parkersmom

I understand your need for knowledge concerning this illness. As an adult with this disease I long for knowledge and could not imagine if it were my child I needed it for instead of myself. I am so sorry for your loss. There is a doctor in Monroe, LA who has treated several children with POTS. He is the doctor of my nephew who was born with 5 holes in his heart and is now a healthy normaly little boy. I will put the address and number below and you can follow-up with this doctor if you wish. He is a world reknowned pediatric caridologist and flies all over the world to give lectures and teach procedures. I hope you can find help somewhere. Best Wishes, Jamie Jordan Dr. Terry King 3510 Magnolia Monroe, LA 71203 318-323-1100

Welcome to the group. This is one I am sure you did not aspire to land yourself in, but you will find having friends in the same places is quite comforting. I to struggle with the fatigue. I have terrible sleeping patterns despite the large doses of sleeping medications they give me. For the past two weeks I have hardly been out of bed. But if you wait long enough a good week will come around. They always do. In the mean time I just look -up all the good bargains on the internet so I will know how to spend my money quickly and efficiently. Ha/Ha. Hope you are feeling well soon. Happy Thanksgiving. Jamie

My current medication is working for me better than anything I have tried so far and I have started seeing a nuerologist who says he can help with the nerve and joint pain. I am very excited about that. I have wondered about Yoga. Have any of you ever tried that? My doctors at Mayo mentioned that it might help relieve some of the tension in my muscles. It is a thought I guess. I am considering going to a pshycologist. It seems like a lot of the people on here have and maybe that would help me deal with the chronic illness better. The down side is I don't want to be labled crazy at 24. I am a good mother and wife and certainly not crazy. Ofcourse that is probably just me dealing with my own sterotypes. Wouldn't it be great to just be my old self again!!! Jamie

I appreciate all of your comments. I am 24 and have had POTS for about six months. I was formally diagnosed in May 2005. I am usually able to deal with it quite well, but every once and a while I just get overwhelmed. I really think finding this board will help. I just wish there was a way to educate the public better about our syndrome so that we didn't have to feel so alone in our sickness. It would be nice to have the universal understanding other illnesses receive. Ofcourse until that day this little group of us is a real comfort. Thanks again. Jamie

I have recently returned from a trip to Mayo Clinic in Jacksonville Fl. I was sure they would have some lightbulb moment and find the real source of my grief and surley I would not be left with this mystery diagnosis of POTS. Well in Fairytale land that might have happened, but not here in my world. All of the test showed I have a clear case of POTS. It is so hard to understand how something could cause such mayhem in your body and yet the vast majority of the medical field is completely uneducated about this syndrome. I have often said I would rather be missing an arm so that the cause of my disability would be obvious and I would not have to spend half of my life defending myself against personal attacks. It seems there are treatments options for everything from hangnails to brain tumors, but somehow we fall by the wayside. It is nice to have a place where other people can help you feel that you are not crazy. This website it like finding that little place where every body knows your name, but here everybody knows your pain. Thanks for listening. Jamie