I have recently been crying in my dr appointments just from the stress of it all. They kind of look at me sideways when that happens. Thank you for your reply! Robin

Hi Everyone, I just want to introduce myself. My name is Robin and I live in Illinois. I have been sick for about 5 years and was just diagnosed with POTS on Christmas Eve 2015. My diagnosis came from a local cardiologist. Prior to that I had been shuffled from dr to dr and mostly told this was anxiety. Of course I knew it wasn't but tried hard to believe it. I tried therapy and meds for it which didn't help. I'm hoping to learn from other members about what I can do to manage my condition. I feel that I have gotten much worse since the diagnosis, but there could be some anxiety involved in that. Knowing what I have at first gave me relief but after researching it I feel scared and hopeless about my future. I have a 5 year old son who needs me and I feel like I can't be the mom I need to be for him. The cardiologist who diagnosed me did not offer any insight as to what might be causing this. She just advised me to drink more water and eat more salt. And to get exercise. I hadn't been exercising at all because everytime I did I felt I might die. I just joined a gym and I have been working out a few times a week on the recumbent bike. Afterwards I feel very symptomatic, but it does help me sleep better I suppose. I'm wondering if anyone knows a good dr for dysautonomia in the Chicago area? I would really like to see if I can find someone to search for an underlying cause. I'm not opposed to traveling out of state, but I would prefer to start closer to home if possible. I appreciate any advice anyone can offer me. Stay strong everyone! Robin